When Anu Gupta had her first bout with breast cancer at age 29, she was reluctant to tell her parents.
“It was something that was never talked about in India when they were growing up,” said Gupta, a San Jose, California, resident. “There is this stigma in the South Asian community: What will society say if my daughter or mother has a breast cancer diagnosis?”
Gupta was taken aback by the diagnosis because she was unaware of any family history of the disease. But how could she really know? These matters were hidden.
Stigma can exert a powerful influence in the treatment and recovery of South Asian women with breast cancer, said clinical psychologist Ranak Trivedi, PhD, who specializes in understanding how social, cultural and interpersonal factors impact outcomes for chronically ill people.
The stigma may prompt those with breast cancer to delay care or to avoid seeking support from a community that is otherwise traditionally all-embracing, said Trivedi. That stigma was a common theme in a study she recently led on the psychosocial needs of South Asian breast cancer survivors and their caregivers living in the United States.
“Because of stigma, the individual may feel isolated because it’s not easy to share this as a diagnosis,” said Trivedi, a Stanford School of Medicine assistant professor of psychiatry and behavioral sciences. “There are many myths about breast cancer — that it is contagious or that a woman must be deserving of this disease. Girls may not be marriageable if a family member has had cancer. There are layers of stigma, depending upon how conservative the families are.”
“Even when women know they have something horribly wrong, they don’t seek care because they don’t want to bare their breasts to doctors,” she said. “So people delay care and wind up dying from a disease that could have been prevented or managed.”
Easing the path to treatment
Trivedi, who helped care for her mother when she had breast cancer, said she undertook the study because so little is known about the kinds of care and support South Asian women need.
Her goal was to help ease their treatment and recovery by improving their emotional and psychological support and making culturally relevant resources and services available to them.
She said her mother’s cancer diagnosis 20 years ago became the catalyst for her career focus on caregiving issues, as she observed how her parents looked after each other.
“I saw how they both had the other person on their mind — the person they were caring for. That sparked my interest in how people manage chronic or serious illness at home and set the stage for all the work I’ve done since,” she said.
South Asians are among the fastest-growing ethnic minorities in the United States, and breast cancer rates are rising along with the population. Trivedi said incidence of the disease is increasing at a rate of 1.9% a year, with 1 in 8 South Asian women in the United States facing a lifetime breast cancer risk. Unique cultural influences can impact their care, she said, yet very few researchers have sought to document or understand their health care experiences.
Her study, called South Asian Family Approaches to Disease, or SAFAD, involved interviews conducted via video conference and follow-up surveys with 26 breast cancer survivors and caregivers in the United States.
The researchers asked them about issues such as quality of life, depression and anxiety, pain management, their adaptation to American culture and their ability to navigate the health care system. The study was conducted between the fall of 2020 and the spring of 2022, but the results haven’t yet been published.
Trivedi noted that the culture in India is a collectivist one, meaning that when someone becomes ill, the community rushes to embrace the person and make his or her daily needs a group priority. But South Asian women who live in the United States lack this valuable communal support, so they often experience a sense of isolation, she said.
They might be fearful of sharing their diagnosis — sometimes even with older family members living in their home — so they do not have access to a broader network of people on whom they can depend for emotional and practical support.
“They felt that if they were in India, they would get a lot more help,” Trivedi said. “They would have more hired help to do laundry, wash dishes, help with cooking and clean the house. Here, it was falling on the nuclear family. With the woman sick, it ended up falling to other people who were not prepared to take on that role. We heard from the women survivors that they still had to care for other people.”
She said caregivers who were surveyed also reported feeling cut off from the community: “They were feeling ignored by the health care teams and by the friends and families too. People weren’t asking how they were doing.”
A need for culturally
While the participants said they trusted the medical care system, they felt there was a lack of culturally relevant materials and resources, including information about the disease in their native language so they could refer to it and share it with family members.
“People want something they can take home, when they are not groggy or terrified, something that tells them what their treatment choices are,” Trivedi said.
Gupta, who was one of the study participants and said she received excellent medical care, echoed these sentiments.
Though she hesitated to call on her family for help during her first brush with cancer, she ultimately did so because she was so sick, she said. When she suffered a recurrence two years ago she alerted her parents, who now live in England, and they came to California to spend months taking care of her. They accompanied her to doctors’ visits, but Gupta had to explain what had transpired, which she found exhausting.
“My parents found it hard to digest the information coming to them,” she said. “Do I think it would have been useful for them to talk to someone in their language? One hundred percent. For my parents, it was hard to process all of that information in English. They would also have been inclined to ask more questions if they had been able to speak to someone in Punjabi or Hindi.”
Even the visit with the nutritionist did not seem culturally relevant, Gupta said. “It would have been helpful to customize that because our diet is very specific,” she said. “I know my mum said, ‘We cook a lot in ghee and butter. Is that OK? What about the spices we use?’”
Trivedi added that advising patients to eat more protein, like white meat chicken or lean red meat, is not helpful to an Indian who is a vegetarian. “There was a gap, at times, between what the individuals were looking for and what the care team was providing,” she said.
Trivedi recently presented the study results at the Society of Behavioral Medicine and the Gerontological Society of America and plans to submit the findings to a medical journal. The study was funded by the Cambia Health Foundation Sojourns Scholar Leadership Program.
“The biggest takeaway is that it’s a good start, and we learned a lot, but there is so much more we need to understand,” she said.