It Takes a Community to Address Cancer Disparities among Underserved Minority Populations
November 29, 2007
ATLANTA - Cancer affects whole communities of people with similar genetic heritage and cultural behaviors, yet medical researchers often have trouble uncovering data on minority populations and promoting changes that could improve health. That is why many researchers have begun to collaborate directly with community groups. Such associations can improve the quality of data collection; provide needed insight into social factors involving help; and lead to sustained health improvements among disadvantaged populations.
Today in Atlanta, researchers report the results of successful initiatives begun in Nashville and among the Navajo Nation at the American Association for Cancer Research conference on The Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved, being held November 27-30. Their community research projects are helping African-Americans to stop smoking, Hispanic immigrants to meet their basic cancer care needs and members of the Navajo Nation to educate a dramatically underserved population about colorectal cancer.
Hispanic Health in Nashville 2007: Cancer Needs Assessment, Abstract no. B-43:
Like many communities in the United States, Nashville, Tennessee, has over the past two decades experienced an unprecedented influx of immigrant Hispanics - a population whose healthcare needs are understudied and not well documented in the academic literature. In response, a coalition of Nashville-area researchers have teamed with community groups to survey the cancer care and prevention needs of Hispanic immigrants. Their findings will help shape future community programs and potentially reduce the burden of cancer among local Hispanics.
"Our local Hispanic community has grown nearly seven-fold over the last decade, yet we do not know much, if anything, about their cancer-related needs," said lead investigator Pamela Hull, Ph.D., associate director of the Center for Health Research at Tennessee State University. "Our survey has found that members of the Nashville Hispanic community are overwhelmingly interested in cancer prevention and healthcare efforts - including cancer clinical trials and cervical cancer vaccination - yet the community generally lacks access to care and information."
Since 1990, the Nashville Hispanic population has grown from a mere handful to nearly 40,000 people, according to census data, but the real figure might be higher, says Hull. "Over the last 15 years or so, many smaller cities and rural communities across the interior of the United States have seen a similar growth of Hispanic immigrants moving from the states with traditionally larger Hispanic populations," Hull said. "Our survey, and the participatory methods we use, could help inform these new growth communities about their blossoming Hispanic populations. Statistics on the health of Hispanic immigrants in Tennessee practically do not exist, which is especially worrisome given the lack of health insurance among this population."
The survey was conducted by the Cancer Outreach Core of the Cancer Disparities Partnership, collaboration between Meharry Medical College, Vanderbilt University, and Tennessee State University, with funding from the National Cancer Institute.
According to the American Cancer Society, Hispanics, in general, face lower rates of cancer than Caucasians, but higher rates for certain types of cancer, such as cervical, stomach, liver and leukemia. Hispanics also have lower survival rates for most cancers. However, cancer rates may differ according to a person's country of origin, Hull says.
Hull and her colleagues began a community-based participatory approach to survey the needs of the Hispanic population by partnering with the Progreso Community Center - a grassroots Hispanic community organization - and the Nashville Latino Health Coalition. Together, they trained Hispanic community members and bilingual students to collect data in neighborhoods and public venues across the Nashville area.
They interviewed over 500 Hispanics in the urban area, with an average age of 35. According to their results, 98 percent of respondents were not born in the United States, with more than half emigrating from Mexico. On the surface, Hull says, some of the results of the survey may seem bleak - 80 percent of those surveyed lack health insurance, two-thirds lacked high school degrees and 55 percent spoke little or no English.
The researchers found, however, that Nashville Hispanics took a great interest in cancer care and prevention. Cancer was rated as the top health concern out of a list of 25 topics. Nearly 75 percent indicated they wanted to learn more about cancer prevention, and just over half wanted more information on cancer screening. The vast majority of participants said they would participate in a clinical trial to receive treatment if they had cancer. Participants with daughters under age 18 were asked if they would obtain the new human papillomavirus vaccine for their daughters if it were free, and more than 90 percent said they probably or definitely would.
"The good news is that this population places a strong emphasis on prevention and is receptive to cancer education and screening," Hull said. "With this baseline information, we will continue to work with Progreso Community Center and Nashville Latino Health Coalition - with direct involvement of grassroots Hispanic community members - to develop culturally appropriate programs and further research to address the cancer-related needs of Hispanics."
Nashville NAACP tobacco prevention initiative: An example of community-based participatory action research, Abstract no. B-42:
When Reverend Raymond Bowman, pastor of Spruce Street Baptist Church in Nashville, Tennessee, brought his concerns about smoking in the African-American community to members of the local branch of the National Association for the Advancement of Colored People, little did he know that he would start something of a revolution in local community cancer prevention.
Although it just began in 2006, the Nashville NAACP Tobacco Prevention Initiative has increased awareness of the dangers of tobacco use, begun changing smoking behavior and tobacco-related policy and provided researchers with valuable epidemiological data on public health disparities in the African-American community.
"The lesson we have learned is that change is possible when academic health research focuses on the community in ways that are compatible with culture and social context," said initiative leader Elizabeth Williams, Ph.D., associate director of minority affairs at Vanderbilt University's Vanderbilt-Ingram Cancer Center.
Researchers call this a Community-based Participatory Action Research (CBPAR) methodology, one that engages participants as partners, not just as research subjects. The initiative partners - local community leaders, researchers and students from local universities and medical centers - believe the initiative serves as a role model for similar efforts among minority populations across the country.
African-Americans use tobacco differently than other Americans, Williams says, which illustrates the unique needs of this particular community. African-American women, for example, tend to start smoking later in life than Caucasian women do, and are much less successful when trying to quit. Menthol cigarettes, which are often marketed to African-Americans, may contribute to the increased use of tobacco and cancer disparities among this population as well, Williams says. "Studies have shown that African-Americans may even smoke fewer cigarettes, but that it affects them disproportionately in cancer incidence and mortality," she said.
According to Williams, tobacco use, among all the behavioral factors that lead to cancer, is a key target of cancer prevention efforts. "Cancer affects African-Americans differently than it does Caucasians and other ethnic groups," Williams said. "The disease is more severe and it is often detected at an advanced stage, when treatment is more difficult or fewer options are available."
The CBPAR approach allows Williams and her colleagues to strategize about ways to address tobacco use and chronicle the development of the initiative through qualitative methods including participant observation, focus group data, key informant interviews and historical archives. Since its inception last year, the initiative has successfully changed local policies about smoking on church property and developed community-based tobacco prevention activities, such as a 2006 Kick Butts Community Forum and a 2007 World No Tobacco Day Event. Initiative members take part in service-learning projects, which include assessing the needs of and tailoring programs for nearly 7,000 members of the more than 20 churches active in the program.
Nashville is firmly in the Bible Belt of the United States, Williams says, and the connection between church and community provides researchers with a vital avenue for preventing tobacco use.
"Our work involves an active process for change - the community might not listen to public service announcements, but they will listen to pastors, friends and family members who speak out about their cancer experiences," Williams said. "Beyond listening, they are motivated to act on behalf of their health. When that happens, addressing cancer disparities moves from rhetoric to action."
Colorectal Cancer Screening Knowledge and Awareness on the Navajo Reservation, Abstract no. B-38
Some minority populations in the United States are so isolated from mainstream cancer awareness efforts, they seem like separate nations unto themselves - a literal distinction for Navajo Indians. In the first-ever assessment of cancer awareness among members of the Navajo Nation, researchers at the University of Arizona Cancer Center have determined that cancer education efforts have not reached the tribe, particularly with regard to colorectal cancer (CRC).
With funding from the National Cancer Institute, the study leader, Priscilla Sanderson, Ph.D., a post-doctoral fellow at the University of Arizona Cancer Center and herself a Navajo, has undertaken an extensive review of attitudes toward cancer among the nearly 200,000 members of the Navajo Nation who live in the Navajo Reservation, an area of land that occupies most of northeastern Arizona as well as parts of New Mexico and Utah.
To establish a baseline of colorectal cancer awareness, Sanderson surveyed Navajo at tribal fairs and health centers and held focus groups of tribal elders. "Results of our studies show that awareness and interest in colorectal rectal cancer screening among the Navajo Nation is present," Sanderson said. "However, the proportion of those reporting undergoing CRC screening is much lower than the national average, and that may have a direct effect upon cancer survival."
Colorectal cancer is one of the most common forms of cancer in the United States, with over 150,000 new cases of CRC each year. Since CRC is most common in older adults, doctors generally recommend that every man and woman be regularly screened after age 50. If caught early, CRC has a 50 percent five-year survival rate. According to Sanderson, hard data on CRC incidence among Navajo is not conclusive, but rates are actually thought to be somewhat lower than in other ethnic groups in the United States.
"Part of the problem involves public health resources, but there is a definite cultural component that has inadvertently stood in the way of cancer awareness," Sanderson said.
One example given by Sanderson is that many Navajo - especially the older members of the tribe - do not speak English as a primary language. In surveying elder tribal members, Sanderson found that 47 percent spoke only Navajo, while none spoke English as a primary language.
The fact that the Navajo language lacks a specific word for cancer might be a conceptual barrier for some, Sanderson says. When discussing cancer, Navajo typically use the phrase, "Lood doo náziihii," which literally means "the sore/wound that does not heal." "It is difficult to assess a person's understanding of cancer if you lack a common vocabulary," Sanderson said.
While the study's ongoing surveys and focus groups have not yet captured the entire picture of CRC awareness among the Navajo Nation, Sanderson believes the information she has developed so far can serve as a baseline by which to judge future efforts in raising cancer awareness. At two annual tribal festivals on the Navajo Reservation, only 16 percent of survey respondents, who were typically women in their forties, had reported ever having been screened for CRC. Surveys conducted at two Indian Health Service hospitals in 2007, however, showed that while 55 percent of participants had heard about CRC screening, only 30 percent had ever had a screen themselves. Among elder tribal members queried during focus groups, nearly half had never had a colorectal screen, Sanderson says.
According to Sanderson, ongoing research is beginning to uncover a solid baseline for cancer knowledge among the Navajo Nation. "With this information, we can build a CRC screening campaign based upon cultural needs of this distinct population," Sanderson said. "It can also be a foundation for further research into cancer health disparities on the Navajo Reservation."
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The mission of the American Association for Cancer Research is to prevent and cure cancer. Founded in 1907, AACR is the world's oldest and largest professional organization dedicated to advancing cancer research. The membership includes nearly 26,000 basic, translational, and clinical researchers; healthcare professionals; and cancer survivors and advocates in the United States and more than 70 other countries. AACR marshals the full spectrum of expertise from the cancer community to accelerate progress in the prevention, diagnosis and treatment of cancer through high-quality scientific and educational programs. It funds innovative, meritorious research grants. The AACR Annual Meeting attracts more than 17,000 participants who share the latest discoveries and developments in the field. Special Conferences throughout the year present novel data across a wide variety of topics in cancer research, treatment, and patient care. AACR publishes five major peer-reviewed journals: Cancer Research; Clinical Cancer Research; Molecular Cancer Therapeutics; Molecular Cancer Research; and Cancer Epidemiology, Biomarkers & Prevention. Its most recent publication, CR, is a magazine for cancer survivors, patient advocates, their families, physicians, and scientists. It provides a forum for sharing essential, evidence-based information and perspectives on progress in cancer research, survivorship, and advocacy.
In Atlanta (November 27-30):