Somewhere in rural North Carolina, an 85-year-old Cherokee Indian, who never attended school himself, can take credit for inspiring the career of his son—a nurse scientist whose groundbreaking research on Native American health issues has brought him to the pinnacle of the nursing profession.
In 2007, John Lowe, PhD, RN, FAAN, associate professor at Florida Atlantic University (FAU)’s Christine E. Lynn College of Nursing in Boca Raton, was inducted as a Fellow of the American Academy of Nursing—only the fourth-ever American Indian nurse to achieve that honor. That same year, Lowe was named Florida Nurse Educator of the Year, and the National Institute on Drug Abuse (NIDA) awarded him a $1.35 million grant to study substance abuse interventions for Cherokee adolescents.
Lowe, who is a founding member of the Native American Nursing Scholars Institute (NANSI) and one of only 14 doctorally prepared Native American nurses in the nation, grew up in a Cherokee farming community in the Southeast. He now splits his time between Florida and Oklahoma, where almost 270,000 members of the Cherokee Nation live in a 7,000-square-mile area in Northeastern Oklahoma. Lowe credits his father, a full-blood Cherokee, for being the impetus behind his more than 20-year career in researching solutions to Indian health disparities.
“My dad has really been my inspiration for the work that I do,” says Lowe, whose mother died when he was young.
“He did not have the problems that [so many other] Native people experienced [such as alcoholism and diabetes], so I wanted to know why he did so well when others didn’t.”
Overcoming Discrimination
Like many other pioneering minority nurse leaders, Lowe initially had to overcome barriers of racial discrimination to become a nurse—a career he chose in high school after relatives, some of whom were nurses themselves, suggested it.
“I was interested in helping people and I was always the one who was kind of caring for others, and even the animals around us,” he says.
His high school had a licensed practical nurse program that Lowe enrolled in upon the advice of a school counselor, who leaned across her desk one day and said in a quiet voice that people like Lowe (Native Americans) usually become LPNs rather than RNs.
“So I said, ‘I guess that’s what I have to do,'” Lowe remembers. However, it didn’t take long for him to realize he was capable of moving beyond the LPN level, and by 1981 he had earned a bachelor’s degree in nursing from Eastern Mennonite College in Harrisonburg, Virginia.
One of Lowe’s first experiences providing nursing care to patients came immediately after earning his BSN, when as part of Mennonite Health Care Missions, he worked in Tanzania in a mobile clinic that offered maternal and child health care. After returning from Tanzania, he accepted his first job as a staff nurse, working in the orthopedic unit at Riverside Hospital in Newport News, Virginia. After a 15-month stint as a preceptor for nursing students and new employees at Riverside, Lowe moved to Oklahoma, where he worked at the City of Faith Hospital in Tulsa—first as a medical/surgical staff nurse, then in an administrative position. He later moved to a position in the hospital’s chemical dependency unit, working with adolescents who were struggling with alcohol and drug addiction—an experience that would ultimately shape the focus of his future research career.
Meanwhile, Lowe began working on a master’s degree in nursing from Oral Roberts University in Tulsa. He received his MSN in 1986 and began teaching at the Oral Roberts University Anna Vaughn School of Nursing. During the next few years he began developing an expertise in transcultural nursing. He worked with international students at Oral Roberts, served as a community health instructor for senior nursing students at the Cherokee Nation and traveled to China, Jamaica and Costa Rica, where he provided primary care and taught health promotion and disease prevention.
Lowe moved to Florida in 1991 and worked at various hospitals on a per diem basis while pursuing a doctorate at the University of Miami, which at the time had a transcultural focus at the doctoral level. That same year, he began teaching at Florida International University as an adjunct faculty member, then as a visiting professor and, just before earning his PhD in 1996, an assistant professor. He joined the nursing faculty at FAU in 2003.
Cherokee Self-Reliance
Lowe’s master’s thesis, “The Social Support That Contributed to the Abstinence from Substance Abuse After Treatment in the Native American Young Adult,” set the stage for a career in researching culturally competent interventions for reducing American Indian health disparities, with a particular emphasis on treating and preventing substance abuse in Native adolescents.
“It sort of evolved, since I was [already connected there through my work with teens in Oklahoma], and because I was familiar with the issues and with the substance abuse [problems in the Native community],” he says.
As Lowe began investigating why his father had managed to avoid substance abuse and other serious health problems common to Native Americans, he came to the realization that it was because his dad had been able to incorporate his Cherokee culture and traditions into his life. Unlike many other American Indians growing up in the early 20th century, Lowe’s father did not attend one of the infamous boarding schools that were designed to assimilate Native people into the white majority culture by separating them from their families and communities.
“He was able to maintain a traditional way of living,” Lowe explains.
Off-reservation boarding schools for American Indian children were first established in 1878, when Captain Richard H. Pratt opened the Carlisle Indian School at an abandoned military post in Pennsylvania. Pratt’s goal was to assimilate American Indian children into European culture by forcing them to abandon their Native culture—a concept he called “killing the Indian, not the man.”
The boarding schools were deliberately located far away from Indian reservations, and Native children and their families were discouraged from visiting one another. The students were forbidden to speak their language or practice their religion, and they were told that the Indian way of life was savage and inferior. Students wore military uniforms and were severely beaten for violating rules.
Those who returned to their Indian communities after leaving boarding school found they had a hard time fitting in. They had been stripped of their Native culture and identity by their experience in the boarding schools. Yet they didn’t fit into white culture either, because no matter how “non-Indian” they became, they would still never be viewed as an equal. So, if they weren’t Indians and they weren’t whites, then who were they?
This era became known as the “dispossession period” for American Indians. They had been “dispossessed” of their land and culture, yet they were not afforded the opportunities and services available to whites. This cultural destruction and other historical trauma, says Lowe, are the primary underlying causes of the severe health disparities that Native people face today.
Lowe realized that his father was able to stay physically and mentally healthy because he hadn’t been dispossessed of his culture and heritage. He knew who he was—he was Cherokee and proud of it. So it stood to reason that American Indian young people suffering from substance abuse problems might be helped by incorporating Native American cultural traditions into their lives.
Lowe’s doctoral thesis, “The Self-Reliance of the Cherokee,” which investigated the connection between traditional Cherokee values and the health of Cherokee people, became the theoretical framework for much of his subsequent research. Over the next several years, he conducted a number of studies that incorporated his Cherokee Self-Reliance Model—which consists of three components: being responsible, being disciplined and being confident—into interventions aimed at preventing substance abuse among Cherokee adolescents.
One such project, funded by the National Institute on Alcohol Abuse and Alcoholism, evolved from Lowe’s work at Florida International University with a program called Teen Intervention Project (TIP). He adapted the program for use in the Cherokee Nation school system and renamed it the Teen Intervention Project-Cherokee, or TIP-C.
“What TIP-C does is try to intervene early with teens who might be having some issues and have them go through this intervention, which is school- and culture-based,” Lowe says.
Some of his other recent intervention studies have focused on the use of Cherokee teen talking circles as a tool for preventing substance abuse and HIV/AIDS. The talking circle, a traditional Native American way of gathering and discussing issues, is characterized by mutual respect, equal say and no interruptions. “It helps turn the discussion into a much more powerful interaction,” says Lowe, who adds that everything discussed in the Cherokee teen talking circles is confidential. “It helps [the teens] open up, and they’re able to get in touch with all of the deeper issues that might be pushing them toward using [drugs or alcohol].”
Community-Based Research
Not all of Lowe’s research initiatives to improve health outcomes for Native Americans have been Cherokee-specific. He has also partnered with other doctorally prepared Native American nurse researchers on several landmark studies developed as part of the ongoing Nursing in Native American Culture project.
For example, he collaborated with the late Dr. Roxanne Struthers to develop a nursing model designed to guide American Indian and Alaska Native nurses in providing culturally competent care to Native patients. The model, “A Conceptual Framework of Nursing in Native American Culture,” was published in the Journal of Nursing Scholarship in 2001. Today, says Lowe, the framework is used by some nursing schools and tribal colleges to guide their curricula, helping both Native and non-Native nursing students learn to provide culturally competent care to the Native American population.
John Lowe, PhD, RN, FAAN (center, holding stick) regularly brings his nursing students to Oklahoma to volunteer in the Cherokee Nation community.
Collaboration is also the focus of Lowe’s current NIDA-funded project, entitled “Community Partnership to Affect Cherokee Adolescent Substance Abuse.” Drawing on both the success of TIP-C and on the experience and involvement of the Cherokee Nation community, the project uses a community-based participatory research (CBPR) approach to develop and evaluate different school-based interventions—some using the Cherokee Self-Reliance Model and some not.
One of the project’s key components is a steering committee made up of representatives from the Cherokee community. Formed in the study’s first year, the steering committee played a major role in assessing the community’s needs regarding substance abuse. Lowe then partnered with the steering committee to develop culturally appropriate intervention materials and outcome measurements. By involving the community directly in the research process, the CBPR approach is a culturally appropriate alternative to the so-called “helicopter research” conducted all too frequently in Native American and other minority communities. “So many times what researchers will do is [go into a research] site, collect data and leave,” Lowe explains, “whereas here I have a community steering committee that is helping to guide the entire research project.”
Now, in year two of the study, Lowe is comparing the effectiveness of the intervention methods he and the steering committee developed against standard school-based anti-drug interventions, such as the national Drug Abuse Resistance Education (D.A.R.E.) program. Another goal for years two and three of the project is to evaluate the impact of talking circles on helping Cherokee youth resist the pressure to become involved in substance abuse.
“Hopefully Cherokee communities will eventually adopt [this intervention program] as a service they want to provide in their schools,” Lowe says, “because there will be evidence that this is a better way of dealing with this issue.”
Getting His Students Involved
For the past three summers, Lowe has been bringing his class of Florida Atlantic University senior nursing students to Oklahoma to volunteer at the Cherokee Nation’s Healthy Nations Summer Camp for children ages nine to 12. The camp is dedicated to promoting physical fitness, health and wellness, and teaching children to make healthy choices.
“I wanted to create an intervention that would get to the heart of critical issues our Cherokee youth are facing, such as diabetes, obesity and substance abuse, and also allow the students to practice the Nursing as Caring theory that I teach at FAU,” says Lowe.
During the week-long camp, the nursing students—many of whom are of international origin and hail from countries such as Cuba, Jamaica and Haiti—live with the children, teach classes on nutrition and diabetes, and supervise them in a variety of physical activities. To strengthen Cherokee identity, the nursing students and children are organized into “clans.” The campers attend Cherokee language classes that emphasize the importance of family and caring; the nursing students enjoy a rare opportunity to observe and participate in Cherokee culture, such as powwows and traditional dances.
And during the spring and fall semesters, Lowe brings FAU nursing students to community schools within the Cherokee Nation to conduct health screenings and give presentations on disease prevention, health promotion and career opportunities in health care, while interacting with the Cherokee students about their own diverse cultures.
Lowe believes nurses who want to provide culturally competent care to Native American patients—as well as patients from other minority cultures—must “learn to become the learner.” Many times nurses and other health care professionals spend so much time becoming the “expert” that they forget they can learn a lot from their patients.
“So what happens is, you learn to assess people and then tell them what’s wrong with them and what you’re going to do about it,” he says. “You have to back up and learn from the patient or person in the community, and say: ‘You teach me.'”
Future projects Lowe wants to pursue include using Native American doctoral students to replicate and pilot the Cherokee community partnership study with other Indian tribes in other parts of the country.
Lowe is humble when asked to describe the legacy he hopes his work will leave, describing it simply as “giving something back” to his Cherokee family and community. Speaking at the 2007 National Alaska Native American Indian Nurses Association (NANAINA) annual conference, he summed up his remarkable career this way: “The bottom line is, I want to do research that makes a difference in improving the health of Indian people, beyond just having academic value.”
During the 2008 presidential campaign, then candidate Barack Obama promised that if elected he would work to “ensure quality, affordable, accessible health care for First Americans.” His campaign Web site stated that “perhaps more than any other group, American Indians understand that our health care system must be reformed and that disparities that affect American Indians—including significantly higher rates of diabetes and tuberculosis, and lower life expectancy— must be addressed and eliminated.” Specifically, the “Obama-Biden Plan to Improve First American Health Care” pledged to:
Increase funding support for the Indian Health Service (IHS).
Expand eligibility for Medicaid and the State Children’s Health Insurance Program (SCHIP) so that more American Indians can be covered.
Require that federally supported Indian health care services utilize proven disease management programs.
Tackle Indian health disparities by addressing differences in health coverage and promoting prevention and public health.
Flash forward to the present. As of September 2009, three-quarters of the way through President Obama’s first year in office, how many of those promises are actually being kept? How much has the Obama administration really done to improve health care for American Indians and Alaska Natives? Well, let’s look at the record so far:
In March, the president’s economic recovery legislation, the American Recovery and Reinvestment Act of 2009, allocated $500 million to the Indian Health Service to help the agency construct and modernize health care facilities, increase its use of health information technology and make other much-needed improvements in care.
That same month, President Obama appointed Yvette Roubideaux, MD, MPH, an assistant professor of family and community medicine at The University of Arizona College of Medicine, as the new director of IHS. Roubideaux, a member of the Rosebud Sioux tribe, has conducted extensive research on Indian health disparities and was co-director of the Coordinating Center for the Special Diabetes Program for Indians Competitive Demonstration Projects, a program that has implemented diabetes and cardiovascular disease prevention activities in 66 Native communities.
In August, the Department of Justice awarded more than $6.7 million in Recovery Act funds to 17 tribes in eight states to fight violence against women, one of the most serious health disparities in Indian Country.
The president’s FY 2010 budget, which took effect on October 1, calls for a 13% funding increase for the IHS—one of the largest increases in 20 years.
This may seem like a fairly decent start, considering everything else—including health reform legislation—that’s on the president’s plate this year. But is it enough? Some tribal leaders don’t think so, testifying before the Senate Committee on Indian Affairs that the 2010 IHS funding levels are nowhere near high enough. And according to an August 23 Gannett News Service article, “IHS officials say the $3.6 billion they received [in 2009] is a little more than half of what they need to fully fund the agency’s mission.”
A unanimous vote in the U.S. Senate made it official: Lillian Sparks is the new Commissioner of the Administration for Native Americans, a wing of the Administration for Children and Families at the Department of Health and Human Services. A Lakota woman of the Rosebud and Oglala Sioux Tribes, Sparks will head the ANA starting this spring, working with them to strengthen the social and economic stability of 562 federally recognized tribes. Health professionals may know the ANA from its partnership with the Indian Health Service and Mountain Plains Health Consortium to train Native American youth in Community Emergency Response Training (CERT)/First Responder (FR) training and emergency preparedness.
Sparks comes to the position with an impressive résumé: She started her career with a BA from Morgan State University and a JD from Georgetown. In 2004, USA Today magazine chose her as one of seven promising young Native American Leaders. She has served as the president of the Washington, DC, chapter of the Native American Bar Association and as a member of the National Congress of American Indians. Before being appointed Commissioner this year, Sparks was the executive director of the National Indian Education Association.
“Lillian Sparks will be an outstanding leader at the Administration for Native Americans,” said Health and Human Services Secretary Kathleen Sebelius. “She has devoted her career to supporting the educational pursuits of Native American students, protecting the rights of indigenous people, and empowering tribal communities. I look forward to working with her in the months and years ahead.”
Infant mortality. Sociologically, it is the litmus test for a nation’s overall health. Emotionally, it represents unfathomable loss.
Of course, nurses and other health care professionals must discuss the issue clinically, distancing themselves from the emotional ramifications. Yet, the shocking but rarely discussed statistics surrounding infant mortality in the United States merit more attention than calm discussion. Because when nearly twice as many minority babies are dying than their Caucasian counterparts, complacency is unacceptable.
There’s no dancing around the issue: African American infants are 2.5 times more likely to die than non-Hispanic white infants. Statistics are comparable among Native American infants. Research spanning the last 30–50 years shows these disparities have remained consistent for generations. On average the United States has an infant mortality rate of 6.7/1,000. Among non-Hispanic African Americans, the rates are nearly doubled, with 13.4/1,000 infant deaths, according to statistics compiled by Spong et al.1
The CIA publishes a list of the world’s countries ranked by their infant mortality rates. At the bottom, with the highest rates of neonatal deaths: Afghanistan, Angola, Somalia. At the top: Monaco, Singapore, Sweden. Where’s the United States? It doesn’t even crack the top 30, falling behind nearly all of its “first world” contemporaries.
Direct causes of infant death are primarily congenital anomalies/birth defects, followed by premature births, then SIDS. SIDS was the second-leading cause of neonatal deaths, but after years of concentrated efforts and outreach, it is now third. Yet, in some states, including Mississippi, Alabama, and Arkansas, the infant mortality rates among African Americans are comparable to those found in third-world countries, with 18–22/1,000 live births in certain counties.
The solutions seem so simple: take care of women before they become mothers and teach them how to properly care for their babies. But the statistics remain stagnant, pointing to an urgent need for more education, community resources, and government action. And, as always, nurses are on the front lines.
Spreading the word
The U.S. Office of Minority Health approached Tonya Lewis Lee, director of the documentary Crisis in the Crib, to act as its national spokeswoman for A Healthy Baby Begins with You Campaign about four years ago. She accepted, and soon learned the seriousness of infant mortality in the United States. She says she had no idea the rates were so high.
“I had to get involved to spread the word, to figure out why the rates are what they are, “Lewis Lee says. “I’ve learned a lot and shared a lot.” She says she is now healthier now than ever before. “I really feel that taking care of yourself first is critical,” she says. “We need to lead by example.” And the crux of A Healthy Baby Begins with You is teaching mothers the importance of self-care.
“Nurses have been extremely powerful in the information they give to patients,” Lewis Lee says. They have a relatively intimate relationship with patients, and with cross-cultural training nurses can help them at their most vulnerable and effectively treat people from different backgrounds.
Lewis Lee also works closely with the U.S. Health and Human Services Office of Minority Health’s Preconception Peer Educator (PPE) program, which coordinates student ambassadors educating others about healthy pregnancies. “The idea of peer education is great because it goes back to understanding the community they’re talking to,” Lewis Lee says. The program, which started with 60 students, now has over 1,000 ambassadors. “I’m very proud of our students,” Lewis Lee says. “It’s a movement. It’s a health movement for young people.”
Yet, while grassroots efforts are commendable, higher-level changes are needed as well. “A lot depends on what goes on politically,” Lewis Lee says. During the ongoing health care reform debate, infant mortality seems to be swept under the rug. Lewis Lee envisions a move toward preventable care, an improved focus on health disparities, and perhaps advances in genetic research and its affect on personal health, such as obesity.
Every child is an opportunity to improve the nation as a whole. “I don’t know that we as a nation really take the health of every citizen very seriously…. Some people we think are expendable,” Lewis Lee says. “Somehow we need to figure out a way to make that better.”
Room for improvement
“As a public health official, we are the eternal optimists,” says Garth Graham, M.D., M.P.H., F.A.C.P., Deputy Assistant Secretary for Minority Health for the Office of Minority Health at the Department of Health and Human Services.
Graham lists three reasons he sees potential for improvement in U.S. infant mortality rates:
Infant mortality is related to many other factors, such as the preconception health of mother, and with efforts to expand preventive care, “we will see healthier mothers” and subsequently, healthier babies.
Advances in medical care will continue to help care for premature babies and other complicated births, particularly as urban areas see medical advances.
A number of areas, such as Tennessee, following both local and federal efforts, has seen improved infant mortality rates, offering an imitable example and showing progress is possible.
But the eternal optimist acknowledged several obstacles as well, such as social determinants, lack of access to care, and high rates of teenage pregnancies. “The major challenge is how to deal with all of this holistically,” Graham says. “Nurses, more than any other profession, are on the front lines of infant mortality.”
Community resource nurses serve a key, multifaceted role in helping would-be and young mothers, Graham says. “We really want to encourage nurses…to be as proactive as they have been,” but even more so. “Nurses are more than just healers,” Graham says. They are influencers. “People who serve as role models make a huge impact.”
The situation in the United States
Despite the country’s wealth and technological advances, theUnited States’ infant mortality ranking has actually worsened since the 1960s, when the nation was 12th in the world. Today, according to CIA estimates, the United States is approximately 40th.
“This international standing is largely driven by large racial and ethnic disparities that exist in infant mortality in the United States,” says Peter C. van Dyck, M.D., M.P.H., Associate Administrator for Maternal and Child Health for the U.S. Department of Health and Human Services’ Health Resources and Services Administration. “If all United States infants had the infant mortality rate of white infants, the overall infant mortality rate would decline about 15%, and our infant rate mortality ranking would improve about four places.” The United States also lacks many European nations’ paid parental leave, welfare, and access to health care. “According to the latest data in 2007, less than 70% of women received prenatal care in the first trimester,” van Dyck says.
The clearest cause of racial disparity is the higher preterm birth rate for black infants. “Black women are four times as likely as white women to deliver very early,” van Dyck says. “This racial disparity may be caused by socioeconomic disparities not just in adulthood but across the lifecourse, stress and discrimination, environmental quality differences as a consequence of residential segregation (e.g., pollution, crime, access to parks and supermarkets), and also differences in infant sleep practices.”
Van Dyck points to the Patient Protection and Affordable Care Act of 2010 and its creation of the Maternal, Infant, and Early Childhood Home Visiting Program (MIECHV), a provision put in place “to respond to the diverse needs of children and families in communities at risk and provides an unprecedented opportunity for collaboration and partnership at the federal, state, and community levels to improve health and development outcomes for at-risk children through evidence-based home visiting programs.”
MIECHV aims to provide comprehensive health services to these children and families, particularly expectant mothers. “Maternal health, especially the health of the mother during the prenatal period, is a critically important factor to ensure a healthy birth outcome,” van Dyck says. Some of the benefits of home visits include decreased instances of smoking, substance abuse, hypertensive disorders, and domestic abuse. Regarding child health outcomes, families receiving home visits experienced lower risk of low birth weight children, higher attendance at well child visits, more prevalent health insurance coverage, higher intellectual, and improved rates of breastfeeding, among others.
“It is our vision that positive changes in maternal and child health outcomes will be significantly enhanced as the states implement evidence-based home visiting programs, embedded within a high-quality early childhood system,” van Dyck says.
Understanding and combating
“We strongly believe that a child needs a good beginning,” says Yvonne Maddox, B.S., Ph.D., Deputy Director of the National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH). She stresses that leaders need to take a more aggressive approach in making child health a top priority. “It is really very, very disappointing that we haven’t done more.”
In the infant mortality crisis, Maddox says other environmental factors must be taken into account as well, such as community and overall maternal health, the quality and accessibility of the health care system, the socioeconomic status of community, and public health regulations. “We are targeting all the areas,” she says.
Maddox focuses specifically with minority communities, including African Americans and Native Americans. Like the gross disparities that exist among black communities, Native American infants in some areas of the country, such as Minnesota and the Dakotas, are also twice as likely to die as their white counterparts. Routine nurse home visit to a young mother on a reservation, for example, may provide the hands-on care and continued support needed to ensure the child sees its first birthday. “It pains me” to see the extremes, Maddox says. “I don’t want my country to look this way.”
“We found that the way to address these issues is to launch strong education campaigns,” Maddox says. But health care providers also need to build a foundation of trust in their communities. As one of the most trusted professionals, nurses can hit the ground running.
“We need to really study these things in a systematic way,” Maddox says. And now, with the launch of the National Children’s Study, researchers are. Though still in the recruitment stages, this unprecedented study hopes to follow 100,000 children across the country from pre-birth to 21 years old. “There are a lot of things we can look at in 21 years.”
Researchers will monitor the environments American mothers and children occupy, and how factors such as air quality, nutrition, family dynamics, genetics, and culture affect children’s health, growth, and development. By working with expectant mothers, the study can incorporate the effects of family medical history and pre-pregnancy exposures on birth outcomes, providing important insights for the future.
Maddox says the study should shine new light on chronic issues such as obesity, autism, and depression/mental health. Though findings will be published throughout the study, researchers are years away from answers. Maddox hopes the economic downfall and recession do not damage the study’s viability—or the essential health care services already in place. “It’s critical that we work with our policy makers and educators,” she says. “We’re already working with such dismal numbers.”
Cultural competency
Minority communities may not participate in infant mortality outreach as often, Maddox says, perhaps due to lack of trust or simply not knowing the resources were available. Some may assume these at-risk groups do not “get it” or don’t want to try to improve the situation, but “the communities want information. They want to know. They want the facts,” Maddox says. Such misunderstandings make group feedback essential.
“Cultural competency in messaging is critical,” Maddox says. Nurses and other providers must figure out how to best interpret results of current and future studies so the message is crystal clear to patients. While pediatricians and OB/GYNs may be expected to educate their patients, information can get lost in translation. That’s where nurses come in. “They are able to communicate the message very substantially,” Maddox says.
Hispanic communities or Native American tribal groups may require a different set of tools than a predominantly African American community. Nurses of all ethnicities should understand these unique backgrounds and cultural sensibilities. Pregnant women, women with disabilities, and other special populations also require special targeted messaging. Even nurses in the trenches in these areas may not realize the importance of translating info for patients and the community at large.
With the SIDS campaigns of the 1990’s, colleges and universities teamed with health educators, faith communities, nursing organizations, and continuing education programs, working together to design a safe sleeping program. They produced literature describing proper infant dressings, approved cribs, and do’s and don’ts for new mothers and even other health care professionals. Nurses who completed the program then disseminated the materials.
“We found that the way to address these issues is to launch strong education campaigns,” Maddox says. Researchers also point to increased training of health care workers, like midwives and community clinic staffers, so there are enough caregivers to attend to these mothers and babies.
Government agencies like the NIH need to understand how communities interpret campaigns as well, Maddox says, making bolstering public trust another priority. As one of the most trusted professionals, nurses can hit the ground running.
Solutions for nurses
“Minority nurses bring a breadth of knowledge and experience to every aspect of health, contributing to excellence in health care for women and children,” van Dyck says. “Public health nurses, for example, are leading the effort for community-based approaches to resolve infant mortality disparities.”
There’s Healthy Start; the Healthy Mothers, Healthy Babies campain; and Lewis Lee’s A Healthy Baby Begins with You. Nurses can also use the Fetal and Infant Mortality Review (FIMR) process to coordinate community dialogue and address community-specific issues related to infant mortality, from bereavement and postpartum depression to barriers to care, SIDS risk reduction, and substance abuse. “Community-based FIMR is an action-oriented continuous quality improvement process with a significant role in building community partnerships, understanding community issues, and developing culturally sensitive interventions,” van Dyck says. There are roughly 200 such programs located throughout the country 40 and U.S. territories.
“Communities will address their health issues if given information and forum for resolution,” van Dyck says. “FIMR teams have learned that many health messages are not culturally and linguistically appropriate, are not reaching all of the varied ethnic groups in each community, and are not being delivered by a messenger specific to each group and whom the community trusts.” Consequently, FIMR has developed culturally appropriate educational materials and services.
Karla Damus, Ph.D., M.S.P.H., M.N., R.N., F.A.A.N., a clinical professor of nursing at Northeastern University in Boston and a member of the CDC’s preconception health expert panel and March of Dimes’ Nurse Advisory Council is looking for a paradigm shift in neonatal care.
People don’t understand, Damus says, that to fully understand infant mortality rates, they must also incorporate fetal mortality rates, including miscarriages. “Families are just as devastated” and women are just as likely to experience another negative outcome and increased risk with subsequent pregnancies. She encourages nurses and health care providers to widen their scope as well. It’s not just about infant mortality, but the “near-misses,” the sickly infants, the NICU. We don’t just want our babies surviving, but thriving, she says.
Damus says nurses and their patients can think of the uterus as a muscle subject to the same risk factors as the heart; just as with heart attacks and disease, health care providers should look at family history of preterm labor and pay attention to red flags. Doctors should also know the pregnant woman’s birth weight and whether she was born early or late. “We’re talking about these life course perspectives,” Damus says. “We’ve got to do everything we can for men and women”
Healthy start initiatives may be targeting pregnant women in black communities, but “you’ve got to make them healthier long before they conceive,” Damus says. “It’s all about wellness promotion.” Damus speaks with a tinge of annoyance, perhaps anger, about the lack of advocacy for folic acid. One of the simplest, most cost-effective solutions to curbing infant mortality rates seems to be an afterthought for many health care providers. All sexually active women should be encouraged to take folic acid once a day or more, she says. “Did you take your folic acid?” should be one of neonatal nurses’ first questions, Damus says. Social media can be used to disseminate daily folic acid reminders. She even wants to see scrub caps with that question emblazoned on it. But what seems like the most obvious solution—ensuring the health of the mother to protect health of her unborn child—just leads back to overarching health disparities nurses and health providers have been and must continue fighting.
“We still do lousy despite all our priorities, and that’s because families aren’t a priority,” Damus says. “This is science as well as social justice.” In addition to lackluster infant mortality rates, the racial and ethnic disparities don’t seem to budge. “We should be outraged that we’re not making progress,” Damus says. “Yet, there are places that do, that show it is possible.” Damus’ former home, the Bronx, had an infant mortality rate of 15/1,000. Now, it is lower than the U.S. average, a result of years concentrated efforts.
Damus also advocates full-term deliveries whenever possible, avoiding scheduled earlier births. She categorizes the phrase “near term” with the saying “you’re a little bit pregnant.” You either are or you aren’t, she says, and advocates allowing women to postpone delivering until they full term. And nurses must arm themselves with adequate information, like making themselves aware of any medications that can compromise pregnancies. They can even teach expecting mothers to count kicks later in their development (a practice now back in vogue, she says). She also advocates healthy intervals between pregnancies and making sure fathers are involved too. “All the other stuff is just wellness!”
“The nurse is key as the advocate,” Damus says. But she maintains: “we can do a much, much better job.”
Life goes on
At the end of the day, perhaps the solution isn’t so simple after all: we need healthier people—healthy from birth—to grow up and conceive the next generation of healthy babies. Quite the chicken-and-the-egg scenario, and one dependent on an embattled and changing health care system.
What might happen in the next 10–20 years? “I’m not sure,” Damus says. “I don’t expect big changes.”
“If we look at the trend of the past 15 years, we expect the infant mortality rate to decline further in the coming years,” van Dyck says. However, the rate of decline during those years was “modest,” even largely unchanged from 2000–2007. He says recent infant mortality rates have been influenced by increased births among women over age 35 and little improvement in smoking before and during pregnancy.
“We really have to involve all the stakeholders,” Maddox says: nurses and doctors, mothers and fathers, government and community leaders. With an issue as complex as infant mortality, there can never be enough resources and research.
“A country’s infant mortality rate is one of the most important indicators of health,” Maddox says. “We have a lot of work to do.”
Resource
Spong, Catherine Y. MD; Iams, Jay MD; Goldenberg, Robert MD; Hauck, Fern R. MD, MS; Willinger, Marian PhD. (2011.) “Disparities in Perinatal Medicine: Preterm Birth, Stillbirth, and Infant Mortality.” Obstetrics & Gynecology. April – Volume 117 – Issue 4 – pp 948-955.
Jessica Tomer is a former editor of Minority Nurse magazine.
Natural disasters are colorblind in terms of whom and how they strike. “When a disaster hits, it doesn’t hit by race, color or creed. It hits people who are humans and bleed,” says Marilyn Pattillo, PhD, GNP, CNS, deputy team commander of the Federal Emergency Management Agency (FEMA)’s National Nurse Response Team. Yet, how disaster victims react to displacement, illness and stress is very much culture-based.
“Cultural competence is an integral part of any disaster behavioral health intervention,” says Nadine Mescia, MHS, associate director of the Florida Center for Public Health Preparedness at the University of South Florida College of Public Health in Tampa. “In order to be effective, [health workers responding to disasters] must be aware of cultural differences among survivors and patients.”
This issue has taken on additional urgency in the aftermath of the heavily criticized government response to the devastation wrought by Hurricane Katrina. The delayed and muddled relief efforts were perceived by many African Americans as the product of institutional racism.
Nurses responding to natural disasters have precious little control over how government resources are apportioned, but they do have control over how they treat patients. The consensus among many nurses who responded to Katrina is that cultural competence was the norm in the immediate wake of the hurricane. This was because the first wave of responders consisted of local nurses with first-hand knowledge of the affected communities’ cultural needs.
“The immediate disaster response was handled by the local people,” explains Trilby Barnes, RNC, president and CEO of Medi-Lend Nursing Services in New Orleans and a member of the board of directors of the National Black Nurses Association (NBNA). Although the availability of care at some of the city’s hospitals was severely disrupted by the hurricane and subsequent flooding, Barnes says she was “one of the nurses who was still there to provide normalcy for the patients. [We were there] providing our cultural know-how [and] I do feel like it had a positive effect on the patients.”
“I didn’t see a [great] amount of discord [between health care workers and patients],” adds Father James Deshotels, SJ, APRN, a nurse and Jesuit priest who treated evacuees at the Superdome.
What Went Wrong
However, significant shortcomings in cultural competence arose in the following weeks and months, as new waves of disaster responders from across the nation–who lacked the local health professionals’ cultural familiarity with the affected communities of color–began to arrive.
Jennifer Field Brown, PhD, APRN, is the only white professor in the Nursing Department at historically black Norfolk State University in Virginia. When asked by the federal Substance Abuse and Mental Health Services Administration to work in a Louisiana shelter some six weeks after Katrina hit, Brown admits she was excited and jumped at the opportunity. But the racial and cultural tensions she observed during the two-week assignment have left her thinking for months.
“Many of the nurses were angry with the [largely African American] population that was still at the shelter,” she says. “There were many times when evacuees [said], ‘they don’t care about us.’”
Brown believes this perception was fueled by the cultural gap between the predominately poor and African American evacuees and the mostly middle class and white shelter staff. “[Some of] the response workers were appalled that some of the evacuees would not cash their checks because they had no family member with a checking account, [or] that they’d cash their checks and buy a TV. [The prevailing attitude among many of the shelter staff seemed to be] if you didn’t lose anything you are not entitled to anything.”
Deshotels, whose parents grew up in New Orleans, points out that strained race relations are not a new phenomenon in the Crescent City. “Because we have such a long history of racism and oppression [here], there is an always an air of tension and mistrust,” he says.
New Orleans used to have–and perhaps still has–a majority black population. Katrina scattered tens of thousands of the city’s African Americans throughout much of the country, so it is impossible to know for sure. But much of the city’s longstanding black middle class and working class have been displaced and have not returned. Cheryl L. Nicks, RN, CNNP, CGT, CLNC, CPLC, president of the New Orleans chapter of the NBNA, has been in touch with only three out of 65 members since the hurricane struck. She says, “Our chapter has basically been demolished.”
Caught Unprepared
Another shortfall in culturally competent health care that has worsened in New Orleans post-Katrina is the result of a dramatic and largely unforeseen population shift. In the place of many African American evacuees have come many thousands of Hispanic workers hired to help clean up and rebuild the city. Their arrival, a direct consequence of the hurricane, has amplified the difficulties the city’s public health system already faced in treating Hispanic patients.
The Roman Catholic Archdiocese of New Orleans created the Latino Health Access Network (LHAN) three years ago in response to the lack of sufficient health services for the Hispanic community. Shaula Lovera, director of LHAN, cites the absence of any evacuation information in Spanish as what she considers a typical example of the neglect faced by the Hispanic population before Katrina.
Now, the huge influx of Hispanic workers has dramatically increased the need for Spanish-speaking nurses and doctors. What used to be a small community of 14,000 in 2004 has grown to become a significant minority population whose access to health care is challenged by cultural, linguistic and economic barriers.
“These workers don’t make great salaries,” Lovera explains. “They have no access to Medicaid or Medicare. They don’t get health insurance from their employers.”
But often the biggest obstacle, she says, is simply navigating the hospital admissions process, with its personnel who don’t speak Spanish and its English-language forms that must be signed.
Before the hurricane, LHAN ran a Saturday clinic staffed by Spanish-speaking volunteer physicians and nurses. In 2002, before the clinic was established, only 2% of patients using LHAN’s services were Hispanic. But the number shot up to 17% after the clinic opened in 2003. This proves that Spanish-language medical attention was urgently needed, says Lovera.
The clinic, which was run by the Daughters of Charity, was badly damaged during the hurricane. Given the difficulties faced by Latino workers in getting treatment at local hospitals, LHAN has opted to bring bilingual nurses and doctors directly to the worksites. They give workers tetanus shots to guard against infections from accidents on the job and treat a series of common medical complaints. The lack of work boots, masks and gloves means that broken bones, sinusitis and cuts are a constant problem.
While this approach has been helpful, LHAN is stretched thin and has had to rely on volunteer doctors and nurses from outside the region. In lieu of always being able to find Spanish-speaking clinicians, they provide qualified medical translators.
Closing Knowledge Gaps
Based on these lessons learned the hard way, Lovera feels strongly that the federal government must focus on enhancing the cultural competence of disaster response teams. And she’s not alone. How agencies such as FEMA will respond to these recommendations from health professionals, if at all, remains to be seen. But in the meantime, a growing number of nursing educators are beginning to look at ways to fill this crucial knowledge gap.
Laura Terriquez-Kasey, RN, MS, CEN, is a member of a New York-based Disaster Medical Assistance Team (DMAT) that was sent to Louisiana following Katrina. The Department of Homeland Security’s National Disaster Medical System relies, in part, on a number of DMATs stationed throughout the country. The DMATs consist of highly skilled medical professionals that can be quickly deployed following a natural or man-made disaster.
Terriquez-Kasey’s previous disaster experience includes 9/11 and Tropical Storm Allison. “When I went into Allison and the flooding in Texas in 2001, we were a large group of nurses and it was very helpful to have the capacity to speak Spanish,” she says. Too often, Terriquez-Kasey believes, in the rush to “get everyone treated right away” the “cultural piece” of disaster nursing is simply overlooked.
It is an oversight that she tries to correct as a clinical lecturer at SUNY-Binghamton’s Decker School of Nursing. “There is a tremendous knowledge deficit in our health care where we don’t necessarily take the time to understand where the [patient] is coming from,” Terriquez-Kasey contends. “You can’t help someone if you can’t assess them, and if the patient doesn’t open up to you then you are really not doing your job.”
Pattillo, in her role with the National Nurse Response Team and as an assistant professor at the University of Texas at Austin School of Nursing, worries that too few nursing students receive proper training in this area. “Is cultural competency in disaster nursing being addressed? No. [Nursing schools] are not even addressing disaster nursing [in general] adequately.”
Still, Maria Warda, PhD, RN, dean of nursing at Georgia Southwestern State University in Americus, Ga., and vice president of the National Association of Hispanic Nurses (NAHN), believes there has been at least some progress in recent years. “[Considering that we were starting from zero], it is certainly a move in the right direction,” she argues.
Warda, who is an expert in Latino cultural competence, says she tries to instill in her students “an appreciation for and even a celebration of diversity. Then [I try to teach] basic communication skills that may not be perfectly culturally congruent but at least will convey human kindness, concern and empathy without offending. All that you can expect is that [nurses will develop] cultural competence for those patients whom they typically care for.” She insists that “it is not that complicated” to acquire cultural competence.
Norfolk State University’s Brown believes cultural competence must become part of disaster planning for every community, because in any disaster response there will always be outsiders arriving to help. Outsiders, that is, who may or may not speak the language of the community’s ethnic populations and who may or may not be familiar with local cultures and mores. Outsiders who need to be provided with information about what to expect regarding “the values and beliefs of the people [they] are going to work with,” Brown says.
She is critical of the prevailing approach to teaching cultural competence. “We talk about it in such broad, abstract terms of what we need to know about a person’s cultures, values and beliefs,” she explains. “We teach stereotypes even though we are trying to teach acceptance of differences. The only way we know is to teach those basic generalizations.” Brown points to work being done by the Florida Center for Public Health Preparedness (see sidebar) as “a great possible model. They are really getting things together.”
Beyond Cultural Competence
Local minority nurses from the Gulf Coast have other lessons from Katrina to share, including general advice about the more practical aspects of responding to natural disasters. Yevonne Means, LPN2, a medical-surgical nurse at Biloxi Regional Medical Center in Mississippi, recommends that nurses “bring your own food, your own water, your own blanket, whatever you need to camp out. [And] be prepared to stay for a while.”
Trilby Barnes stresses the importance of being mentally prepared for the long haul and having deep reserves of empathy for people whose lives have been devastated by a catastrophe.
“I would never want to remove the idea that there is a definite importance to cultural competence,” she says. “But I also believe there was something within me as a nurse, as a woman, as a mother, that allowed me to care for those patients. I couldn’t speak Spanish, but I still felt like I [conveyed the message] that ‘I am going to figure out what it is you need or die trying.’ I feel any nurse who [has] that compassion [can develop] the cultural competence.”
Take a Free Online Course in Culturally Competent Disaster Response
In 2004, the Florida Center for Public Health Preparedness at the University of South Florida (USF) in Tampa began offering a short online course called “Assuring Cultural Competence in Disaster Response.” The 1.5-hour course was developed by Jennifer Baggerly, PhD, LMHC, RPT-S, a professor at USF who responded to Hurricane Katrina as well as the 2004 tsunami in south Asia.
According to the center’s Web site, the course is designed to prepare public health professionals to offer culturally competent disaster interventions to survivors, witnesses and responders to bioterrorism and other major public health threats and community disasters. The course helps build competencies in such areas as:
• Identifying the role of cultural factors in determining and delivering disaster intervention services.
• Identifying cultural barriers to offering disaster intervention services.
• Approaches, principles and strategies for developing cultural competency in assisting disaster survivors from diverse populations.
• Using appropriate methods for interacting sensitively, effectively and professionally with persons from diverse cultural, socioeconomic, racial and ethnic backgrounds, and persons of all ages and lifestyle preferences, when assisting disaster survivors, their family members, witnesses and disaster responders.
Baggerly says the purpose of the course is threefold. “The first reason is to prevent harm to the individual you are attempting to help. There are numerous examples of well-intentioned public health workers actually hurting [patients]. If you are not careful you can end up promoting harm. The second reason is for [health professionals] to be more effective and achieve faster results in recovery. Third, it protects the public health worker from harm. Sometimes [you can make] an unintentional faux pas that may anger some [patients].”
Anyone who signs up can take the online course for free, although you have to pay in order to receive continuing education credits. According to Baggerly, the course was envisioned as a convenient and immediate training option. “Especially in disaster response where [it is] very fast-paced, [health workers] are trying to respond quickly, so there is some anxiety that builds up.”
Nadine Mescia, MHS, associate director of the Florida Center for Public Health Preparedness, stresses the course’s importance by citing research that indicates “those who are at greatest risk for adverse outcomes following any disaster are. . .non-English-speaking [and] economically disadvantaged [persons].” The course, she says, helps bridge the cultural gap to those very groups.
For more information about the “Assuring Cultural Competence in Disaster Response” online course, visit www.fcphp.usf.edu/courses/search/search.asp.
