Recommendations for Patients with Sickle Cell Disease

Nurses are the largest health care workforce in the United States, but in our patients’ eyes, we may not have much force at all. In 2010, the Institute of Medicine (IOM) published a report on the Future of Nursingand made recommendations that just as easily could have come from patients with sickle cell disease (SCD), had we listened.

During the 2011 faculty retreat at the University of Illinois at Chicago College of Nursing, we deliberated on the IOM recommendations. Recently, as I read anecdotes of patients with SCD from my research on perceived injustice—a context-bound unfairness of treatment that a person receives from important others, such as health care providers—I noticed striking similarities with the IOM recommendations.1,2

SCD is an inherited blood disorder affecting approximately 80,000–100,000 people in the United States, mostly of African descent; it’s among the most common fatal inherited diseases. Pain crisis, its hallmark and most disabling complication, is severe and recurrent. Patients with SCD often interact with nurses within the health care system asking for help to control their pain.

As I read the research anecdotes from patients with SCD about their interactions with nurses, the patients’ message was clear: nurses lack enough training about SCD to provide competent pain care. They echoed the IOM’s recommendations:

  • Implement nurse residency programs

Some nurses recognize inadequacies in their education but blame their incompetency in caring for patients with SCD on nursing education programs. One patient wrote about a nurses’ comment to her, “When you attend school to become an RN, the [nursing] school [doesn’t] go into a lot of details on SCD.” Nurse residency programs could provide nurses with opportunities for exposure to diverse patient populations and engender necessary confidence for clinical practice. One may contend that lack of funding is a barrier for residency programs to implement this education. But it is costlier to the U.S. health care system not to do so. In 2006 alone, the cost of acute health care visits for patients with SCD was $2.4 billion.3 If nurse residencies could help reduce the 33.4% and 22.4% of patients with SCD re-admitted within 30 days and 14 days, respectively, for pain crisis, there would be possible substantial cost savings.4

  • Ensure that nurses engage in lifelong learning

Patients with SCD say that nurses need lifelong learning to champion their care. One patient asserted that “there needs to be more training on [SCD] and more understanding of why it is necessary to treat [SCD] pain crisis with narcotics ASAP to help patients get control of the pain and move toward ending the painful crisis.” Another said most of her problems come “from ignorant nurses.” Lack of time could factor as a deterrent for continuous learning. But with advancement in technology and Internet access, nurses can search and learn about a disease in no time and with little cost.

  • Prepare and enable nurses to lead change to advance health

Patients with SCD, particularly those who are knowledgeable about their conditions, want a partnership with nurses for better control of their pain. Nurses are well positioned to be their champions, but need personal and professional growth. A patient with SCD applauded a nurse who embodied this recommendation when she wrote, “Few nurses took training from Dr. X, and my nurse came to me and said that she now understood more on our pain and that she [learned] a lot about SCD that she didn’t know.” This statement gives me hope for our profession. We need more efforts to sustain it and advance health for those with SCD.

It is in nurses’ best interests to engage in personal and professional development. The consequence of inaction could be detrimental. We may be the largest health care workforce, but without much force we lose patients’ trust in our competency, profession, and ability to ease their suffering. The IOM report is a “dawn of a new day” for nurses, and we are in an excellent position to advance health care. We should take advantage of its recommendations and this opportunity to improve the nursing profession so that all patients maintain the trust they have bestowed upon us.


The work cited in this publication was made possible by funding from the NIH Basic and Translational Research Program (1 U54 HL090513) and the Computerized PAINRelieveIt for Adult Sickle Cell Disease (R01 HL078536). The author thanks the patients with sickle cell disease for their study participation; the staff at the Comprehensive Sickle Cell Center for their support of the work; her colleagues (Diana Wilkie, Ph.D., R.N., F.A.A.N.; Robert Molokie, M.D.; and Crystal Patil, Ph.D.); and the other members of the research team for their assistance with study implementation (Marie Suarez, Ph.D.), data management (Young Ok Kim, Dr.P.H., R.N., C.H.E.), and data collection (Harriett Wittert, B.S.N.; Jesus Carrasco, B.A.; and Veronica Angulo, B.A.).


  1. J.A. Colquitt, “On the Dimensionality of Organizational Justice: A Construct Validation of a Measure,” Journal of Applied Psychology, 86 (2001), 386–400.
  2. M. Elovainio, J.E. Ferrie, D. Gimeno, R. De Vogli, M. Shipley, E.J. Brunner, and M. Kivimaki, “Organizational justice ans sleeping problems: The Whitehall II study,” Psychosomatic Medicine, 71 (2009), 334–340.
  3. S. Lanzkron, C.P. Carroll, and C. Haywood, Jr., “The burden of emergency departments use for sickle-cell disease: an analysis of the national emergency department sample database,” American Journal of Hematology, 85 (2010), 797–799.
  4. D.C. Brousseau, P.L. Owens, A.L. Mosso, J.A. Panepinto, and C.A. Steiner, “Acute care utilization and rehospitalizations for sickle cell disease,” Journal of American Medical Association, 303 (2010), 1288–1294.

Improving Patient Care with Personal Health Records

Every time an individual sees a doctor or visits a hospital, clinic, or health care facility, a record of their health information is kept. From allergies and vaccinations to past consultations and procedures, information is recorded to help nurses and other health care professionals treat their patients quickly, safely, and effectively. All of the information related to an individual’s health is compiled into what we call a health record.

With so much health data tracked over such a long period of time, individuals end up accumulating several different health records, especially as they enter adulthood. Family practitioner, cardiologist, allergist, surgeon, chiropractor—the list of health care providers one sees throughout his or her life can be extensive. In fact, the various elements of an individual’s health record are likely scattered across those providers—possibly residing in numerous cities— and are kept in various combinations of paper and electronic record-keeping formats.

Ultimately, this leads to a disconnected record of an individual’s health.

What is a personal health record (PHR)?

According to the American Health Information Management Association website, a PHR, as defined in 2004, is a lifelong resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR, maintaining and updating it in a secure and private environment and determining rights of access.

In short, PHRs allow individuals—not health care providers—to record, access, and share personal health information when they want, where they want, and with whom they want. Even though a PHR can be electronic, it is important to remember that PHRs are not the same as electronic health records (EHRs). An EHR is a collection of health information that has been collected—and is managed—by individuals’ various health care providers. In today’s health care system, one patient might have several EHRs under the control of numerous organizations.

In contrast, a PHR is compiled and maintained only by the individual and serves as a comprehensive record of one’s health history. With some software, an individual can authorize a health care provider to add data to a PHR.

The content found in a PHR depends on the type of care a patient has received. Documents commonly included in PHRs range from identification sheets and medications to X-ray reports and hospital summaries. Each one of these documents is a unique component of an individual’s PHR with his or her own health history.

What kinds of PHRs are available?

PHRs can be as simple as a handwritten card in your wallet, a portable thumb drive in your pocket or purse, a typed document, or information located on the Internet. They can be kept in print- or electronic-based formats. The major differences between the two are the convenience with which they can be updated and maintained, as well as their accessibility.

Paper PHRs can provide a good overview of one’s health history. The downsides, however, are the effort needed to keep the forms up-to-date and the limited accessibility of the information. For example, a print version of a PHR will not be available in an emergency unless the patient is carrying it at the time.

Some individuals install a PHR program onto their personal computer so that they are able to upload all of their health information and easily update or print forms when necessary. However, similar to the paper-based format, the main disadvantage of keeping electronic PHRs on a personal computer is the lack of access, though it is not difficult keep them updated.

In our rapidly evolving health care system, in which nurse informaticists are utilizing innovative technology every day, some individuals choose to manage their electronic PHRs on the Internet. The obvious advantage of this format is its immediate, one-click accessibility in emergency and non-emergency situations. However, Internet-based PHRs have had a low adoption rate. Because practitioners themselves may not fully understand the way PHRs work and the risks and benefits, they do not necessarily encourage patients to use these applications.

Individuals have many choices when selecting a PHR provider or sponsor, as they are usually called. Primary care providers, employers, and health insurers may offer PHR options as well as independent entities, who may sell software applications or online services for a monthly or annual fee. Individuals should understand the advantages and disadvantages of each type of PHR sponsor by asking questions relating to PHR comprehensiveness, ownership rights, accessibility, security, portability, and cost.

How do PHRs improve patient care?

Since an individual’s PHR has the capacity to serve as a complete and comprehensive health history, not an amalgamation of disjointed health records, each health care professional is able to apply a more holistic view—and thus more insight—into their patient’s unique health story simply by reviewing the patient’s PHR.

This allows health care professionals to deliver safer, more effective care as a result. The accessibility of health information in a PHR also improves treatment for conditions or emergencies that occur away from an individual’s primary care provider.

In addition to political discussions and actions around health care reform, a central factor stimulating the use of PHRs is the individuals’ increased desire to engage more actively with their personal health and collaborate more directly with their health care providers—with more control and more informed decision making—whether that be while discussing treatment options, negotiating costs, or prioritizing preventive actions.

Another underlining idea behind the PHR is that the more informed an individual is regarding his or her health—with all of its strengths and weaknesses—the likelier individuals are to become more involved participants and more interested in managing their own health care.

How can nurses increase the use of PHRs?

Nurses are in a prime position to influence the use of PHRs among patients, friends, and family. We provide a large portion of direct patient care. Nurses are the ones who listen regularly to the terms that patients use when asking questions or digesting data; they can be instrumental in deciding what type of health information is necessary for patients to include.

To those interested in PHRs, nurses should stress the importance of having a consistent, accessible record of one’s health in one location that can be updated by one’s self. This accessibility of health information can be essential during times of emergency or while planning health-related purchases such as buying insurance.

Caring for Our Aging Population

Talk about a momentous birthday—the oldest baby boomers started celebrating their 65th birthdays in 2011, ushering in what appears to be a huge change in health care demands in the United States. As the population ages in unprecedented numbers and is living longer than at any other time in history, the field of gerontological nursing is facing big changes with staffing needs and day-to-day practices.

Experts in gerontological nursing are reporting a greater demand for nurses now and in the future. As the number of patients increases, a sufficient number of nurses will be needed to care for them and to relieve the workload. The solution is complex and depends on the collaborative actions of government agencies, health care providers, colleges and universities, and nurses themselves.

According to a 2005 report by the National Institute on Aging and the U.S. Census Bureau, projections indicate that by 2030 the older population will total 72 million residents, doubling the number from the year 2000. By that time, one in five citizens will be 65 or older. And, according to the report, seniors are living longer lives, but 80% of them have at least one chronic health condition (such as heart disease, diabetes, or respiratory problems) and half of them have at least two. So even as the population enjoys living longer, the health care needs of older adults are more complicated.

“There is a strong assessment that the current workforce today is not prepared to care for the population,” says Amy Cotton, M.S.N., G.N.P.-B.C., F.N.P.-B.C., F.N.G.N.A., and president of the National Gerontological Nursing Association. “Another issue of great concern for colleges is when graduates are not prepared to care for the population they have to care for, it creates a lot of job stress and can lead to a lot of turnover.”

Typically, health needs become more complex as people live longer lives. There is a pressing need for competencies surrounding normal aging, cultural norms, and the very fine line of effective communication with the patient. And as the age gap between the younger workforce and the increasingly older patient gets wider, awareness of those variations is essential to provide good care.

“Those generational differences can create a schism,” says Valerie Kaplan, Ph.D., A.R.N.P., F.N.P.-B.C., F.A.A.N.P. and a senior policy fellow with the American Nurses Association. For instance, older generations grew up following a doctor’s orders with no questions asked. Younger generations—who often search for second opinions and cutting-edge treatments—might find that a puzzling way to approach personal health.

In addition to the age differences, census predictions indicate that the population will be composed of more ethnically diverse elders by 2030, with 72% being non-Hispanic white, 11% Hispanic, 10% African American, and 5% Asian. “There is a diversity explosion in growth for various ethnic groups in this country,” Cotton says.

As those populations age, there arises a pressing need for more diversity among nurses. Cultural awareness of family expectations, patient lifestyle, and cultural norms often gives the nursing staff an indication of how to proceed with care plans. The more a nurse knows about a patient, the more likely the care plan will be successful from the beginning.

Natalie Nieves, a case manager for VNA Health Care of Hartford in Connecticut, sees firsthand the need for nurses of all backgrounds. “Minorities can be majorities in the inner cities,” she says. “Being bilingual is a plus in my field. [Patients] trust you a lot more, and they confide in you a lot more.”

When a Spanish-speaking patient can speak with a nurse also fluent in that language, they glean more from the conversation, since the details do not get lost in translation. “There is no barrier,” Nieves says. “It is clear, concise, and direct. It is amazing the difference it makes.” As valuable as an interpreter is, having a relationship where both parties speak the same language just makes it easier. “When a nurse goes out with an interpreter,” says Nieves, “the patient feels like they are talking to two people at once.”

The elderly patient benefits are both emotional and physical when they are receiving health care from a bilingual nurse. “There has to be an understanding of how cultural norms impact decisions,” says Tara Cortes, Ph.D., R.N., F.A.A.N., Executive Director of The Hartford Institute for Geriatric Nursing and professor at New York University’s College of Nursing. For instance, Nieves, who is of Hispanic descent and fluent in Spanish, has noticed this in her own practice when she visits patients who might not relate how a diet full of foods traditional to his or her upbringing might impact something like blood sugar levels.

“We need to encourage minorities to nursing,” says Nieves. “We need them out there.”

For most nurses working with an older population, good communication is of primary importance. “If you can’t, at a basic level, communicate with an older adult, you will miss the boat when caring for that adult,” Cotton says. “That communication is a critical piece and a basic piece that is easily missed. We have such a hurry-up system.”

Sabina Ellentuck, who is launching a second career as a nurse, says she tries to take a breath and focus on the patients before she approaches them. In a way, quieting her own thoughts helps her slow down, greet her patient, find out how they are doing, and speak with them for a while before moving on to the health care procedures. “You have to be able to connect with them or they will not listen or do what you ask,” she says.

That bit of personal interaction also gives a valuable perspective. “It is feeling good and communicating and having fun with them,” says Ellentuck. “On top of which there is this big need.”

Most nurses, whether or not they work primarily with a geriatric population, will care for elderly patients at some point in their careers; knowing the normal signs of aging is an essential skill. “You have to think of what aging does to vision and hearing,” says Cotton. There can be changes in balance, memory, or mobility. Personal interactions and communication also allow nurses to glean an understanding of what is a normal result of aging and what might be a red flag for something more serious.

But nurses feel the time crunch. “There is pressure to do things quick, but it is extremely important to connect with the patient and be a good detective and pick up signs when something is wrong,” Ellentuck says. “It is hard to do that when you are rushed. The balance really is the challenge of integrating good health care while doing all these things.”

While the need for nurses continues to grow, pay disparity is often a roadblock, says Cotton. When nurses can earn more money in an acute care setting than in a long-term facility setting, they are generally drawn to the higher pay scale. Cotton says payment reform has to occur to attract more nurses to the field. After all, many nursing students graduate shouldering large debts, and paying them off is of primary importance. “It is hard to support yourself with what a geriatric nurse makes today,” says Cortes.

Many experts say the foundation for successful gerontology nursing practices begins in school and continues as nurses enter the workforce.

“The first exposures to gerontological nursing practices are critical,” says Cotton at the National Gerontological Nursing Association. Students need exposure to healthy, vibrant elders, as well as those who are sick or frail. And age does not always indicate health. Students need to be able to refute the myth that aging goes hand-in-hand with illness. “Changing that perception requires interaction with healthy and well elders,” says Cotton.

Valerie Cotter, D.N.P., A.N.P./G.N.P.-B.C., F.A.A.N.P., and advanced senior lecturer and Director of the Adult Health Nurse Practitioner Program at the University of Pennsylvania School of Nursing, says schools are trying to make it interesting for students to come into the field of geriatric nursing. One of the best ways for that to happen is for students to see the passion that so many professionals have for working with an older population. Describing that job satisfaction to students is essential, Cotter says, especially if the students have not had an opportunity to experience in their own lives.

“I was fortunate to have a good relationship with my grandparents,” says Cotter. “As a nurse, I gravitated to older adults. I love the life story and the narratives. Older adults have many more experiences, and you look at health within the context of those life experiences.” Through education as well as their personal experiences, nurses are able to sharpen their skills to the complex needs of the elderly and recognize red flags quickly. “You have to know the baseline status to recognize change,” says Cotter.

In 2002, according to an article in Health Affairs, 58% of baccalaureate nursing programs had no full-time faculty with specializations in geriatrics.1 “We still don’t have enough geriatric content built into the undergraduate curriculum,” says Cortes. “We need nurse practitioners for geriatric care. We do not have enough physicians to care for this population. Nurses can do a tremendous job of keeping the older population safe and at home and functioning at their highest level.”

Even a nurse who works in ICU needs to know if the patient has had a flu shot to provide comprehensive care. A nurse might encounter a healthy and active 90 year old or 67 year old with high blood pressure, complications from diabetes, or other serious health issues. “The reality is we are still providing care for adults across the continuum,” says Kaplan. “As they age, their health care needs are not driven by where they end up in the health care facility, but by the health care problems. [Nurses] need to identify the care needs of patients not based on where they work.”

While an important foundation of geriatrics is educational, Kaplan says, nurses need a general understanding of what it is to care for someone who has lived through different times. “The brain changes are sometimes more challenging than the physical changes,” Kaplan says. They are also more difficult for some family members to come to terms with. The nurse’s job, says Kaplan, is to be present for the patient. “If they are in 1945, then you are in 1945,” she says. “It is important that nurses as caregivers recognize that and not challenge that.”

Nieves says there is so much going on with an elderly patient that nurses are forced to use all their nursing skills on the job. “You use every single thing you have got,” she says. “I really truly enjoy my job.”

The industry is constantly developing models for consistent, coordinated, and collaborative care for older adults, says Cortes, but it is the nursing staff that carries it out. Nurses care for the whole person, she says. Caring for an elderly population is much more complex than treating only health issues. With elderly patients, you must consider their lifestyle. Are they eating enough? If not, is that because they forget or because they do not have enough access to food or transportation to get food? Do they have a small appetite? Is their medication impacted in any way by their foods? Are they taking their medication exactly as prescribed? How involved is the family, and how will family beliefs and attitudes change the course of the care?

To encourage nurses to specialize in geriatrics, it’s important to get nurses into the field and show them how rewarding it can be. “I’d love to see the number of nurses certified in geriatric nursing and practicing as NPs, and caring for elder adults increase,” says Cortes. “Nurses will be much more involved in developing those practices. It is very positive.”

Ellentuck finds the changes galvanizing. “It is a very exciting time now in how we think of helping older adults—many assumptions no longer exist,” she says. “A prime focus now is on function and getting people moving, moving out of those wheelchairs (if possible), doing activities that connect to the person’s interest or background. . . . To me, this is very exciting, and I look forward to being involved and doing these new practices that are truly patient-centered care.”


  1. Christine Tassone Kovner, Mathy Mezey, and Charlene Harrington, “Who Cares for Older Adults? Workforce Implications of an Aging Society,” Health Affairs 21 (2002): doi: 10.1377/hlthaff.21.5.78.

Minority Mental Health: Shining a Light on Unique Needs and Situations

A recent Institute of Medicine report documented evidence that minorities in the United States received lower levels of mental health care, even when variables such as insurance status and income were controlled, says Debbie Stevens, P.M.H.C.N.S.-B.C., a doctoral student at Emory University’s School of Nursing in Atlanta, Georgia. That’s because nurses play a major role in helping reduce these disparities by educating patients, families, and their communities, Stevens says.

Overcoming cultural barriers

Finding treatment for an illness, such as depression, can be difficult for members of minority groups because they may face stumbling blocks to care, says Vicki Hines-Martin, Ph.D., R.N., F.A.A.N., a professor in the University of Louisville School of Nursing in Louisville, Kentucky.

A major barrier is a perceived cultural stigma of mental health issues. Hines-Martin says some minority populations don’t talk about suicide or depression because it’s seen as shameful. “You may have people who say, ‘I know about suicide, but it has nothing to do with my family or my group,'” she says.

Another problem is that many people may not understand the seriousness of their needs, says Harriett Knight, R.N., a nurse at Sinai Hospital in Baltimore, Maryland. Some people may initially seek an appointment with a specialist, but if treatment involves ongoing medication for an illness, such as depression or schizophrenia, the patient may be resistant to taking the drug as prescribed, or they don’t fully accept that they should continue to take it, says Knight.

Sylvia Hayes R.N., M.S.N., is a nurse in the mental health unit of Peninsula Regional Medical Center in Salisbury, Maryland. She says many patients she sees also don’t accept that mental health is a specific medical science. “They tend to believe their issues are caused by a physical problem,” she says. So they may seek help for a persistent headache, when the real issue may be anxiety related, she says.

In many cases, if a patient realizes that his or her medical issue does involve mental health, they may face another barrier—the fear of being stigmatized. Hayes says she’s seen many African American patients who are afraid that they’ll be “labeled” if they admit to having mental health issues.

“They don’t want to be considered ‘crazy,’ and their family doesn’t want them to be considered ‘crazy,'” says Hayes. “They may be afraid their family will isolate them if they seek help, because then they’ll become an embarrassment.”

Of course, many families support their loved ones suffering from mental illness, regardless of any perceived social stigma. In fact, when relatives are accepting of their loved ones and are willing to help them find care, they can be a vital part of the recovery plan. Many patients will even turn to family members for help before they turn to the medical system, says Hayes. This is good, as long as well-meaning relatives encourage patients to seek professional help when necessary. “It can be a negative if the family delays the patient from receiving the treatment they need,” she says.

Many families actually hold the key to helping patients understand their medical histories, Hayes says. “I’ve seen people with family secrets. They had an uncle or aunt who may have dealt with the same mental health issue,” she says. But if the family shunned that aunt or uncle, the patient may not be as open to finding help.

Family cooperation is also important in treating children and teens. Hayes says many mental illnesses are present at a young age. “I’ve worked with kids as young as two years old,” she says.

However, it may be difficult for well-meaning families to receive satisfactory care. A recent press release from the National Alliance on Mental Illness (NAMI) reports “63% of families reported their child first exhibited behavioral or emotional problems at seven years or younger,” but at the same time, “only 34% of families said their primary care doctors were knowledgeable about mental illness.”

Language and cultural obstacles present another challenge for mental health patients. If a person can’t find a medical professional they can simply talk to, they are less likely to seek medical care, says Patricia Lazalde, Ph.D., Director of Behavioral Health at San Ysidro Health Center in San Diego, California.

San Ysidro serves many Spanish-speaking Latino clients, so it’s important for minority nurses to be able to speak Spanish too, she says. “Minority clients may come in with a variety of stressors, but due to language issues they often don’t seek help until it reaches a crisis,” says Lazalde.

Immigrants of various backgrounds encounter similar stressors. In Louisville, Kentucky, there are increasing numbers of members in immigrant and refugee communities, particularly form Somalia and Myanmar, says Hines-Martin. “They’re newcomers, and they’re dealing with the stressors of changing from one environment to another,” she says. “How they deal with these stressors and whether they want to talk about them is important.”

Members of minority populations may also postpone or avoid seeking care for mental health issues, Hines-Martin says. It’s not so much related to an ethnicity or racial group, but it’s associated with people who hold more traditional values related to their culture, and are less likely to follow mainstream care, she says. “People who are less acculturated into the general population may be less likely to seek help if their culture says it’s not something they should do.”

Financial stress and mental health

The slow economy is also creating a barrier to care for some people, even as it’s identified as a stressor for many. Patients are dealing with the stress of lost jobs, eviction, and foreclosure, says Hines-Martin. She recently completed a study of 127 people in a low-income area and found that poorer residents had almost double the rate of depression as the general public.

“When you look at the economic factors they have to deal with, it makes perfect sense,” Hines-Martin says. The stress of constantly figuring out how to survive can wear down a person, and those factors are associated with depressive systems, she says. “If you have problems in several areas of your life, it can affect your mental health.”

Obviously, financial setbacks don’t always cause mental illness, but they can exacerbate problems in people who are vulnerable, says Knight. “A lot of patients don’t know they’re getting sick until there’s a trigger,” she says. For example, a person may get a call from their mortgage company informing them that they’re being foreclosed on, and they can’t handle their emotions, she says.

Lazalde agrees that whenever there is a loss of financial status within the family, nurses tend to see people with increased levels of depression and anxiety, particularly with wage earners.

“Traditionally, Latino males are the primary breadwinners for families, so the loss of a job and the inability to properly care for the family can really create an additional sense of anxiety, depression, and worry. It’s because they can’t live up to the more traditional roles that they would typically fulfill for the Latino family,” Lazalde says. As a result, there’s an increase of male Latinos coming to seek help for depression and anxiety, she says. The issues affect the entire family. “It creates marital problems. Parents are fighting, and we see the kids coming in with levels of anxiety as well,” Lazalde says.

Residents often have to move out of their homes and move in with relatives and extended family because of financial problems, she says. “Family members have to change schools and meet new friends, and there are not a lot of places they know to go to in terms of seeking resources and finding a shoulder to cry on,” Lazalde says.

Financial problems can also limit access to health care, including treatment for mental health needs. “Many clients are losing medical or health insurance coverage,” says Lazalde. This means fewer people can afford their doctor visits, and they have a more difficult time paying for their prescriptions.

Immigration issues are another stressor in many minority communities. There’s a lot of anxiety and depression when people hear about immigration reform on the news, and they’re worrying about what the outcomes and changes will be, says Lazalde.

“Many of our families are being impacted. A number are split up, with half the family living in the United States and the other half in the native country,” Lazalde says. As a result, wage earners have to support two homes, while they’re responsible for the cost of attorneys and other fees. “They have the stress of keeping the family together.”

Getting involved

One way nurses can help patients deal with their stresses, and improve mental health care overall, is to become active in the communities they serve. This helps build trust between residents and medical professionals, says Hines-Martin.

She says that’s a goal of the Office of Disparities within the University of Louisville’s School of Nursing, where she serves as the center’s Director. The office was started because the school of nursing identified a need to focus on how nursing education, practice, and research could help populations that experience disparities in health, Hines-Martin says.

The Office of Disparities sponsors a variety of programs, including faculty and student activities. Hines-Martin’s most recent project involves working with an entire low-income public housing community. “There are about 700 people in a one-block area,” she says. “It’s a way for us for us to see how economics, food, and trans-generational housing affect how people cope.”

Hines-Martin and her nursing students have found they don’t necessarily see people who are actively engaged in behaviors that are detrimental, such as self-inflicted violence or substance abuse. “But I do see people taking risky behaviors because they don’t care anymore,” Hines-Martin says. These people put themselves in dangerous situations, such as drinking excessively, and the drinking is actually related to depression or a depressed state of mind, she says.

There are many challenges, but the program is yielding results for patients who receive care, says Hines-Martin. She says she’s seen people who received help for psychological conditions and didn’t need to be readmitted to a medical facility after receiving treatment.

There’s also been a decrease in the number of people who have been evicted from their homes because of problems that could be tied to mental illness, such as drug use, says Hines-Martin.

“The community is in partnership with us,” Hines-Martin says. “We’ve learned that people are really invested in having a better understanding of their lives and mental health. It makes it easy to partner with them and invest in them.”

Another way to help build trust is to work with other professionals and community leaders to help educate the population about mental health topics. “Many Latino families aren’t likely to go to a behavioral health specialist initially. Instead, they’re more likely to seek help from clergy or a medical doctor,” Lazalde says. With regards to minority nurses, if they are connected to these influencers, they can help patients find needed behavioral care more quickly, she says.

Identifying red flags

Finding good mental health care is not simply a task reserved for nurses who specialize in behavioral health. Minority nurses in all specialties can help identify red flags that a patient may need a referral for a behavioral health specialist, Lazalde says.

When a nurse in any practice area sees a patient, he or she should look for issues such as a high frequency of usage, she says. The primary care doctor is usually the first person a potential mental health patient will visit, Lazalde says. If a patient has historically only visited the doctor’s office once or twice a year, but now they’re visiting two or three times a month, that’s a red flag, she says. These patients tend to have physical complaints with no apparent cause, so the real issue could be stress or anxiety related, she says.

Minority nurses also need to pay attention to comments patients make during their visits. “They may see a doctor and complain about a headache, or pain in the chest or back, but at the end of the session they bring up family problems,” Lazalde says.

Another red flag could be visits from multiple family members. “If you’re seeing a mom, dad, and siblings for physical problems, all within the space of a month, it could be a sign that there’s some sort of turmoil in the family,” Lazalde says.

And nurses shouldn’t wait until the visit is nearly over before addressing mental health issues. “I think it’s really important for nurses to ask questions early on,” says Lazalde. “Ask how things are going in the family and at home. If the questions are addressed by the medical provider or nurse, it normalizes the situation and allows the family to speak more freely,” she says.

When nurses are rushed for time, sometimes really important pieces of information fall through the cracks. This can be prevented by having a patient fill out a survey at the start of their visit, Lazalde says. She encourages the use of a questionnaire, such as the Generalized Anxiety Disorder 7-item scale (GAD7), to help assess a patient’s mental health needs. “It only takes a few minutes and can be completed in the waiting room, and it doesn’t take away the nurse’s time,” she says.

If it’s determined that a patient should receive specialized care, Lazalde recommends that referrals be “normalized.” For example, when nurses make a referral to a provider who’s an oncologist, it’s normal because the oncologist is simply a member of the health care team, she says.

“So we have to find a way to make the behavioral health provider a member of a team. Instead of making the client feel as if there’s something wrong with them when they receive a referral, they’ll know that they’re just meeting another member of the team,” she says.

Lazalde also has another important piece of advice for minority nurses: don’t give up on your patients. “It often takes more than one referral to be successful. Sometimes we have to refer the patient three, four, and five times,” she says. If nurses approach their roles knowing that it takes multiple referrals before they reach a successful linkage to the other provider, then nurses may be less likely to get discouraged, she says. “We’ll know that the family hears the referral more times and there’s a higher likelihood the patient will go and complete the referral and receive the services they actually need.”

Erasing stereotypes

Perhaps the most disappointing barrier minorities face are the ones caused by the attitudes of medical professionals. Minority nurses can exhibit the same biases about their patients as anyone else, and if they’re not careful, they may start to form negative opinions that could affect their levels of care, says Stevens. “Just because a nurse is a minority doesn’t mean they’re immune to stereotyping,” she says.

Some nurses, particularly those who serve low-income communities, fall into the trap of assuming that some poorer patients check into medical facilities to access prescription drugs, three square meals, or a warm bed, she says. “I’ve heard people say ‘the patients are looking for three hots and a cot,'” Stevens says.

These biases are often reinforced when patients have high rates of repeat visits, she says. But despite the challenges, many minority patients who do receive appropriate care become better and are able to function in society, she says. Minority nurses must provide the best service possible by making a sincere effort to view each patient as deserving of quality medical attention, Stevens says. “Nurses have to fight to eliminate negative stereotypes they see, even if they may have had those same stereotypes themselves,” Stevens says.

Translating policy into practice can be difficult because of how pervasive some biases are, but it can be fought the way any ethnic or cultural stereotype is fought, says Stevens. “It starts with education and awareness.”

Some patients will be difficult, Stevens concedes. But if mental health care is your specialty, you should remain confident that you are helping your patients. Standards of care have to be the same, regardless of who the patient is or where he or she comes from, Stevens says.

Minority nurses are specially suited to help break down barriers and stigmas, build trust among their communities, and help their patients live the best lives possible.

New Co-Pay Assistance Program Helps Fight Blood Cancer Disparities

According to The Leukemia & Lymphoma Society (LLS), nurses need to know that myeloma, a serious and often deadly blood cancer, affects a disproportionate number of African Americans. In fact, a recent article in the LLS newsletter, eNewsline, notes that this life-threatening disease is twice as prevalent among black Americans than white Americans, and no one knows why.

Nobody seems to know the exact cause of myeloma, either. What we do know is that myeloma is a cancer of the plasma cells that starts in the marrow and erodes the bones. It is most common in people age 50 or older and is often referred to as “multiple myeloma” because it usually involves multiple sites in the body at the time of diagnosis. Symptoms can include bone pain, fatigue, anemia and recurrent infections.

Unfortunately, myeloma remains the most intractable blood cancer to cure, with just a 35% relative five-year survival rate in the United States. But the good news, LLS reports, is that doctors have begun making significant progress in treating and, in some cases, managing this difficult disease, thanks to a growing arsenal of new medications and therapies. Drugs such as bortezomib (Velcade®), thalidomide (Thalomid®) and lenalidomide (Revlimid®) have shown promise in achieving remission and improving survival rates for some patients.

Because these medicines are expensive, the Leukemia & Lymphoma Society has launched a new program to help myeloma patients who are having trouble affording their prescriptions. The LLS Co-Pay Assistance Program provides up to $5,000 annually for qualified patients, to help pay for prescription drug co-pays and health insurance premiums. Patients with private insurance and Medicare beneficiaries under Medicare Part B and/or Part D, Medicare Supplementary Health Insurance or Medicare Advantage are eligible if they meet the program’s income requirements. In addition to myeloma, funds are also available for patients with other types of blood cancer.

“Receiving a diagnosis of a blood cancer is overwhelming, and that devastating news can be compounded by an inability to afford the treatments,” says John Walter, president and CEO of LLS. “[Our organization] is trying to do what it can to help alleviate this burden for patients.”

Nurses can learn more about myeloma and other blood cancers at the Leukemia & Lymphoma Society’s Web site, Information about the LLS Co-Pay Assistance Program is available at