On a warm spring night in Miami, one of the nation’s foremost African-American oncology nursing scholars and researchers, Sandra Millon Underwood, RN, PhD, FAAN, is delivering an impassioned speech to a group of about 30 cancer nursing educators and clinicians about how it’s time to stop talking about minority health disparities and start doing something about them.
“I am appalled by the lack of information in nursing textbooks about health disparities that we know exist. [The Institute of Medicine report Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care] shows there are disparities not just in occurrence [of cancer and other serious diseases] but in treatment. How many more reports do we need to write?” she demands.
“This is a time for commitment, for active involvement,” continues Underwood, who is the American Cancer Society Oncology Nursing Professor and Northwestern Mutual Life Research Scholar at the University of Wisconsin-Milwaukee School of Nursing. “If we are to be real nurses, we can’t sit here any longer and do nothing. Our efforts must be directed toward cancer prevention, early detection and cancer control throughout the community. We need to go out into our own communities and deliver information about cancer prevention where we live, where we shop, where we worship.”
Fortunately, the nurses in the audience, most of whom are African American, have no intention whatsoever of sitting and doing nothing. In fact, they’ve just spent much of the past year doing exactly what Underwood is talking about: creating and implementing successful education, prevention and screening programs designed specifically to close the gap of unequal cancer outcomes in America’s communities of color. And now they’ve come together at this Dissemination Colloquium to present their projects, share ideas and learn from one another.
The two-day colloquium, held last May, was part of an ongoing series of Cancer Prevention and Early Detection Programs for nurses involved with historically black colleges and universities (HBCUs) and minority-serving institutions (MSIs), sponsored by the Oncology Nursing Society and funded by a grant from the National Cancer Institute. Many of the participants had previously attended a prevention programs workshop taught by Underwood in August 2001, had found it incredibly motivating and had returned in 2002 eager to report on the activities they had developed as “homework assignments.”
Ending the Silence, Challenging the Myths
As the name implies, the purpose of the dissemination colloquium was to give the nurses an informal opportunity to network and exchange experiences about what strategies are working in the battle to bring effective, culturally appropriate cancer prevention programs to minority communities. There was even a presentation by a panel of nursing editors (including Minority Nurse) to encourage the attendees to share their success stories with the wider nursing community by writing and publishing articles about their projects.
But a more urgent undercurrent running beneath this focus on getting the word out was the need for nurses to not just share information with other health professionals but to bring the message directly to those who will benefit from it the most–at-risk minority individuals whose lives could be saved if they were better informed about cancer prevention and the importance of detecting the disease in its early stages when it is easier to treat.
During one networking session, the nurses spoke frankly about the problem of “silence barriers”–i.e., reluctance to talk about experiences with cancer–that have become a cultural legacy in many minority communities. This silence can result in a deadly lack of information that can prevent people from seeking screening or treatment until it’s too late. For example, some African Americans may never have been told by their parents that they have a family history of cancer. “Minority populations can’t afford to be silent about cancer,” one participant declared. “We need to start talking about it and get all the information out in the open. We have to end the secrecy.”
Added Underwood, “It’s more than just a question of getting the information out there. We also need to dispel the myths and challenge the incorrect information.” She cited the example of a widely circulated Internet hoax that scared many women into believing certain types of deodorants and underwire bras cause breast cancer. “If you receive one of these hoax emails, don’t just delete it,” she urged. “Respond to it and set the record straight. Send an email to each person whose name is on the list and give them the facts.”
Other participants–many of whom had lost friends and relatives to breast cancer or had suffered from the disease themselves–shared their own experiences with cultural beliefs and misperceptions that can create barriers to early detection and treatment in African-American communities. These included the reluctance of some black women to perform breast self-examinations because of cultural taboos against touching one’s own body, and the surprisingly common belief that cancer surgery does more harm than good because cancer spreads when it’s exposed to the air.
Yvonne Ford, RN, MSN, oncology patient resource manager at Duke University Medical Center in Durham, N.C., spoke eloquently about the nurse’s role in replacing cancer myths with facts as she presented her project, a colorectal cancer education and screening program targeted to African Americans in the Durham area. “Once the myths are dispelled, people want more information,” she said. “Information is power and it can save lives.”
Although colorectal cancer is very curable early on, it is usually not diagnosed until the disease is in an advanced stage. “Screening and early detection are critical–by the time you have symptoms, it’s too late,” Ford emphasized. “Our program was a targeted educational intervention, because I believed very strongly that the reason why people didn’t get screened was that they didn’t know about colon cancer, what the risks are and what the screening methodology was.”
To break down these barriers, Ford and her team of nurses held several community education events that featured quizzes to assess people’s knowledge of the disease, informative discussions about risk factors and symptoms, and–most importantly–free colorectal screenings. There were also demonstrations of colon-friendly, high-fiber cooking–“people will always come to a program if you feed them,” Ford pointed out–and distribution of informational materials Ford obtained from the American Cancer Society at little or no cost.
When you’re trying to arm people with empowering information about cancer, it’s important to allow plenty of time for questions, Ford advised. “These people have questions they probably wanted to discuss with their doctors, but they didn’t, for whatever reason. This is where you as a nurse have the opportunity to find out what their concerns are–whether you need to refer them on for further care, or if you need to calm their fears, or whatever. That was the piece of the project I actually liked the best.”
An Army of Educators
While nurses can play an extremely active role in bringing cancer prevention information and screening into underserved minority communities, they can’t do the whole job by themselves. That’s why many of the projects presented at the colloquium featured a strength-in-numbers strategy of nurses teaching people other than RNs to become community cancer educators. These “partners in prevention” included student nurses, high school teachers, community leaders and even minority medical students.
After attending Underwood’s 2001 workshop, a group of nine Chicago nurse educators, most of whom teach at the inner-city Dawson Technical Institute, teamed up to launch a project designed to increase their LPN students’ awareness of minority cancer disparities and encourage them to become involved in helping to address these issues. Calling themselves the Coalition of African-American Nurses (CAAN), the group’s members include Carol Alexander, RN, BSN, Alma Boykin, RN, BSN, Donna Calvin, RN, MSN, FNP, Rubie Elkins, RN, MSN, Rose Murray, RN, BSN, Muriel Reed, RN, BSN, Velita Sanders, RN, BSN and Alicia Theodore, RN, BSN.
Their project is particularly innovative because LPNs have been largely overlooked as a resource for fighting the war against unequal health outcomes. “Why shouldn’t we educate the LPN nursing student [about health disparities]?” argued Alexander, the coalition’s director. “LPNs are nurses who primarily function in direct patient care and they are also positioned to serve as positive role models for their patients and families. If they are equipped with the knowledge to appropriately counsel their patients, we will be able to increase the number of health care educators in the African-American community, where many LPNs currently serve.”
Other nurse educators showcased projects that enabled BSN students to gain hands-on experience in delivering cancer prevention education in minority communities. What was striking about these programs is that the outreach activities are incorporated directly into the school’s nursing curriculum.
For example, Linda Byrd, RN, MSN, CRNP, an instructor at Auburn University School of Nursing in Auburn, Ala., described her institution’s community-based curriculum, designed to serve an area where 23% of the residents are African Americans, many of them at poverty level. As part of the school’s community clinic program, students serve at two clinic sites to work on various health promotion projects–e.g., smoking cessation, healthy eating and drug abuse prevention.
Byrd asked the student nurses to introduce cancer prevention activities into this already established program. They eagerly accepted the assignment, going out into the community to distribute information and performing presentations and skits at the clinic sites. The new focus on cancer awareness was a huge success, Byrd said. The number of patients visiting the clinics increased and the students were well received by the community residents.
At the University of the U.S. Virgin Islands in St. Thomas, where student involvement in public service projects is an integral part of the BSN experience, students in two junior-level med/surg nursing courses taught by Edith Ramsay-Johnson are required to independently develop and implement health promotion projects for increasing awareness of cancer prevention in the local black community. “The students’ ingenuity and motivation has resulted in a number of dynamic, creative programs that reached a significant number of persons in our community,” Ramsay-Johnson reported proudly.
Working in teams, the students present preventive education and early detection programs at churches and senior citizen centers. In addition, said Ramsay-Johnson, “an optional aspect of the health promotion projects involves wider dissemination of the information.” Students have chosen a variety of avenues for getting the word out to a larger audience, including poster presentations at a shopping mall and appearances on local radio talk shows.
Most of the colloquium participants who were actively enlisting their nursing students into the fight to eliminate unequal cancer outcomes came from HBCUs or schools with large minority student populations. But the information exchange also included the perspectives of educators at predominantly white schools, whose projects focused on building their students’ awareness of minority cancer disparities and preparing them to provide culturally sensitive care to patients from a diversity of backgrounds.
For instance, Sheila Fredette, RN, EdD, who teaches the clinical component of a community health nursing course at Fitchburg State College in Fitchburg, Mass.–a public college where the student population is 82% Caucasian, 15% Hispanic and 3.6% African American–is developing a program that would require students to create a series of poster sessions on five major cancer types that disproportionately strike African Americans. The students will then present this information to audiences such as the school’s black student union, community service agencies and members of local African-American churches.
Turning Awareness Into Action
Knowledge may be power, but when it comes to fighting cancer in minority communities, spreading the word about the importance of prevention and early detection is only half the battle. Another recurring theme uniting many of the presentations was the challenges nurses face in getting people to translate cancer prevention knowledge into action–such as going in for screening or making lifestyle changes that can help decrease their risk.
Early on in the colloquium, Barbara Buchanan, RN, EdD, FNP, and Quentin Newhouse, Jr., PhD, from Tennessee State University presented their study, “Cancer Knowledge and Health Beliefs Among Select Groups of African-American Women.” The researchers surveyed a sample of 126 black women between the ages of 23 and 79 with no prior experience with cancer, asking them to respond to true-or-false statements such as “cancer is curable,” “all cancer drugs have the same effect” and “keeping cancer secret will make everyone less afraid.”
The results, Buchanan reported, showed that the women’s knowledge base was high and their beliefs about cancer were sound and realistic. “The respondents strongly believed that taking charge of one’s health is important and necessary,” she concluded. “But do they really do that? We’ll have to go back and see.”
This concern was echoed by other attendees, who related their experiences with patients who know preventive screening can save lives but don’t take the next step and follow up on that knowledge. Why, the nurses asked with obvious frustration, do so many African-American women make appointments to get mammograms and then not show up? Why is it, as research studies have revealed, that more than 95% of all women report knowledge of breast self-exams (BSEs), yet less than 50% actually perform them on a monthly basis? Clearly, in cases like these, lack of information is not the problem.
One presenter who directly addressed this situation was Linda Forté, RN, DSN, of the Mississippi University for Women in Columbus, Mississippi. “The discrepancy between knowledge of BSE and practice of BSE is still an unsolved clinical problem,” she emphasized. “[Nurses], as health educators, could play a big part in being able to resolve that issue.”
Forté’s project, “Circling the Issues,” involved teaching African-American 11th and 12th grade students how to perform BSEs on themselves and then share what they’ve learned with other important people in their lives, such as mothers, sisters, peers, and even fathers and brothers. “These people would be receiving the information from someone in their own group, someone they trust, and therefore they would be more willing to learn it and to do it,” she explained.
Eight of Forté’s BSN students worked with teachers at a local high school to conduct a one-day education session that included a BSE video and a 30-minute presentation on breast cancer facts. Next, the teens practiced performing BSEs on a model before examining themselves.
“For Sisters Only,” a project developed by Glenda Sims, RN, PhD, to increase the use of mammography by African-American women in medically underserved communities, took a different but equally innovative approach to the problem: making mammograms impossible to avoid. “We bring the mobile mammography unit directly into their communities for free screenings,” explained Sims, who teaches at the University of South Carolina at Spartanburg. “We will even go pick them up and bring them in for their mammogram, and provide a ‘buddy’ for them if that’s what they need in order to feel comfortable about coming in to get the test. And we don’t ask them any questions about their financial status, because that is also a barrier.”
What it all boils down to, everyone agreed, is empowering people of color to take control of their own health. Nurse educators, clinicians and students can do this by giving minority patients the facts about cancer, by providing accessible and affordable screening options and by encouraging them to become active participants in the health care process.
For example, the nurses stressed the importance of teaching minority patients how to communicate more effectively with their physicians, and letting them know they have the power to “fire” their doctor if necessary. In the words of Ritha Bookert, RN, MSN, FNP, of Brandon, Miss., who was so inspired by Underwood’s previous workshop that she went back and started her own 501(c)3 health education corporation: “If you are going to a doctor who is not talking to you about doing breast self-exams, you need to change doctors.”
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