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The Many Shades of Survivorship

BY KATHY LATOUR
PUBLISHED WEDNESDAY, DECEMBER 23, 2009
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?”

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