In recent years, the relationship between oral health and overall wellness has teetered on the edge of public awareness. Now, the U.S. Department of Health and Human Services is launching an initiative aimed at making it a top priority. Eight HHS agencies, including the Office of Minority Health, the Administration for Children and Families, and the Surgeon General, are collaborating to support and expand oral health education and research. In particular, they hope to make oral health care services more widely available to underserved communities. Racial and ethnic minorities continue to be disproportionately affected by oral disease, and a significant facet of the initiative is working toward eliminating these disparities.
In April, Assistant Secretary for Health Dr. Howard Koh addressed the crowd at the National Oral Health Conference in St. Louis, Missouri, introducing them to the effort and its overall theme: Oral Health is Integral to Overall Health. Dr. Koh called the deficiencies in oral hygiene a “silent epidemic,” noting that 53 million people in the United States currently have untreated decay in their permanent teeth. Working with Dr. Koh in leading the initiative is Dr. Mary Wakefield, the Administrator of the Health Resources and Services Administration, in conjunction with the U.S. Public Health Service Oral Health Coordinating Committee.
Initiative goals and activities include creating campaigns that promote oral health and disease prevention and supporting oral health care professionals. Among individual agencies, the Indian Health Service will strengthen its Early Childhood Caries initiative, including monitoring childhood dental health through community health services and programs like Head Start. The Office of Minority Health plans to offer cultural competency training modules for dental health professionals, which will be available online. (The National Center for Research Resources will also provide Web-based tools for researchers.) And the Centers for Disease Control and Prevention plans to keep track of the overall state of oral health in the United States over the next few years, including the pervasiveness of oral diseases and patterns in dental health behavior. The Centers for Medicare and Medicaid Services, the Office of Women’s Health, and the Health Resources and Services Administration round out the team of collaborators, and each has their own contribution to the initiative.
The foundation of the effort is education, and program coordinators believe that by educating the masses regarding the importance of good oral hygiene and establishing healthy habits at a young age, they can stem the prevalence of tooth decay and oral diseases.
In March of this year, model and actress Mercedes Yvette, runnerup in the second season of the reality TV show “America’s Next Top Model,” spoke at a news conference about something that’s extremely important to her. The topic wasn’t fashion. Yvette’s concern is lupus, a debilitating disease that she said is often “overshadowed and overlooked.”
The disorder, formally known as systemic lupus erythematosus (SLE), affects an estimated 1.5 million Americans. Unfortunately, lupus disproportionately affects young women of color, including Yvette.
As a national spokesperson for the Lupus Foundation of America (LFA), Yvette was at the news conference, along with Frances Ashe-Goins, RN, MPH, deputy director of the U.S. Department of Health and Human Services (HHS) Office on Women’s Health (OWH), to help kick off the first-ever Ad Council media campaign on lupus awareness, co-sponsored by LFA and OWH. The theme of the campaign—which includes print, TV, radio and online ads depicting minority women of various races and ethnicities—is “Could I Have Lupus?” There is also a bilingual (English/ Spanish) campaign Web site, www.couldihavelupus.gov, which offers lupus information and resources, an online discussion forum and personal stories from women who are living with the disease.
In addition to increasing the general public’s awareness, Ashe-Goins says she hopes to encourage minority nurses to learn more about lupus and how they can help close the gap of unequal lupus outcomes. “Minority women who are diagnosed with lupus tend to [have a more severe form of the disease than Caucasian women],” she notes.
“It’s important to get the message out to minority communities about what lupus is,” agrees Amy Ma, DNP, APRN, FNP-BC, assistant professor and clinical coordinator in the nurse practitioner program at Long Island University School of Nursing in New York. “We are the front line. We [interact with the patients] more than other health care professionals, so it’s up to us to reach out to our communities with information.”
Lupus is an acute and chronic autoimmune disease in which the immune system is unbalanced, forming antibodies that attack normal tissue and organs. It can affect virtually every organ system in the body, causing inflammation and tissue damage. Its complications can result in severe health consequences, including heart attacks, stroke, seizures and organ failure. According to OWH, nine out of ten people who have the disease are female, and it is three times more common in African American women than in white women. Lupus is also more common in women of Hispanic, Asian and Native American descent.
The landmark LUMINA (Lupus in Minorities: Nature versus Nurture) study, conducted for the National Institutes of Health by researchers from the University of Alabama at Birmingham, the University of Texas- Houston Health Sciences Center and the University of Texas Medical Branch at Galveston, revealed that African American and Hispanic lupus patients tend to develop the disorder earlier in life than their Caucasian counterparts, often during their prime childbearing years. They also tend to have more aggressive disease activity, more serious complications and are more likely to die from the disease. Hispanic women with lupus have a poorer prognosis overall and are more likely to experience heart disease and kidney damage, while African American patients are more likely to have complications such as seizures, hemorrhages and stroke.
Although there is no cure for lupus, the disease is manageable, especially when it is detected and treated early. But all too often, Ashe-Goins warns, minority patients are not diagnosed until their disease is in the later stages, when it may have already damaged a major organ in their body. “Sometimes it impacts their kidneys, or their heart,” she says. “Or it may impact their neurological system and they have memory loss.”
A Difficult Diagnosis
There are a number of possible reasons why minority women with lupus don’t get diagnosed sooner. One explanation is that early detection of lupus is difficult in general. Different patients exhibit different symptoms and may suffer from them for several years before finally being diagnosed. Some of the more common symptoms include painful joints, extreme fatigue, hair loss, photosensitivity and a so-called “butterfly rash”—a red skin rash that often appears on the nose or cheeks (and sometimes the upper arms, shoulders, chest, hands or face). These indicators can come and go over time, and they can range from mild to severe. Patients usually have to go through several months of testing before learning they have lupus.
Once diagnosed, patients can be treated by family physicians, rheumatologists or clinical immunologists. A range of treatment options is available, including nonsteroidal anti-inflammatory drugs (NSAIDs) to decrease joint and chest pain, corticosteroids to reduce inflammation, and immunosuppressives to restrain an overactive immune system.
According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), lupus patients can also be treated with antimalarials, such as hydroxychloroquine sulfate (brand name Plaquenil) and chloroquine (Aralen). Although these drugs, as the name implies, were originally used to treat malaria, they have been found to be helpful in controlling symptoms such as fatigue, joint pain, skin rashes and inflammation of the lungs in lupus patients. Antimalarials can also help decrease “flares,” which are instances when lupus comes out of remission, either with new symptoms or recurring old ones.
Socioeconomic factors can also create barriers to treatment for women of color. Lupus medications are expensive. People who lack health insurance— a group that includes minorities at disproportionately high rates—may find it difficult to afford the drugs, so they may forego treatment.
Even if patients can pay for the medicines, they still have to see their health care provider for multiple treatments, even if they are in remission. If the disease has caused organ damage, patients must undergo additional procedures, such as kidney dialysis. As a result, the overall cost of lupus treatment is exceedingly high.
Raising Awareness
Even though lupus affects minority women at higher rates, health professionals say that at-risk women in communities of color still don’t know enough about the disease.
“In our focus groups [at OWH], we found that women knew about breast cancer, heart disease and HIV/AIDS, but they gave us blank stares when we asked them about lupus,” says Ashe- Goins. She adds that many of the participants knew someone who had lupus but they were clueless about the disease itself.
To fill this knowledge gap, Ashe- Goins developed a lupus awareness program that was initially offered to HHS employees. “We discussed what lupus is, how it’s treated and what lupus patients can do to have a better life. It was highly successful,” she says. “Next, we decided to do a national campaign to warn [at-risk women] about the prevalence of lupus. We wanted to help our young minority women of childbearing age learn to detect the early warning signs.” The result is the national “Could I Have Lupus?” campaign.
During the HHS campaign, Ashe- Goins and her staff found that their target audience, young women, thought the common lupus symptoms of fatigue or a rash were too minor to be taken seriously. The OWH team realized they had to talk about lupus in a way that would grab the young ladies’ attention.
“We told them they could lose their hair,” says Ashe-Goins.
One of the most frequently asked questions she encountered, Ashe- Goins adds, was whether someone can “catch” lupus. “The answer is ‘no,’ it is not an infectious disease,” she says. “However, there is some evidence that in general, autoimmune disorders can be hereditary.” For lupus in particular, says the LFA, a combination of genetics (heredity), environment and hormones is involved.
The Nurse’s Influence
While national media campaigns and informative Web sites can play a big part in increasing lupus awareness, nurses can make an even bigger impact. As a nurse, you have the ability to reach undiagnosed lupus patients that the “Could I Have Lupus?” campaign may not. When patients enter the health care system, the first person they spend time with is usually a nurse. And that means you can play a pivotal role in helping patients receive an earlier, accurate lupus diagnosis.
Lupus Resources for Nurses and Patients Created especially for young women of color, the “Could I Have Lupus?” national lupus awareness campaign, www.couldihavelupus.gov, offers information in English and Spanish about lupus symptoms, diagnosis, treatment, support resources and more. The campaign’s Web site also includes an online discussion forum where lupus patients can ask questions, get advice and share information with peers. For health professionals and organizations, the site provides information about getting involved in the campaign, including free downloadable campaign materials. The Lupus Foundation of America, www.lupus.org, through its network of local chapters throughout the country, provides a wealth of information, programs, services and support groups for lupus patients and their families. Resources available for nurses include continuing education programs, publications, clinical guidelines, conferences and a comprehensive online publication, Lupus: A Patient Care Guide for Nurses and Other Health Professionals, created by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The guide can also be purchased in print or CD-ROM formats from NIAMS at http://catalog.niams.nih.gov/index.cfm. The Association of Rheumatology Health Professionals, www.rheumatology.org/arhp/index.asp, a division of the American College of Rheumatology, offers members and non-members a variety of education programs and resources relating to lupus and other rheumatological diseases, including nurse practitioner rheumatology training programs, advanced practice skills training, audioconferences/Webcasts, and patient education materials in English and Spanish. The S.L.E. Lupus Foundation, www.lupusny.org, a New York-based organization that also has offices in Los Angeles, provides multicultural outreach programs for minority women with lupus, including the Lupus Cooperative of New York City (LCNY), a collaborative network of health and support services for lupus patients and their families in local underserved and inner-city communities. The foundation’s Web site also offers extensive information and resources for patients, in English and Spanish, about living with lupus and managing their disease. The Lupus Research Institute, www.lupusresearchinstitute.org, provides health professionals with timely news and information about lupus research findings, clinical trials and new treatment options. The institute also offers grant funding for lupus researchers. The Hospital for Special Surgery in New York City offers several multicultural outreach programs and support services, including:
“If nurses pay attention to [possible warning signs] in patients as they’re coming in, sometimes they can help the doctor order the correct test,” says Ashe-Goins. For example, if a patient’s creatinine level is very high, it’s a good indicator that she has kidney problems. At that point, the nurse can research a little further to see if the trouble is related to lupus. Similarly, if you discover that autoimmune problems run in the patient’s family, you should consider that lupus could be a possibility.
“Not all kidney problems are lupus, but I’m asking nurses to add that to their consideration,” Ashe-Goins says. “Nurses have time to assess family history, current symptoms and past history. They can help point the patient in the right direction.”
In Amy Ma’s clinical practice as a family nurse practitioner, one of her patients is a Hispanic woman in her early 20s who was recently diagnosed with lupus. “The patient had been complaining of joint pain and a rash. We did some basic blood work, but it was inconclusive. Then we sent her to a rheumatologist,” says Ma, who notes that the entire testing process took months before the patient was diagnosed.
“Part of the reason why the diagnosis took so long is because the patient didn’t think her symptoms indicated something that could be so severe [as lupus],” she adds. As a nurse, Ma felt compelled to encourage her patient to follow through with the testing.
Once the lupus diagnosis was finally confirmed, the next step was to educate the patient about living with her disease and about the possible outcome. “We didn’t want to scare her, but we wanted to prepare her for something that could be a lifelong problem,” says Ma. “Fortunately, there is a lot of hope for her. She didn’t get a very bad flare and there’s not a lot of severe organ damage.”
Even though this patient’s disease was caught early, it is still important for the young woman to keep coming back for follow-up visits. However, says Ma, “the patient is a busy mother of young children and I’m afraid that she won’t take the time to take care of herself and attend follow-up treatments. It’s kind of hard for her to grasp the whole concept that [her lupus] might go away and come back again, but that’s what we as nurses have to explain.”
“Because there is no cure for lupus, patients must maintain visits with their physician, even if the disease is in remission,” says Eulalee A. Greene, RN, a clinical nurse in rheumatology at the Hospital for Special Surgery in New York City, which offers culturally and linguistically competent lupus outreach programs for the minority communities it serves (see sidebar). Greene acknowledges that many lupus patients may not want to come back for follow-up care because they have a sense of dread after they’re diagnosed. “It’s understandable that patients have fear about the disease. They may fear loss of friends, social life or even [loss of] employment.”
In these instances, it’s important for nurses to assist patients in finding support systems to help them cope. “Patients can find help through support groups in their community and through church organizations. Most of all, they should be counseled to reach out to their family or significant other,” Greene says.
Are You At Risk?
Because lupus disproportionately affects women of color, minority nurses who are female also need to be aware of their own risk for the disease. Loretta Jackson, LPN, an African American nurse in Mobile, Alabama who was recently diagnosed with lupus, says it took months of testing for doctors to figure out why she had extreme fatigue and her kidneys weren’t working optimally.
“My doctors had asked me before if I had lupus and I always told them no,” she recalls. It wasn’t until her physician insisted that she have a biopsy on her kidneys that she received her diagnosis. “I didn’t think I had lupus at first, because I’ve always heard about the butterfly rash [as a telltale symptom] and I didn’t have any rash. But I still had lupus.”
Even though Jackson has been a nurse for 17 years, her family wasn’t prepared for the findings. “When the doctor came into the room, my family asked him, ‘What is lupus?’ And he explained. Then, when he left the room, they turned to me and asked, ‘What is lupus?’ again,” she says.
Since then, Jackson and her family have joined a local support group, the Lupus Support Network, which has provided her with ample information about living with the disease. She says the group has helped her find resources for obtaining more affordable medicine and has educated her relatives about how to care for someone with lupus.
Today, her family members are not only knowledgeable about lupus, they’re her biggest advocates. “Before, my 14-year-old daughter didn’t understand why she couldn’t even hug me because it hurt me so bad,” says Jackson. “Now, she’ll say things like, ‘Mama, have you had your medicine for pain today?’ She’ll remind me to take it easy if I’m pushing myself too hard.”
Although Jackson is currently on disability leave from her job as a nurse, she says she’s managing her disease and still has a good quality of life. “I have lupus,” she declares, “but it doesn’t have me.”
Imagine what it would be like to navigate the health care system if you only read English at a fifth-grade level–or not at all. The paperwork you’d be asked to fill out, such as insurance forms, would look like sheets of indecipherable code. You might get lost in hospitals and outpatient facilities because you couldn’t make sense of the signage. You wouldn’t understand the self-care instructions the doctor or nurse just gave you, because of the complex language used. You might overdose on a medicine–or not take enough–because you couldn’t read the label on the prescription bottle.
How long do you think it would take before you were dubbed “noncompliant”? Patients who have trouble understanding health information are naturally going to have difficulty complying with prescribed treatments and preventive measures. Experts have coined the term “health literacy,” defining it as the ability to comprehend and act on health information–both written and verbal. Not surprisingly, patients with low literacy tend to have poorer health outcomes than other patients. They’re also more likely to use the emergency room and have lengthier hospital stays, costing the health care system about $73 billion a year.
The most recent National Adult Literacy Survey (NALS), conducted in 1992, found that 40-44 million Americans only read at the fifth-grade level or lower. Yet most health care materials are written at a 10th-grade level or even higher. In fact, you practically need a post-graduate degree to understand living wills, informed consent forms and other complex materials.
Racial and ethnic minority patients are disproportionately affected by literacy problems, which may partially explain the many disparities in health outcomes between Americans of color and the majority population. About 50% of Hispanics, 40% of African Americans and 33% of Asians surveyed scored in the lowest level on the NALS. In comparison, only 14% to 16% of whites scored as low. This gap can be explained in part by the large number of people of color who are immigrants learning English as a second language. Minority individuals raised in low-income and poverty-level communities are also more likely to have attended lower-quality schools and tend to go to school for fewer years than whites.
Recognizing the seriousness of the problem, nurses across the country are starting to address health literacy in minority populations. Some are conducting research to determine what works best with low-literacy patients. Others are reexamining the ways they assess, educate and communicate with patients. “Minority nurses need to wake up and do something about health literacy,” urges C. Alicia Georges, RN, EdD, FAAN, president of the National Black Nurses Foundation. “Minorities are so often adversely affected by [low] health literacy. We can’t just wait for the next guy to do it.”
Start with an Assessment
A community health nurse, Georges became concerned about health literacy when she noticed that patients weren’t changing their behaviors after receiving information on hypertension and other topics.
The ABCs of Creating Easy-to-Read Patient Materials Health literacy and cross-cultural communications consultant Janet Ohene-Frempong, MS, president of J O Frempong & Associates in Philadelphia, has helped many organizations develop easy-to-read patient education materials. Ohene-Frempong is also a principal and founding member of The Clear Language Group. She offers the following advice for developing simple, easy-to-understand materials:
Find the plain-language equivalent for complex words. Often, this means using short words that contain few syllables. For instance, use “wound” instead of “lesion.”
Keep sentences short, even if you break a few grammar rules. For example, you can begin a sentence with an “and” if it helps.
Keep the tone friendly but respectful. Don’t “talk down” to the patient.
Try to personalize the information, using the second person. For instance, say “your foot” instead of “the foot.”
Don’t be afraid to use medical or technical terms that patients need to know to manage their health–just define them in simple terms. For instance, a patient with osteoporosis needs to know the word “osteoporosis.”
Use ample white space.
Use headers and indentation to let readers know when a new topic is being addressed.
Try to keep paragraphs to three or four sentences at most, using a little white space in between paragraphs.
Use bulleted lists when possible.
Try to avoid writing in ALL CAPS or all italics, which are difficult to read.
Avoid colored paper or ink. Black print on white paper is often the easiest to read.
Use 12-point type, which is large enough to read.
Use pictures or illustrations that are simple and related to the text.
“We give patients information and they say ‘yes, doctor,’ ‘yes, nurse.’ But nothing happens,” says Georges, who is also assistant professor and chairperson in the Department of Nursing at Lehman College, Bronx, N.Y. “We tend to shove things in patients’ hands and say, ‘Here’s the instructions.’ But we don’t go to the next step in our assessment to find out if they understand what we’re telling them.”
To learn more about the extent of the health literacy gap, Georges teamed up with Linda Burnes Bolton, RN, DrPH, FAAN, vice president and chief nursing officer at Cedars-Sinai Medical Center in Los Angeles. The two African-American nurses used a tool called the Test of Functional Health Literacy in Adults (TOFHLA) to assess health literacy levels in 145 adults in New York and Los Angeles. Confirming their suspicions, they found that African Americans scored an average of 67 out of 100 on the TOFHLA, meaning they had marginal health literacy skills.
Tests like TOFHLA have primarily been used in academic research. But it’s time for nurses to use shorter versions of these tools in clinical settings, believes Feleta Wilson, RN, PhD, associate professor at Wayne State University College of Nursing in Detroit.
“Every initial nursing assessment should include some form of reading or comprehension test,” says Wilson, an African-American nurse educator who has been researching health literacy issues for 13 years. “When a patient first comes into your health care facility, you should assess their reading ability. This will give you baseline information that you wouldn’t ordinarily have. If you learn a patient is reading below the seventh-grade level, then you know to keep information simple and plain so they can understand.”
Georges dismisses complaints that nurses don’t have time to assess literacy. “People tell us, ‘We’re understaffed, we don’t have time for this.’ But you must make time, because if the patient doesn’t understand what you tell him, he’s going to be back with the same problem and you’ll have to spend more time with him.”
In other words, spending a few minutes up front to evaluate health literacy could save health care organizations a lot of work–and money–later on. One assessment tool, the Rapid Estimate of Adult Literacy in Medicine (REALM), only takes five to 10 minutes for patients to complete, says Wilson. Some nurses, such as Marion Broome, RN, PhD, FAAN, prefer the TOFHLA–even though it takes longer–because it measures a patient’s ability to comprehend health information, not just read it. “The TOFHLA asks patients to apply what they read,” she explains. “For instance, the test asks patients to read a prescription label and answer questions about it.” A professor and associate dean for research at the University of Alabama School of Nursing in Birmingham, Broome is currently researching the effectiveness of giving easy-to-read materials on fever management to low-literacy parents of young children.
Because the TOFHLA, which is available in English and Spanish versions, is relatively lengthy, Wilson suggests using only a portion of the test in the clinical setting. There’s also a shorter, 10- to 15-minute version available, called the S-TOFHLA. All these tools can be found in the nursing literature and via the Internet.
Nurses can’t simply rely on their instincts to identify patients with low literacy, Wilson cautions. “There’s no ‘look’ about a person who can’t read,” she says. “I’ve seen people in cutoff jeans and ragged shirts who read at the college level and I’ve seen men in Brooks Brothers suits who had poor reading skills.”
However, nurses can watch out for red flags that may signal a literacy problem. For instance, people who consistently leave their glasses at home, ask to bring forms home to fill out or ask you to explain written materials may be low-literacy patients.
Adopt a “Plain Language” Policy
“Sometimes health care providers use a different language than the rest of the world. We use a lot of high-level words that people don’t really understand, like saying ‘myocardial infarction’ instead of ‘heart attack,’” says Judi Leonard, RN, MSN, a pediatric nurse practitioner at Friends of Children Health Center in La Habra, California.
Leonard and her co-worker Maria Rivera-Klein, RN, MSN, who is president of the Orange County Chapter of the National Association of Hispanic Nurses, are intimately familiar with the problem of health literacy. The Friends of Children Health Center provides free medical and dental care to needy children whose parents are often immigrants. The two nurses offer one key piece of advice: Use plain, simple language when communicating with patients, both verbally and in writing.
“The medical culture is a whole different culture as opposed to the ‘normal people’ culture,” notes Rivera-Klein, a clinical nurse specialist in parent-child nursing. “So you have to break medical information down into something that is understandable.”
Choose simple language and shorter words, says health literacy consultant Janet Ohene-Frempong, MS, president of J O Frempong & Associates in Philadelphia and principal and founding member of The Clear Language Group. “Instead of saying ‘consult,’ say ‘ask,’” advises Ohene-Frempong, who is African American. “Instead of saying ‘determine,’ say ‘find out.’ You also need to slow down and take pauses. Talking fast is like reading in small print. It’s a blur and people can’t grasp it.”
Providing translation services for non-English-speaking patients is a vital part of culturally competent care, but you must still convert complicated medical lingo into plain, simple terms before presenting it in Spanish or another language, health literacy experts agree. “If a Spanish-speaking person can’t read Spanish very well, you won’t help them by giving them a Spanish handout,” Georges points out.
But just keeping things simple isn’t enough. Always check for understanding. Many nurses use the “teach-back” method, which involves asking patients to restate medical instructions in their own words.
“Don’t just ask ‘Do you understand?’ because people will say ‘yes.’ Don’t just ask ‘Do you have any questions?’ because people will say ‘no,’” Ohene-Frempong emphasizes. “You need to take responsibility for the teaching and say, ‘Tell me how you’re going to manage your blood pressure, tell me how you’re going to change your diet, tell me what you’re going to do about your medications.’”
Presented the wrong way, the teach-back method can come off like a pop quiz designed to “catch” the patient making an error. “You don’t want to put folks on the spot and embarrass them further,” says Wilson. “I always say to patients, ‘I just want to make sure that when you get home you’ll understand my instructions. We as health care providers need to do more to help you understand what to do.’”
Use Easy-to-Read Patient Materials
Providing patient education materials, such as booklets and brochures, that are designed specifically to be easily readable can also help patients who have low literacy skills. Leonard recently gave patients an easy-to-read self-care book, What to Do When Your Child Gets Sick, published by her health center’s owner, the Institute for Healthcare Advancement. Six months after she distributed the book, 44% of families said they had used it once or twice to care for a sick child, 38% had used it three to five times and 11% had used it six or more times.
Linda Burnes Bolton, RN, DrPH, FAAN
“One mother was able to help her child who had been choking on a coin after she read the book,” Leonard reports.
Why is the book so helpful? Leonard cites several reasons: It’s written at a third- to fifth-grade reading level and it includes lots of illustrations and bulleted lists. Plus, each medical problem–from fevers to broken bones–is presented in the same step-by-step format: What is it? What do I see? What can I do at home? When do I call the doctor or nurse? What else should I do?
Nurses can use a readability assessment formula to test the reading level of written materials. One of the most common ones is Flesch-Kincaid, which is available on MS Word for Windows as part of the spelling and grammar function (look under “Options”). You just type in passages from a document and it will give you the reading level. The SMOG (Simple Measure of Gobbledygook) Index is another commonly used readability formula. “Sometimes it’s difficult to look at a document and know whether it’s easy-to-read material,” says Wilson. “If you really want to be accurate, it’s best to use a readability formula.”
What grade level should you aim for? It depends on your patient population. But experts say fifth- to sixth-grade will be understandable to the majority of patients. Anything over eighth-grade level is considered difficult-to-read.
It’s not just patient education materials that need to pass the easy-reading test. In her former position as coordinator of the Diversity Program at Dana Farber Cancer Institute in Boston, Grace Clark, RN, helped identify various written materials for patients and staff that needed to be simplified. The list included patient consent forms and hospital signage.
“Health professionals have a tendency to put too much information on a sheet of paper,” says Clark, an African-American nurse who now works as an internal medicine/pediatrics staff RN at a health care center in Dorchester, Massachusetts. “Just give the facts in a simple way. For example, even I have trouble understanding the information on Medicare that’s available to patients. But we tend to hand this to people and say, ‘We’ve done the job’ when we haven’t.”
Ohene-Frempong recommends that nurses field-test patient materials to find out if they are understandable. Even an informal field test that involves running a brochure or patient discharge instructions by five patients can provide useful feedback, she says. Just be sure to pick five people that represent a cross-section of your patient population—for example, an older patient, a patient with reading problems and a young parent.
Go Beyond the Written Word
However, easy-to-read written materials alone may not be enough to solve the health literacy problem. Nurses should also consider alternatives to the written word, such as videos, audiotapes, group classes, one-on-one consultation and support groups.
Feleta Wilson, RN, PhD
“We need to avoid the dependence on print materials as the only tool for communicating with patients,” asserts Melinda S. Forthofer, PhD, an assistant professor in the Department of Community and Family Health at the University of South Florida. “We need to use written materials in combination with other strategies.”
Forthofer is principal investigator for the Florida Health Literacy Study (FHLS), which is sponsored by Pfizer Inc. and the Agency for Health Care Administration. FHLS is using a combination approach that includes group classes to improve the health outcomes of Florida Medicaid patients with type 2 diabetes or hypertension. Study participants attend a number of classes where they learn the ins and outs of managing their disease. Health educators also provide one-on-one counseling and printed materials designed to promote disease self-management.
Results from the FHLS will not be in until 2004, but anecdotal patient stories sound encouraging. One patient weighed 252 pounds at the start of the program and had a blood pressure reading of 160/90. Three months after participating in the FHLS, she had lost 20 pounds and dropped her blood pressure to 114/70.
The key to closing the health literacy gap for minority patients comes down to making patients feel empowered, Georges believes. “We need to let patients know that they have a right to ask questions about their health. They need to know it’s OK to say to a doctor or nurse, ‘I’m not going anywhere until you tell me what this means.’”
Filling Your Health Literacy Toolbox
Many organizations–from federal agencies to pharmaceutical companies–are actively addressing the problem of low health literacy. Here is a sampling of Internet sites offering health literacy information and resources for nurses.
Center for Health Care Strategies, Inc. (CHCS) CHCS sponsors many different initiatives, including health literacy resources, to improve care for low-income people with chronic illnesses and disabilities. The “Resource Center” section of its Web site contains a series of fact sheets that provide an excellent overview of various health literacy issues.
National Adult Literacy Survey (NALS) An executive summary of the most recent (1992) NALS is available on the National Center for Education Statistics Web site. A new 2003 survey is currently in progress and includes a health literacy component. Results are expected in May 2005.
The Institute of Medicine (IOM) The IOM, part of the National Academy of Sciences, is in the midst of a major study to define the health literacy problem. The Institute has convened a series of public meetings on the issue.
National Cancer Institute (NCI) You’ll find the helpful guide Clear & Simple: Developing Effective Print Materials for Low-Literate Readers free of charge on the NCI’s Web site.
Harvard School of Public Health Harvard’s Health Literacy Studies (HLS) program provides many useful resources, including classes on health literacy, an annotated bibliography on health literacy and a video called In Plain Language.
The Institute for Healthcare Advancement (IHA) The IHA offers an annual health literacy conference, a health literacy curriculum, a series of self-care books for low-lit patients, and more.
Health & Literacy Special Collection The National Institute for Literacy (NIFL), offers health literacy resources through its Literacy Information aNd Communication System (LINCS) project, a national online database of literacy information. LINCS’ Health & Literacy Special Collection offers an extensive list of resources relating to various aspects of health literacy.
Pfizer Inc. Health Literacy Initiative The “Caring for Community” section of the drug company’s Web site provides information on the Pfizer Foundation Health Literacy Community Grants Program, which funds community-based interventions that improve patient outcomes and reduce health disparities. As a member of the Partnership for Clear Health Communication (see below), Pfizer also offers resources for improving communication with low-lit patients at www.pfizerhealthliteracy.com.
The Partnership for Clear Health Communication This coalition of national organizations working together to develop health literacy solutions has a wealth of resources for health care professionals, including “Ask Me 3,” a patient education tool designed to facilitate communication between patients and care providers.
When the Leadie Eddie van visits neighborhoods in south Newark, N.J., to screen children for lead poisoning, the tiny patients are not appreciative. Dozens of babies and toddlers join in a noisy chorus of crying as they get their fingers pricked for blood tests.
But the nurses who do the screening know their work is worth the tears. The blood tests are the first step in preventing what could be dire consequences for many of these children later in their lives. Lead poisoning can cause learning disabilities, developmental delays and brain damage. Through screening programs such as Leadie Eddie, nurses can catch lead exposure early and reduce the risk that the children will suffer permanent harm to their health.
“This is health promotion at its finest,” says Felesia Bowen, RN, MS, PNPC, an African-American nurse who teaches at Rutgers University College of Nursing and is involved with the Leadie Eddie program. “It’s an opportunity to make a big difference in a kid’s life.”
This early detection program is just one example of the important role nurses can play in addressing environmental health issues in minority and disadvantaged communities. Environmental health has been a component of nursing ever since Florence Nightingale advocated for clean water and proper drainage at British military hospitals. But in today’s increasingly “green” society, environmental health is truly moving to the forefront of nursing, and opportunities abound for nurses of color who want to work with at-risk communities to prevent or reduce exposures to lead, pollution, toxic waste and other environmental hazards.
The Rutgers College of Nursing’s nurse-managed clinics helped implement the lead-screening program in Newark. “Leadie Eddie” is a van staffed by nurse practitioners who travel to poor neighborhoods to provide lead screening tests, preventive education and follow-up. The program was launched in conjunction with Episcopal Community Development, Inc. and the Maternal and Child Health Consortium, Inc., two local community-based advocacy groups.
About a third of the children under age six in Newark have elevated lead blood levels, Bowen says. Unfortunately, this isn’t just a local phenomenon. Lead poisoning is a serious problem in many of the nation’s poorest communities. In some inner city neighborhoods, more than half of the children have elevated lead blood levels, compared to the national average of less than 10%. Children can get poisoned through contact with contaminated soil or if they ingest dust or chips of lead-based paint, which is common in older, poorly maintained housing.
Fighting Environmental Racism
Lead poisoning is not the only environmental health problem that threatens minority communities and disadvantaged neighborhoods—they also have a disproportionate share of industrial operations that produce toxins, says Dorothy Powell, RN, EdD, FAAN, associate professor and associate dean of Howard University’s College of Pharmacy, Nursing and Allied Health Sciences, Division of Nursing, in Washington, D.C.
Online Resources for Environmental Health Heroes Does environmental injustice make you so angry that you want to help do something about it? Here are some resources to help you learn more about environmental issues in nursing: EnviRN, The University of Maryland School of Nursing’s environmental health Web site (http://envirn.umaryland.edu), features information about environmental hazards, interventions, basic environmental nursing concepts and more. To access the Institute of Medicine’s list of recommended environmental competencies all nurses should have, click on “Basic Concepts” on the home page, then click on “General Environmental Health Competencies for Nurses.” The Agency for Toxic Substances and Disease Registry (www.atsdr.cdc.gov) offers many resources, including an environmental health nursing listserv that provides a national forum for nurses to ask questions and share information. To subscribe to the listserv, send a message to the email address [email protected]. Leave the subject line blank, and in the text or message area, type: “Subscribe environmental-health-nursing” followed by your first and last name. (Example: Subscribe environmental-health-nursing Jane Doe) Health Care Without Harm (www.noharm.org) provides information about its campaign to promote environmental responsibility in the health care industry without compromising safety or quality of patient care. The American Association of Occupational Health Nurses (www.aaohn.org) provides career and training information for nurses interested in specializing in workplace-related environmental health.
Corporate polluting is not colorblind, notes Powell, who is African American. “In the South, three out of four hazardous waste facilities are in low-income communities,” she points out. Not surprisingly, residents of these communities have higher-than-average rates of cancer and respiratory problems. Exposure to toxic waste can also lower IQ levels and lead to developmental delays and behavior problems in children.
Powell believes nurses of color can play a powerful role in fighting this environmental injustice by serving as advocates and educators for minority communities that have been unfairly singled out as targets for pollution and other environmental risks. “Nurses who live and work in the community are in an ideal position to talk to people about the risks and inform them about what their rights are,” she explains. “Often what you find is that these communities not only don’t know their rights but are not even aware that they are being exposed [to environmental hazards.]”
Community education is critical. For instance, many people in disadvantaged areas continue to fish in polluted streams even when warning advisories are posted, Powell says. Poor families are reluctant to give up a free source of food, and often they don’t understand the advisories or realize that these warnings apply to them. Another common misconception is that the toxins can be removed simply by putting wine or vinegar on the fish or cooking it thoroughly.
In some communities, nurses are taking their advocacy role even further by working at the grassroots level to actually fight against corporate polluting in minority neighborhoods. For example, the California Nurses Association is a member of Health Care Without Harm, a national campaign to eliminate pollution by the health care industry.
Among the campaign’s targets are medical waste incinerators, which release dioxin, a poison linked to cancer. Dioxin is released when plastics, such as IV tubing and IV bags, containing polyvinyl chloride (PVC) are burned. The California nurses are working with local environmental groups to raise public awareness about two medical waste incinerators located near low-income neighborhoods in Oakland. Kevin Riley, RN, BSN, a community organizer for the nurses association, says the coalition wants the company that operates the incinerators to switch to more environmentally safe methods, such as microwaving or a process called autoclaving, which uses steam to sterilize waste. As a result of this campaign, he adds, increased public awareness has prompted local air quality officials to pay closer attention to the incinerators.
Besides working through professional associations and environmental groups, nurses can also help advocate for minority communities’ environmental rights by serving in government or public service capacities. Lillian Mood, RN, MPH, FAAN, had worked as a public health nurse for more than 30 years when the South Carolina Department of Health and Environmental Control appointed her its first community liaison nine years ago.
Mood, who recently retired from her position, served as a link between environmental scientists and community residents, helping to inform the latter about environmental threats and their rights to protection. In one instance, a private company applied to open a landfill next to a minority neighborhood. Mood’s job was to arrange public meetings and to listen and respond to the concerns of the residents, who were strongly opposed to the project. “Eventually, they raised enough valid questions that the landfill application was turned down,” she says proudly. “Many times the solutions lie in the communities themselves, once they have become armed with knowledge about the system and how to get involved.”
Reach Out and Trust Someone
While this may seem like a job better suited to professional environmental activists, health experts agree that nurses are a natural fit for the role of educating communities about their environmental risks and rights.
“Nurses are in opportune places to address environmental health issues,” says Teresa Nastoff, RN, BSN, a health education specialist with the Agency for Toxic Substances and Disease Registry (ATSDR), a sister agency of the Centers for Disease Control. “Nurses are in schools, workplaces, home health care and other positions where they are clearly visible in their communities.”
And, she adds, with nearly 2.7 million RNs currently practicing all over the country, nurses have the numbers and the potential to make a huge impact.
Nurses also inspire trust. Community residents are more likely to feel comfortable talking to nurses about their environmental concerns than to biologists and environmental engineers.
“Being a nurse was an invaluable advantage,” Mood says of her community advocacy work. “[Because of my background,] I could anticipate the questions people would have and I had a good understanding of the health implications. Nurses are taught how to listen and how to interview people. And the community is our home.”
Nurses of color who have strong ties to their local minority communities can play a particularly vital role in these outreach efforts. “With any community you work with, you need to develop trust,” says Donna Darity, RNC, MSN, an African-American nurse who teaches community health courses at Florida A&M School of Nursing in Tallahassee. “People are very suspicious of groups of individuals when no one in the groups looks like them. Diversity is very, very important.”
Even something as simple as knowing the food preferences of a culture can help foster communication. Educating the community about good nutrition is important to reducing risks of lead poisoning, because a child who has a diet low in iron and calcium absorbs more lead than children with diets rich in those nutrients. “As an African American, I can tell someone to eat collard greens [to get more iron],” says Bowen of the Leadie Eddie program.
Maria Alvarez Amaya, RNC, PhD, WHNP-C, a Hispanic nurse researcher who has been studying lead exposure among residents on both sides of the Texas-Mexico border, agrees that minority nurses can make a huge difference in ensuring that environmental health interventions are both culturally and linguistically competent.
“It is certainly helpful to be bicultural and bilingual, and not just here on the border,” she says. “You have to understand the cultural background, so you can understand what motivates people to change their behaviors.”
For instance, Amaya, an associate professor at the University of Texas-El Paso College of Nursing, was able to determine that some of the environmental health public education materials that were being distributed to people on the border were not culturally appropriate. The straight translation from English to Spanish missed the mark, and certain important cultural values, such as respect for elders, were not incorporated into the material.
To come up with a more effective tool for delivering the message, Amaya worked with local community groups to produce a 14-minute public education video about lead poisoning. Soap operas are popular in Mexico, so she packaged the information in a soap opera-like drama. To lend cultural credibility, an older actress plays the character of the elder who delivers the public health information. Amaya also produced a photo novel featuring dialogue and still pictures from the video.
Amaya will continue her research and environmental outreach work over the next five years, thanks to a $1.7 million grant from the National Institute for Environmental Sciences. Through the grant project, she will work with other health care professionals and community groups to identify children in El Paso and Juarez who have been exposed to lead and develop a plan to remedy the situation and inform the public.
Educating Environmental Advocates
As environmental health issues continue to become a high priority on the nursing profession’s agenda, a growing number of universities and government agencies are working together to incorporate environmental health education into nursing curricula.
In 1995, the Institute of Medicine, part of the National Academy of Sciences, developed a list of general environmental health competencies for nurses. According to the institute, all nurses should be able to understand environmental concepts, complete environmental health histories for patients and make assessments and referrals. They should also know how to inform patients and communities about environmental risks, understand the policy framework for addressing environmental health and know the major environmental laws and regulations
The National Environmental Education and Training Foundation is working with several nursing schools and professional associations to incorporate information about pesticide exposure—a particularly serious health risk for migrant farm workers–into nursing curricula. This partnership is developing guidelines for content and looking at how pesticide exposure should be incorporated into patients’ health histories. Program Coordinator Jennifer Bretsch says the foundation is working on one environmental issue at a time and will expand to include others as the program matures.
The Nationwide Environmental Health Nursing Initiative is still another effort aimed at beefing up environmental health education for nurses. The initiative, launched by the Agency for Toxic Substances and Disease Registry, is working with nursing schools and other groups to develop tools, curricula, training and distance learning programs.
Meanwhile, the Howard University Division of Nursing, one of the nation’s most prominent historically black nursing schools, has co-developed an environmental health curriculum focused on the Mississippi Delta Project, a coalition that is identifying and addressing environmental concerns in disadvantaged communities in a seven-state, 219-county area along the Mississippi River in the Southern U.S. Corporate farming, petroleum processing and a growing number of other related industries are concentrated there. Environmental health issues have become a major concern because Delta residents have been exposed to pesticides and other toxic materials. Cancer rates are higher in the Mississippi Delta region than in the rest of the South, Powell says. Yet many health professionals in the region lack environmental health training.
The curriculum, which the university developed in partnership with the Minority Health Professions Foundation and the ATSDR, includes six modular units that nursing schools in the region can incorporate into their education programs, either in parts or as a whole. The topics include environmental health and the Delta; the impact of culture, race and economics on environmental health; common toxins in the Delta and their implications for health; human and community responses to toxic substances; environmental justice; and strategies for working with communities at risk.
Getting More Involved
All nurses should have some environmental health knowledge, experts say. But what other skills and qualities are necessary in order to work effectively with communities on solving environmental health problems?
“Environmental health nurses must have good listening and communication skills and an understanding of how the human body responds to stress–physically, mentally and emotionally,” Mood believes. This is because nurses need to stay calm and relaxed in situations where community residents may feel fearful, angry and suspicious of health officials, she explains. “You need to have enough self-awareness and personal maturity to feel comfortable with yourself so that you will not be intimidated or react defensively.”
Darity offers the following suggestions for nurses interested in getting more involved with environmental health issues:
Get to know the key players in your local community and your state.
Get involved early in the process of emerging environmental health issues.
Join and network with professional nursing organizations to learn more about environmental health.
Volunteer for a committee at your workplace that deals with environmental health. For instance, many hospitals have adopted the goals of Health Care Without Harm, which is not only focusing on curbing pollution from medical waste incinerators but also working on issues such as eliminating the use of mercury in health care settings. Nurses can play an active role in these efforts at their clinics and hospitals.
Last issue, Minority Nurse addressed infant mortality in minority communities, discussing some of the disparities, research, and solutions surrounding the issue. This piece was submitted as a supplement to “A Quiet Crisis: Racial Disparities and Infant Mortality”
Aim for a healthy weight. Get enough folic acid in your diet. Find effective ways to manage stress. Talk to your doctor about your family history. All very important information to maintain good preconception health, but as nurses know all too well, people don’t always follow good advice. But how about when the message is coming from someone you can relate to and trust—like a peer?
The U.S. Health and Human Services Office of Minority Health’s Preconception Peer Educator (PPE) program taps into the power young people have to positively influence each other’s behavior, by enlisting and training college students to become health ambassadors. PPEs—many of them nursing, public health, and social work students—organize events at college campuses, K–12 schools, and in the wider community to educate teens and fellow 20-somethings about infant mortality and to deliver the simple message that now is the time to take care of your health…for life.
Born out of OMH’s A Healthy Baby Begins With You campaign, launched in 2007 with the aim of raising awareness about infant mortality in minority populations, who suffer some of the highest rates, the PPE program highlights preconception health as the less-emphasized factor to influence birth outcome and maternal and child health. Science shows that in communities of color, health disparities begin early in life, so PPEs serve as messengers—drawing attention to the critical link between healthy behaviors in youth and improved maternal and overall health in adulthood.
The information is important for other reasons too. While many adolescents and young adults may be a long way from thinking about starting a family, about half of pregnancies are unplanned, which makes preconception health all the more pertinent. Poor health in the early years can also lead to chronic disease later in life, and learning about the long-term payoff of preconception health is not only a way to catch problems early but to curb health disparities in communities as a whole.
The pilot program started in 2008 with Morgan State University, Spellman College, Fisk University, Meharry Medical College, and University of Pennsylvania School of Nursing. The general objective was to tackle the high rates of infant mortality in the African American community by addressing the root causes much earlier in life.
Today, around 90 schools and almost 1,000 students have participated in preconception health trainings. PPEs who have completed the program say their efforts are making a difference in young lives, and the program has grown in popularity mostly through word of mouth.
“We’ve always been taught in the black community that when you get married and decide to have kids—that’s when you should start thinking about your body,” says 20-year-old PPE Atalie Ashley-Gordon, a University of South Florida student in public health. “But I learned that we were very wrong.
“Peers make a big difference in driving this message home,” she adds, because “I’m just old enough to be influential but just young enough to be credible. That’s what makes peer education so important.”
