From 2012 to 2015, Jo-Ann Eastwood, associate professor at UCLA School of Nursing, partnered with several local African American churches to conduct an American Heart Association–funded clinical trial that tested the effectiveness of using smartphone apps to help black women ages 25–45 reduce their risk for heart disease. Most of the study participants had multiple risk factors, such as obesity, hypertension, high cholesterol, high stress levels, and a family history of cardiovascular disease.
First, Eastwood and her team taught four weekly education sessions to increase the young women’s awareness of their risks and provide tips for making risk-lowering lifestyle changes. For many participants, the classes—which covered topics such as knowing your family history, heart-healthy eating, getting more exercise, and techniques for coping with stress—were an eye-opening experience.
After the last class, everyone in the intervention group was given a smartphone uploaded with apps Eastwood had developed in collaboration with UCLA’s Wireless Health Institute. “We used the apps to stay connected with the women,” she says. “They couldn’t call out on the phones, but we could call them and send them text messages.”
The apps were programmed to send a rotating series of daily reminders, such as “How many servings of vegetables did you eat today?” and “Did you try to reduce your stress today?” The women entered their answers into the phone, which streamed the data to the researchers through a server at the university.
In addition, the phones automatically tracked the women’s physical activity throughout the day and took their blood pressure once a week. “We gave them wireless talking blood pressure machines,” Eastwood explains. “The women would push a button on the phone, their blood pressure would be taken, and the phone would tell them what their numbers were. Then they would push a button that would stream it to our server.”
Although Eastwood is still analyzing the study’s results, her initial findings are impressive. After six months, compared with a control group, the women who received the smartphone intervention had lowered their blood pressure and total cholesterol, increased their HDL (“good”) cholesterol, reduced their waist circumference, and decreased their stress. “They were changing their diets, they were becoming more physically active, and they made notable and significant lifestyle changes over time,” Eastwood reports.
Even more encouraging, these changes empowered the women to improve not just their own cardiovascular health but their families’ as well. One woman, for instance, had been serving her husband and children meals that were high in sodium, fat, and cholesterol. As a result, her husband’s blood pressure was 210/120—dangerously out of control. But when she switched to more heart-healthy cooking habits, his hypertension began to drop dramatically. And at the end of the study, says Eastwood, “he came in and thanked us for saving his life, because his blood pressure was now 120/80 for the first time since sixth grade.”
From electronic health records (EHRs) to smartphone apps, today’s health IT tools can help nurses develop innovative strategies for closing the gap of racial and ethnic health disparities.
One of the top priorities of President Obama’s Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009 is to reduce health disparities—such as disproportionately high rates of chronic diseases in racial and ethnic minority populations—through the “meaningful use” of EHR technology. Seven years after the passage of HITECH, how much progress have we made toward achieving that goal?
In the 2013 report Understanding the Impact of Health IT in Underserved Communities and Those with Health Disparities, the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology (ONC) showcases many innovative examples of how health care providers nationwide are using EHRs, as well as other types of health IT, to increase access to care and improve health outcomes in communities of color. From the rural Mississippi Delta to immigrant and low-income communities in large metropolitan areas, “health IT offers promising tools to address chronic diseases by facilitating the continuity of care and long-term follow-up needed for successful management of these conditions,” the report concludes.
That, of course, is where nurses come in. Take a close look at successful model programs that are deploying health IT to help close the gap of unequal health outcomes and you’ll see nurses—including hospital and clinic RNs, nurse practitioners, informatics nurses, case management nurses, nurse researchers, and more—playing leadership roles.
“Nurses are coordinators of care for patients. We’re typically the first person they see when they seek health care,” says Joyce Sensmeier, MS, RN-BC, CPHIMS, FAAN, vice president of informatics at HIMSS. “It’s really a natural extension of the nurse’s role with patients to connect the dots from the information technology side.”
For most nurses, health IT begins with the EHR. This essential platform enables them to instantly access a patient’s complete health record, document patient data in real time, monitor changes in the patient’s condition, and use clinical decision support tools—such as computerized alerts—to respond to those changes. But increasingly, nurses are also waging war against health inequities by arming themselves with an arsenal of other high-tech tools, including the following:
• patient portal websites, which give patients convenient access to their personal health information and enhance communication between clinicians and patients;
• health information exchanges, which allow patient data to be securely shared between different providers—such as hospitals, ERs, and primary care providers—to improve continuity of care;
• wireless and mobile health (mHealth) technologies, such as smartphone apps and text messaging;
• external databases, such as state and national disease registries and immunization registries, that collect clinical information about specialized populations of patients across a large geographic area; and
• population management software (PMS) systems, which help nurses track health trends among specific groups of patients they care for—for example, pediatric patients, or patients with diabetes.
Seeing the Bigger Picture
For nurses who are working to improve minority health outcomes, one of the biggest advantages of using health IT is that these tools make it easier than ever before to capture, compare, and analyze patient data. And that translates into unprecedented opportunities for leveraging that data to better manage the needs of patients with chronic illnesses, identify gaps in care, and develop targeted interventions.
“Clinicians have always been information workers,” says David Hunt, MD, FACS, medical director of patient safety and health IT adoption at the ONC. “It’s just that so often we’re focused on that one patient, that one chart. IT tools give you the ability to step back and look across groups of patients to really get insight into how to make care better.”
In other words, these technologies maximize nurses’ ability to address health disparities from a population health perspective. You can “slice and dice” the data stored in the EHR to classify and group patients in many different ways—for example, by race, ethnicity, age, and gender. Nurses can also zero in on patients who have particular conditions—such as heart failure, asthma, or HIV—to generate condition-specific reports and action plans, says Wanda Govan-Jenkins, DNP, MS, MBA, RN, lead nurse informaticist for the ONC.
“You can look at the EHR and extract these groups of patients to see which patients’ blood pressure was elevated at their last visit, or which patient hasn’t been seen for a while,” she explains.
Patient portals are another vehicle for communicating chronic disease management reminders to whole populations of patients, adds Lisa Oldham, PhD, RN, NE-BC, FABC, vice president of practice operations and chief nursing officer at the Institute for Family Health, which provides care to medically underserved communities at multiple facilities in New York City and state. The institute’s portal, MyChart MyHealth, is available in both English and Spanish (MiRecord MiSalud).
“We can create an electronic letter for the entire organization’s patients who fall into a specific category and send it to them through the portal,” Oldham says. “The patient will get an e-mail that says, ‘Please go into your MyChart,’ and that’s where they’ll see the letter. For instance, we just sent out an e-mail blast to all our geriatric patients reminding them to come in for their annual wellness visit.”
At the Cherokee Indian Hospital (CIH) in North Carolina, a tribal health system that serves more than 14,000 members of the Eastern Band of the Cherokee Indians, care management nurses develop outreach campaigns using the hospital’s PMS, which works in conjunction with the EHR.
“By pulling data out of these platforms, our nurses can target in and pinpoint things like how many people need to get a colorectal cancer screening or a Pap test,” says Sonya Wachacha, MHS, RN, CCM, executive director of nursing at CIH. “Then the nurse generates a reminder letter to that person, such as ‘Mrs. Smith, it looks like you’re due for your mammogram. Can you please come in and get that done?’”
On an even larger scale, says Hunt, “disease registries are wonderful resources, because you can identify characteristics and trends that you don’t have insight into when you’re just looking at a group of patients within your own practice. Having the benefit of looking at large amounts of data from many, many providers gives you tremendous insight in terms of being able to infer more information about your patient population.”
Educate, Engage, Empower
Nurses are also finding that consumer-driven health IT tools, like patient portals and mHealth technology, can offer exciting new ways to help patients who are living with chronic diseases become better educated about their conditions, more engaged with their treatment, and more empowered to self-manage their own health.
Patients can log into their care provider’s portal and access disease management educational materials, which health systems can tailor to meet the needs of limited-English-speaking and low-literacy patients. For example, the Institute for Family Health’s portal has links to patient education resources in more than 40 languages.
At the Institute’s Ellenville Family Health Center in Ellenville, New York, a rural community with one of the highest poverty levels in the state, “the most prevalent disease processes in our patient population are diabetes and cardiovascular problems,” says staff nurse Santiago Diaz, RN. “The portal has information specifically for these patients. We walk them through the basics of where to find the information, and we show them the shortcuts so that they don’t get lost in all the information that’s up there.”
Because nearly everybody today seems to have a smartphone or cellphone, these devices can help nurses connect with hard-to-reach populations, such as young people. Jo-Ann Eastwood, PhD, RN, CCNS, CCRN, associate professor and advanced practice program director at UCLA School of Nursing, recently conducted a research study that used custom-designed smartphone apps to teach young African American women who were at high risk for heart disease how to make heart-healthy lifestyle changes.
“When we look at chronic disease prevention in minority populations,” she says, “we have to look at the population that’s between 25 and 45 years old, or even younger. If we’re going to develop prevention strategies that are relevant to this population that is very technologically astute, that is fast-moving, that is busy, we have to hit them where it’s salient.”
Govan-Jenkins, who is also a professor of informatics in the graduate program at Walden University School of Nursing, recommends teaching patients how to download and use the many free or low-cost mobile apps that are available in the consumer health marketplace. For instance, there are diabetes management apps that let patients monitor their blood glucose levels and upload that data to their patient portal for nurses to track.
“Patients who have smartphones or mobile devices can download continuous self-monitoring apps that let them see things like how many steps they took that day and how many calories they burned,” Govan-Jenkins continues. “The nurse can also send weekly or monthly text messages to condition-specific groups of patients, such as reminding them to take their medication.”
Ultimately, Wachacha believes, being able to interact with their own health data and personally follow their progress toward meeting their health improvement goals can make a big difference in engaging patients to take a more active part in their care.
“With our EHR, we can create graphs that let patients see how their blood sugar or blood pressure readings are going up or down over time,” she says. “When our tribal members who have diabetes, for example, can look at that graph and see that their A1C levels are going down after they start exercising, it’s meaningful for them. It gets them motivated to do more with their care, because they can see that the things they’ve done are having an impact on their results.”
Reaching Across Barriers
According to the ONC report, health care providers must find solutions for overcoming “challenges and barriers to the use of health IT” in medically underserved communities of color. Some of those challenges include limited access to Internet service and cellphone connectivity in underdeveloped rural areas, cultural and linguistic differences, and low rates of technology literacy among these patients.
Telehealth remote monitoring systems (software-based IT tools that let nurses collect data via a device they install in the patient’s home) are an effective strategy for reaching patients in rural communities who don’t have access to computers, says LaVerne Perlie, MSN, RN, senior nurse consultant at the ONC.
At the initial home visit, telehealth nurses show patients how to record their health information, such as blood pressure readings, and enter those numbers into the system. “That data is sent directly to the nurse in the provider’s office so that he or she knows when to come out and visit the patient and make recommendations for ongoing care, such as scheduling an office visit or even a hospital admission,” Perlie explains.
As members of the nation’s most trusted profession, nurses are ideally suited to educate patients who are unfamiliar or uncomfortable with technology about how to use health IT tools and become more computer-literate.
At Institute for Family Health facilities, patients receive information about MyChart MyHealth as soon as they walk in the door. In the examination room, says Oldham, nurses explain how the portal works and the benefits of using it. They answer any questions the patient has. Then they help patients register for the portal right there, guiding them through the process of how to log in, create a correctly formatted password, and navigate the website. For patients who don’t have a computer at home, “we encourage them to use the computers at the public library [or to download the MyChart MyHealth mobile app to their smartphone if they have one],” adds Diaz.
Still, another challenge cited in the Understanding the Impact of Health IT report is that “customization of off-the-shelf health IT products often necessary to ensure that they [meet] the needs of underserved populations.” For example, the Cherokee Indian Hospital serves a patient population that has a high risk for suicide, substance abuse, and tobacco use. Because its EHR and PMS didn’t include functions for monitoring these risks, the hospital had to add them.
Hunt and Perlie emphasize that the best way hospitals can make sure their investment in technology will provide information that’s the right fit for their population health management needs is to get nurses involved in the design of health IT systems right from the start—before the technology is implemented. Many health IT projects fail, Govan-Jenkins cautions, because the implementation team didn’t seek input from frontline nursing staff. “And then they had to rebuild and re-implement the system, because it was just not capturing the data they needed to capture for their specific type of patients.”
That, says Sensmeier, is what reducing health disparities through the meaningful use of health IT is really all about. “It’s not just about adopting the technology. It’s about using it in such a way that we can capture the data that’s been entered and learn from it—learn what makes an impact in different patient populations, what care models and treatments work, what outcomes are being realized, and how we can change our practice.”
Disproportionately high rates of unintentional injuries are a leading cause of death for American Indians and Alaska Natives. From their unique vantage point on the front lines of community health, nurses can make a life-saving difference in helping tribes reduce and prevent these deadly disparities.
When three young children from the same family were killed in a car accident on the Pine Ridge Indian Reservation in South Dakota about five years ago, the leaders of the Oglala Sioux Tribe realized that they needed to do more to reduce the high rates of child passenger fatalities in their community.
The tribe’s Department of Public Safety applied for a Tribal Injury Prevention Cooperative Agreement Program (TIPCAP) grant from the federal Indian Health Service (IHS) Injury Prevention Program. As a result, Pam Pourier, RN, was hired as her tribe’s full-time injury prevention coordinator. “The important thing about using Native nurses in injury prevention activities on their home reservations is that the nurses know, and can identify with, the community people,” she says.
Since then, Pourier has worked tirelessly to promote and increase the use of child-restraint car seats throughout the reservation’s nine districts. In addition to educating families about the importance of securing their kids in safety seats, she has distributed hundreds of free seats to parents who otherwise couldn’t afford them. Her efforts have made such an impact in the Oglala community that she has earned the nickname Super Car Seat Lady.
A Different Kind of Health Disparity
Injury prevention is a critical concern for the 566 federally recognized American Indian and Alaska Native (AI/AN) tribes in the United States. According to IHS, unintentional injury from preventable accidents—such as motor vehicle crashes, drownings, poisonings, fires, and falls—is the third leading cause of death in AI/AN communities (after cancer and heart disease). Even more troubling, accidental injuries are the number one killer of young AI/AN people between infancy and middle age.
Although American Indians and Alaska Natives make up only about 2% of the total U.S. population (as of the 2010 Census), their risk of dying from unintentional injuries is disproportionately high. Statistics from IHS, the Centers for Disease Control and Prevention (CDC), and the Alaska Native Tribal Health Consortium (ANTHC) reveal a litany of disparities:
AI/AN people have the highest motor vehicle-related mortality rates of any racial or ethnic group in the nation.
AI/AN infants younger than one year old are eight times more likely to die in motor vehicle accidents than non-Hispanic whites.
Death rates from poisoning and falls are twice as high for AI/AN people than for their Caucasian counterparts.
Alaska Native children are five times more likely to die of an accidental injury than U.S. children as a whole.
Overall, Alaska Natives die of unintentional injuries twice as often as non-Native Alaskans and almost three times as often as Americans in general.
What accounts for these unequal outcomes? The IHS Injury Prevention Program cites a number of interconnected factors, including: the high proportion of young adults in AI/AN communities; hazards associated with living in rural environments; limited resources for providing safety infrastructure, such as street lighting, on reservations; low seatbelt and car seat use among AI/AN people; the need for stronger enforcement of state and tribal traffic safety laws; and higher-than-average numbers of alcohol-related accidents.
Injury Prevention Nurses Needed
Whether they work at the federal level (e.g., for IHS clinics or the U.S. Public Health Service Commissioned Corps), for state public health departments, or for tribally operated health care systems, nurses can play an exceptional leadership role in planning and implementing community-based education and interventions to reduce and prevent injury disparities in Indian Country.
“Nurses are the first line of community outreach,” says Sharon Ponkilla, LPN, a contract health and public health nurse for the Absentee Shawnee Tribal Health System’s Injury Prevention Program in Norman, Oklahoma. “They go into the homes and they see firsthand how our tribal members are living.”
Even though nurses—and especially culturally and linguistically competent American Indian and Alaska Native nurses—are ideally suited to be injury prevention specialists in AI/AN communities, there are surprisingly few of them working in this field. “There aren’t that many Native injury prevention nurses in these programs, especially at the tribal level,” Pourier says. “I think there needs to be more.”
So does CAPT Nancy Bill, MPH, CHES, manager of the IHS Injury Prevention Program. “There’s certainly a need for more nurses to become involved in injury prevention efforts,” she agrees. “Nurses are so important in this initiative, because they bring in that clinical side that [injury prevention specialists from other disciplines] are not trained in. They see things that we don’t, because we don’t have that background.”
One of the best ways nurses can build a foundation for getting started in this much-needed work is through specialized training, recommends Jaylene Wheeler, coordinator of the ANTHC Injury Prevention Program. For example, IHS and ANTHC offer comprehensive injury prevention courses designed specifically for health professionals who work in AI/AN communities (see sidebar).
Nurse-Led Success Stories
When Pourier came on board as the Oglala Sioux injury prevention coordinator in December 2010, her first step was to use her nursing assessment skills to evaluate the extent of the problem. “After reviewing all the data that was available, I saw that we had a loss of children [in motor vehicle accidents] that was just totally unacceptable,” she says. “Our child safety seat usage rate was 2%—probably because of the cost. Car seats are expensive.”
She also identified an urgent need to increase her tribal members’ awareness of how to actually use the safety seats her program would be giving them. “When we lost the three little ones in that one accident, those children had car seats but they weren’t buckled into them,” Pourier explains. “A car seat is not going to do your child any good if you’re not buckling them in or if the seat is not installed correctly.”
To bring her message that child restraints save young lives to as many community members as possible, Pourier has crisscrossed the approximately 3.1-million-acre reservation, giving presentations and handing out car seats at tribal Head Start programs and Family and Child Education programs. She also meets with groups of parents, grandparents, and other child caregivers, and she follows up regularly with what she calls “checkup events” to ensure that the car seats are being used.
Today, Super Car Seat Lady is a ubiquitous presence in the Pine Ridge area. To provide constant public service reminders about the difference child safety seats can make, she can be found everywhere from the Oglala Nation Powwow to her own weekly one-hour radio show. As her five-year grant period comes to a close, Pourier’s efforts have achieved remarkable results: The tribe’s car seat usage rates have soared to 71%.
At the Absentee Shawnee Tribal Health System, which serves Native people living in five Central Oklahoma counties, injury prevention services are provided by the Public Health Nursing Department at the Little Axe Health Center in Norman. The TIPCAP-funded program is led by a team consisting of Ponkilla (who is Absentee Shawnee); Injury Prevention Coordinator Rosie Tallbear (a member of the Cheyenne and Arapaho Tribes and the Crow Nation); and public health nurse Gloria Seeley, BSN, RN (a member of the Choctaw Nation). They focus primarily on three areas: adult motor vehicle safety, child passenger safety, and elder fall prevention.
The fall prevention initiative is based on a multifaceted public health nursing approach, Ponkilla says. “We do physical assessments, and we use the resources within our clinic to refer elders to the services they need,” she explains. “We do balance assessments and refer patients to physical therapists for strengthening. We send them to optometrists for vision exams.”
Tallbear and Ponkilla teach tai chi and exercise classes to help community elders improve their health and lower their likelihood of falling. Adds Ponkilla, “Our program partners with a [Department of Health and Human Services, Administration for Community Living] Native American Caregiver Support Program, Title VI, Part C grant that issues durable medical equipment, such as canes, walkers, and rollators, to elders ages 55 and older who need assistive devices to help them stay independent in their homes. We wish to keep our elders independent and living within their communities for as long as safely possible.”
The team also visits elders on the reservation to conduct home safety risk assessments. For instance, Seeley says, “We look for [potential risks] such as throw rugs. People can get their feet caught up in those, and there they are with a fall and possibly a broken hip.” As a result of the injury prevention program’s recommendations, the tribal government has helped elders fall-proof their homes by installing safety features such as bathroom grab bars, wheelchair-accessible showers, and additional lighting.
Culturally Competent Safety Messages
“Understanding the culture of individual AI/AN communities is vital to planning and implementing injury prevention programs,” Bill emphasizes. “Injury prevention practitioners should be aware of their community’s tribal history, traditional health and wellness practices, political structure, community infrastructure, demographics, and lifestyle.”
Native nurses who have firsthand familiarity with both the culture and the community are in a perfect position to engage tribal members in injury reduction interventions. “Rosie and I have worked among our tribe for years, and so our people trust us,” says Ponkilla. “That’s really key. You’ve got to have your nurses build a rapport with the community and establish that trust relationship.”
In addition, being thoroughly knowledgeable about a particular tribe’s traditional beliefs and attitudes can help nurses develop customized safety education messages that are more likely to resonate with people in that community, says Bill, who is a member of the Navajo Nation.
“For example, speaking about death is a taboo in Navajo culture,” Bill notes. “So when we educate that community about preventing motor vehicle fatalities by using occupant restraints, we focus on a positive message—the lives that could be saved, rather than the deaths. That approach has made a big difference in getting Navajo people’s attention, because it respects the culture.”
During the 16 years Bill worked in the field as the IHS Navajo Area injury prevention specialist, one of her biggest accomplishments was playing a leading role in an initiative that was highly successful in increasing seatbelt use in the Navajo Nation.
“Another Navajo belief is that if you talk about a problem, you bring it upon yourself,” Bill says. “So we implemented a program called Saved by the Belt. It gave recognition to people from the community who had been in horrible car crashes but were able to walk away safely because they were seatbelted. That really changed people’s attitudes about wearing seatbelts. If someone who didn’t understand the culture had come in and used tactics like showing pictures of people who were killed or injured in car accidents, it wouldn’t have worked at all.”
Cultural considerations also come into play when injury prevention nurses do elder home assessments. “Many of our elders use wood stoves,” says Ponkilla. “So we need to make sure they have smoke detectors and carbon monoxide detectors installed.”
Being culturally sensitive when interacting with AI/AN elders is an absolute must, Bill adds. “You can’t just go up to somebody’s home and go into the house. You have to be invited. And you need to know how to speak to an elder. The elders are very respected, and so you don’t talk down to them, for example. Knowing those cultural cues is important.”
The Alaska Native Perspective
Alaska Native communities have their own unique injury prevention issues, including high rates of injuries and deaths from snowmobile accidents, all-terrain vehicle crashes, hypothermia, boating accidents, ice-related falls, and hunting accidents.
“It’s a whole different culture up here,” says ANTHC’s Wheeler, who is a member of the Inupiaq and St. Lawrence Island Yupik People. “For many Alaska Natives who live in rural areas, it’s still very much a subsistence lifestyle—hunting and fishing. People are out at different times of the year gathering their food, and for the most part they’re doing that by taking a boat to go to their camp or to go up the river.”
Injury prevention nurses face special challenges in trying to provide Alaska Natives with the same kind of community-centered outreach that works so well with tribes in the “lower 48.” That’s because most of Alaska’s 229 tribes live in remote, geographically isolated rural villages, rather than on large, centralized reservations.
“Some of our tribal communities are accessible by road. But most are not; you can only get to them by plane,” Wheeler explains. “When we think about how to involve nurses in injury prevention work, we also have to think about what type of support is needed to help them reach Alaska Native people where they live.”
Wheeler, whose Anchorage-based program provides training and capacity-building services to tribal injury prevention staff in six Alaskan regions, offers this advice for how nurses can create targeted safety awareness campaigns that will connect with Alaska Native populations in a meaningful, empowering way:
“It’s not necessarily about developing new interventions. Often, it’s about taking evidence-based strategies or best practices that are already available and figuring out how to adapt them to make them culturally appropriate,” she says. “For example, in the Alaska Native community, we’re very much an oral culture. So telling stories is one way to reach [our] people that’s been around for generations.”
To bring that oral tradition into the social media age, ANTHC produced a series of digital storytelling videos and public service announcements featuring Alaska Natives talking about their personal experiences of why injury prevention is important to them. In one video, for instance, a woman shares her memories of friends and relatives who drowned in boating accidents. Then she explains how such tragedies can be prevented by wearing life jackets, learning to swim, and not overloading boats.
In other words, says Wheeler, “We didn’t change the [existing] safety tips. What we did was create an audiovisual tool for drawing Alaska Native people into the work that we’re doing, getting them excited about becoming advocates for injury prevention, and making them feel proud of the community and culture that we come from.”
Pam Chwedyk is a freelance health care writer based in Chicago. She is a former editor of Minority Nurse.
Knowing your rights and options—and even more important, how to advocate for them—can help you break through the barriers on your path to career success.
Nurse practitioner George Copeland, MSN, NP-C, NRCME, is at the top of his profession. He’s been a nurse for 25 years, has earned advanced degrees and certifications, has his own family practice in southeast Florida, and teaches part-time at a community college.
Yet achieving a successful nursing career wasn’t always easy for Copeland, who was diagnosed with bipolar disorder in 1981. Like many new RN graduates, he started off working in the traditional hospital setting. But he quickly realized that he couldn’t handle the constant pressure of shift work.
“I tried, but I cannot work in that setting,” he explains. “I can’t take that particular kind of stress. Stress is the number one trigger for people with bipolar disorder. That’s why I went back to school to become a nurse practitioner so that I could work at my own pace and at what I wanted to do.”
“The Stigma Is Real”
It’s impossible to make generalizations about nurses and nursing students who are living with mental health disabilities, because the term encompasses such a broad range of conditions—including bipolar disorder, schizophrenia, depression, post-traumatic stress disorder, anxiety disorders, obsessive-compulsive disorder, attention-deficit/hyperactivity disorder, and more.
But this often-unrecognized population of minority nurses does have one thing in common. All too frequently, they face formidable barriers on the path to career success in nursing, from self-doubt and stigma to bias and outright discrimination in education, licensing, and employment. That’s in spite of the fact that the Americans with Disabilities Act (ADA) has been the law of the land since 1990 and will celebrate its 25th anniversary this year.
“Nurses with mental health challenges are struggling, and the stigma is real,” says Donna Maheady, EdD, ARNP, founder and president of ExceptionalNurse.com, an online resource network for nurses and students with disabilities. “Often they are very hesitant to ask for accommodations [under the ADA], or to come out in public as needing help, because of the fear of potential discrimination. They’re scared silent.”
Researcher Leslie Neal-Boylan, PhD, RN, CRRN, APRN, FNP-BC, dean of the University of Wisconsin Oshkosh College of Nursing and author of Nurses with Disabilities: Professional Issues and Job Retention, has documented ample evidence that disability-based discrimination is alive and well in the nursing profession.
“Many administrators don’t seem to understand that they’re really leaving themselves open to legal action,” she says. “The nurse develops a disability, or reveals it, and then the discrimination begins—the assumptions that these nurses can’t do the things they’re supposed to do, and that people will be uncomfortable around them.”
But even though a surprising number of nursing gatekeepers still seem to be clueless about their obligations under antidiscrimination laws, that doesn’t mean you have to be. If you’re a nurse or student with a mental health disability, your most effective success strategy is to actively be your own best advocate.
“It’s very important for nurses with any kind of disability to know their rights going in, rather than feeling vulnerable and being afraid to make waves,” says Karen McCulloh, BS, RN, co-founder and co-director of the National Organization of Nurses with Disabilities (NOND). “But not all of them do, and not all of them are good self-advocates.”
Do’s and Don’ts of Disclosure
Because chronic mental health conditions are “invisible disabilities,” your biggest self-advocacy decision is whether or not to disclose your disability to potential or current employers, says Robin Jones, MPA, COTA/L, ROH, project director and principal investigator for the University of Illinois at Chicago’s Great Lakes Disability and Business Technical Assistance Center and an instructor in the university’s Department on Disability and Human Development.
First, be aware of what the law says about your disclosure rights. According to the Boston University Center for Psychiatric Rehabilitation, a research and service organization dedicated to improving the lives of people with psychiatric disabilities, “Under the ADA, a person with a disability can choose to disclose at any time, and is not required to disclose at all unless s/he wants to request an accommodation or wants other protection under the law.”
The pros and cons of the decision to disclose must be weighed very carefully, because disclosure can be a double-edged sword. If you know that you’ll need the employer to provide accommodations that will help level the playing field for you, then you must disclose. But the unfortunate reality is that bringing your “hidden” disability out into the open may result in discrimination.
If you decide that the benefits outweigh the risks, then when, what, and how much should you disclose?
“The general consensus is to disclose as little as possible. Disclose only as much as you need to get the support you need,” Maheady advises. “If you’re talking with your co-workers, you don’t have to go into every detail of how long you’ve been in therapy and what meds you’re on. That kind of information should be shared only with the designated people in the organization whom you’d request accommodations from, such as the human resources or equal employment opportunity departments.”
It’s also important to know that you don’t necessarily have to make your disclosure immediately. “The whole issue of when to disclose is totally based on when you believe you need to ask for an accommodation,” says Jones. “You have no obligation to disclose until that time.”
Adds McCulloh, “Sometimes when you start a job, you don’t think you’re going to need an accommodation, but you may end up needing one after all. So if you need to disclose later, you can. I know that some employers are not pleased about that. But you do have the right to do that.”
Still, many experts recommend that it’s usually better to tell the employer up front. This not only establishes your legal rights from day one but also increases your chances for success by enabling you to receive accommodations right from the start. Furthermore, if you don’t disclose but later experience problems on the job as a result of your condition, such as a bad performance review, employers are less likely to be sympathetic—and the ADA may not protect you—if you suddenly pick that time to reveal that you have a psychiatric disability.
Early disclosure makes good sense for nursing students, too. “From my standpoint as an instructor, I would say the earlier the better, so that I can make accommodations for that student at my end,” says Patricia Giannelli, DNP, APRN, FNP-BC, PMHCNS-BC, ACNS-BC, assistant professor at Quinnipiac University School of Nursing in North Haven, Connecticut. “In our program, we always encourage students with disabilities to let us know as soon as possible, because we want them to succeed and to have all the tools they need.”
Know the Law(s)
Knowledge is power. That’s why another key self-advocacy strategy is to make sure you’re thoroughly knowledgeable about all the various disability rights laws that apply to you. You may find that you’re protected by more laws than you thought.
At the federal level, nurses who work at, or are applying for jobs at, private health care facilities with 15 or more employees are covered by Titles I and III of the ADA. If you’re a nursing student, or a nurse who works for a governmental or federally funded employer, such as a VA hospital, you’re covered under Title II of the ADA and Section 504 of the Rehabilitation Act of 1973.
Both laws protect people with disabilities from discrimination and entitle them to receive “reasonable accommodations” that will help ensure that they can perform the essential functions of the job or education program. For example, says Copeland, “When I was in nursing school, I had problems with not being able to concentrate. So I went to the Office of Students with Disabilities and asked for a quiet place to take exams, and extra time to take them. They gave that to me and they also gave me free counseling.”
Next, you need to be well-informed about what kinds of accommodation options you have the right to ask for. The federal Job Accommodation Network’s 2013 report, Accommodation and Compliance Series—Nurses with Disabilities, provides some examples of reasonable workplace adjustments a nurse with a mental health disability could request, including:
• Reduced distractions in the work environment, such as a quiet place to chart;
• Being able to take breaks or time off to see your therapist, talk to your therapist on the phone, or give yourself some downtime to relieve stress;
• More flexible scheduling, such as being able to work a shorter shift or one that’s less demanding and stressful;
• Modifications in the way you’re managed, such as having your supervisor provide to-do lists, written rather than verbal instructions (or vice versa), reminders about upcoming deadlines, and more frequent feedback about your performance.
In addition, the ADA Amendments Act of 2008 clarifies and expands the definition of “disability” in a way that’s especially beneficial for people living with chronic mental health conditions. The Amendments stipulate that “an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.”
In other words, Jones explains, “You don’t have to always be exhibiting the limitations of your mental health disability to be covered under the ADA. For example, a nurse may be doing fine without any accommodations but then suddenly starts having problems as a result of switching to a new medication. That’s an episodic situation in which the nurse would be entitled to receive a temporary, short-term accommodation.”
Federal protection for working nurses doesn’t end with the ADA. “Many nurses with disabilities don’t know that they can, for instance, take time off under the Family and Medical Leave Act if they need to leave work to go to a medical appointment [or if they need to be hospitalized],” Neal-Boylan says.
And don’t forget about state and local equal opportunity laws. “Many state laws provide greater protection for people with disabilities than the federal laws do,” Jones points out. “For example, if you live in California, you would be much better off pursuing an employment discrimination claim under your state’s civil rights laws than you would under the ADA. It’s just a stronger law.”
Should You File a Complaint?
Being fully aware of your rights as a nurse or student with a mental health disability also means understanding what action you can take if those rights are violated. In cases of obvious discrimination, such as being denied accommodations that would clearly not be an unreasonable burden for the employer or school, or being pushed out of your job or nursing program after disclosing your disability, knowing how to stand up for yourself becomes more important than ever.
Filing a discrimination complaint isn’t your only recourse—and it definitely shouldn’t be your first choice. “Try to see if you can get some resolution as close to the fire as possible,” says Maheady. “Is there a leader in the organization whom you can talk with to try to deal with the problem in a more effective way? Could you get a transfer to another unit? You need to explore every possibility for working it out internally.”
But if you’ve exhausted all of your internal resources without getting results, it’s crucial to do your homework about how the complaint process works.
Nursing students should start by reviewing their school’s grievance procedures. If going through the grievance process doesn’t end the discrimination, you can file a formal complaint against the school through the US Department of Education’s Office for Civil Rights (OCR). To find your nearest state or regional OCR, and learn more about how to pursue a complaint, visit www2.ed.gov/ocr. Students also have the option of suing the school directly rather than working with OCR.
Employment discrimination complaints are usually handled by the federal Equal Employment Opportunity Commission (EEOC). Unlike students, working nurses are required by law to file a complaint with the EEOC first before they can take their employer to court. EEOC complaints must be filed within 180 days of the date the discrimination occurred.
After the EEOC reviews your complaint, one of two things can happen. “The EEOC may decide that they will pursue your case against the employer,” says Jones. “Or they can issue a ‘Notice of Right-to-Sue’ letter, which gives you the right to go into the federal court system on your own and pursue the complaint with a private attorney.”
But before you decide to make such a drastic move, sit down and do some soul-searching about this question: Is it worth it?
“Be careful what you wish for,” Maheady cautions. “You have to ask yourself: Is this the hill you want to die on? If you lawyer up, do you think you’re going to be welcomed in that hospital? I’m not saying that suing your employer is never warranted. But I always advise nurses with disabilities to take that step very, very carefully.”
McCulloh agrees. “It’s not an easy process,” she emphasizes. “The right to sue still means that you need to have the financial resources to hire a lawyer, file a case, and take it to court. And it’s not a quick fix. Going through the legal process takes a very long time, which could put you in a situation where you’re not working, and not earning any income, for that entire period.”
Empower Yourself for Success
Ultimately, the most empowering pathway for nurses and students with mental health disabilities is to find positive alternatives that will let you create the best possible working or learning environment for your needs—one that will minimize your triggers and maximize your ability to succeed.
One way to do this is to connect with resource organizations that can provide advice and support—from university or employer disability services offices to peer advocacy groups, such as NOND and ExceptionalNurse.com, where you can network with other nurses who have similar disabilities to learn what’s worked for them. (See “Resources” sidebar.) These support systems can also help you identify employers who are more welcoming to nurses with disabilities because they recognize the value of having a diverse, inclusive, culturally competent nursing staff.
If you can’t change your current working conditions, or if you find that your job is just too stressful even with accommodations, consider following Copeland’s example of pursuing a specialty career niche that will be a better fit for you. For instance, one nurse from the ExceptionalNurse.com community (who asked to remain anonymous) comments: “I have bipolar affective disorder and I work as a clinical documentation improvement specialist. I couldn’t handle [bedside] nursing, but I found another area where I could be successful and use my clinical knowledge.”
Copeland offers this firsthand advice: “Don’t let yourself be defined by the fact that you have a mental health condition. If your goal is to be a nurse, or to be a nurse practitioner or a DNP, don’t let other people tell you that you can’t do that because of your disability. There are so many nurses out there who have multiple disabilities, and yet they’ve proved they can do it.”
By providing health education and wellness promotion in religious communities of color, minority nurses of all faiths can make a powerful difference in eliminating health disparities.
Not that long ago, nurses who answered a calling to promote physical and spiritual health in their places of worship were known as parish nurses or congregational health nurses. But in today’s unprecedentedly multicultural America, where many of the faithful are just as likely to attend a Muslim mosque or Hindu temple as a church or synagogue, this specialty area of nursing has acquired a new, more all-embracing name: faith community nursing.
“When what we do was first recognized by the American Nurses Association [ANA] as a specialty practice in the late 1990s, it was under the title ‘parish nursing,’” says Nancy Rago Durbin, RN, MS, FCN, interim director for faith community nursing for the Health Ministries Association (HMA), a professional association for faith community nurses (FCNs). But by 2005, when Durbin was part of a team working with ANA to update the specialty’s Scope and Standards of Practice, the limitations of that name had become glaringly obvious.
“One of the ANA leaders said: ‘Do you have to be Christian to claim this specialty?’” recalls Durbin, who is also director of Advocate Parish Nurse Ministry and the Parish Nurse Support Network for Advocate Health Care in the Chicago area. “When I said, ‘No, this is by no means an exclusive specialty, any nurse from any faith is welcome to practice,’ she said: ‘Well, your name doesn’t seem to include that.’ And she was right!”
Of course, the term “parish nurse” is still alive and well. It’s widely used to denote FCNs who work to improve health in specifically Christian settings. But professional organizations like HMA and the International Parish Nurse Resource Center (IPNRC), a ministry of the Church Health Center, now recognize that church-based nursing is one thread in a much bigger tapestry that encompasses many different faith traditions. In fact, the Church Health Center, despite its name, teaches FCN training courses to nurses of all faiths all over the world.
When and how did traditional parish nursing evolve into this broader, more culturally inclusive specialty? “I’ve always known it to be all-inclusive,” says Maureen Daniels, RN, MN, FCN, an IPNRC faith community nurse specialist. “I think it’s just the organic nature of it that’s helped it grow into more of these other faith settings. One of the things that’s so beneficial about this model is that it’s meant to be adapted to the community and to where the needs are.”
Different Faiths, Same Roles
No matter whether the faith they practice is Baptist, Buddhist, or Baha’i, minority nurses need to be involved in addressing the health and wellness concerns of their own faith communities. Even though most FCNs do this work on a volunteer basis while also holding regular nursing jobs, they can make a tremendous difference in improving health outcomes and reducing health disparities in communities of color—especially those that are economically disadvantaged and/or medically underserved.
“[Places of worship] can be a very important resource for promoting health, because they reach so many people on a regular basis,” explains Ann Littleton, a congregational health advocate at Sacred Heart Catholic Church in Greenville, Mississippi, which serves a predominantly African American congregation plus a smaller Hispanic congregation. “At our church, we probably have more people from the community gathered together in one place every weekend than anywhere else. We can pass out information about cancer, heart disease, stroke, and diabetes just like we pass out the Sunday bulletin.”
The roles FCNs perform are remarkably similar from faith to faith. The Canadian Association for Parish Nursing Ministry organizes those functions into this easy-to-remember acronym:
H – Health advisor
E – Educator on health issues
A – Advocate and resource person
L – Liaison to faith and community resources
T – Teacher of volunteers and developer of support groups
H – Healer of body, mind, spirit, and community
For example, Ameena Hassan, RN, a Muslim nurse who works in the ICU at Las Colinas Medical Center in Irving, Texas, has been providing faith community nursing services at her mosque, the Islamic Center of Irving, since 2009. It’s a large mosque, serving approximately 500 families in the Dallas area.
“We do health education classes here every month,” says Hassan, coordinator of the mosque’s Health Advisory Committee. “We do blood pressure screenings and cholesterol screenings. We do mammograms every year, usually in April. During flu season, we do flu shots.”
The mosque also holds an annual health fair. At last year’s event—attended by almost 200 community members—local physicians, nurses, and dentists provided 100 cholesterol and diabetes screenings, 33 bone density screenings, 67 dental exams, and 42 vision exams. In addition, they gave 90 attendees nutrition advice and distributed 100 bicycle safety helmets to children.
At New Horizon Church International in Jackson, Mississippi, “cardiovascular disease is the number one health problem among my congregation, so we do lots of CVD screenings, education, and referrals,” says Ella Garner Jackson, RN, CHN, leader of the church’s Health and Wellness Ministry. Jackson and her team also provide a full calendar of other disease prevention programs, including exercise classes, kidney disease screenings, and HIV/AIDS education. On the advocacy front, the ministry helps increase access to health care for low-income church members by connecting them with community resources that provide affordable prescriptions.
Because Mississippi has some of the highest levels of poverty and African American health disparities in the nation—including disproportionately high morbidity and mortality rates from cancer, diabetes, and other chronic diseases—Jackson is especially focused on the FCN’s volunteer training role. In 2005, Jackson, who is also a cardiac case manager at Mississippi Baptist Medical Center, founded the Abundant Living Community Organization (ALCO), a nonprofit organization that has taught nearly 160 nurses and non-nurse volunteers to lead health ministries in African American churches throughout the state.
Same Roles, Different Needs
How faith community nurses carry out these roles is driven by the unique needs of the communities in which they serve. In some faith settings, for instance, FCNs must tailor their health promotion activities to accommodate specific religious requirements.
“In Islam, we don’t mix men and women together in the mosque,” says Hassan. “If we’re doing something like screenings or flu shots, we have to have it in two separate places for men and women. And the women’s space has to be covered, because they don’t want to [expose their bodies] in front of others.”
But in many minority faith communities, the biggest challenges for FCNs are more likely to revolve around cultural and socioeconomic needs than belief-based ones.
“Here in the Chicago metro area, Advocate’s parish nursing program includes two Latino congregations and two African American congregations,” says Durbin. “Our nurses who work with those communities are very focused on the needs of people who are disenfranchised, undocumented, and struggling with access to care. Some of our nurses are dealing with the problem of food deserts, and they’re trying to work with the communities to create sustainable vegetable gardens and increase access to quality foods.”
Littleton, a retired English teacher who became a church health advocate after taking the ALCO training in 2010, emphasizes that “in our Hispanic health ministry, we don’t ask about immigration status. If anybody comes to us in need of our services or a referral, we try to make them feel as comfortable with us as possible. It’s important for them to feel that we’re not going to pry into their status; we’re just providing health services that they need.”
One of the most empowering ways minority FCNs can lead their faith communities down the path to healthier living is by breaking down cultural barriers that exacerbate health inequities and impede access to care.
“In some African American communities, there is still enormous distrust of the health care system,” Durbin notes. “A black faith community nurse can become the entry point for many people to develop that trusting relationship. Someone may say, ‘I went to the public health clinic down the street and they were mean to me. So I’m not going back.’ And the nurse will say, ‘Well, how about if I go with you? Because that’s where you need to be to get your meds refilled.’ Then the nurse can physically take that person back to the clinic and help them [build a better relationship with those providers].”
Durbin also notes, “In our Latino communities, men’s health is a big issue. Many of the guys have traditional machismo cultural values, so they don’t take care of their health. And traditionally, it’s the women and the older men who are the churchgoers, but not the younger guys. Latino faith community nurses who know the culture can figure out creative ways to engage that core group of men, such as providing them with health information through the people who love these men and who do go to church.”
Enlisting the aid of lay community health promoters can also help FCNs connect with hard-to-reach populations. Daniels cites the example of a group of parish nurses in Portland, Oregon, who are partnering with local promotores to extend their health ministry outreach deeper into the Hispanic community. “Because the promotores had such good relationships with the people, and people trusted them so much, they were able to get many more community members to come to health events the nurses had organized than the nurses would have gotten by themselves,” she says.
Bridging Cultural Differences
Even if a nurse doesn’t share the same religious, ethnic, or cultural background as the faith community he or she works with, collaborating with leaders within the community can be an effective way to bridge those gaps. For example, the Faith Community Health Ministry (FCHM) program at Carolinas HealthCare System in Charlotte, North Carolina, uses a model that makes it possible for the hospital system to meet the needs of virtually any belief community.
“We form partnerships with faith communities through either a faith community nurse or a faith community health promoter,” explains Sheila Robinson, BSN, RN, the program’s health ministry coordinator for Mecklenburg County. “My role is to help each one of those individual communities promote health and wellness within their own particular faith. I provide the clinical guidance and oversight to the nurses and the health promoters.”
This approach enables Robinson, an African American Christian nurse, to work with such diverse faith communities as the Hindu Center of Charlotte, a temple that serves about 2,000 families. Her health promoter partner is Chidaabha Vyas, vice president of the Hindu Center’s executive committee. When they first teamed up in 2012, one of their key projects was to survey the temple’s members about their most important health concerns and then develop programs targeted to those needs.
“Heart disease, allergies, and weight loss were some of the top concerns the community identified for us,” Vyas says. “Diabetes is a very big concern. And it’s not specifically the Hindu community that’s so affected by this disease,” she points out. “It’s [Asian] Indian people in general. Diabetes is more of a concern for us as a race, I would say.”
Being able to work side by side with a community liaison like Vyas makes it easier for both Robinson and Carolinas HealthCare System to serve the local Hindu community in culturally sensitive ways. “When we formed the partnership, I told Chidaabha, ‘I’m of Christian faith, so you will have to help me to be able to meet the needs at the Hindu Center,’” Robinson says. One cultural lesson she learned early on is that some members of this community may be uncomfortable with the idea of placing a terminally ill family member in hospice care.
“Again, this is more of an Indian cultural issue than a religious one,” Vyas stresses. “Some of us do not believe in speeding up the process of death. We believe death will come when it will come. Having a connection between our temple and the hospital system through the FCHM program is very helpful, because we can let them know that when an Indian family is resisting hospice it’s because there is a real cultural dynamic going on.”
A Higher Power
Praying isn’t enough to make America’s health disparities crisis go away. But by educating, advocating, and integrating spirituality with health in all the diverse settings where people gather together to pray, faith community nurses have the power to bring about real change.
“Because of our partnership with Sheila and the FCHM, something is happening at the Hindu Center now that was never happening before,” Vyas reports. “It has helped us develop a culture that prioritizes health. Before, health was thought of as more of an individual responsibility. But now, we’re beginning to develop a connection with our members based on the idea that ‘you are responsible for your own health, but the temple is here to help you be responsible for your health.’”
Jackson adds: “My pastor has told me, ‘I know that you’ve saved some lives in this congregation. I know that I am a healthier person myself because of all the education you’ve provided in the church.’ I can look out into the pews and show you people who were not going to the doctor, who weren’t taking their medicine, and who are now routinely seeing a physician. That’s at the heart of what a faith community nurse can do.”