Among the many challenges of trying to promote cancer screening and early detection in American Indian and Alaska Native communities is the reluctance to speak about it. Some Native people consider cancer to be an automatic death sentence, and some believe talking about it could invite the disease into one's body.
So when DeAnna Finifrock, MSN, RN, PHN, a trusted public health nurse who for many years has worked on the Fond du Lac Band of Lake Superior Chippewa Reservation in Cloquet, Minn., was diagnosed with breast cancer 11 years ago, she saw an opportunity.
She told people in the community how she had almost missed getting her annual mammogram that year because she was so busy with her job and family, but that fortunately she did make it to the appointment. She openly shared news of her diagnosis and treatment. And she talked about hope and gratitude.
"I said, ‘I want to be there to rock my great-grandbabies. If I had skipped the mammogram that year, I wouldn't be here talking to you.'"
Her powerful story helped raise awareness about cancer screening and treatment in the community, and today it adds validity to her work managing a Centers for Disease Control and Prevention (CDC) cancer control and prevention grant for the reservation.
"I've traveled the cancer journey," she says. "I know what it's like."
Finifrock is an example of how culturally competent nurses can make a major impact in eradicating cancer disparities in minority and medically underserved communities.
Although scientific breakthroughs have led to better treatment and survival rates for many types of cancer, these advances haven't brought equal hope for everyone. Racial and ethnic minorities bear a disproportionate share of pain, suffering and death from the disease compared to the U.S. population as a whole. Consider these statistics:
Efforts to end these disparities through culturally appropriate research, prevention programs, education and cancer care have increased in the last decade. But there's obviously much more work to be done.
"You see the disparities and you ask why," says Sandra Millon-Underwood, PhD, RN, FAAN, a professor at University of Wisconsin-Milwaukee College of Nursing. "That's a good question to ask, but maybe the more important question to ask is: ‘What can we do about it?'"
Millon-Underwood, who was recently inducted into the National Black Nurses Association's Institute of Excellence, has conducted many research projects on cancer education, prevention, early detection and cancer risk management for at-risk and underserved populations. Her focus for the last 30 years has been on getting the word out in plain language to people right where they live.
For instance, a program she designed to promote breast health among African American women addresses the misconceptions and fears that often prevent women from getting mammograms. In this intervention, nurses present culturally specific breast cancer screening, early detection and follow-up programs to groups of women in the places where they work and worship. Audiences have included housekeeping, custodial and dietary staff at hospitals and colleges; childcare attendants at daycare centers; alliances of ministers' wives; and weekly Bible study and prayer groups at tiny storefront churches, halls and mosques. More than 6,000 women have benefited from the program to date.
A key to reaching people in communities of color is connecting with them at the grassroots level, Millon-Underwood emphasizes. She cites other successful cancer outreach programs in which nurses have presented information to customers at nail salons, barbershops and even laundromats.
To make true connections with people in the community, nurses must first establish trust. "You've got to be engaged before you can engage [others]," Millon-Underwood says. "You're not there just to present a program. You're there because you care." She encourages nurses to structure cancer awareness presentations as participatory dialogs rather than one-way lectures, and to stay after group meetings so individuals can approach with questions they may be afraid to ask in front of everyone.
Personal stories from the community can be powerful dialog openers. Cancer awareness increased substantially on the Fond du Lac Reservation after the community began to participate in the American Cancer Society's Relay For Life, an annual overnight event that brings people together to celebrate cancer survivorship and raise money for ACS research and programs.
Six years ago, more than two dozen people from the reservation participated in Relay For Life for the first time, walking or running laps to raise funds. Others donated money for luminaria (small lanterns made by placing votive candles in paper bags and weighing them down with sand) to honor loved ones and friends who had experienced cancer.
"It was amazing to walk that path of lighted luminaria. It opened the door so people could start talking about [cancer]," Finifrock says. Today more than 100 Fond du Lac community members take part in the event.
Since then, Finifrock and her public health nursing team have expanded their cancer control activities on the reservation. Through its CDC grant, the reservation created the Wiidookaage Cancer Program. (Wiidookaage is the Ojibwe word for "they help each other.") The program includes a wide variety of cancer education, screening and outreach activities, with a focus on one-on-one and small-group interventions developed by health professionals who are well known and trusted in the community.
Now Fond du Lac is advising the American Cancer Society on its revision of the national Circle of Life program, which is designed to decrease breast cancer incidence and mortality rates among Native American women through culturally sensitive early detection and screening strategies. The revision, based on the successful programs developed by the Fond du Lac reservation, also addresses other types of cancer in Native communities.
But early diagnosis can only help so much when so many barriers to treatment still remain. For many American Indians and Alaska Natives, obtaining access to the health care system is complicated, and the Indian Health Service suffers from a lack of funding.
"If I had to go through my tribe to get health care after a diagnosis of cancer, I'd first have to move back to Oklahoma and wait six months to establish residency," says Linda Burhansstipanov, MSPH, DrPH, CHES, executive director of Native American Cancer Research and a member of the Cherokee Nation. "Then I'd have to get on a referral list." She estimates that it could take as long as 18 months to get treatment under that scenario.
Access to anti-nausea and pain medications is limited, too, and sometimes patients don't get any information about how to take the medications. A large percentage of patients in NACR's database report unmanaged cancer pain.
Cultural barriers can also contribute to pain management disparities in AI/AN patients. For example, some Indian patients may have completely different ways of thinking about, describing and dealing with pain than their non-Indian health care providers. When doctor and patient aren't on the same wavelength, communication becomes difficult, if not impossible.
"We don't [like to talk about our pain]," Burhansstipanov says. "Indian patients feel they're supposed to show stoicism."
These cultural communication breakdowns can be a problem for other racial and ethnic minority populations as well. In some cultures, a patient may be reluctant to complain about pain because it might imply disrespect toward the health care provider, says Guadalupe Palos, RN, LSMW, DrPH, an oncology nurse and assistant professor at University of Texas M.D. Anderson Cancer Center in Houston, who has conducted cross-cultural research on cancer pain and symptom management.
Nurses can also play an important role in providing culturally and spiritually competent care to minority cancer patients in the hospital setting. Nurses in the palliative care unit at M.D. Anderson Cancer Center, for instance, work with hospital administrators to accommodate patients' cultural celebrations, such as quinceaneras, and honor religious observances, such as Ramadan.
Earlier this year, a team of four palliative care nurses at M.D. Anderson, led by Teresa Smith, RN, MS, NP-C, CHPN, developed a set of color-coded reference cards to help nurses and nursing assistants in the medical center's acute palliative care unit understand patients' diverse religious and spiritual traditions, especially those involving death and dying. Because about 40% of patients on this unit are at the end of life, preparing patients and their families for death is a daily reality.
Years ago, the prevailing perception was that half of the medical center's patients were Baptist and the other half were Catholic, Smith explains. But patients now come from all over the world. "I can count on one hand the number of patients I had who were Baptist or Catholic," she says.
Smith began researching end-of-life spiritual practices for her master's degree, and the cards developed from there, with input from community religious leaders. Each card covers a different religion, from Hinduism and Islam to Coptic Christianity, and includes details about that faith's end-of-life rituals. Some Hindus, for instance, tie the dying person's toes together with colored threads, which nurses should not cut or remove. Some members of the Buddhist faith may want the body left undisturbed for hours after their loved one has died, so they can chant and pray for the deceased person's soul.
Nurses who lack understanding of a dying patient's cultural and spiritual needs at this difficult time can make that person's death an even more traumatic experience for his or her family members. Smith recalls one Hindu family who were deeply upset because a nurse read the 23rd Psalm to their dying family member. The nurse was only trying to help, but the good intentions didn't erase the family's pain.
Research is still another area in which nurses can make significant contributions toward closing the gap of unequal cancer outcomes. There is a tremendous need for more minority nurse scientists who can join the ranks of those who are already investigating the causes of cancer disparities—including biological, genetic, socioeconomic, cultural and health care access issues—in order to develop interventions that will improve care for at-risk and vulnerable populations.
For example, Jennifer Wenzel, PhD, RN, CCM, assistant professor at Johns Hopkins University School of Nursing in Baltimore, is currently conducting a mentored research study called "Developing Cancer Navigation Support for Rural African American Elders." The five-year pilot study, funded by the American Cancer Society, the Robert Wood Johnson Foundation and the National Institute for Nursing Research, will test a community health worker/RN-led intervention designed to help older African American cancer patients in rural Virginia overcome barriers to obtaining quality care and accessing available support services.
Initial focus groups examined cancer survivors' experiences with navigating diagnosis and treatment, including financial issues and strategies for support. The study is now recruiting African American elders undergoing cancer treatment and asking each of them to identify one support person/caregiver, such as a family member or friend. Community health workers will be trained to provide these caregivers with education and support to help them feel better equipped to deal with the challenges of their role.
This approach is innovative because it focuses not only on the patients but on their caregivers, too. "The health care system places a lot of burden on the person providing support for the patient," Wenzel says. "The closer that person is to the patient, the harder the situation can be for helping [the patient make it] through cancer treatment."
The study will look at stress measures and economic and social outcomes. In addition, half of the patient/caregiver pairs will be in a control group that will get survivorship support once cancer treatment is finished.
Palos, too, has conducted research on the impact of cancer on the caregivers of minority and medically underserved patients. Many of these caregivers are under severe financial stress, she says. Often they're forced to choose which prescriptions to fill when co-pays outstrip their available cash. Psychological burdens take a toll, too, Palos adds. Many caregivers show symptoms of depression but avoid using the word. "They say, ‘I'm not [the one who's] sick. I shouldn't be depressed.'"
She has found many similarities across cultural groups in her research, such as the importance of spirituality and the commitment of family members to care for their loved ones going through cancer treatment. Understanding cultural differences is important, too, but Palos cautions nurses not to categorize or stereotype people on the basis of race, ethnicity, culture, religion or other factors. Cultural competence goes beyond broad categories and should include sensitivity to people's individual values and circumstances, she emphasizes.
Underwood agrees that cancer care providers must never lose sight of the patient as a unique, individual human being. "Sometimes we can get so focused on the machines and monitors, we don't see the person," she says.
Twenty years ago, when a landmark American Cancer Society-funded study was released showing that poor people died needlessly from cancer, Cassandra Middleton, a low-income cancer patient, said the doctors who treated her for osteosarcoma of the leg made her feel unimportant because she was poor. At the news conference announcing the study's results, Middleton told reporters: "They made me feel poor. I know I am, but they made me feel like I am."
Those words haunt Underwood to this day. She says nurses should ask themselves: "Could that ever have been me?"