By Romana Hasnain-Wynia, MS, PhD
While it’s thoughtful to give flowers to your wife or mother on Mother’s Day, we know that you support the women in your family year-round. Being supportive can be particularly challenging when a woman you love is facing a serious illness, such as breast cancer.
What can you do to give the most useful care? And how can you take care of yourself as well? A husband or partner, for example, may be frightened, frustrated, and tired but still wants to be the best possible partner.
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. Her cultural heritage—her parents came from Puerto Rico—emphasizes protecting the family. “So, you keep a lot inside. I still do,” she says.
A study now under way aims to find out whether culturally relevant workshops for women with breast cancer and their family caregivers helps them both through the difficult period.
Nueva Vida
The study funded by the Patient-Centered Outcomes Research Institute (PCORI), is evaluating a program of group sessions developed for Latina women with breast cancer and their spouses or other caregivers. The study is asking whether the program, called Nueva Vida, can improve quality of life for the women and their caregivers, their satisfaction with the care they received, and treatment follow-up.
The study is led by Kristi Graves, PhD, of Georgetown University in Washington, DC. Her team is enrolling 100 Latina breast cancer survivors and their partners.
Participants include Latinas who have been diagnosed with breast cancer, regardless of stage or time since diagnosis. Each is bringing along one caregiver—a spouse, partner, adult child, other family member, or friend. Survivor-caregiver pairs are randomly assigned to take part in a specially designed workshop or to receive usual care. The workshop is based on a program developed jointly by cancer survivors and mental health professionals at a Washington, DC, cancer-support organization called Nueva Vida.
Survivors 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
Including caregivers in this study is extremely important, as their needs are typically unmet, says Sampayo, who is a co-investigator on the study. “The caregiver tries to help and support the survivor, but they’re not receiving the support they need,” she explains.
Says Roberto Londono, who attended the Nueva Vida caregiver program and 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.
The workshops in the study will be led either led by mental health professionals or by trained survivor peers. 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.
Patients As Partners
Breast cancer survivors and other stakeholders are providing critical input to the study so that the workshop focuses on the topics most important to them. These include improving communication with family and healthcare providers, managing treatment side effects, and intimacy after cancer.
Graves says working with survivors and caregivers 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.”
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.”
Nueva Vida is one of four community-based cancer-support organizations that serve as study sites. The others are Latinas Contra Cancer in San Jose, California, and Gilda’s Club and SHARE in New York City.
