A Day in the Life of a Nurse with Dystonia

A Day in the Life of a Nurse with Dystonia

You might ask how a wannabe artist/photographer ended up working nights surrounded by medical equipment and really sick people. I blame it on my father. Of course, he’s not here to defend himself anymore, but take my word for it, there was no way that he was going to let any of his three daughters become starving artists.

So, now I’m a semi-starving nurse. When I started (not all that long ago…in dog years), my salary was $8.65 an hour. I do earn a bit more these days, but Bernie Madoff never solicited me for investment opportunities. What’s rather interesting is that we seem to pay more for interior decorators than we do for the people we depend on to save our lives.

I put aside artistic dreams for the reality of mastering the science and art of critical care nursing. There was this side of me that was fascinated by some of the “big” questions in medical care, such as: “What do you do when all the body’s organs start failing?” and “How do you help those people who are truly suffering without resorting to Jack Kevorkian measures?” Solving analytical problems humanely seemed far more rewarding than photographing magnificent images (although I still find tremendous pleasure stealing away and capturing the world through a viewfinder).

Oddly enough, my professional journey through medicine intersected with a personal medical condition—one that would remain undiagnosed and untreated for five years. Some doctors said that my facial tics (e.g., hemifacial spasms) and strange pains were due to stress or some hysterical “woman’s disease.” Yes, we’re talking this century.

Eventually, I picked the right door—it happened to be at Mount Sinai in New York City—and walked out with a few names and treatments for a disease that affected my head but was not “in my head.”

I started my nursing career with dysphonia, cervical dystonia, and even generalized dystonia. Early treatments might have been much more fun if they were given for cosmetic reasons, but the Botox, Myobloc, and eventually Deep Brain Stimulation (DBS) were prescribed to ease some of the less than glamorous symptoms.

Now, how much trust would you put in a nurse who twitched and twisted? Not much. So, at first, I worked in a soft cervical collar that allowed me to perform sensory tricks that convinced me that my body was aligned and not twitching and twisting.

Well, that didn’t last too long. I thought I was doing a terrific acting job, but as patients began asking me, “What’s wrong with you? Are you in pain? Should I call a doctor, a nurse?” I knew the gig was up. Since retirement at 30 was not exactly an option, I figured out a way to continue doing what I loved despite the pain and the drugs and the brain surgery. Has it been worth it? Yes. Am I an effective nurse? Ask my patients. Do I wish I could wake up and discover this has only been a long, bad dream? You bet. However, until a magic wand appears, you can find me at an intensive care unit doing what I love despite my physical limitations.

How do I manage? I’ve got the system semi-figured out. No one wants to work nights and weekends. I do. It’s not easier or quieter or better paying; it just makes me that much more

What’s it like to work from 7:00 at night to at least 7:30 in the morning? First, you should know that when you start at 7:00 p.m., you have to be at the hospital way before then. And, if you live in New York City (NYC) and happen to have dystonia, like I do, you should probably start out the day before. Find me a day without gridlock in NYC, and I’ll bet it’s either a national disaster or a holiday weekend.

Within the first half hour, we have the changing of the guard. The night team leader makes assignments and reports are exchanged. Let me take you with me as my shift begins.

A Typical Shift

7:30 pm: I have two patients, one who is on a ventilator and will probably be bleeding all night since a drug she has been taking for migraines, Methotrexate, has eliminated more than her headaches—it has eliminated the ability of her blood to clot. Oh, and her mouth is filled with packing material. My other patient weighs about 300 pounds, has pneumonia, and is in the second stage of lung cancer. How in the world am I going to turn her over? I should tell you that despite my height, I weigh slightly more than 100 pounds. I also have wires in my neck (no, you can’t see them) that connect a pacemaker to my brain. These wires are not industrial grade—they can snap. This would not be a good thing for me or my patient. I will deal with this issue later. I have work to do.

7:45 pm: I review the computerized order checklists to make sure what medications are due at 10:00 p.m.

7:50 pm: A family member asks for coffee. This is not a big deal except that walking with a steady, even gait is not my strong suit. With a rather interesting weave, I deliver hot coffee. No spills, no burns, no thanks.

8:30 pm: I stop in to see patient #1. The oral packing is bloody. The bed is bloody. It’s time to call the Ear, Nose, and Throat (ENT) residents. Her platelet count is only seven. Luckily, she is sedated, and her vital signs are holding steady.

8:50 pm: I see patient #2 and hear gurgling sounds. She is not gargling. You do not have to be a medical whiz to know that this is not a good noise. Should you have a medical background, you might recognize the sound as a signal that there’s water in the lungs. I call it a “wet” sound, and since this patient has also refrained from urinating for most of the day, I’m betting that she will be much, much happier if I suction her. I do. She is—and I even hear a faint, “Thank you.” I like this lady (but please, don’t fall on the floor).

9:00 pm: The ENT residents have ordered platelets for patient #1. Does that mean that I get them ASAP? No. That means I now have to call the blood bank and grovel. “I need them in a hurry.” Translation to their reply of “Yeah, yeah” (and in a Jamaican accent it sounds like “Ya-di-dah”): “You’ll get them when I get to you on my list of things-to-do, people-to-see, and dinner-toorder.” Am I happy? No. Is this stressful? Yes. Does this make my straight hair curl and my dystonia symptoms go away? Take a guess.

9:30 pm: I have got to work on my begging and pleading skills. They do not teach this in nursing school. The platelets have yet to be delivered, and no one has even called from the blood bank to say, “Come and get them,” or even more unlikely, “We’re on our way.” So, I call them again. Were they (a) delayed or (b) forgotten? My hunch is that the order was still sitting on the “to-do” pile.

10:00 pm: My 300-pound patient needs to be turned over for a skin assessment. This is not good. Before getting a chance to figure out this physics problem, I add two bags of antibiotics to her IV. As I’m doing this, it occurs to me that I’ve been on duty for a while, but I haven’t had a chance to enter anything about my patients into the computer. I’ll do it now. No, I won’t. Alarm bells go off. My other patient’s blood pressure is dropping. This is when all the years of training and experience pay off. I react automatically.

10:10 pm: I run into the drug room, and if you’ve ever seen someone with dystonia run, it is not going to rate an Olympic-scored 10 for style points. I grab a bag of premixed intravenous Levophed, a medication that’s administered to raise blood pressure—something I surely do not need. My heart is pumping away like I might actually have to break the sound barrier. I dash back to my patient’s room, hook it up, and remain by the bedside for the next half-hour.

10:45 pm: The bells are ringing, and they are all for me. Has anyone done a study on how many things a single person can do at the same time? I need to clone myself (and this time without dystonia, please). Okay, who gets priority: the bedpan seeker or the hungry patient? No contest.

11:00 pm: A knight in shining scrubs appears: Stu. He helps me turn my 300-pound patient. That’s the good news. Why is there always bad news? Suddenly, her oxygen level is doing that downward slide. Please, don’t make her need to be intubated or put on a ventilator. I call the resident on duty and ask for a C X-ray order. I hope she is not retaining fluid. I am retaining stress. This does not bode well for my next activity: writing status reports.

11:20 pm: I start off with a bang, but my hands have a mind of their own. I think “write.” They think “I’m cramping up, honey.” They win. Writing will come later.

11:42 pm: Half a miracle: C X-ray done. Patient’s blood pressure has stabilized. The blood bank remains a “no show,” and I really have to eat something and/or go to the bathroom. Can you get scrubs from NASA? Those spacesuits could work.

11:55 pm: I make an executive decision: I’m going to the blood bank for my patient’s platelets. If we needed them before, we really need them now. This isn’t an order for pizza.

12:10 am: Speaking of pizza, I’m still hungry, but if I don’t sit down for five minutes I may fall over. ICU nurse hits the floor. Patients and coworkers not impressed. Okay, now that I’m sitting, I look up at the clock and realize now would be a good time to start all the chart work. For most nurses, this would be slightly more relaxing than the dramas taking place at the bedside, but with dystonia it’s not quite so easy. In fact, it’s more than just a “pain in the neck,” it causes hand cramping and pain. So, I’ve learned to master the art of two-fingered typing. No speed records will be broken tonight.

12:15 am: The formerly illusive platelets are now finding a new home in patient #1’s bloodstream. However, patient #2 doesn’t look good and her breathing is labored. I think she needs more than suctioning, so an order goes out for a diuretic to get rid of some that water. This time we go for something a bit more formidable: 40 mgs of IV Lasix.

1:10 am: Some of my charting is completed, the platelets have infused, the Lasix seems to be working, but it’s time to turn both patients over. I still haven’t eaten. In the background, I hear a nurse arguing with the resident on-call about an emergency room admission. What’s new? There are not enough nurses on duty tonight. We are so short-staffed that I already know that coming off duty in the early morning is not going to be on my chart. Why? If you’re not in nursing, you might not know the mantra: “NOT documented, NOT done.” Remember my typing skills? This is an obstacle to nurses with dystonia.

1:30 am: I notice bloody urine coming from patient #1. With dystonia, you learn to make accommodations and work around the physical limitations. A secret: I usually rearrange the patient’s room so that everything is in my line of sight.Wondering if her liver is failing, I decide to draw her blood and send her lab work off early. She will need more platelets—she is not clotting well.

1:40 am: A patient is dying at the other end of the unit. He’s only 20 years old. The family is living by the bedside. No matter how many times I’ve seen this drama unfold, it never gets any easier.

2:10 am: Now that all the “labs” (as we call them) and diagnostic tests are completed, patient #2 raises my blood pressure to a nightly high. Her heart has gone into a lethal arrhythmia. Running into the room, I pound her on the chest, hoping beyond hope to get a normal rhythm to return. My neck is killing me. The precordial thump works. An EKG and complete labs are ordered. Uh oh, her oxygen level has dropped again. Does she need even more Lasix?

2:40 am: As I’ve now become to feel quite possessive of patient #1’s platelet activity, I feel like celebrating as her number goes up from seven to 24! Just for good measure, the ENT guys order more platelets and some liver function tests. Her blood pressure has been stable. I finish my computerized charting entries. However, due to the dystonia, my arms hurt from hanging bags of platelets on a barely unreachable ceiling pole. What do shorter nurses do?

3:00 am: The few of us on the unit tonight have been running, for what seems like forever. I do not want to come back as a hamster. Forget ordering take-out dinners, forget about even eating the healthy snacks that some of us have packed. In between ringing bells and critical care nursing, we gulp down chips, soft drinks, and the unhealthiest snacks imaginable. What if a dietitian happened to decide to spend the night here? We’d have to find her a bed.

3:10 am: The 20-year-old patient dies. I feel sad. His parents were at the bedside. Morgue care is ordered.

3:30 am: “My” platelets are ready. I ask the unit clerk to pick them up as well as stop by the pharmacy for some newly ordered antibiotics. This is not a medical mercy mission to a third world country, but you’d never know that. The pharmacist, right here in this very large, very busy, NYC hospital decides to let us know in no uncertain terms (read: venting) that the pharmacy doesn’t have the variety that was ordered. Am I in a new Twilight Zone? What kind of pharmacy is this?

4:00 am: Meanwhile, back on the floor, patient-turning is the next activity. What could be worse than trying to perform this task alone, especially when the bed and its surroundings are soaked with diarrhea? This is a job for the true angels of nursing: housekeeping. I clean the patient, giving her a back rub as well as a respiratory treatment. Before leaving the room, I do a platelet check.

4:30 am: Platelets are done. Will this shift ever end? Whatever could go wrong has already happened, I think. My feet hurt. Note to self and other would be nurses with dystonia: Clogs might as well be three-inch heels. My feet turn inwards, but my clogs do not. A new ER admission arrives on the unit. The few of us left standing all help the patient settle in. Do you think that any of us are contemplating Nurses’ Week every May? No. We just want to sit down and go home.

4:45 am: Some of the routine things that nurses do are no longer easy for me to accomplish without help. Night nurses are responsible for changing IV tubes for new ones. This used to be a nonevent, but now I can’t open the packaging without using scissors or a clamp or a helping hand. It’s frustrating.

5:10 am: A minor miracle: My paperwork is up-to-date, and there are only two more hours left to this awful night.

5:22 am: A colleague is having trouble inserting an IV. I offer to help. Even though I am unable to turn my head the “right way” anymore, I can do IVs by instinct. With dystonia, you learn to make accommodations and work around the physical limitations. A secret: I usually rearrange the patient’s room so that everything is in my line of sight. There’s another thing that I have to constantly be aware of since I had DBS: electromagnetic interference. All those security devices may be great, but they can cause havoc with my pacemaker, which goes to my brain rather than to my heart. This, among other things, is anxiety-producing, so my neurosurgeon has me taking a mild dose of Klonopin to reduce stress. Did I remember to take it this  evening/morning? No. I will pay for it on the bumpy bus ride home.

5:47 am: An alcoholic in withdrawal wanders out of his room. His IVs are in disarray, he has a bloody gown, his EKG monitor is off, and he announces to all of us that he is ready to leave. Perhaps we should call the bellboy for his luggage and have the front desk prepare his bill. He resists our cajoling him back to bed and then hits one of the nurses. We call security and the docs. He isn’t listening to anyone.

6:00 am: Perfect timing. The head nurse is now walking down the hallway as the alcoholic is making his way to the nurse’s station. He is using four-letter words and making comments that will not be printed in The New York Times. Where is security? Are they in cahoots with the blood lab people? I really don’t want to be a punching bag, even if I’m beginning to feel like one. If my muscles get any tighter, I may explode.

6:10 am: Security arrives. Using less than spectacular intervention skills, they tackle the patient. Now what? We decide to ship him to the psych ward…stat!

6:24 am: Check patient #2 and discover more diarrhea. She is producing the type of diarrhea that is irritating to the skin and induced by antibiotics. To make matters worse, this 300-pound lady can’t breathe when she is in a prone position. Getting her out of bed would be impossible. I only weigh 115 lbs. Can it get better than this? Sure. There’s no protective cream available. I call my knight in scrubs, Stu, and we clean her up once again. Now I do the “uh-oh” check. Are my neck wires still intact? Yes. I can exhale.

6:45 am: Go back to the charts and enter final vital signs. Also need to compute things like intake and outtake of fluids. Have you ever had to estimate the amount of diarrhea produced? I must have missed this lecture in nursing school.

7:10 am: Patient #1 needs extra IV potassium. I grab a bag from the drug room and hang it on the IV pole. The day-shift staff begins arriving. I actually have a minute to swallow my dose of my medication, which helps relieve spasms related to dystonia.

7:26 am: Before giving a verbal report to the day shift, I review any last-minute orders to make sure nothing was missed. Nothing missed. It’s going to be a good day!

7:45 am: Shift over. Scalp pain erupts. Neck twisting and turning begins. I just want to sleep.

Intensive care nursing with dystonia is not for the faint of heart, but it is possible—and rewarding!


National Institute of Neurological Disorders and Stroke
Includes a detailed fact sheet on everything you need to know about dystonia

Dystonia Medical Research Foundation
Provides information on current research efforts, treatment and support options, and how to get involved

Dystonia Health Global Monitor
An open forum consolidating the latest news, research information, and education resources for a wide range of movement disorder issues

Deep Brain Stimulation
Explains how DBS therapy works and the risks involved

Policy Engagement: A Call for All Nurses

Policy Engagement: A Call for All Nurses

The need for nurses to become familiar with and engaged in the policy-making process has never been greater. While nurse leaders throughout time have emphasized the need for nurses to become more involved in advocating for patients and the profession, the passage of the Affordable Care Act (ACA) and the release of the Institute of Medicine’s The Future of Nursing report both call for the transformation of health care delivery and underscore opportunities for policy engagement.

The renewed interest in policy engagement for nurses is further evidenced by the proliferation of health policy books and resources for the nursing profession and the increased emphasis on including health policy content in nursing education programs. In fact, the American Association of Colleges of Nursing developed a set of core competencies for integration into nursing education programs, all of which emphasize the need for nurses to develop competencies in this area.

Practice, Research, Policy: Connecting the Dots

I recall the aha moment when I realized the importance of identifying the policy implications of my practice and research. While I had worked in underserved communities for many years, it was not until I started conducting breast cancer disparities research with underserved women that it occurred to me that someone (e.g., survivors or cancer organizations) was advocating for legislation to improve access to cancer screening services. Concurrently, the Breast and Cervical Cancer Mortality Prevention Act of 1990 directed the Centers for Disease Control and Prevention to establish the National Breast and Cervical Cancer Early Detection Program to assist low-income and uninsured women in gaining access to breast and cervical cancer screening and diagnostic services. Expanding on the need for follow-up care, the Breast and Cervical Cancer Prevention and Treatment Act was signed into law in 2000, helping to ensure access to breast cancer treatment services for low-income and uninsured women diagnosed with breast cancer.

As a volunteer for the American Cancer Society and the chair of public policy for the Chicagoland Affiliate of Susan G. Komen for the Cure, I started participating in lobby days advocating for more affordable and accessible cancer prevention and treatment services.

Building on my desire for more engagement, I began lobbying with my professional nursing organizations to advocate for funding to support nursing education and research. Thankfully, I realized the strong connection between practice, research, and policy—and now encourage nurses to do the same.

To Get You Started, Suggested Activities Include the Following:

• Complete a health policy course during your nursing education and your nursing career.

• Become more involved through your professional and specialty organizations.

• Attend state lobby days sponsored by your nursing organizations or home institutions.

• Participate in virtual lobby days.

• Invite congressional leaders to tour your nursing program, professional meetings, or community activities.

• Look for policy implications in presentations, publications, and textbooks.

• Seize the opportunity to identify public policy implications in your everyday practice.

• Incorporate a policy component into your clinical experience (e.g., student interviews with state lawmakers and city council members, and student attendance at public hearings).

• Tap into your institution’s Office of Government Relations.

• Read policy-related journals (e.g., Nursing Outlook or Policy, Politics, and Nursing Practice).

• Become familiar with websites that offer health policy resources (e.g., National League for Nursing, American Nurses Association, and the American Public Health Association).

• Tap into your professional organization’s resources for policy development.

• Share your personal experiences in the policy arena.

Regardless of practice setting, there are public policies and legislative initiatives that influence the scope of nursing practice or the amount of available resources to provide patient care or support nursing education. For example, the recent push toward full scope of nursing practice has already influenced the way advanced practice nurses practice in each state. Members of the nursing community, along with a number of stakeholders, are working with state and federal legislative officials to see what legislative and regulatory actions are needed to ensure that nurses are practicing to the full extent of their preparation. The outcomes of these efforts will have huge implications for the nursing profession and the patients we serve. Akin to this are the provisions outlined in the ACA, many of which have direct implications for nurses. Key provisions focused on primary workforce, patient-centered care, nurse-managed health centers, school-based clinics, quality improvement, and patient safety, to name a few. These provisions present opportunities for nurses to pursue leadership roles that will enable them to help implement aspects of the ACA legislation.

What a great time for nurses to contribute to the policy discourse that is taking place on the local, state, and federal level. From the new grad to the more seasoned professional, nurses are encouraged to become familiar with the policy-making process and identify ways in which they can make a meaningful contribution to improving the quality of patient care and advancing the profession through advocacy and political activism.

Health Policy Resources

American Association of Colleges of Nursing Government Affairs

American Nurses Association Policy & Advocacy

Center on Budget and Policy Priorities

GovTrack (site for tracking legislative bills)

Kaiser Family Foundation

National Conference of State Legislatures

National League for Nursing Advocacy & Public Policy

Office of Legislative Policy and Analysis

Office of Minority Health

Providing Cultural Competency Training for Your Nursing Staff

Providing Cultural Competency Training for Your Nursing Staff

With 40% of the U.S. population currently consisting of either immigrants or first-generation Americans, and with people of color actually outnumbering Caucasians in some parts of the country, it’s imperative that health care facilities provide cultural competence training for their nurses, to ensure that all patients receive quality care. After all, nurses are on the front lines of patient care and are often the first professionals that patients encounter when they enter the health care system. Fortunately, there are a variety of training options your organization can choose from to help your nursing staff develop these essential cross-cultural skills.

What should a cultural competence training program include? It should discuss overall organizational cultural competence as well as focus on the specific population groups and/or health issues that are relevant to the community your facility serves. It also should address the linguistic access needs of patients with limited English proficiency, as outlined in the National Standards on Culturally and Linguistically Appropriate Services (CLAS) in health care, developed by the Office of Minority Health (OMH) in 2000.

“It’s important to [start with] a broad overview,” says Valera Hascup, MSN, RNC, CTN, CCES, director of the Transcultural Nursing Institute in the Department of Nursing at Kean University in Union, N.J. “If the organization primarily serves a specific population, such as Latinos, then it can target that group or subgroups to discuss more specific care.”

According to Josepha Campinha-Bacote, PhD, MAR, APRN, BC, CNS, CTN, FAAN, president and founder of Transcultural C.A.R.E. Associates in Cincinnati, an effective training program should address the three themes of the CLAS standards: organizational, clinical and linguistic competence. Prior to the development of the CLAS guidelines, most cultural competency training focused on organizational issues of cultural diversity. But a well-rounded program also should help clinicians with diagnostic issues, such as identifying health conditions specific to certain ethnic patient populations or conducting skin assessments for patients with skin of color.

Cora Muñoz, PhD, RN, professor of nursing at Capital University in Columbus, Ohio, and co-author of the book Transcultural Communication in Nursing, begins her presentations with a frank discussion about organizational racism. “We have to look at ourselves because we have biases,” she says. “Sometimes we aren’t even aware of them, but they impact the way we provide care.”

Muñoz backs up such statements by citing the Institute of Medicine’s 2003 report Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, which found that bias, prejudice and stereotyping on the part of health care providers may contribute to minority patients receiving lower quality care than Caucasians. “A good training program needs to have such knowledge passed on,” she emphasizes.

Options for providing cultural competence training include using an existing training program that can be adapted to your organization, hiring a consultant to develop a program specifically for the institution, creating your own in-house training program, or a combination of all three. Here’s a look at the pros and cons of each approach.

Using an Existing Program

Why reinvent the wheel when there are so many effective cultural competency training programs that have already been developed by experts? Some of the more widely used programs include those offered by the Cross Cultural Health Care Program, Management Sciences for Health, and the Center for Cross-Cultural Health, to name just a few (see “Resources” sidebar). A new and particularly exciting option is the soon-to-be-released Culturally Competent Nursing Modules (CCNMs), which will be launched in February.

Respected cultural competency models that can be found in the nursing literature include those developed by Andrews and Boyle, Campinha-Bacote, Giger and Davidhizar, Leininger, Purnell and Spector.

Train-the-trainer programs, such as the Cultural Competence Leadership Fellowship sponsored by the Health Research & Educational Trust and others, are considered one of the most effective formats for providing cultural competence education. The main reason is that this type of program enables an organization to reach many individuals.

The primary benefit of using an established program is that it has been proven effective. Additionally, many of these programs provide a consultant as part of the package to explain the program and how to implement it.

Campinha-Bacote recommends sticking with existing programs, such as the aforementioned ones, that have a strong track record of effectiveness. It is also important to spend the necessary time needed to research the various programs to determine which one best fits your organization’s needs. For instance, some programs may emphasize cross-cultural communication skills while others may center on building community partnerships or addressing clinical issues.

Muñoz focuses on racial and ethnic health disparities when she gives presentations on cultural competence and transcultural nursing to health professionals. “I train physicians and nurses, so I look at the impact of cultural competence on direct patient care,” she explains. Muñoz also recommends making sure that the program you use contains information that is sound and evidence-based.

The main disadvantage of using an existing program is that it will have to be modified to fit your organization. But as Muñoz points out, many of these programs were designed to be adapted. Plus, the consultant can work with you to help make the necessary adjustments.

Hiring a Consultant

A cultural competence consultant/trainer offers an objective perspective, something that is difficult to obtain from within your organization. An outside consultant can direct your organization in assessing its needs, design a program that incorporates those needs and help guide its implementation, says Hascup. This is a particularly good option for organizations that lack an in-house individual with expertise in cultural competency issues.

While a national consultant can be very knowledgeable, a local consultant knows the community and the populations your facility serves.

In either case, the trainer should have expertise in both clinical and organizational issues, with credentials from a reputable national or international credentialing body. A history of research and/or publications in the area of cultural competency is important. The individual should demonstrate a history of continuing growth in this field, because it continues to evolve, says Campinha-Bacote. Outstanding interpersonal skills, a genuine passion for the subject and an ethics/values and personality fit with your institution round out the qualifications, she adds.

Because of her academic perspective, Muñoz prefers trainers who are doctorally prepared. When seeking a consultant, she advises, find out the number of training sessions the person has conducted on a local, state and national level. Also, ask if he/she has been involved in developing curriculum on a national level. More importantly, ask if the trainer has firsthand experience working with minority communities. The trainer does not necessarily have to be a racial or ethnic minority, Muñoz explains, but should have extensive experience working with minority populations.

Norma Martinez Rogers, PhD, RN, FAAN, associate professor in the School of Nursing at the University of Texas Health Science Center at San Antonio, suggests asking the consultant for client references that you can contact.

Doing It Yourself

The benefit of developing your own cultural competency training program from scratch is that your training department knows your organization’s culture best and therefore has a good grasp of what approaches will be most effective. The disadvantage is that the individual responsible for this task may lack experience and/or expertise in cross-cultural health issues. That’s why the experts we talked to recommend using a cultural competence consultant to guide and direct the process even when creating an in-house program.
Conducting an organizational cultural assessment is a critical first step. As Campinha-Bacote puts it, “Some organizations don’t know what they don’t know.”

Doing an assessment helps determine the strengths and weaknesses of staff in regard to cultural competency, and this information can be used to help design an effective training program, says Hascup. Other experts recommend conducting an assessment both before and after implementing the formal training, to determine how much the nurses have learned. It can also serve as a benchmark down the line.

Additionally, Martinez Rogers, who is president-elect of the National Association of Hispanic Nurses, recommends conducting periodic evaluations and an assessment as part of the orientation process for nursing staff. She also emphasizes the importance of including patients in the assessment process. Several good cultural assessment tools are readily available, including some created for or used by the training programs on our resources list.

Making It Work

No matter which training option a health care facility chooses, experts agree that buy-in from administration is essential for the program to be effective. “The top players need to be committed to the concept of cultural competency, because it is their attitude that will filter down to the staff,” says Hascup.

A hospital with committed leaders armed with a cultural assessment and an arsenal of proven-successful training tools is well on its way to being able to provide effective cultural competency training for its nursing staff.

And what is the final word of advice? “If you do not have a program, start one. If you have one, enhance it, because cultural issues are alive and well and constantly changing,” says Campinha-Bacote, who notes that she has tweaked her training model four times in the 15 years since she created it.

She points to new developments that have emerged in recent years, such as a greater emphasis on linguistic issues because of the CLAS standards and changes in the way hospitals use interpreter services. Therefore, a training program developed in the 1990s may be inadequate to address today’s cultural competency issues. “Most importantly,” Campinha-Bacote concludes, “cultural competence is a journey, not a destination.”

Cultural Competence from the Patient’s Perspective

Cultural Competence from the Patient’s Perspective

The term cultural competence is finally starting to become common parlance in the nursing profession. Although various definitions of cultural competence exist, when minority health experts talk about “culturally sensitive care” most nurses pretty much understand what this means. But how do patients–especially patients of color–define cultural competence? What exactly does culturally competent health care mean to them, and how do they want clinicians to provide it?

To answer these questions, a research team funded in part by the Agency for Healthcare Research and Quality (AHRQ) conducted a series of 19 community focus groups with racially and ethnically diverse health care consumers. The groups included 61 black participants, 45 Latinos and 55 non-Latino whites. As reported in the Healthcare Intelligence Network’s online newsletter Healthcare Daily Data Byte, some of the study’s key findings were:

• Definitions of culture common to all three ethnic groups include value systems (25% of focus group comments), customs (17%), self-identified ethnicity (15%), nationality (11%) and–surprisingly–stereotypes (4%).

• All three groups cited the following as cultural factors that either positively or negatively influenced the quality of health care encounters: clinicians’ sensitivity to complementary/alternative medicine (17%), health insurance-based discrimination (12%), discrimination based on social class (9%), ethnic concordance of clinician and patient (8%) and age-based discrimination (4%).

• Differences between the minority and the white participants’ responses emerged in several areas. Only the black and Latino participants cited the following as important cultural factors: ethnicity-based discrimination (11%), clinicians’ acceptance of the role of spirituality (2%) and of family (2%). Additional factors specific to Latino respondents were language issues (21%) and immigration status (5%).

Goal Setting: Top five ways to make sure you are accomplishing your goals

Goal Setting: Top five ways to make sure you are accomplishing your goals

The beginning of a new year is a common time to reflect on the previous year, and deciding what goals you would like to accomplish in the next 365 days.  This is not a time to be shy about the things that you want in your life.  Be bold, intentional, and brave when setting goals for yourself.  The sky is not the limit; it is simply the view.  Although we tend to start out highly motivated and dedicated to the goals that we have set, we have got be honest with ourselves and realize that often that ambition can fade, and nothing gets accomplished!  I want to share with you five methods I utilize to keep myself grounded, motivated, and a realizer of my goals.

Find Yourself a GOAL MATE

What is a GOAL MATE?  A goal mate is someone that you have a great connection with that supports, motivates, encourages, and enables you to manifest all of your wildest dreams.  It does not matter how far-fetched they may seem, your GOAL MATE will not only hold you accountable but encourage you to jump in and get dirty neck first.  Whether you succeed or fail at accomplishing a goal they are there to pick you up if you break your neck for real (just kidding), brush you off, and send you on your awesomely merry way to attempt your next goal.  Keep in mind, that in order to be a good GOAL MATE, you need to reciprocate the same energy and tenacity that your partner(s) give to you.  It’s important to keep each other focused, interested, and motivated.

Make Clear, Objective, and Achievable goals

Be clear and intentional about the goals you are setting.  It is also important to be specific.  Think about where you want to be with your finances, health, career, and love life.  Self-love included. Be realistic with your timeline and remember that there are only 12 months in a year, but that is a valuable time that can be leveraged to generate a better you.

Make a Vision Board or Host a Vision Board Party

This is an annual tradition of mine.  Each year I invite my GOAL MATES, friends, neighbors, co-workers over to craft vision boards.  This is inexpensive and so much fun.  All you need is magazines, scissors, glue, posters, your imaginations, and perhaps some wine!

Set Mall Quarterly Milestones

Hold yourself accountable.  Think about where you want your progress to be after 3,6, and 9 months.  I like to review my goals monthly.  This keeps it relevant in my mind.  You should review your goals quarterly at a minimum.  Think about what is working for you, and what you can switch up.

Look at It

If you do not see your goals periodically, or place your vision board somewhere that you can see it every day. I have my goals on my vision board, iPhone, iPad, and posted in my locker at work.  Don’t forget the plans you have made for yourself.  Utilize these tools, go forth, and prosper!

Jazmin Nicole is a military officer, obstetrics nurse, advisory board member of Black Nurses Rock Inc., and the founder/CEO of Jazmin Nicole & Co.


For more posts/blogs like this follow me on twitter (@jazminweb), Instagram (@therealjazminnicole_, and Facebook (Jazmin Nicole and Co.)


Careers in Nephrology Nursing

Careers in Nephrology Nursing

Charlotte Thomas-Hawkins, PhD, RN, CNN, assistant professor at Rutgers, The State University of Jersey, College of Nursing, and winner of the American Nephrology Nurses’ Association (ANNA)’s 2005 Nurse Researcher of the Year award.

According to the dictionary, nephrology is “a branch of medicine concerned with the kidneys.” To nurses who work within this specialty, however, it is a great deal more.


“Nephrology nursing offers a lot of career choices,” says Adrian Priester-Coary, MSN, RN, CNN, a nurse educator at the University of Chicago Hospitals. “A nephrology nurse in a hospital can go into an acute/critical care, home training, in-center or clinic setting. You can choose many different paths as you grow in this field.”

Those career paths may include such options as:


  • direct care of patients with end-stage renal disease (ESRD) who receive dialysis or who undergo renal transplants;
  • education of patients, communities or health professionals about risk factors that can lead to chronic kidney disease (CKD);
  • research into the effectiveness of treatment modalities and the impact of nursing practice on patient outcomes;
  • advocacy, such as working with government agencies to develop health policies that will improve the care of kidney disease patients.

No matter what their area of expertise may be, nephrology nurses in all of these career settings are working toward the same goal: to help patients who have or are at risk for kidney disease lead the healthiest lives possible.

According to recent statistics, 10 to 20 million Americans have kidney disease, although many are unaware of their condition. The primary risk factors include diabetes (the leading cause of ESRD), hypertension and a family history of kidney problems. People who have at least one of these risk factors are almost five times more likely to develop kidney disease than those who have none.

With both diabetes and hypertension on the rise, especially among African Americans, Hispanics, American Indians/Alaska Natives and Native Hawaiians/Pacific Islanders, it is small wonder that the risk for kidney disease is also much higher in these populations. African Americans, for example, are four times more likely to develop ESRD than Caucasians.

These disparities mean that nurses of color have the opportunity to make significant contributions to the care, education and overall well-being of minority patients with kidney disease. “[Being a minority nurse] gives you insight into the patient’s culture, some of the things that have happened in their lives and why they may have postponed their treatment,” explains Janie Martinez, BSN, RN, CCRN, CNN, a nephrology nurse clinician at Alamo Kidney Health at Bexar County Dialysis Unit in San Antonio. “For a lot of the men, it’s the macho instinct. For women, it’s the nurturing belief that their family comes first, so the little money they have is spent on the family and not on their medication.”

Charlotte Thomas-Hawkins, PhD, RN, CNN, assistant professor at Rutgers, The State University of New Jersey, College of Nursing, and winner of the American Nephrology Nurses’ Association (ANNA)’s 2005 Nurse Researcher of the Year award, agrees that having first-hand knowledge of a minority kidney patient’s culture can be helpful. “Because [minority nurses] have many life experiences similar to those of our patients, we share an understanding,” she says. “When patients respond to health care professionals with cultural cues—for example, particular facial expressions or hand movements that may be unique to a certain culture—minority nurses pick up on those cues more easily because we understand them. And we can help nonminority nurses understand the background, experiences and responses to illness that are grounded in minority patients’ cultures.”

Caring Across the Continuum

Nephrology nursing encompasses total patient care, because the kidneys affect every other major system in the body—cardiovascular, pulmonary, gastrointestinal, etc. Comorbidities, especially diabetes and high blood pressure, are usually causative factors in CKD and must be addressed concurrently. And because treatment for kidney disease is costly, patients also face numerous psychosocial and financial issues.

“Many of [our ESRD patients] are indigent. Most are already on Medicare, so getting medication becomes a problem,” says Martinez. “For young people who now have to have dialysis three times a week, it changes their lifestyle completely.” Even patients who are not on dialysis must face many lifestyle changes, such as alterations to diet and exercise and possible side effects from medications.

Nephrology nurses may work with patients at any point along the continuum of care: people who have one or more risk factors but have not yet been diagnosed with CKD, patients who have been diagnosed with abnormal kidney function but do not yet require dialysis, ESRD patients on dialysis and kidney transplant patients.

Although renal failure cannot be reversed, early diagnosis and intervention can slow the disease’s progression. According to Gwen Bryant, BSN, RN, CNN, facility administrator for two DaVita dialysis centers in Detroit, “Seventy percent of renal failure is related to either diabetes or hypertension. So if [nurses] can get out and talk to the population about risk factors, get people to look at the warning signs and know what they are, they can start intervention and slow down the disease.”

Dialysis treatment is so time-consuming that for many patients it can feel like a part-time job: They must come in three days a week for three to four hours at a time. To promote continuity of care, charge nurses work the same days (Monday/Wednesday/Friday or Tuesday/Thursday/Saturday) and the same shifts (sometimes 10 to 12 hours) so patients always have the same caregiver. Working alongside specially trained technicians who actually operate the dialysis machines, nurses keep track of patients’ responses to treatment, monitor their overall health and provide education.

“You spend time with your patient and you learn from each other,” says Bryant. “You can share information that’s going to make their lives—and their families’ lives—better.”

Dialysis centers and hospital dialysis units aren’t the only practice settings where nephrology nurses help ease the burden on ESRD patients and families. Many dialysis patients also require home health care and personal care because they’re too weak to perform some of their common daily activities, plan their diets or accurately monitor their medications. Plus, in today’s increasingly cost-conscious health care industry, in-home dialysis is a growing trend.

“Unfortunately, many of these patients don’t have family support,” says Wanda Chukwu, RN, MA, owner of Assertive Health Services, a home care agency in Detroit that specializes in dialysis patients. “One of my goals is to help promote their needed lifestyle [regimen] when they’re home. If you can increase a patient’s compliance, you’re going to decrease hospitalization.” Home care nurses are also in an excellent position to educate patients and families about risk factors and preventive measures before kidney disease enters the picture.

Moving to Management

Some clinical nephrology nurses find that they have an interest in and aptitude for working with the bigger picture. “I knew I wanted to be a manager,” recalls Sue Jones, RN, CNN, regional director for Gambro Healthcare in Philadelphia. “But I didn’t want to just lead or just manage; I wanted to educate my staff and share knowledge.”

Jones oversees seven dialysis centers with an average daily patient census of 600. Her responsibilities include touring the clinics and communicating with clinical directors about patient problems, adequate staffing and survey readiness. She also makes a point of greeting patients and observing the care being delivered.

Bryant is another manager who shares this interest in maintaining contact with the patients her facility serves. “Because I’m a nurse and I love hands-on work, I come in and make rounds at least twice a day to see all my patients,” she says.

In addition to reviewing clinical outcomes, profit/loss statements and budgetary targets, she also participates in community and corporate education programs, visiting worksites and other community locations to talk to people about kidney disease prevention. For example, in DaVita’s Kidney Education and You (KEY) program, nurses hold seminars, talk to community members about renal failure and risk factors, take blood pressure readings and give out information from the National Kidney Foundation (NKF) and the National Kidney Disease Education Program (NKDEP).

Educating the Masses—and the Nurses

Nephrology nurses agree that this type of educational outreach is critical to stemming the kidney disease epidemic. Many nurses get involved in outreach efforts because they have firsthand experience of how devastating the disease can be.

“I have friends with renal disease who are currently on dialysis and one who is awaiting a kidney transplant,” explains Diana Brown-Brumfield, MSN, RN, CNS, a clinical nurse specialist for surgical services at the Cleveland Clinic Foundation. “I became involved with NKDEP two years ago as a pilot project to educate the Cleveland community about renal disease and how it disproportionately affects minorities. I started doing some education in our local churches about the disease and the effect it has on the minority population. Although I’m not a nephrology nurse, working in surgery affords me the opportunity to get the word out on prevention, because this is a preventable disease if we really focus on it.”

Early education is a goal for many organizations involved in kidney disease prevention, including NKF, the National Institutes of Health (NIH) and state and local support groups for chronic diseases such as diabetes. For example, the goal of NKDEP, an initiative of the NIH’s National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK), is to increase awareness of kidney disease, its risk factors and the importance of early diagnosis and treatment. The program offers extensive informational resources for both patients and health professionals, including “You Have the Power to Prevent Kidney Disease,” a national public awareness campaign targeted to African Americans.

Indeed, patients and the public are not the only ones who need information about kidney disease. Nurses who can provide specialized nephrology education to other health care professionals are needed in hospitals, dialysis centers, universities and colleges.

Priester-Coary works as the nurse educator for three chronic units, one acute unit and one home training unit. “My responsibilities are usually project-driven and based on findings from the CQI [continuous quality improvement] group or other hospital initiatives,” she says. “I review the literature, update policies and procedures, develop the necessary teaching tools and then go on the road to educate the staff.”

Shaping the Future

The sharing of nephrology knowledge is not restricted to the education arena. By making their expertise available to government agencies and other influential health organizations, minority nurses have excellent opportunities to help shape the development of policies, best practices, treatments and products that can improve care for renal patients of color.

For example, NKF has a Council of Nephrology Nurses and Technicians (CNNT) that helps develop health policies that impact professional practice and the delivery of patient care. The council also recommends speakers for NKF’s annual clinical meeting and helps moderate sessions. In addition, council members participate in national activities such as the Kidney Early Evaluation Program (KEEP), in which volunteers provide free screening for CKD in community settings such as churches and in dialysis centers.

Participation in professional associations such as ANNA is another important way for minority nurses to make sure their voices are heard. “One of our goals is to actively recruit minority nurses as elected leaders, committee chairs and members,” says Suzann VanBuskirk, BSN, RN, CNN, president of ANNA.

Association involvement can offer various ways for nephrology nurses to share their “real world” experience with health care policymakers. For example, “ESRD networks are contracted with the federal Centers for Medicare & Medicaid Services (CMS),” VanBuskirk explains. “The individuals who work for those networks—many of whom are nurses with previous experience in dialysis and transplantation—work as quality managers and data analysts. They are involved in quality initiatives and educational offerings and they have wonderful opportunities to work as contracted government employees to make a difference in the outcomes and quality of care that is delivered.”

Nurses’ front-line experience and knowledge is also in demand by manufacturers of dialysis equipment and related products, as well as pharmaceutical companies. These firms hire nephrology nurses as quality/outcomes consultants, clinical educators and/or marketing representatives.

Doing the Research

With the emphasis on evidence-based practice throughout the health care field, the development of policies and best practices depends on the results of careful research. And who better to conduct research on nephrology nursing best practices than nurse scientists?

“As an advanced practice nurse in the dialysis unit, I became interested in what nurses did and how they affect patient outcomes,” remembers Thomas-Hawkins. “I realized I needed to get into a doctoral program to learn how to measure patient outcomes and try to figure out, in a measurable way, what nurses can do to have a positive impact.”

The term measurement may cause some confusion about how researchers actually work. Most nurses in clinical practice are familiar with quality improvement projects in which they collect, analyze and present data on outcomes such as patient falls and nosocomial infections. These projects are good starting points because they help staff understand a problem and try to correct it. Researchers, however, apply far more precise tools and scientific methods when measuring rates of comorbidities, effects of treatment modalities and so forth. This ensures that data gathered from different organizations and demographic areas are comparable; if they are not comparable, they are not useful.

“The importance of having more minority nurse researchers [in nephrology] is probably our interest in addressing issues that are important to the minority community,” says Thomas-Hawkins. “We’re able to tap into issues that are important to our respective [ethnic] groups because these are problems we or our families have actually experienced.”

Diversifying the Ranks

Although no demographic information about the percentage of racial and ethnic minority nurses in the nephrology nursing workforce is currently available, nurses in the field seem to agree that minority representation is low. The numbers obviously vary by geographic region and setting (urban, suburban, rural), but the fact is that many patients of color aren’t receiving care from nurses they feel truly understand them and their needs.

How can you find out if a career in nephrology nursing is right for you? Talking to nurses who are already working in the field may help. And it’s worth noting that nephrology nurses tend to remain in the specialty for a long time.

“I’ve been in nephrology for almost 20 years,” says Janie Martinez. “To me, it’s not a profession, it’s a vocation. There are a lot of rewards when you see younger people and they get to go back into the world.”

Gwen Bryant agrees that the patients make the difference. “Chronic renal failure affects every aspect of a patient’s life—their diet, their family life, their work. If you ask me why I’ve been in nephrology for 25 years plus, I’d say it’s because these patients are the most courageous in the world.”

Learning What You Need to Know

Undergraduate nursing curricula are notoriously lax about including more than a passing mention of nephrology, and even the offerings at the graduate level are meager. Therefore, nephrology nursing education often occurs on the job, whether in an acute care setting or a dialysis clinic/unit.

Most training programs run eight to ten weeks and include classes in anatomy, physiology, the disease process and the principles of hemodialysis, peritoneal dialysis and transplantation. Nurses who will be working with dialysis patients are partnered with a nephrology technician to learn how the artificial kidney works and the impact it has on patients while they are dialyzing. The nephrology nurse-in-training also works with a mentor to learn about the pharmaceuticals used in the specific setting (medications differ between outpatient and acute care settings). If the facility handles specific patient populations, such as pediatrics, nurses also must develop age-specific competencies.

Certification for qualified registered nurses can be obtained through the Nephrology Nursing Certification Commission, which offers two options. The certified nephrology nurse (CNN) examination is designed to test proficiency in nephrology nursing practice. The certified dialysis nurse (CDN) exam is a competency-level test for nephrology nurses working in a dialysis setting. More information is available at the commission’s Web site, www.nncc-exam.org.

Most employers looking to hire nephrology nurses want RNs with at least one year of work experience rather than recent graduates. A background in medical-surgical and/or critical care nursing is highly recommended. “In med-surg, you learn the general basics of patient care and disease processes,” explains Sue Jones, RN, CNN, of Gambro Healthcare. “Then with critical care you go on to the sicker patients and see the impact of what a chronic disease can do. It really helps the nurse to see that continuum from diagnosis of another chronic disease like diabetes to a patient with the need to start on dialysis.”

The various career paths open to nephrology nurses have their own requirements for education, experience and skills. For example, nurses wishing to make the move into management of a dialysis center or unit will require a working knowledge of how that facility operates, usually by working as a charge nurse first. Managers also need excellent communication skills (both oral and written), computer savvy, organizational and time management skills and the ability to deal with conflict among both patients and staff. An understanding of financials, such as budgets and profit/loss statements, is strongly recommended; this can be acquired on the job or through an advanced degree. In addition, managers must be familiar with federal and state regulations to ensure their facilities are in compliance.

If you are interested in starting your own home dialysis, renal care or home health care business, an advanced degree in a related subject is probably helpful. “I’m working on a PhD in organizational management,” says Wanda Chukwu, RN, MA, owner of Assertive Health Services. “I think it helps immensely with the kind of services I offer.”

Nurse researchers require doctoral degrees to learn the rigorous scientific methodologies necessary to conduct accurate studies. “To do a research project, you need to make sure that the instruments you use are valid and reliable and that you’re getting the information you need,” explains researcher Charlotte Thomas-Hawkins, PhD, RN, CNN, assistant professor at Rutgers, The State University of New Jersey. “Certainly nurses with master’s degrees can also conduct research, but they really need to do it with a doctorally prepared researcher. Because there are so few doctorally prepared nurses in any specialty setting, the model for research is for those researchers to do collaborative projects with nurses in clinical practice.”

Nurses interested in becoming nephrology educators may or may not need an advanced degree, depending on the setting. But certification is always a plus, as is a mastery of public speaking. “If you have the desire to learn, plus motivation, patience and compassion for your students, you can teach,” asserts Adrian Priester-Coary, MSN, RN, CNN, a nurse educator at the University of Chicago Hospitals. Nurses who wish to focus on patient education, either at a health care facility or in the community, need to understand the fundamentals of teaching and learning. This knowledge and expertise can be gained as part of degree preparation and nursing practice. To teach at a college or university, however, a master’s or doctoral degree is usually the minimum requirement.