"If individuals, families, and communities don't have access, then they don't have the opportunity for a better life," asserts University of Alabama at Birmingham School of Nursing Dean Doreen C. Harper, PhD, RN, FAAN. "So part of nursing's mission is to help everybody—no matter where they are or what their background might be—understand how to navigate a very complex health care system. It's part of our role as nurses to empower people to ask the right questions so they can make the best possible decisions about their health care and their lives."
The first step in meeting this challenge is recognizing that there's no such thing as "one size fits all." Every population has unique characteristics that impact access. In Alabama's rural Black Belt region, only a handful of health care providers struggle to serve thousands of people, many of whom lack health insurance. Urban centers like Birmingham have no shortage of providers, but 70,000 people here have no health insurance. Just as formidable as geographic and economic barriers are social and psychological ones, with the stigma or fear of illnesses preventing patients from seeking help.
In response to these great needs, the UAB School of Nursing has marshaled resources, forged partnerships and interprofessional teams, and fully engaged the three powerful engines that drive UAB Nursing—education, research, and service.
Reaching The Rural South
With 55 rural counties—a huge percentage of the state—and many health disparities, Alabama offers an ideal proving ground for innovation in rural health care. The toughest challenge is training providers who are willing to live in and serve these remote communities, said Cindy Selleck, DSN, ARNP, associate dean for clinical affairs and partnerships.
"The School of Nursing is collaborating with the UAB School of Medicine and other health pro-fessions to enhance interprofessional primary care education and encourage the next generation of providers to commit to working in medically underserved areas," Selleck said. "Together, we have established Alabama's first statewide Area Health Education Center (AHEC), which places students in underserved communities throughout the state. If students get positive clinical experiences with health professionals who enjoy what they're doing, they're more likely to stay and serve those people and those communities."
It's no surprise that the most likely candidates to serve rural communities are people who grew up there. That's where the School of Nursing's distance-accessible education comes in, said Linda Moneyham, PhD, RN, FAAN, senior associate dean for academic affairs.
"Each semester, our students learning at a distance come to campus for intensives, which include a series of competency-based classroom and clinical simulation experiences," Moneyham said. "But their didactic coursework is completed online, and they complete clinical practice requirements near their homes. We have students from all over the state of Alabama and beyond, students who probably wouldn't be here if we didn't have this option."
Graduate programs in nursing—including nurse practitioner, nursing administration, clinical nurse leader, and nurse educator tracks, as well as doctoral programs—are available as distance accessible programs. Also distance-accessible is the RN Mobility program, which enables RNs to complete their bachelor's degrees.
"Over the last 10 years, schools of nursing across the United States have doubled the number of enrolled graduate students in this country," Harper said. "We've done it through distance technology. If we had required all of these students to come to our universities to complete their degrees, we would have actually exacerbated the nursing shortage and hindered access because we would have pulled registered nurses away from their jobs. Distance-accessible education has given us a creative solution to maintaining stability while growing a highly educated workforce."
And, delivering quality care to rural communities involves more than training advanced-practice nurses to serve them. It also involves cutting-edge research.
A leader in rural health care within the School of Nursing is Associate Dean for Research Karen Meneses, PhD, RN, FAAN. Co-leader of the Cancer Control and Population Sciences Program at the UAB Comprehensive Cancer Center, Meneses has been an oncology nurse specialist and scientist for more than 20 years, experiencing the whole spectrum of cancer care. Her research focuses on support for women with breast cancer as they transition from active treatment to post-treatment survivorship. Most recently, she has been working with rural breast cancer survivors.
"We have several research teams going," Meneses explained. "They're all very project-specific, but the overarching focus is breast cancer. We have a team here in Birmingham and team members in Florida who are working on the Rural Breast Cancer Survivor Intervention Project. We have another team looking at cost-effectiveness research around the breast cancer survivors study. And then we have two projects being conducted here in the state of Alabama, Reach Out to Breast Cancer Survivors in North Central Alabama and the Black Belt Project."
These interprofessional teams comprise senior scientists, nurses, clinical research staff, statisticians, health services researchers, and a health economist—experts from a wide range of disciplines. Their ultimate goal is a better quality of life for breast cancer survivors, especially those with limited access to health care and education.
"The more prepared survivors are, the better their lives are going to be," Meneses said. "Our role is strictly nursing support and education. We don't interfere with their provider, though in some cases we help them connect with a provider. We're here to give them the tools they need to seek and find quality care."
How best to go about that? The answer, she said, depends on each survivor community. North Central Alabama is predominately Caucasian, with a growing Latina community, while the Black Belt has a large African-American community. There's little stigma attached to breast cancer in the North Central counties, so breast cancer survivors are open to support groups and counseling, Meneses said, but the Black Belt is a different story.
"Women here don't even tell friends and neighbors they've been treated for breast cancer, and some delay treatment because they don't want anyone to know they've been diagnosed," Meneses explained. "Part of that comes from the fear that they'll be a burden to their families, and part of it is the stigma of a cancer diagnosis and the fatalistic view that they're going to die. The need for education and counseling is tremendous. And the level of patient education we're talking about can't happen during a 15-minute follow-up with a provider."
In her previous position at the University of Central Florida College of Nursing, Meneses received a research grant from the National Institutes of Health to develop an intervention for rural breast cancer survivors in Florida. The best delivery system for counseling these women turned out to be the telephone—no travel required, and everybody can get to one. After coming to UAB, Meneses received a local Komen for the Cure service project grant to extend cancer survivorship education outreach into three North Central Alabama counties. She has added bilingual researchers to her Alabama and Florida teams to begin reaching out to Latina breast cancer survivors.
In the Black Belt, she teamed with Claudia Hardy, MPA, UAB Comprehensive Cancer Center program director for the Deep South Network for Cancer Control, under the leadership of Ed Partridge, MD, and Mona Fouad, MD, MPH, who built an incredible infrastructure for cancer education and prevention in the Black Belt counties.
"We tapped into an existing program of support, based on a community health adviser model," Meneses explained. "Had we not worked closely with local health advisers to engage the community, they would never have trusted us and let us in. The Deep South Network had made great strides in improving screening and early detection for breast and cervical cancer. The missing component was what happens after cancer treatment, which is our team's area of expertise. We were delighted to work with this population."
Two of the biggest mistakes researchers have made in the past, Meneses said, are assuming that what worked for one group will necessarily work for another, and abandoning the community once the research project is complete.
"We believe in a community-based, participatory research model, where you engage the community, tailor the work that you do to the needs of the population, and then continue those relationships so that you can sustain a program over the long term. Five years from now, I would love to see, within each of these communities, a presence about cancer survivorship. I'd like to see the networking and engagement continue. I'd like to build up a champion or two within the survivors in those communities, empowering them to serve as a navigator to other women who've had breast cancer and to support family members who have questions about cancer. It would be fantastic for us to see that every woman treated for breast cancer has all the resources she needs to take the next step in the survivorship process. Treatment lasts for a year at most. These women are survivors for the rest of their lives."
One of the great benefits of a UAB nursing education is that students get to join faculty members on research teams. Dawn Aycock, MSN, APRN-BC, CCRC, and Kisha Coleman, MSN, CPHM, RN, are both doctoral students working with Anne Alexandrov, PhD, RN, CCRN, FAAN, who oversees the Doctor of Nursing Practice (DNP) program at UAB. Aycock is pursuing her PhD from Atlanta, while Coleman is completing her DNP in Birmingham. Alexandrov's volunteer work in the Black Belt led Aycock to a research project there, with assistance from Coleman. Pairing Aycock's research expertise with Coleman's clinical training is one of the many ways the School of Nursing teaches students how to collaborate and translate research into practice.
On the first Saturday of every month, UAB volunteers led by Karen Albright, DO, in the School of Public Health, lend their support to a traveling clinic created by a local Black Belt physician and her husband, a minister.
"I think it's very exciting to be able to bring our doctoral students in and allow them to get involved in this work with an interprofessional team," Alexandrov said. "Dawn is interested in what perception these people have of their risk for stroke, versus their actual risk, based on their risk factors and lifestyle choices. This is one of the first research studies ever to come out of this region, focusing on a population that is so significantly underserved. Kisha, who works for an insurance company, generally deals with patients who have resources, who have health insurance, so she has not seen firsthand some of the access issues we're dealing with. She's assisting Dawn as part of her DNP coursework so that she can be much more effective in her job and become a better health care advocate."
Overcoming Social Stigmas
HIV/AIDS is one of the most complex epidemics ever addressed by the health care community. Besides combating the physical effects of the disease and trying to halt its spread, health professionals also must address patients' mental health issues and psychiatric issues, many of which are related to the the social stigma associated with infection.
A scientist in the UAB Center for AIDS Research and senior scientist in the UAB Minority Health and Health Disparities Research Center, Linda Moneyham, PhD, RN, FAAN, senior associate dean for academic affairs, is a pioneer in HIV research. Her extensive work includes developing a telephone intervention for counseling rural HIV-infected women, who often feel so stigmatized that they will not attend support groups, no matter how badly they need help in coping with depression. That work makes Moneyham an ideal collaborator for epidemiologist Mirjam-Colette Kempf, PhD, MPH, a faculty member at the School of Nursing and associate scientist at UAB's Center for AIDS Research and Minority Health and Health Disparities Research Center. Kempf has focused her research on understanding—and addressing—barriers to health care among HIV-infected women living in the South. Telemedicine will play an important role in her current research.
Though women only account for about a third of the total HIV-infected population in the United States, Kempf said, their numbers have been steadily increasing since the nineties—disproportionately so among African-American women in the South. Because depression has been identified as a key factor that prevents HIV patients from adhering to HIV care, Kempf has received a grant from the National Institutes of Health to adapt an existing intervention.
"For HIV patients, adherence is critical," Kempf explained. "Skipping even two doses of a medication can lead to resistance—and ultimately death—if treatment options are exhausted due to resistance."
Harvard researchers developed an intervention using cognitive behavioral therapy to address this issue.
"Our goal is to adapt this intervention to HIV-infected African-American women living in the Deep South," Kempf said, "We hope that, by making it culturally acceptable and delivering it through telemedicine, we will be able to develop a successful intervention for this underserved population."
Misconceptions about HIV/AIDS have created great hardships for patients.
"HIV/AIDS is no longer a fatal disease," she said. "It's a chronic disease. Someone who is receiving and adhearing to treatment can live as long as someone who's not infected. And yet, many people still have the belief that mere contact—shaking hands or kissing or touching—will cause you to become infected. That is not true."
"These people deal with stress, with depression, with the fear of stigma," said Jim Raper, DSN, JD, CRNP, FAANP, FAAN, who recruited three School of Nursing faculty members to help address mental and psychiatric issues at the 1917 Clinic on UAB's campus.
Teena McGuinness, PhD, CRNP, FAAN, Susanne Fogger, DNP, CRNP, PMHNP-BC, and Kathleen Troup, MSN, CRNP, PMHNP-BC, all collaborate with Raper to offer psychiatric and mental health care at this world-class, multidisciplinary facility. In continuous operation since 1988, the 1917 Clinic offers primary care to some 2,000 adult HIV patients, about 40 percent of whom have no ability to pay. Patients here have access to specialists in everything from neurology to dermatology to dentistry.
"I chose to practice at 1917 because I knew the director is also a nurse practitioner, so I would have a colleague there who would be open to using the facility to train psych-mental health nurse practitioners and increase access to mental health services," said McGuinness. "Also, I knew people living with HIV often have depression and anxiety rates of 40 to 50 percent, and my skill set would be valued. If you treat psychiatric disorders in people living with HIV, they are more likely to adhere to their HIV medication, live longer, and have a better quality of life."
McGuinness, who directs the Honors in Nursing program at the UAB School of Nursing and serves as coordinator of the psychiatric-mental health nurse practitioner track, said that three of her honors students have conducted projects at 1917. McGuinness is currently precepting psych-mental health nurse practitioner students in the clinic.
Raper, who earned his doctorate at the School of Nursing, has a secondary appointment on the nursing faculty, in addition to his primary appointment as associate professor in the School of Medicine. He said nurses have a special contribution to make in HIV treatment.
"One of the major indicators of whether a patient will remain engaged in care is the relationship that patient has with his or her care provider," he said. "If they believe that you care about them, if they believe that you hear them, that you're trying to help them, if you take time to touch them and make them feel like a person, they have a much higher rate of return to the clinic for appointments. You have to build a relationship, and you have to build trust. I think nurses have always known that."
As Raper and other nursing faculty offer compassionate care and treatment, other HIV researchers in the School of Nursing are focused on prevention. Gwen Childs, PhD, RN, and Comfort Enah, PhD, RN, are associate scientists at the UAB Center for AIDS Research and the Minority Health and Health Disparities Research Center.
Childs is targeting 12- to 14-year-old African-American girls.
"Here in Alabama, when you compare African- American girls age 15-19 with other ethnicities, the difference in the infection rate for STDs is shocking," said Childs, who is trying to reach these girls before they become sexually active.
"Many of the girls in my study don't realize they can get tested without their parents' permission, so they're afraid to seek care," she said. "I talked with junior and senior girls who actually thought there was a cure for HIV. They think abstinence is a joke, so we're exploring ways to persuade them to at least delay sex until they're older. In the meantime, we need to find effective, realistic ways to educate them about how this disease is transmitted and help them make better decisions about sex."
Childs said she expected resistance from parents in the Birmingham community, but the reverse happened.
"Parents want us to talk to their daughters because the girls often won't talk to them," she said. "The 60 girls we've interviewed so far say they really want us to teach their parents how to talk to and listen to them."
For Enah, who works with male and female African- American adolescents in the rural South, privacy concerns are a major barrier to HIV prevention and treatment.
"Everybody knows everybody, so even though free condoms are available through their local health department, they don't want to be seen coming out of a clinic," Enah explained. "Also, there are fewer options for partners, so if one person is infected, he or she has the potential to spread the virus to more people. And then there's the lack of entertainment for rural kids. They hang out with each other, and like they say, 'things happen.' And if they do get infected, they don't want anyone to know."
Enah is developing a portable, educational video game that could be played privately on a computer or cell phone.
"Right now, I have pilot funds, with the primary goal being to develop a workable prototype and then work toward individualizing it," she said. "This will be a long-term project and will require additional funding. But without a tailored intervention to teach this group about HIV transmission and prevention, rates will just keep rising."
Partnering with the community
Given the complexity of modern health care and the many barriers to access, partnerships are essential to help providers connect with the people who need them most and to allow students from a range of disciplines to learn from each other.
"For years, we educated our own students within each school, and when they graduated, we sent them into the workforce, where they were expected to work collaboratively with professionals from other fields," explained Cindy Selleck, DSN, ARNP associate dean for clinical affairs and partnerships. "But they didn't know how to work together because we hadn't taught them. Health care is becoming much more team-based, and you have to learn how to work as a team."
She cited a new DentaQuest grant, which brings together students from the schools of Dentistry, Nursing, Medicine, Optometry and Health Professions to learn about oral health in the classroom and clinical arena. Teams of these UAB students are doing physical and oral assessments on children. In the process, they're teaching each other assessment techniques from their particular fields. In another interprofessional program, the Geriatric Education Center at UAB sends students from the schools of Medicine, Optometry, Health Professions, Dentistry, Social Work, and Nursing to a local retirement center, where they interview community residents, individually, from their own professional standpoints. Then the students come together to design team-based care plans.
"Collaboration is a core value of this university and our school," said Dean Harper. "Our disciplines, our science, our educational programs, and our practice are delivered as a team to produce better clinical outcomes for the people we serve. Nursing is at the forefront of care delivery, and nurses are at the epicenter of the health care team. Working together and collaborating with our colleagues from other disciplines, we find better solutions than any of us could find alone."
Last year, the UAB School of Nursing partnered with M-POWER Ministries to establish a nurse-managed daytime PATH (Providing Access to Health Care) clinic. M-POWER runs three evening clinics, which focus on acute care and do not take appointments. The daytime clinic, also located at M-POWER in Birmingham's Avondale community, does allow appointments with School of Nursing faculty and provides chronic care management. None of its patients have health insurance. Some are homeless.
"We're serving a group of very appreciative, needy people who fall through the cracks and need access to essential services," Selleck said. "The PATH clinic offers a rich educational opportunity for students in nursing and other health care disciplines."
The clinic wasn't the school's only partnership with M-POWER. After tornados ravaged a number of Alabama communities in April 2011, nursing students began collecting relief supplies for tornado victims and looking for other ways to help. When M-POWER sent out a call for nurse practitioners to volunteer in devastated Pratt City, nursing faculty were there within 24 hours.
Whatever the barriers to good health might be— distance, income, education, social stigma, or anything else that stands in the way—the UAB School of Nursing is committed to overcoming them.
"When you think about access today, we have face-to-face access, telecommunication, electronic access, and so much more," said Harper. "And I think we have to explore all of those channels and put them to use for the community. Across our three missions of education, research, and service, the one thing you can never eliminate is this: No matter how advanced health care becomes or how many high-tech tools we have at our disposal, nursing touches people. Nurses will always be wherever people are, wherever patients are in need of care. Nurses will always be there, partnering to improve access and mobilize resources for patients to lead happier, healthier lives."