by | Mar 30, 2013 | Magazine
According to the U.S. Department of Justice’s Bureau of Justice Statistics, American Indian women are 3.5 times more likely to be victims of rape or sexual assault than U.S. women of other races. In about 90% of cases, sexual violence against Native Americans is committed by an offender of a different race. Nearly a third of all American Indian victims of violence are between the ages of 18 and 24.
To increase national awareness of this disparity and raise money to support programs aimed at curbing violence in American Indian, Alaskan Native and Canadian First Nations communities, V-Day–the international movement committed to ending violence against women and girls around the world–has launched a new initiative, the Indian Country Project. Native American activist Suzanne Blue Star Boy, of the Ihanktonwan Dakota people, has been appointed director of the Project, which will also focus on building coalitions that will help strengthen tribal commitments to preventing violence against women on Indian reservations and in other Native communities.
V-Day is a non-profit organization established in 1998 as an outgrowth of author/performer Eve Ensler’s award-winning feminist play, “The Vagina Monologues.” Its mission is to assist anti-violence groups in fighting worldwide violence against women and girls, including rape, domestic abuse, incest and female genital mutilation. In addition to ongoing initiatives throughout the year, V-Day promotes an annual series of events, performances, benefits and other activities loosely tied to Valentine’s Day (February 14). The “V” in V-Day stands for Victory, Valentine and Vagina.
To coincide with the debut of the Indian Country Project, V-Day 2003 will focus specifically on the issue of violence against Native American women. Hundreds of local V-Day 2003 events will be staged around the world throughout February and March to educate the public about this problem. Event organizers will be encouraged to donate 10% of their benefit proceeds to organizations working to end violence in Native American communities.
Blue Star Boy, who has formed a “Kitchen Cabinet” of prominent female Native American activists, will travel throughout Indian Country to educate Native American and First Nations women about V-Day as a means to fundraise for local anti-violence programs. “V-Day offers Indian Country a unique opportunity to raise awareness of the rampant problem of violence against Native women and girls and to spark sustainable, community-sponsored events,” she says.
by | Mar 30, 2013 | Magazine
Did you know that within the United States of America there are several functioning governments? American Indian and Alaska Native (AI/AN) tribes possess a nation-within-a-nation status, meaning that the U.S. Constitution recognizes American Indian and Alaska Native tribes as distinct governments. There are more than 560 federally recognized tribes in the U.S. , and the nation’s estimated 2.6 million members live mainly, but not exclusively, on reservations and in rural communities in 35 states.
Unfortunately, the AI/AN people have experienced a lower health status in comparison with other Americans. Their lower life expectancy (almost six years less than the “all races” population expectancy) and the disproportionate disease burden (see the Mortality Rate Disparities chart for details) have been rooted in economic adversity and poor social conditions. There is an organization working to remedy the disparity.
Providing Health Services
The Indian Health Service (IHS), an agency within the Department of Health and Human Services, provides a comprehensive, health service delivery system to approximately 60% of the AI/AN population living in the United States . Their stated goal is to “ensure that comprehensive, culturally acceptable personal and public health services are available and accessible to all American Indian and Alaska Native people.” To that end, the IHS actively assists tribes in developing their health programs.
AI/AN people now have access to health care services in 49 hospitals and over 500 other facilities. A combination of U.S. federal funds allocated to the IHS through the Snyder Act of 1921, Public Law 93-638 self-determination contracts, and more than 9,000 contracts between tribes and independent health care providers have made this possible.
The IHS ensures that preventive measures involving environmental, educational and outreach activities are combined with therapeutic measures into a single national health system. Within these broad categories are special initiatives in traditional medicine, elder care, women’s health, children and adolescents, injury prevention, domestic violence and child abuse, health care financing, state health care, sanitation facilities and oral health.
Career Opportunities Abound
With so many responsibilities, the IHS employs a large staff to meet the diverse needs of the American Indian and Alaska Native population they serve. The agency employs approximately 15,000 people, including members of virtually every discipline involved in providing health care and social and environmental health services. They currently have a vacancy rate of about 12% for health professionals, so there are many career opportunities available.
Individuals with health-related degrees can join the IHS as civil servants or as commissioned officers in the Public Health Service (PHS). All Indian Health Service jobs, along with some tribal and urban Indian health program positions, are listed on-line at the IHS Web site (www.ihs.gov) under the Job Vacancies Database link. Additional IHS jobs can be located through an on-line search at FedWorld Federal Jobs Search and USAJOBS.
Each vacancy listing on IHS’s Web site contains contact information for the position; get in touch with the person listed in order to apply. For most permanent positions, you must be a “status” candidate. Status candidates are Indian Preference eligibles, current permanent federal employees, reinstatement eligibles or applicants with special appointing authority. All IHS positions are subject to Indian Preference laws.
Education and Continuing Education Opportunities
The Indian Health Care Improvement Act, Public Law 94-437, authorizes the IHS to administer three interrelated scholarship programs to meet the health professional staffing needs of IHS and other health programs serving AI/AN people. The IHS also administers a Loan Repayment Program for the purpose of recruiting and retaining highly qualified health professionals to meet staffing needs.
The PHS Commissioned Officer Student Training Program and Extern Program provides students of the health professions the opportunity to gain experience in a health service environment during free periods of the academic year. The Indian Health Professions Program provides scholarships, loans and summer employment in return for agreements by students to serve in IHS, tribal or urban Indian programs. As a matter of law and policy, the IHS gives preference to qualified Indians in applicant selection and career development training. And the PHS National Health Service Corps offers scholarships to medical students who agree to enter primary care specialties and to sign on for a minimum two-year tour of duty in PHS programs, including IHS direct and tribal programs.
In a speech given at the Montana/Wyoming Tribal Leaders Council Meeting this past April, Charles W. Grimm, DDS, M.H.S.A, and interim director of the IHS asserted his personal goals and the spirit of the goals of the IHS. He states, “I am committed to raising the health status of American Indians and Alaska Natives—and it is not just about access to care, or just about improving the educational opportunities for our people, or establishing a safe community, or building homes. It is about all these things, and many more that are interdependent and necessary. One Aspect of well being builds on another. Each of these things requires all of these things.”
by NurseKimberley | Mar 30, 2013 | Magazine, Veterans in Nursing
According to the U.S. Department of Veterans Affairs (VA), approximately 20% of our nation’s 23.5 million veterans are people of color. Like other racial and ethnic minority populations, minority veterans face a variety of unique health care challenges, ranging from chronic disease disparities and high levels of post-traumatic stress disorder (PTSD) to difficulties in accessing medical treatment.
Testifying before the House Committee on Veterans Affairs in July 2007, Lucretia McClenney, MSN, RN, director of the VA’s Center for Minority Veterans (CMV), noted that “in many instances, any challenges that minority veterans encounter as they seek services from VA are magnified by the adverse conditions in their local communities. These challenges may include [lack of] access to VA medical facilities (especially for American Indians, Alaska Natives, Pacific Islanders and other veterans residing in rural, remote or urban areas), disparities in health care centered on diseases and illnesses that disproportionately affect minorities, homelessness, unemployment, lack of clear understanding of VA claims processing and benefit programs, limited medical research and limited statistical data relating to minority veterans.”
The CMV’s mission is to identify barriers to service and health care access, increase local awareness of minority veteran-related issues and improve minority participation in existing VA benefit programs. As a result, VA medical facilities throughout the country are implementing strategies to provide veterans of color with more accessible, culturally sensitive care. Each VA health care facility has a Minority Veterans Program Coordinator (MVPC) who serves as a liaison and advocate for minority patients. And VA health care professionals are taking the lead in developing innovative solutions for closing the gap of health disparities, from outreach programs designed to increase minority veterans’ use of services to diversity training programs aimed at increasing staff members’ understanding of patients’ cultural needs.
Not surprisingly, nurses are playing key roles in these efforts. Here’s a look at how individual nurses are working to improve health outcomes for minority veterans, one program at a time.
Native American Outreach
Bruce Kafer, MSN, RN, is a member of the Oglala Sioux (Lakota) Tribe that resides on the Pine Ridge Indian Reservation in South Dakota. Adopted as an infant by white parents, he grew up with virtually no knowledge of his tribal culture. After tracking down his birth mother in 2000, he began to learn about his lost Indian heritage from his Tiospaye (Lakota extended family) and tribal elders. Now, as American Indian/Latino Outreach Coordinator at the Louis Stokes Cleveland (Ohio) Department of Veterans Affairs Medical Center, Kafer is drawing on his rediscovered heritage to provide culturally sensitive healing to Indian vets.
Kafer, who works with Native veterans both in Cleveland and in Arizona, is also a PhD student at Case Western Reserve University in Cleveland, where he is conducting research with Indian vets to add to the limited body of knowledge available about this population. Through his research, he has discovered some compelling statistics about Native Americans who have fought for their country. During World War II, for example, 40% of the Cheyenne Nation volunteered service to the U.S. military. During the Vietnam War, 90% of eligible Cheyenne volunteered for duty, with the overwhelming majority serving in combat areas. Yet despite this long-standing history of service, Native Americans have historically underutilized VA services, Kafer says.
“Part of my role,” he adds, “is to help bridge that gap and make services more accessible.” To accomplish this, Kafer does outreach to the American Indian community, participating in powwows and other cultural events, visiting reservations in remote locations and working with Native veterans and elders from a variety of tribes to develop culturally appropriate programs.
There are about 562 federally recognized Indian tribes in this country and 365 state-recognized tribes, each with their own unique cultural traditions and, in many cases, their own indigenous languages. Therefore, VA nurses who work with Native veterans often find themselves treating a patient population that is not homogeneous but highly diverse—a concept Kafer calls “diversity within diversity.” Still, he says, while culture and language may differ from tribe to tribe, there are some basic beliefs about health, illness, healing and spirituality that are common to all Native people.
“In traditional Native American culture, health and healing begin first in the spirit, then the mind, then in the body,” he explains. “In the Western model of health care, it’s an opposite paradigm—health and disease begin first in the body, then in the mind, last in the spirit.”
Kafer won an award from the Society of American Indian Government Employees (SAIGE) for a VA diversity training video he helped produce, called “Native America: Diversity Within Diversity.” Created as part of the VA’s R.E.A.C.H. for Diversity program, the video has been distributed to all VA medical centers nationwide to increase employees’ understanding of the unique challenges Indian veterans face.
“Native America resonates with me and my history,” Kafer says. “I’m in a unique position to contribute to improving health care for Native American veterans because I understand about bureaucracy, government and the various phenomena that can impact tribal access to health care.”
Kafer is also involved in another innovative diversity training project, the Gathering of Healers program at the Southern Arizona VA Health Care System in Tucson. The program brings the facility’s staff together with Native veterans and elders to learn more about American Indian culture and how to provide culturally competent care.
“Staff come back from the Gathering of Healers and are more aware of the special needs of this [population],” says Yvonne Garcia, BSN, RN, the facility’s American Indian Nursing Case Manager. “They learn to treat people with cultural humility. They want to know more about them instead of making assumptions.”
Garcia, who is part Mandan Indian, also works with the Indian Health Service to complement services delivered to Native veterans.
Researching Health Disparities
Carol Baldwin, PhD, RN, CHTP, CT, AHN-BC, associate professor and director of the Office of International Health, Scientific and Educational Affairs at Arizona State University College of Nursing and Healthcare Innovation in Phoenix, is a nurse researcher who has focused some of her recent work on studying chronic disease disparities in Mexican American veterans, a population about whom very little health information is available. She led one study which found that, compared to non-Hispanic white veterans, Mexican American veterans were significantly more likely to have diagnosed type 2 diabetes and that having a high body mass index (BMI) put them at greater risk of developing the disease.
More recently, Baldwin published a study in the September 2007 issue of the Journal of Nursing Scholarship that compared homocysteine levels and other stroke risk factors between Mexican American and Caucasian male veterans. High homocysteine levels in the blood have been associated with increased risk of cardiovascular diseases, such as coronary heart disease and stroke.
Baldwin conducted her research in Tucson at the Southern Arizona VA Health Care System’s Minority Vascular Center. She found that Mexican Americans have higher homocysteine levels regardless of whether they scored a high or low risk for stroke. She also determined that the Framingham Stroke Profile, a commonly used stroke risk assessment tool, was derived for a predominantly Caucasian population and does not necessarily provide relevant stroke risk factors for people of other races and ethnicities.
Baldwin says her findings suggest that Mexican American veterans, like other minority populations, face barriers to stroke prevention and therapy, including lower income and education, as well as dietary, genetic and environmental factors.
There has also been very little research conducted on the health care needs of Puerto Rican veterans, says Constance Uphold, PhD, ARNP-BC, FAAN, a research health scientist with the Rehabilitation Outcomes Research Center at the North Florida/South Georgia Veterans Health System in Gainesville. Her current work focuses primarily on the health challenges experienced by Puerto Rico veterans returning from Operation Enduring Freedom (OEF) and Operation Iraqi Freedom (OIF).
In one study, Uphold—who has a master’s degree in transcultural nursing and a doctoral degree in family health nursing—examined mental health issues affecting Hispanic veterans and their caregivers and families. She documented stressors from each group’s perspective, as well as successful coping models. Based on her findings, Uphold and her colleagues developed 12 culturally competent fact sheets for veterans, family members and clinicians. These educational materials are tailored to Puerto Rican veterans, complete with colors and symbols from the Puerto Rican flag. She’s now working to secure funding to reproduce and disseminate the fact sheets.
This past February, Uphold became a co-investigator of a grant that will research stroke interventions and family caregiving for Hispanic veterans, as well as how to disseminate stroke prevention information to this population. The Spanish-language information will be posted on MyHealtheVet.com, an interactive Web site that encourages veterans to take charge of their own health.
Promoting Health Literacy
Teaching minority veterans with chronic diseases how to self-manage their conditions is also a priority for Jawel Lemons, RN, MS, FNP-C, associate director of Patient Nursing Services at the Charlie Norwood VA Medical Center in Augusta, Georgia. Lemons remembers watching her own father struggle with his health. The man who raised her had a third-grade education and couldn’t read the directions printed on his medicine bottles.
“I thought, ‘If he wasn’t living with me, what would he do?’” she says. “That’s when I came up with the idea for the labels.”
The “labels” in question were part of a highly successful health literacy program Lemons created and implemented at the Dallas VA Medical Center in Texas before transferring to her current position in Augusta last year. As a cardiology nurse practitioner in the medical center’s congestive heart failure clinic, she often received referrals from primary care providers for patients who appeared to be noncompliant with their medications. Assessing the situation, Lemons discovered that the real reason why the veterans weren’t taking their medicine was that they had low literacy levels and couldn’t understand the instructions printed on their prescription labels.
So she designed a protocol for teaching her low-literacy patients how to take their medications correctly, using pictures instead of words. She found colorful, easy-to-understand computer clip art symbols, copied them onto adhesive labels and stuck them on the patients’ medicine bottles. For example, a rooster pictured with a sunrise symbolized a morning medication, while a bed indicated a nighttime medication. Lemons also transferred the same symbols to the patients’ pill boxes. As a result, the patients’ health improved dramatically.
VA Travel Nurse Corps
Her current goal is to establish special needs clinics across the VA system, with physician consults on site and nurses who are trained to make sure medications are properly labeled. She also hopes the concept of using picture labels will catch on with pharmacies.
Another way Lemons is empowering minority veterans to take control of their health is by providing them with culturally relevant dietary guidelines. “A lot of our [patient education] information is geared toward the average [majority] American, but there’s not much on the different cultures,” she notes.
Suggested menus for a low-salt diet, for example, are usually designed with Caucasian patients in mind and don’t always address the foods that African American or Hispanic patients may include in their regular diets. Lemons provides her patients with the general list of approved foods, but she also offers additional food lists that take into account a patient’s particular culture.
This is another example of how minority patients can be labeled as “noncompliant” when the real problem is that they simply could not overcome cultural barriers to their care, Lemons emphasizes. “If they don’t understand how to eat and take their medicine, they’re not in control of their ailment,” she says. “It really impacts the cost of health care when you have people who end up in the hospital over and over because they just don’t understand what they’re supposed to do.”
One of the Department of Veterans Affairs’ newest initiatives for increasing minority veterans’ access to culturally sensitive nursing care is the VA Travel Nurse Corps (TNC). Designed for RNs who prefer the flexibility and adventure of travel nursing, this program will establish an internal pool of nurses who can be available for temporary, short-term assignments at VA medical centers throughout the country. The TNC deployed its first nurse in December 2007.
Jacqueline E. Jackson, RN, MS, MBA, director of the TNC, says the new program is actively recruiting nurses from culturally diverse backgrounds. “[Minority] VA nurses bring not only cultural competence but respect and acceptance to the many culturally diverse patients under VA care,” she explains. “Nurses in the VA Travel Nurse Corps have an opportunity to travel the country working with a diverse VA patient population and a diverse VA workforce.”
For more information about the VA Travel Nurse Corps, visit www.travelnurse.va.gov.
Who Are Today’s Veterans?
Estimated U.S. Veterans Population: 23,532,000
Number of Total Enrollees in VA Health Care System (FY 2006): 7,900,000
Veteran Population by Race:
- White Non-Hispanic 80%
- Black Non-Hispanic 11%
- Hispanic 6%
- Other 3%
Veteran Population by Gender:
Percentage of Veteran Population Age 65 or Older: 39%
Source: Department of Veterans Affairs, October 25, 2007
by | Mar 30, 2013 | Magazine
Over the years, a multitude of research data has confirmed that occurrence rates for breast cancer are lower for minority women than for Caucasian women. In fact, Native American women have a lower incidence rate for this disease than most other racial and ethnic groups. [INSERT STATISTICS FROM OMHC] These statistics would seem to indicate that minority women have an advantage over white women in terms of reduced breast cancer risk.
But a look at survival rates for this disease reveals a starkly different picture. Recent studies by Gulattee1, Fulton, Rakowski and Jones2 and others have shown that women from racial and ethnic minority groups have a substantially higher relative breast cancer mortality rate than white women. Skinner and associates3 cite data from the National Cancer Institute demonstrating that the five-year survival rate for breast cancer is 81% for Caucasian women, compared to only 64% for African-American women. Furthermore, other research has shown that the five-year survival rate for Hispanic women is 4% lower than for non-Hispanic white women2 and that Native American women have only a 53% five-year survival rate compared to Caucasian women.4
These statistics paint a bleak picture. Minority women are less likely to contract breast cancer than white women—yet they are far more likely to die from the disease. Ironically, one reason for this disparity is the fact that, because the occurrence rates for women of color are lower, health providers often do not consider breast cancer an important issue for minority populations. Therefore, breast cancer in minority women is less likely to be diagnosed in the disease’s earlier, more treatable stage.
For example, in 1993 the National Cancer Institute noted that “[because of low occurrence rates], it may not [italics mine] be a high priority baseline mammograms. Referrals for breast lumps are sometimes prioritized as low as a ‘seven’ on the Indian Health Service’s priority list, which can result in a year’s delay for referrals for clinical breast examination.”5
Not an Option?
While a number of different treatments for breast cancer exist, the options most frequently offered to patients are either a lumpectomy with radiation therapy to the breast and lymph node area, or a mastectomy. (Chemotherapy may be prescribed along with either treatment.) Although studies have found both treatments to be equally effective6, removing the entire breast is a far more radical and disfiguring procedure that can be extremely traumatic for many patients.
In 1999, I conducted a study examining the life patterns of Native American women who had experienced breast cancer. For this project, which was the basis of my doctoral dissertation at the University of Minnesota in Minneapolis, I conducted in-depth interviews with 10 Native American women, on an average of three times each. First, the unique life pattern of each individual woman was chronicled; then I looked for commonalities among the group’s life experiences.
The participants were not initially asked about their breast cancer experience. The primary interview question was simply: “Tell me about the most meaningful people and events in your life.” Nevertheless, each of the women reported that her breast cancer was one of the most important events in her life.
One of the most surprising findings was that all 10 of these minority women had undergone either single or double mastectomies. None had been treated with a combination of lumpectomy and radiation therapy, which would have allowed them to keep their breasts.
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Moreover, not only did each of these 10 women have a mastectomy but, when they spoke of relatives and [Native American] friends who had experienced breast cancer, all of these people except one had also had mastectomies.
While the study was qualitative, and therefore not intended to be statistically valid, this finding was disturbing. Moreover, it could not be attributed to a local phenomenon. These women did not come from just one or two communities. I deliberately sought participants from different parts of the country, to protect their anonymity. Because I chose participants from within a radius of up to 260 miles from me, some of them lived as far away as 520 miles from each other.
The results of this study raise some troubling questions about breast cancer treatment options for minority women. Do health care providers recommend mastectomy as the treatment of choice more often for women of color than they do for Caucasian women? If so, why? What are some of the factors contributing to minority women’s decision to have a mastectomy even though this treatment method is much more mutilating than a lumpectomy with a lymph node dissection and radiation therapy? Are minority women offered enough of a choice between these two procedures? Do they have enough information about the different treatment options available to them?
In Mourning
As the 10 Native American women I interviewed shared their feelings about having had mastectomies, it became clear that several of the participants were indeed traumatized by the experience. “Sarah” (not her real name) found a lump in her breast and had a mastectomy several weeks later. Within a year, cancer appeared in her other breast, resulting in a second mastectomy. Sarah related how she mourned the loss of her breasts. She also suffered from depression after the mastectomies.
“Cheryl” discovered a lump in her breast about the size of the end of her finger. The biopsy revealed a “multifocal carcinoma.” She was referred to an oncologist in a larger town who told her she had a 95% chance of eventually having cancer in her other breast as well. Cheryl had a mastectomy in her right breast and, after being pressured by family members, also had her left breast removed as a preventive measure. Nearly five years later, she continues to mourn the loss of her breasts. Cheryl regretted not getting “a second and possibly third medical opinion.” She still views her breastless body as repulsive.
At age 46, “Martha” was diagnosed with breast cancer when she had a physical examination after being hired for a job working for the federal government. Martha feels “unbalanced” without the breast that was removed. She continues to grieve over her loss.
“Callie” had her first mammogram when a friend suggested that the two of them go together to have breast cancer screening. Callie’s mammogram looked suspicious, and a biopsy confirmed a malignancy. Although Callie was given the option of either a mastectomy or a lumpectomy with chemotherapy and radiation, she chose the mastectomy because she felt “it would be easier on the whole family” and because a close friend had recently had several lumpectomies and within a few months had to have both breasts removed. After the mastectomy, Callie was unhappy with wearing the breast prosthesis and the special bra to accommodate the prosthesis. She said it was uncomfortable and very hot in summer, but she felt that people stared at her if she didn’t wear it.
Unanswered Questions
These accounts suggest that minority women and their families may not be receiving enough information about what the mastectomy procedure involves, and about the effectiveness of alternative methods, to make well-informed decisions about which breast cancer treatment option to choose—if they are indeed presented with a choice of options in the first place.
Clearly, more research is needed in this area. The most critical questions are: Do minority women diagnosed with breast cancer receive a greater proportion of mastectomies than breast cancer patients in the general population? Are Caucasian women more likely to be treated with lumpectomies and lymph node dissections than women of color? And if so, what are the reasons for these treatment disparities?
Beyond this, however, we also need to examine broader issues. Who makes or strongly influences minority women’s treatment decisions? What information do women have prior to the crisis time when a decision needs to be made? What role do nurses play in this scenario—and what role should they be playing? Is more intervention by nurses needed to increase minority patients’ chances of being fully informed and treated fairly? These are questions to which we, as professional nurses, must search for answers.
References
1. Gullattee, M. (1999). “Breast Health and Culture: Issues for Nursing Practice.” Georgia Nurse, 59 (1), 18-20.
2. Fulton, J., Rakowski, W. and Jones, A. (1995). “Determinants of Breast Cancer Screening Among Inner-City Hispanic Women in Comparison with Other Inner-City Women.” Public Health Reports, 110 (4), 476-482.
3. Skinner, C., Sykes, R., Monsees, B. and Andriole, D. (1998). “Learn, Share and Live: Breast Cancer Education for Older, Urban Minority Women.” Health, Education and Behavior, 25 (1), 60-78.
4. Palos, G. (1994). “Cultural Heritage: Cancer Screening and Early Detection.” Seminars in Oncology Nursing, 10 (2), 104-113.
5. National Cancer Institute (1993). What You Need to Know About Cancer. National Institutes of Health Publication No. 94-1563. Revised April 1993.
6. Thomas, S. and Greifzu, S. (2000). “Breast Cancer.” RN, 63 (4), 41-47.
by | Mar 30, 2013 | Magazine
It is certainly no secret that American Indians suffer disproportionately from many serious health problems, including diabetes, cancer, AIDS and substance abuse. Nor is it news to most nursing professionals that more research into the causes of these health disparities is urgently needed in order to develop effective, culturally competent prevention and treatment programs. But despite this common knowledge, American Indian populations and their culture are familiar yet foreign to much of the nation’s nursing community.
Because Indians are severely underrepresented among the ranks of nurse scientists, many non-Indian nurses have conducted research in Indian communities–or have attempted to do so. The key factor in determining whether such research projects will be successful or fruitless is the nurse’s awareness of, and ability to overcome, the unique challenges involved in working with Indian populations. Many of these challenges relate specifically to the issue of conducting research in a manner that is culturally sensitive to Indian communities’ needs.
The first challenge researchers must meet is that of establishing trust and proving their commitment to conducting research in a culturally respectful way. Many Indian tribes are distrustful of outsiders and do not welcome researchers into their communities. Furthermore, Indian communities have been the focus of hundreds of research studies over the years but have not always had the opportunity to benefit from these projects and their findings. Because of this overuse of Indian communities, many tribes have become closed to non-Indian researchers.
Nurse researchers need to understand that it takes time to build trust. Sometimes, getting a research project started in a tribal community can take one to two years–or more–of preparation before the researcher can even begin the study. Therefore, researchers not only need to be committed to overcoming barriers of distrust but must also be willing to commit time to getting access to the Indian community.
Getting It Right
There are several culturally sensitive steps a researcher can take when preparing to conduct a study in an American Indian community. The first step is to identify what type of Indian community it is–a reservation, a non-reservation community, an Indian nation, a tribe, a band, a federally or non-federally recognized tribe or an urban community.
This knowledge is important because there are cultural and historical differences between these various types of communities, such as languages, degrees of assimilation, means of identifying tribal members, and sustained cultural practices, to name a few. There are also differences in community size, tribal governance and the tribe’s relationship with the U.S. government. Researchers must be familiar with these distinctions in order to address the community and its members knowledgeably and appropriately.
For example, an Indian reservation is a self-contained tribal entity with its own government, governing rules and land base, while a non-reservation Indian community–such as those in Oklahoma–may have a tribal government but not the land base. The terms “Indian nation” and “tribal nation” refer to the largest Indian communities, while “band” usually refers to smaller groups of people within one tribe–e.g., the Ojibwe tribe has many bands, and the governing structure for each band may vary. Therefore, members of an Indian nation may be offended if an outsider calls it a band or a tribe, and vice versa.
Researchers also need to consider the region of the U.S. in which the Indian community is located–e.g., Southwestern, Southeastern, Northwestern, Eastern, state of Oklahoma or state of Arizona. Each region has had its own impact on the history and development of the Indian communities it contains.
For example, in Oklahoma during the territorial days, the state was made up of many Indian reservations. But in the early 1900s these reservations were taken away from the tribes, and each enrolled Indian person was instead given a parcel of land. This change in the land base dramatically altered the way of life for Oklahoma Indians.
In addition to learning as much as possible about an Indian community’s history, structure and culture in advance, a researcher preparing to conduct a study in that community may also want to visit the area. Much can be learned from visiting the community’s cultural center, attending a public Indian event in the community, visiting a historical Indian site, talking to the local Indian people and becoming familiar with the local customs.
When visiting the Indian people, a researcher who is culturally sensitive will ask them how they prefer to be addressed and how they want to be identified. For example, members of the Navajo Nation may prefer being identified as “Diné” rather than “Navajo.”
It’s also important to let the Indian people reveal information about their community in their own way and in their own time. If you ask them direct questions, you might not get answers. Indian people believe in developing a oneness of spirit with another person before information can be exchanged.
Working With What You’ve Got
Another challenge a researcher may need to overcome is the limited availability of resources in an Indian community. Because many tribal communities are poor and do not have economic development, the people who live there generally lack financial resources as well as adequate housing, transportation, sanitation, clothing or food.
Furthermore, many Indian communities are located in remote and rural areas of the country where access to necessary resources and services is severely limited. In the Deep South, for example, there are many small Indian communities in rural areas where there is no public transportation and no emergency services, hospitals, clinics, or physicians nearby to care for the Indian people. These people must drive long distances to receive health care–if they even have a car.
When conducting a research study, these kinds of factors can influence the outcome of the project. For instance, the Indian people may not even be able to arrange transportation to participate in the study. You will have to bring the study to them.
Difficulty in obtaining a large enough sample size is still another obstacle that can prove frustrating for nurses who want to conduct research studies in an Indian community. The largest tribe in the U.S. is the Navajo Nation, which has over 250,000 enrolled members, followed by the Cherokee Nation with around 222,000 enrolled members. Most tribes, however, are much smaller in size, averaging only a few hundred or thousand tribal members. As a result, American Indians are often not included in studies examining significant health problems like breast cancer and lupus, because the sample size is too small to be statistically valid.
It is not always easy to find a solution to this problem. Some experts suggest grouping several small tribes together to increase the sample size, while others argue that this method is not always culturally appropriate and that tribes do not like to be “lumped” together in this way. Another possible approach would be to explain the reason for the small sample size and adjust the statistical significance accordingly. For example, if 50% of the people in a tribe are diabetic, this is a significant finding even if there are only 250 tribal members.
Creating Co-Ownership
Because of the negative research experiences they have had in the past, many Indian communities are now demanding more respect from outside researchers, as well as a greater sense of co-ownership in the study before, during and after it is conducted. To be culturally sensitive, nurse researchers must strive to develop a more “equal” partnership with the tribe.
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Traditionally, many researchers have only wanted tribal communities to assist with recruitment of subjects and nothing else. Once the data was collected, the researchers never returned or followed up with reporting the findings back to the community. The tribes did not know the outcomes of the studies. The researcher benefited from the study while the tribe received few, if any, benefits from its members’ participation in the project.
Tribes are also raising questions about who owns the data from a research study conducted in their community and are demanding more control over how the data is handled. In some studies, the findings were not only published without any input from the tribal community but also published in a way that reflected negatively on the tribe.
To cite just one example, a researcher who conducted a study on health problems occurring in an Indian community in the Midwest did an interview with a local newspaper about her findings. She did not get an opportunity to review the reporter’s article before it was printed. When the article appeared, it contained disparaging and factually inaccurate comments about the tribe’s cultural traditions and how they allegedly contributed to the Indians’ health problems.
In addition, much of the research that has been conducted with Indian populations has tended to put too much emphasis on the “culture of poverty” in tribal communities. By focusing on the effects of poverty on Indian peoples’ way of life, many researchers have overlooked the strengths of the Indian community. As a result, a growing number of tribes are insisting that researchers focus on tribal and cultural strengths instead of on health deficits.
For instance, many studies have been conducted about the breakdown of American Indian families but very few have explored the positive aspects of Indian family life. One notable exception was a recent study on Indian parenting in which the researcher described how Indian mothers parented in such a way that the harmony (natural development) of their children’s lives was promoted through passive forbearance (the Indian pattern of care).
The Indian mothers did not parent in a way that controlled their children’s development but rather in a way that enhanced natural development through unobtrusive, respectful behaviors like listening, observing and being an example to others. In other words, the researcher chose to focus on the cultural patterns of parenting instead of on how poverty impacted the parenting.
Because of these kinds of experiences, tribes that participate in research studies want more of a say into the interpretation and dissemination of the findings. A researcher may need to include the tribe in the analysis of the data and get tribal approval for publication of the findings. This kind of tribal involvement can be written into the research proposal.
Finally, many Indian communities have become more “research-savvy” in order to better protect their interests. Many tribes now have their own Institutional Review Boards (IRBs) to which potential researchers must submit their proposals. Nurses who wish to do research in a particular Indian community need to become familiar with the appropriate procedure for obtaining the tribe’s permission to conduct the project. You may need to not only get the tribal IRB’s approval for human subjects but also get approval from either the tribal chief or tribal council.
In one research study conducted with a Southwestern tribe, the researcher had to first get approval from two tribal subcommittees and then go before the 15-member tribal council before approval for the project was given. The entire approval process required five visits with the tribe, and it took six months before the final decision was made.
Sometimes tribes will “barter” with researchers to ensure that both sides benefit equally from the partnership. For example, members of one small tribe in the Deep South successfully negotiated an arrangement in which the researcher agreed to assist them in writing an economic development grant in exchange for their participation in the study.
Playing by the (Cultural) Rules
In summary, nurse researchers must remember two important ethical principles when conducting studies in American Indian communities. The first is right to informed consent. The tribe needs to know the purpose of the research, who will benefit from the research, and how the research will be conducted with appropriate tribal input.
The second principle is do no harm. The researcher has an ethical duty to protect the tribal community by not violating cultural norms, by not publishing findings without approval from the tribe and by taking measures to protect the Indians’ culture. By following these rules of cultural sensitivity and respect, nurse scientists will greatly increase their chances of successfully overcoming the challenges of conducting much-needed research on American Indian health disparities.
