Written by Lavinia Edmunds
Gary Hooper knew something was wrong with his health, but he steered clear of the hospital and doctors. He kept up his diet of fast food and tried to ignore the exhaustion that leveled him each day by noon. “I thought I’d wait it out and it’d get better,” recalls Hooper.
He’d heard about a study at Johns Hopkins School of Nursing that offered free medication and care for high blood pressure (HBP), so Hooper showed up one day at his neighborhood clinic. When the nurse checked his blood pressure, dangerously high at 190/138, she immediately dispatched Hooper to the hospital emergency room, where he was ordered to lie down. Doctors circled around him asking questions in grave voices. He could have a heart attack or stroke and die at any moment in this condition, he realized. How did he feel, they wanted to know.
Today, five years later, Hooper has reduced his blood pressure and changed his life through the intensive, personalized system of monitoring and care offered through the School of Nursing study. Men in the study were randomized to receive either individualized treatment from a team of health care workers that included free medications, HBP education and counseling, and home visits, or to receive referral to usual care available in the community and minimal high blood pressure education. After three years in the study, men who received the special team care and those who received care available in the community both had improved blood pressure control rates. The men who received the team intervention had a greater control rate of 44 percent while the group that received the usual care had a 31 percent control rate. After three years, 91 percent of men in the team care group were on high blood pressure medications, up sharply from the 35 percent before the study. There was less cigarette smoking and more employment. (A full report of the 36-month study results is published in the November issue of the American Journal of Hypertension.)
The study is one of a growing number of initiatives developed by School of Nursing researchers that target groups who are underserved in the American health system. Minorities “experience a lower quality of health services, and are less likely to receive even routine medical procedures than are white Americans,” according to Unequal Treatment, a comprehensive study on disparities in health care issued in March 2002 by the Institute of Medicine (IOM). Martha N. Hill, PhD, RN, dean of Johns Hopkins School of Nursing, was co-chair of the committee that authored the attention-grabbing report. According to the IOM study, relative to whites, African Americans and other minority groups are less likely to receive appropriate cardiac medication or to undergo coronary artery bypass surgery. They are also less likely to receive care for chronic illness.
Once minorities are in care, the causes of discrimination are not always easy to pinpoint. For example, why do young black males have less success lowering blood pressure than white men or black women? The disparities cited by Unequal Treatment go beyond explanations such as high health care costs and lack of medical insurance and delve into the thorny subjects of prejudices and stereotyping on the part of health care providers, and the need for more effective clinical communication and different cultural approaches in clinical settings.
The influential report has sparked soul-searching in the medical establishment about how best to bridge the gaps. “We looked at the hospital as a setting at which care is given. We looked at the providers: Are there enough? Do they have competencies? We looked at the system or organization, the providers and the patients, the level of nursing and the level of the patient,” says Hill.
The report concludes that today’s health care establishment must work to “incorporate the patients’ perspective in defining their own medical goals and actively participating in management and treatment considerations and to include patients in the judgment of their own functioning and well-being.” Or, as Hill likes to say: “You find people where they are and show them where they can go.”
That is exactly what clinicians and researchers at Johns Hopkins School of Nursing are doing — fanning out in the community to care for patients in the neighborhoods in which they live. In addition to young black males in the inner city, there are other underserved groups that do not receive adequate care in the American health system: the homeless, abused women, pregnant drug abusers, African American senior citizens, and Korean Americans, to name just a few. Kathleen Becker, MS, RN, CANP, assistant professor, has helped to set up clinics at shelters that serve mentally ill homeless women, who, Becker finds, are among the most vulnerable and least noticed of those in desperate need of health care. Miyong Kim, PhD, RN, associate professor, has devised all kinds of programs to offer Korean Americans language translating services, along with screenings and care for a wide range of diseases that especially affect that population. At Apostolic Towers, a housing complex for low-income senior citizens, a team of nurses and students, led by clinical instructor Carmalyn Dorsey, MSN, RN, offers elderly African-Americans health and lifestyle classes that are giving the residents zest for a more active life, with once threatening health issues now under control. And from the newly formed Center on Health Disparities, based at the nursing school, nurse researchers are seeking to gain broader understanding of the disparities that blight the American health care system.
Fighting the Silent Killer
Five years after discovering his precarious health, Gary Hooper is celebrating the end of the study that he credits with saving his life. The School of Nursing and the Men’s Center, a multipurpose resource center that serves the inner city neighborhood, are sponsoring the party at the Men’s Center, a warren of meeting rooms in a converted warehouse. There is a festive atmosphere on this summer evening, with clusters of balloons and young men playing bongo drums, as study participants assemble with loved ones and members of the School of Nursing staff involved with the project.
It is characteristic of this project’s unusual level of attention to its subjects that Lisa Benz Scott, PhD, a Kellogg Community Health Scholar at Hopkins’ Bloomberg School of Public Health in charge of “dissemination,” organized the celebration to inform participants about the results. “Sometimes we had to fight about it with you,” Benz Scott tells the group, as she hands out certificates to celebrate the men’s improvement and participation. “But you got so you were looking for us to help you.” The men assembled here bucked the odds, not only by turning around their health, but by puncturing the myth that young urban black men do not care about their health or about participating in research studies, she adds.
Gary Hooper, dressed in an athletic outfit and bright white tennis shoes, lumbers up to the microphone before the crowd to testify. “Today I’m at 130 over 80 and holding steady,” he announces proudly to a round of applause. He could not have qualified for his current job as a truck driver if he had not lowered his blood pressure. But it was consideration for his family — his children and grandchildren — that prompted him to make permanent lifestyle changes, he says.
Extraordinary care combined with intensive tracking helped to keep the men in the study, according to Dwyan Monroe, a community health worker who, with former project director Mary Roary, MHS, and other team members, tracked down men for appointments. Each participant was required to list three contacts and a working address. If the men didn’t show up, Monroe or a team member went to their house, to the house of the contact, or even to jail, if that’s where a man was residing.
Monroe found that many study subjects were so involved in day-to-day survival that seeking medical care was at the bottom of their priority list. After only 36 months, at least 33 of the original 309 died — half as the result of the drug and alcohol abuse that ravages their inner city neighborhood.
Traditionally, few researchers who work in underserved communities return to their subjects with results or suggestions for care afterward. In this case, School of Nursing researchers located clinics where the men could continue their blood pressure treatment. When many of the men were unable to afford the necessary medications after the study was completed, Monroe and others helped to identify sources of free medications for clinic providers.
Buoyed by his improved health, Gary Hooper is footing the bill for his medication, though the costs have put a drain on his finances. He says that some elderly people he knows just die in their homes without needed medicines because they can’t afford them.
The men assembled at the Men’s Center found that the study offered education about high blood pressure in a non-threatening, friendly environment. A number of them also said it was the first time they had been contacted by any health care organization and offered preventive services. “Those researchers cradled me like a baby, and a lot of us needed that,” notes study participant Boyd Olden. “I’m a black American male. I don’t like to think anything’s wrong with me. It helped me become a new man.” Olden’s changes were not limited to lowering his blood pressure: He also quit drinking and lost weight, gaining good health. The resultant rise in his confidence prompted him to enroll in nursing school. As he notes, one positive step led to another.
“A New View of Old Age”
Just a few blocks away, at a housing complex for low-income senior citizens, the reality of a comprehensive health education center for older adults has dawned gradually. Instructor Carm Dorsey saw a need for health care at the housing complex called Apostolic Towers, as well as a need to educate nursing students about gerontology.
Nursing students have long been active in the senior citizen community as clinical volunteers, doing everything from helping with flu immunizations to conducting health assessments. But Dorsey could see discouragement in her students who were assigned to low-income elders. These patients often faced multiple diseases. It was not unusual for one person to suffer from high blood pressure, diabetes, and osteoarthritis, plus cataracts and depression. With limited education and resources, the patients found their medications were impossible to track.
“We could see the need for an education center that would empower low-income elderly African Americans with skills needed to manage their chronic diseases. It would also give students a new view of old age,” explains Dorsey. So about three years ago Dorsey and others from the school joined forces with several nonprofits and leaders in the community to develop the Isaiah Wellness Center at Apostolic Towers.
In the past year alone, nurses at the Wellness Center have had 964 patient visits, conducted reviews of 102 patients’ medications and 434 health education sessions, and made 129 home visits.
On a recent morning, activities are in full swing as Dorsey gives a visitor a tour. Residents call out “Hi, Carm!” as Dorsey pokes her head in an exercise class, and then returns to a room where other residents are lining up for blood pressure tests. Nearby, Kay Cresci, PhD, RN, CCRN, assistant professor, is using several computers to teach a group of seniors how to use the Internet to find specific health information and resources.
“All sorts of things are happening this morning,” Dorsey says, clearly pleased.
Access to health care is a tricky concept, according to Dorsey. She’s found that many people avoid health care visits out of fear. She tells the story of the resident who could scarcely walk due to advanced osteoarthritis. The woman adamantly refused to visit a doctor because, she revealed in an interview, she didn’t want to go “under the knife” for surgery. Finally, as hobbling degenerated into immobility, with the encouragement of her children and of Dorsey, the patient agreed to go to a rheumatologist for a consultation. The woman gradually lost her fear, as she came into more contact with the medical establishment and learned more about her disease. She finally opted for bilateral knee replacements, recommended by her doctor as the best option. Today she experiences pain-free mobility — with new knees.
Dorsey often witnesses how information about a patient’s behavior that is relevant to a patient’s cultural background or age can make a major difference. For example, she says, elderly people often need help communicating with doctors and asking the right questions. Dorsey says it is important for health care providers to prompt elderly patients to share their health histories.
Diabetic Sarah Wallace, for example, eventually revealed that she would always stop for a cupcake and soda after going to the clinic to have her glucose levels tested. Dorsey encouraged her to change that habit, and it improved Wallace’s health significantly. For 82-year-old Gladys Buchanan, the Wellness Center offers the opportunity for a proactive approach to the stage of life that many consider their “twilight years.” Buchanan describes herself as “one of the lazy kind” who could watch TV all day. “But when they have a class, I get up and get ready for it. They make it interesting for you.”
In a recent exercise class at the Towers, Buchanan pumps iron along with six older women in varying stages of mobility. She began using vegetable cans as weights until her children gave her bright blue two-pound weights for her 82nd birthday recently. Up and down, the tiny blue barbells go, slowly and consistently. “Do you feel stronger?” asks Udaya Thomas, a lithe young nursing graduate student who is checking to see that no one overstresses muscles or bones. Buchanan gives the thumbs-up signal. She has found that the exercise class gives her energy and “more ego about doing things.”
Most important for Buchanan’s health has been the diabetes support group she attends. Before joining the class, her illness would often veer out of control. Buchanan says she would feel “terrible, as though water was going through my head.” In weekly information sessions on the illness, her nursing student teacher has helped her develop a personal plan for diet and insulin. She has learned how to eat, what portions to take, and how to prevent crises that would land her in the emergency room.
Health Care with Dignity
Across town at the Greenmount Senior Center, Miyong Kim, PhD, RN, is working to bring Korean Americans in for prevention and follow-up treatment. Baltimore’s Korean-Americans flock to the center, a beautifully renovated schoolhouse, for recreation and health services, knowing that they can be interpreted as necessary, with cultural beliefs and customs understood, thanks largely to Kim’s efforts.
Kim, a first generation immigrant herself, walks through the center with a relaxed manner. Today she helps translate terms for the men who are filling out papers for prostate cancer screenings, which take place in an enormous white mobile van parked outside.
Problems of accessibility here most often boil down to language and cultural barriers, notes Kim, who serves on the board of the senior center and helps to bring a number of health events to the center each year. Illustrating the potential ill effects of the language barrier is Soon Jae Lee, a 68-year-old gentleman who is awaiting his screening. Having lived in the United States since 1980, Lee still does not know enough English to carry on a conversation. Through an interpreter, he explains that he had hepatitis B in 1999. However, his doctor was unable to convey the diagnosis to him, and Lee did not receive the necessary medicine. Lee did not ask questions.
In his native Korea, to question a doctor or even to report side effects from medication is considered impolite. As the hepatitis worsened, the physician a year ago recommended that he transfer to another doctor who could understand Korean — one of a handful in the Baltimore area. The new doctor showed Lee a biopsy of his liver and explained in a way that he could understand the nature of the disease and necessary treatment. Now Lee faces the screening for prostate cancer. The test will be free, but he does not have medical coverage for the necessary treatment if he should test positive. That may not prove to be an obstacle, however: Last year, the center screened some 168 men for prostate cancer; 39 are currently receiving no-cost follow-ups, and three received free surgery through contributions of donated time and funds. “That’s three lives that we saved,” says Kim.
Prostate cancer, diabetes, and high blood pressure are just some of the diseases that affect older Korean Americans. According to Kim, 70 percent of Korean elderly suffer from hypertension. In addition to language barriers, there are cultural factors unique to older Korean Americans that can affect their health. Many of the older generation now in America consume much more animal fat and salty foods than they did in their homeland, for instance. They also face “acculturation stress factors” — deriving from poverty, limited assimilation to the U.S., and lack of exercise, Kim explains.
Kim launched another study this fall, using the model of the young black male blood pressure study, but with a slightly different twist—in addition to providing health education, it is focused on bolstering self-confidence and problem-solving skills in 200 elderly Korean Americans. Participants take a six-week class on the causes and treatment of high blood pressure. Blood pressure will be monitored at home and transmitted daily for Kim and colleagues to read through a telephone transmission device.
Preliminary results of a pilot study show that the program lowered blood pressure and improved self-help skills and overall quality of life. Learning about the disease in a classroom setting was a dignified method of education for this group. With the information, they gained more confidence to go to clinics and seek treatment. But most important to Kim, about half of the participants in that first pilot group of 30 have volunteered to be counselors and interpreters for the new, more comprehensive research project. Peer counselors can act as translators, mediators between the physicians and patients, and perhaps most important, provide psychological support. “Korean Americans are in a very vulnerable situation when they’re sick,” says Kim. “I have found that they not only suffer from illness, but they’re losing self-esteem.”
Though the scope of disparities in today’s health care system can seem daunting, nurses are in a prime position to help reform and sensitize the system to the needs of the underserved.
“Nurses are good at knowing how to structure the health care environment,” notes Dorsey, so that those underserved groups, from young black males to senior citizens, will show up for preventive care, obviating the need farther down the road for a midnight trip to the emergency room in a life-or-death crisis. Creating a welcoming health care setting involves knowing how to present information and letting the patient talk and ask questions.
On a larger scale, Dorsey will meet with others involved in gerontology care to pinpoint pockets of unresponsiveness at clinics throughout the area and then apply pressure to eliminate that unresponsiveness. Access in the form of a community clinic “one-stop shop” helps too, rather than relying on the emergency room as a last resort.
To significantly affect disparities across the board, however, policymakers ought to take the study findings and develop best practices based on the research, says Lee Bone, co-investigator of the Young Black Male Study and associate public health professor. She holds a joint appointment in the School of Nursing and the Bloomberg School of Public Health.
She believes the findings of the Young Black Male Study, for example, are definitive enough to inform policymakers about ways to provide care to urban black males. One clear implication is to “be flexible and adaptable” at the clinical visit, beginning at the front desk, even if a patient has missed an appointment or shown up late. Another is to strive to establish closer relationships between care providers and patients. Young men who receive extra attention will begin to “attend more to their health and get more information,” says Bone.
Meanwhile, Gary Hooper still religiously reports to the Men’s Center’s clinic for a blood pressure check on Thursday nights. On one such evening last summer, he leans back in a chair, head against an African tapestry, as he awaits his weekly appointment.
“Many people are crying out for help, and they don’t know where to go,” says Hooper. “A lot of black men are not willing to say they have a problem. . . But if someone is willing to help you, then you have to be willing to help yourself.”
Lavinia Edmunds is a Baltimore-based freelance writer.
