The Many Shades of Survivorship

When Marjorie Kagawa Singer, PhD, RN, began working as an oncology nurse in Los Angeles in the late 1960s, she discovered that her education about psychosocial support had little relevance for the minority patients she worked with. Instead, she relied on insights from growing up in Lodi, California, and the segregated neighborhoods of Berkeley as a third-generation Japanese-American. The disconnect between what minority cancer patients needed and what was available led Kagawa Singer to study cultural differences in cancer care for her PhD dissertation. Today, she serves as principal investigator at the National Cancer Institute-funded UCLA Minority Training Program for Cancer Control Research. Her research focuses on cultural differences in cancer, especially for Asian-Americans, a population for whom research is lacking—and in health care, little changes without the research to back it up.

"Part of the problem in talking about health disparities is that if you don’t do research with the communities, you are going to replicate only what has been done, and with increasing numbers of these populations, disparities will only persist,” Kagawa Singer says.

The current Eurocentric paradigm for cancer care presents a number of hurdles for minority survivors, she says, beginning with researchers not knowing how many of the 12 million survivors in the country represent minorities because government data collected from patient charts are notoriously ­inaccurate.

For example, she says, in the Asian-American and Pacific Islander communities where she works, there are more than 37 nationalities and over 100 languages. “Twenty-two states don’t even count Asians as a category, let alone Pacific Islanders as a separate group; they are in the ‘other’ category,” Kagawa Singer says. The error rate for “counting” cancer incidence is also high for groups of color, she says, explaining that in California, there was an 80 percent error rate in identification of Native Americans because most have Hispanic surnames.

She hopes this will improve now that the Institute of Medicine released recommendations in August on how to make racial and ethnic designations. The report, “Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement,” says the U.S. Department of Health and Human Services should provide health care workers with nationally standardized lists of narrowly defined categories of ethnicity. Plus, the IOM recommends that individuals should be given the option to self-identify their ethnicity if it is not listed. Culture makes a difference, says Kagawa Singer, since the process of providing support is based on Eurocentric definitions of identity, concept of self, autonomy, and privacy that may not apply to the majority of minority communities.

It’s not a matter of right or wrong, says Kagawa Singer. It’s just different.

As happens often in cancer, individuals with insight and need have led the way in developing support where none exists. When Karen Eubanks Jackson was diagnosed with breast cancer at age 50 in 1993, she immediately began looking for support that would speak to her African-American culture. When she didn’t find a national network, she started one: Sisters Network, Inc (www.­sistersnetworkinc.org; 866-781-1808).

“I was looking for a connection, a ‘sisterhood,’” Jackson says. “When it came time for me to take my journey with breast cancer, I needed more than just someone to talk to—I needed someone who could relate to me specifically.”

What began as Jackson gathering “sisters” to help her understand her journey more than 15 years ago has grown into a national network of 43 affiliate chapters in 22 states with more than 3,000 members and untold numbers of ­associate members, such as family and friends and colleagues. Jackson, as founder and CEO, says the network provides not only patient support, education, financial assistance, and clinical trial recruitment, but also support for the family, including men and older boys, who need to know what is happening so they can end the survivor’s shame of talking about breast cancer, Jackson says.

This reflects the organization’s motto, “Stop the Silence,” which Jackson says speaks to the reluctance in the African-American community to speak about breast cancer and other health issues due to a cultural sense of privacy and shame.

“The first couple of years, my own family couldn’t understand why I needed to speak out and create a national organization. Why didn’t I just forget about breast cancer and move on with my life?”

Despite major success in the African-American community, Jackson says there is still work to be done, which is why Sisters Network affiliates coordinate with local organizations to go door to door in African-American communities to educate women about breast cancer and provide free mammograms ­?through the network’s signature outreach program called the Gift for Life Block Walk. In addition, the network has implemented a national initiative to educate African-American women through churches about the need for mammography and breast self-exam and to inspire survivors to participate in the sisterhood movement. Plus, Jackson says a key piece of the network has been gaining the trust of the African-American community about enrolling in clinical trials.

Kagawa Singer says research will help provide the descriptive work needed to identify the differences in what will be relevant and meaningful to different cultural groups, such as understanding the role of family and communication. She offers the explanation of how groups communicate, saying that, perhaps with the exception of the African-American community, research shows that non-European minorities tend to be less verbal.

Communication with Native Americans, Asians, Latinos, and Pacific Islanders is more indirect so as not to make the other person uncomfortable, says Kagawa Singer. “This means communication takes a lot longer because you have to be careful. When they know you are able to do that, then there is a sense of safety, and trust is more likely to be built.”

This is one reason why members of these populations may show up for support groups once or twice but not return if they are pushed to ­communicate their inner feelings directly.

“When it came time for me to take my journey with breast cancer, I needed more than just someone to talk to—I needed someone who could relate to me specifically.“

Education and trust are also major hurdles for Elliott Goytia, MD, in his job as a physician at Queens Cancer Center in Jamaica, New York. Goytia directs the hospital’s primary care clinic for survivors, which serves the minority population in partnership with Memorial Sloan-Kettering Cancer Center in New York City.

The clinic was initially designed to work with minorities beginning two years after treatment, Goytia says, but patients needed more, including primary care, so they now have three patient populations: one for preventive care, one for active treatment, and one for survivorship. “Queens is the most diverse borough in the United States,” Goytia says. “We have patients who come speaking 135 different languages. It’s really a micro-world.”

For the more than 1,200 patients with an ­average eighth-grade education, Goytia says, even educating them about their cancer can be time-consuming and take multiple visits that may involve four or five family members.

“This means communication takes a lot longer because you have to be careful. When they know you are able to do that, then there is a sense of safety, and trust is more likely to be built.“

“I am trying to create patient treatment summaries to help them understand the risk going forward and to understand what they should be looking for if their disease progresses,” he says. That can mean accepting spiritual practices and that patients may want to visit their community healer before starting treatment.

Kagawa Singer says finding successful approaches means looking at the dynamics of a culture that may be very different from your own, such as one of her outreach programs where the goal was to increase mammography among Cambodian, Laotian, Vietnamese, Tongan, Samoan, and Chamorro women. The researchers looked at the dynamics in the group and found that these were male-dominated relationships. So, they decided to focus on helping the male partners of the women understand the purpose of mammography.

“We educated the men in these groups, and they said, ‘Oh, that’s what that’s for. Then my wife will get one tomorrow,’” Kagawa Singer says. “Some of the women said they didn’t want to go, and the husbands took them. In these communities, we recognize that cancer is a family affair.”