Using evidence-based practice (EBP) to give patients the best possible care is one of the hottest topics in nursing today. Yet evidence-based nursing is not a new model of care. In fact, says Linda Burnes Bolton, DrPH, RN, FAAN, vice president and chief nursing officer at Cedars-Sinai Medical Center in Los Angeles, it is simply another way of looking at the traditional theme of nurses living up to their sacred trust with society.
“The sacred trust is based on the belief that nursing professionals will always act in the best interest of the patient,” Burnes Bolton explains. “We cannot do that without knowing what would best benefit and assist the patient. Part of that trust and commitment to patients is to give the very best care for each individual. We cannot be lulled into a false sense [of security] that it is OK to do something just because ‘this is the way we have always done it.'”
These days, it’s hard to open up a nursing magazine and not see an article about evidence-based practice. But because it’s a complex concept, many nurses still don’t completely understand what EBP is all about.
One of the best explanations of what EBP is and is not comes from Bernadette Melnyk, PhD, RN, PNP/NPP, FAAN, FNAP, dean of Arizona State University (ASU) College of Nursing & Healthcare Innovation in Phoenix. Three years ago, Melnyk founded the nursing school’s Center for the Advancement of Evidence-Based Practice (CAEP), one of a handful of university-based centers across the country dedicated to this paradigm of care.
Speaking at the 2006 National Black Nurses Association annual conference, Melnyk noted that “improving health care through EBP is a problem-solving approach that integrates the best research data with the nurse’s clinical expertise and the patient’s individual needs and preferences. It is not just research utilization or translating research into practice. It’s the process of synthesizing the best evidence across multiple studies to come up with what’s best for [that particular patient in that particular situation].”
With its emphasis on developing interventions based on sound clinical evidence and proven best practices, evidence-based practice is an ideal tool for nurses to use in their efforts to eliminate racial and ethnic health disparities. Yet using EBP in the specific context of improving minority health outcomes poses unique challenges—from where to find research data that is inclusive of minority populations to understanding how culture and language may influence a patient’s preferences.
Defining EBP: A Closer Look
David Sackett, MD, a Canadian physician, is considered the father of evidence-based practice, according to Cheryl Fisher, MSN, RN, program manager for professional practice development of nursing and patient care services at the National Institutes of Health (NIH) Clinical Center. Located in Bethesda, Md., the center is the nation’s largest hospital devoted entirely to clinical research.
Fisher has adopted Sackett’s definition of EBP. “He states that evidence-based practice is ‘the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients. . .[by] integrating individual clinical expertise with the best available external clinical evidence from systematic research.’ In our hospital setting, we also take into consideration the patient’s preference since our care is patient-centered.”
Searching the literature to find the best evidence doesn’t have to be an overwhelming or time-consuming process. To target their search and quickly find the relevant research, says Melnyk, nurses should formulate a clinical question using the PICO framework:
P = Patient, Population, Problem
I = Intervention
C = Comparison
O = Outcome
“When you phrase questions in that way [with these criteria in mind], you will not spend days and days searching for the evidence to answer your question,” she says. “You will know how to put key words from PICO into a database search and rebuild your answer in a short period of time.”
Once you have come up with the key words to focus your inquiry, the next steps in the EBP process are to:
1. Search for the best research studies relating to your question;
2. Do a rapid critical appraisal of the research findings;
3. Integrate the evidence with your clinical expertise as well as the patient’s circumstances and preferences; and
4. Evaluate the outcome in the context of your own practice setting and, if necessary, make changes to current practices to give the patient better care.
A rapid critical appraisal helps clinicians establish the validity, reliability and patient applicability of a study or group of studies and find the most important nuggets of evidence to use in their practice. “And then you have to make the decision as to whether or not you are going make a practice change and integrate Step 4,” Melnyk says.
For Adelita G. Cantu, PhD, RN, a clinical instructor in the Department of Family Nursing Care at the University of Texas Health Science Center at San Antonio School of Nursing and a researcher who focuses on Hispanic health disparities, EBP means looking at what clinicians are doing on a daily basis, looking at patient care and knowing it is based on research. “You need to know there is some evidence that says this is the way you should do it and why you are doing it,” she emphasizes. “[As nurses], we need to explain to the patient why something is being done and that there is a reason it is being done a particular way. That should translate into better patient compliance.”
Sandra Millon Underwood, PhD, RN, FAAN, American Cancer Society Oncology Nursing Professor at the University of Wisconsin-Milwaukee College of Nursing, is a researcher who has devoted much of her work to cancer prevention and early detection among medically underserved minority populations. She cautions against taking too narrow a view of what EBP can accomplish. All too often, Underwood says, when clinicians think about evidence-based practice they focus solely on using the data from research to guide decisions.
“I think in many ways that is short-sighted, because most evidence-based practice models expand that vision,” she explains. “The evidence and research is critical but so are the other domains of EBP in making decisions for individuals, for communities and for population groups at risk.”
Underwood believes there are six domains that come into play when using EBP: scientific evidence, clinical experiences, the resources that are available within the academic arena or clinical environment, patient preferences, patient condition and patient characteristics.
The Importance of Inclusive Research
One of the biggest challenges nurses face in using evidence-based practice to address minority health disparities is finding enough evidence that is relevant to the needs of minority patients. There are many areas of medical research where people of color are underrepresented in clinical studies, or not included at all.
Burnes Bolton stresses the need to use research that is based on minorities to treat these populations. She points to skin cancer as an example. Skin assessments for people with dark skin will be vastly different than those done on Caucasians. “Generally, you look for changes in a [mole or spot on the body] where the skin is a different color,” Burnes Bolton explains. “With African Americans, they may not be able to see that.”
To share resources in support of evidence-based projects for reducing Native American health disparities, nursing leaders from the National Institutes of Health, the Indian Health Service and the National Alaska Native American Indian Nurses Association teamed up to create a collaborative online community
The end result can be deadly. According to the American Academy of Dermatology, failure to recognize skin cancer in people of color can lead to late diagnosis and lower long-term survival rates—only 58.8% compared to 84.8% for Caucasians. Furthermore, many people are under the misconception that melanoma is not a threat for individuals with darker skin. And studies of African Americans who are diagnosed with melanoma highlight another relatively unknown fact: In African Americans the condition most often develops on areas of the body that are not exposed to the sun.
“You can’t only use skin texture as a factor,” Burnes Bolton says. “You have to ask patients questions in a culturally appropriate manner.”
Another example, she continues, is the effects medications may have on different populations. “Many of the research studies [of medications] have been conducted [only] on white males,” Burnes Bolton points out. “It is very important when someone is prescribing a medication to know if that drug was tested on diverse populations. When reviewing the research, you must make sure you know what is the best evidence [about the drug’s effect on different populations].”
What Underwood finds disheartening is that even when a research study does include racially diverse participants, often the results are not analyzed by subgroups. “Inclusion [of minorities in a study] is not sufficient if one is not looking carefully at the outcomes of the research to determine whether or not there are similarities or differences for minorities, or nuances that need to be addressed in nursing practice,” she says.
Another factor that must be taken into account is the diversity that exists within a particular racial or ethnic group, Cantu advises. She says it’s critical for nurses to analyze the data and make sure there was a good research design in place. “Hispanics living on the U.S./Mexican border are going to be different than those living in an upscale suburban setting. You have to ask yourself: Is the population [in the study] similar to the one you treat? Where do they live? Do they have a high economic status? Do they have a low economic status? Make sure you are looking at evidence that pertains to your population.”
Where to Find Data
There are a number of ways to gather research data. Searching Internet databases is one of the fastest. Some of the best evidence-based health care databases include:
• The Cochrane Collaboration
• MEDLINE COS
• Cinahl Information Systems
• PubMed
• Agency for Healthcare Research and Quality (AHRQ)
There are also some databases and EBP online communities that focus specifically on minority health and health disparities, such as:
• American Public Health Association (APHA) Health Disparities Community Solutions Database
• National Minority Quality Forum
• Health Disparities Collaboratives
The Office of Minority Health Resource Center (OMHRC), the nation’s largest repository of information on minority health issues, provides free customized database searches on request. This service can be obtained by calling (800) 444-6472 or emailing the center at [email protected].
Another valuable source of data and best practices is other nurses—both researchers and clinicians. Burnes Bolton suggests tapping into the resources of professional nursing organizations, such as the American Academy of Nursing, for information. AAN initiatives such as Raise the Voice, which showcases the work of nurse “Edge Runners” who have created successful interventions and care models, may offer insights, she says.
Cantu suggests tapping into national and regional minority nursing associations. In addition, she says, many hospitals have clinical nurse specialists and nurse educators on their units. “They are a resource to go to. Schools of nursing are another place to use as an information resource. Maybe you can partner with them. Using these community resources is very appropriate and saves time for the bedside nurse.”
Sharing EBP Resources Online
Fisher has been working with the National Alaska Native American Indian Nurses Association (NANAINA), the Indian Health Service (IHS) and the NIH to create an online virtual community that helps promote the use of EBP to advance the agenda for reducing American Indian/Alaska Native health disparities. The online community links NANAINA faculty mentors with nurse clinicians at remote IHS sites and research staff from the NIH Clinical Center to collaborate and share resources in support of evidence-based projects.
According to Fisher, the virtual community grew out of a series of face-to-face meetings held in 2006-07 to establish relationships between the three collaborating organizations and to define evidence-based projects the nurses would work on. She says the Web-based community was launched last fall to provide technical support for the project’s mission and to enable the mentors and mentees to collaborate in an online environment.
“The virtual community provides a way to communicate and collaborate with the Indian Health Service nurses to promote evidence-based practice in their work settings,” Fisher explains. “The goal of the community was to provide a way for us to stay in touch following face-to-face meetings in order to continue our work.”
The online community includes such features as a discussion board, a resource center, a links section to help members quickly find Web-based information that will support their work, and opportunities for live chat or real-time meetings between two or more members.
Although the community is less than a year old, it has already accomplished a great deal, Fisher reports. “We were able to develop a list of members with contact information, share resources and develop posters for national presentation utilizing the virtual community—which would have otherwise been very difficult, since we [are all physically located in different parts] of the country. The virtual community has provided us with a means for staying connected.”
Filling Evidence Gaps
Another challenge that can arise when using EBP as a model of nursing care is: What do you do if the specific research data you need to answer your clinical question just isn’t out there—or at least not yet? Finding enough minority-inclusive research is just one part of the problem. Another obstacle, says Melnyk, is that it currently takes an average of 17 years for the findings of a study to become a valid, accepted part of the nursing literature.
“That [time lag] is a huge issue,” she emphasizes. “There are many areas in nursing where we do not yet have good evidence-based interventions to improve health outcomes. There are a lot of gaps in the evidence. That is why we need outstanding nurse researchers to generate evidence where we do not have it. Then we need outstanding clinicians to take the evidence that is generated and [apply evidence-based nursing skills] to translate it into clinical practice.”
One strategy for filling evidence gaps, Melnyk adds, is for nurses to generate practice-based evidence in their own clinical site by using outcome management. “Collect data through your chart records, do a certain practice and then look at outcomes and look at the data you have available,” she says. “The message I want to get out is that you do not have to be a rigorous researcher to be able to do outcome management and generate some evidence to guide your own practice in your [clinical] setting.”
This do-it-yourself approach to evidence generation can also be extremely helpful for busy nurses who might otherwise not have time to sit down at a computer and search for research data. “I think that many nurses, particularly bedside nurses, are so involved in patient care that they do not have the time to review on their own or attend meetings, workshops or seminars where evidence-based practice is discussed,” says Cantu.
Using EBP Effectively
Ellen Fineout-Overholt, PhD, RN, FNAP, director of the Center for the Advancement of Evidence-Based Practice at ASU College of Nursing, believes that having open communication with patients and colleagues plays a key role in providing evidence-based care.
“If I am taking care of a patient of color and do not know anything about that [person’s] culture, it is incumbent upon me to find out, to ask some questions,” she says. “Then it is incumbent on the patient to tell me, to talk to me. We need to have a dialogue so we can come to understand and know one another better to get the best outcome. Nurses need to [look at patients’ cultural beliefs and values] to see what they want and what they may need [in terms of care].”
That isn’t to say every outcome will be positive. Sometimes patients may not be willing to make a change in their behavior, especially if it goes against their belief system. “Then you need to tell them, ‘This is what the evidence says might happen. If you still want to go ahead [with that behavior], be informed of what your outcome may be,” Fineout-Overholt explains.
To use EBP effectively, she continues, nurses must always keep two things in mind: Why are we doing this and what outcome are we trying to achieve? “[Whatever you’re doing, whether it’s] inserting a Foley catheter into a bladder or holding a dying patient’s hand during a procedure, if you can keep those [two questions] as your focus it will really help you to understand what aspects [of the evidence] to put into practice. With hand-holding, culture . What does it mean to comfort someone in certain situations? With putting in a catheter, what you are trying to accomplish depends on what kind of circumstances there are. Keeping patient care front and center is imperative.”
Nurses should question the research data if it does not seem to fit in with their own clinical experiences, Cantu says. “We teach critical thinking [at our university]. In your experience, if you have seen something different, you cannot discount that. Then you may need to ask, ‘How do I get [these two pieces] to fit together?'”
Melnyk stresses that nurses need to work in a culture that supports EBP. “[Buy-in from] upper management is critical. Nurse managers and nurse executives need to understand EBP, practice it and create a culture that [encourages their nursing staff] to implement it. Part of that culture is having a cadre of It is critically important for nurses of color to be in the forefront of the evidence-based practice movement, Fisher emphasizes. “Minority nurses can help pave the way through modeling and dissemination of their EBP projects, which was the goal of our work with NANAINA and the Indian Health Service. It is exciting to see the nurses get involved with EBP and use their creativity to improve patient care. Once EBP becomes [more widely accepted] as a new way of practicing and providing care on a daily basis, both nurses and patients will benefit.”
Want to Learn More About EBP?
Join the (Journal) Club!
Two years ago, Pattie Soltero, BSN, RN, MAOM, operations manager for 6 North, a pediatric rehab and med-surg unit at Childrens Hospital Los Angeles, was looking for a way to help introduce the unit’s nursing staff to evidence-based practice (EBP). So she started a journal club. Journal clubs—also known as research clubs—are so called because they involve reading and discussing research studies published in clinical journals.
Soltero was introduced to the concept of EBP when she went to a professional conference. There was a group of critical care nurses from a hospital here in L.A. who wanted to develop [a procedure for] providing their intubated patients with the best oral care possible,” she says. “So they went and researched the best mouthwash, the best toothbrush or utensil, and all the things related to providing the best oral care for intubated patients. Then they went to their manager and said, ‘These are the items we need.’ It turned out that the hospital already had a contract with a supplier that had every single item they needed. Based on that, they were able to develop a package for every single intubated patient in the ICU based on the evidence and their practice. Now [this hospital system] uses it in all of their facilities.”
The nursing staff on 6 North have varying levels of education, which is another reason Soltero started the journal club. “We have nurses with advanced degrees who are nurse practitioners and we have other nurses who have two-year associate’s degrees,” she explains. “Nurses with a two-year degree have had [little or no exposure to nursing research]. So we have taught them how to read a research article. We have taught them that nursing research is not something to be afraid of: It is done by nurses, it is not in a foreign language and it is applicable to our practice.”
Attend an EBP Conference Focusing on Vulnerable Populations WHEN:
February 19-20, 2009 WHAT:
10th Annual Evidence-Based Practice Conference: “Translating Research into Best Practice with Vulnerable Populations” WHERE:
Renaissance Glendale Hotel & Spa, Glendale, Ariz. SPONSORED BY:
Center for the Advancement of Evidence-Based Practice at Arizona State University College of Nursing & Healthcare Innovation FOR MORE INFORMATION:
Amy Fitzgerald, [email protected]
When the club first started, Soltero picked a research article once a month, posted it for everyone to read and then scheduled a meeting to discuss the study. “Little by little, after about six or seven months, some nurses started to really enjoy the journal club, so the staff [eventually took it over themselves],” she says. “Now it is just positive peer pressure [that motivates them to participate], so they meet on the weekend to do the journal club. I am not involved in it.”
While approximately 75% of the children the hospital treats are Hispanic, the facility also serves a variety of other ethnic communities. “We have an Armenian community close by and a Chinese community close by. And the rest of [our patient population] is a very diverse mix,” Soltero says.
She feels the journal club has been an excellent vehicle for implementing evidence-based practice to better meet the nursing needs of children of color. “For example, we looked at the spiritual care of our kids and how we are meeting those needs [given] the diversity of our population. People think because you are Hispanic you are Catholic, but that is not always true,” she notes. “We found a research article that focused on the spiritual care that was delivered to pediatric patients. Based on that, we were able to talk about how important that aspect is to their care.”
In recent years much research has been done outlining the health care disparities that exist between minority populations and the Caucasian majority. Now it’s time to do something about those inequalities by testing solutions and putting interventions in place.
This is the thinking behind a nationwide program funded by the federal Agency for Healthcare Research and Quality (AHRQ). The agency has awarded five-year grants to nine Excellence Centers To Eliminate Ethnic/Racial Disparities (EXCEED):
• Morehouse School of Medicine (Atlanta)
• University of Pittsburgh
• Mount Sinai School of Medicine (New York, N.Y.)
• University of North Carolina (Chapel Hill)
• University of California, San Francisco
• Baylor College of Medicine (Houston)
• University of California, Los Angeles
• Medical University of South Carolina (Charleston)
• University of Colorado Health Sciences Center (Denver)
“A lot of the research on disparities had been effective in identifying [problem areas] but less effective and less advanced in understanding why they existed and what could be done about them,” says Daniel Stryer, MD, who was AHRQ’s senior medical officer when the EXCEED program was launched some four years ago. “EXCEED was designed to take research on disparities to the next level, to build on the work that had been done, documenting a lot of disparities, trying to understand why they exist and what can be done [to eliminate] them.”
Each center is working on between four and nine projects, according to Stryer, now the director of AHRQ’s Center for Quality Improvement and Patient Safety. “The centers were also set up to develop greater capacity to study minority health issues,” he adds, “and to train minority researchers as well as others who are interested in racial and ethnic disparities.”
AHRQ is supporting the projects in partnership with several other Department of Health and Human Services agencies, including the National Center on Minority Health and Health Disparities. Stryer says AHRQ hopes the lessons learned through EXCEED’s research, including practical tools and strategies to eliminate disparities, will be generalized beyond the communities studied so they can be used nationwide.
EXCEED aims to foster efforts to augment the research skills and abilities of ethnically diverse researchers and institutions. Building relationships with communities and local organizations and working with community health centers and other health care groups serving ethnically diverse populations is also part of the EXCEED strategy.
Multidisciplinary teams are doing the research, with nurses playing major roles. “Nurses can often overcome cultural barriers and help reduce those barriers,” Stryer says.
Telehealth Interventions
At Morehouse School of Medicine, a historically black institution, EXCEED’s theme is “Access and Quality of Care for Vulnerable Black Populations.” The research seeks to identify and examine effective interventions for chronically ill African-American adults and low-income children who receive care from community providers in inner city and rural areas.
The principal investigator, Robert M. Mayberry, MPH, PhD, a professor and director of the Program for Healthcare Effectiveness Research at the school’s Clinical Research Center (CRC), has nurses working in key EXCEED roles. Nurses of color, he says, add a level of sensitivity, understanding and deep insight, which comes from having a similar cultural perspective to that of the project participants.
“Typically persons from the same cultural, historical and social environment relate, can translate, can understand and can be more supportive than someone who is coming from outside of that environment,” explains Mayberry, who is African American. “That becomes the key reason why the minority nurse becomes so critical in these types of interventions.”
Patricia Jackson, RN, an African-American clinical research nurse at the CRC, works on the “Telehealth Heart Failure Project to Improve Access and Adherence” study. This EXCEED project delivers intensive education and risk factor modification via a computer-based telemonitoring system. The project focuses on high-risk patients with a primary diagnosis of congestive heart failure. They have been randomized into two groups–an intervention group and a “usual care” group.
So far 106 patients have been enrolled for a three-month monitoring period. Mayberry hopes to increase enrollment to 240. Every patient in the study has an in-person quality of life assessment done one-on-one with Jackson at baseline or enrollment in the study, and then at 30 days, 90 days, six months and a year via telephone.
“Usual care” patients continue to go to their physicians and follow their care plans. If problems arise they can beep Jackson 24 hours a day. She also verifies hospitalization and clinic visits by reviewing hospital discharge or other health services records.
The intervention group patients receive telemonitoring equipment, which includes a setup for a stethoscope and a scale. On her initial visits, Jackson teaches patients how to use the equipment. “It is a like a little computer in their home with a camcorder on top, where I can see them and they can see me,” she says. “I can take their vital signs, blood pressure and weight. I listen to their heart sounds and their lung sounds.”
The protocol seeks to reduce emergency room, clinic or hospital visits, Jackson explains. “With this we are able to detect and correct clinical deterioration and complications quicker, so their hospitalizations and ER visits are kept to a minimum.”
Her job requires travel to patients’ homes, hospitals and clinics. Oftentimes, she says, elderly people in the rural areas don’t get appropriate care. Some may live 45 minutes to an hour from the hospital or in small country towns that don’t have health care facilities. “By doing this you are teaching them to be more compliant and to take care of themselves,” Jackson says.
Filling Unmet Needs
Another EXCEED project at Morehouse where an African-American nurse is playing a key role is “Translating Prevention Research into Primary Practice.” This demonstration project aims to improve and increase the delivery of preventive care services within the medical school’s physician practice plan, Morehouse Medical Associates, Inc. (MMA).
The project includes a randomized controlled trial comparing two ways of delivering preventive services to predominately African-American, low-income, inner city patients from Atlanta served by MMA. There are 240 patients in the study, split into a nurse-mediated group and a traditional physician reminder group.
Adult outpatients, 18 years of age and older, are eligible for the study and are recruited during regular office visits. The participants are seeing physicians for a range of conditions, from urinary tract infections to hypertension and diabetes. Linda Franklin-Sanders, RN, BSN, a research nurse at MMA, works with every project patient. At enrollment she takes a preventive history based on recommendations of the US Preventive Services Task Force, which enables her to identify unmet preventive care needs.
For the physician reminder group, Franklin-Sanders places reminder information in patients’ medical records for physician review. “[After the initial assessment] I talk with the physician and inform him or her of any other things that may have come up in my interview that the physician would need to know,” she says.
For the people in the nurse-mediated group, Franklin-Sanders initiates procedures for taking care of unmet needs, including making appointments for services ranging from mammograms and colon cancer screening to flu shots. “The patients are very receptive,” she reports. “They are open to your suggestions and they will call you if they need something. They like the nurse-mediated role and they seem to think it is something that should stay. Even though we have nurses here in the clinic, to have personal one-on-one [care is appreciated]. Everyone likes to be shown a little extra attention.”
Each time a study participant returns for care, Franklin-Sanders updates the patient’s preventive needs and repeats the process of either providing the services directly or placing a physician reminder in the patient’s record. The medical records of all subjects are reviewed–at baseline, one year and two years–to identify how frequently preventive services are documented and to record demographic information and diagnoses.
It is challenging to work with patients with serious illnesses, says Franklin-Sanders. “They really need education and counseling to get them to see what it is they need to do [to manage] their condition and stay healthy. But [when you succeed, it is] very rewarding,” she adds.
Understanding Underuse
At Mount Sinai School of Medicine in New York, the EXCEED theme is “Improving the Delivery of Effective Care to Minorities.” Projects assess the reasons for minority patients’ underuse of effective interventions for managing premature birth, breast cancer, stroke and hypertension. The study also evaluates ways to eliminate underuse.
AHRQ Offers Resources for Nurses The Agency for Healthcare Research and Quality (AHRQ)–originally known as the Agency for Health Care Policy and Research (AHCPR) when it was created in December 1989–is a Public Health Service agency in the Department of Health and Human Services (HHS). Reporting to the HHS Secretary, the agency was re-authorized as AHRQ in December 1999. Its sister agencies include the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), the Centers for Medicare & Medicaid Services (CMS) and the Health Resources and Services Administration (HRSA). With a $269.9 million budget–nearly 80% of which is awarded as grants and contracts to researchers at universities and other research institutions across the country–AHRQ provides evidence-based information on health care outcomes and health care quality, as well as cost, use and access. The agency has a Nursing Research arm that grants awards to nurses involved in heading up research projects. It also sponsors workshops and conferences. To learn more about AHRQ, visit www.ahrq.gov/ or contact the agency at 540 Gaither Road, Rockville, MD 20850, (301) 427-1364, [email protected].
The EXCEED researchers work in conjunction with Mount Sinai’s Center of Excellence in Partnerships for Community Outreach, Research on Health Disparities, and Training (EXPORT), which is funded by the National Center on Minority Health and Health Disparities. “There are known ethnic and racial disparities in health and in health care, and there are also known medical interventions that we know have been proven effective,” says Nina Bickell, MD, MPH, co-director of EXPORT.
Past research has shown there is a greater underuse of health care services in minority communities. “Our goal is to actually figure out what the causes of the under-use are and target specific strategies to those causes to reduce them,” Bickell explains. “[We hope to] reduce the disparity in underuse and thereby reduce subsequent poor health consequences of not getting treatment that has been proven effective. That is actually something we can work to effect a change in.”
Wanda Garcia, RN, BSN, is the nurse in Mount Sinai’s study “Improving Hypertension Control in East and Central Harlem.” East Harlem, often known as Spanish Harlem, has historically had a predominately Puerto Rican population, although there has been a recent large influx of Mexicans and Central Americans; Central Harlem has historically been an African-American community. Garcia works with six area health providers.
The study–a randomized controlled trial–is targeting problems that cause hypertensive patients to have poor control of their blood pressure. The research seeks to identify specific patient, provider and system problems, and then develop customized interventions to address them.
There are three participant groups in the study: usual care, blood pressure self-monitoring and nurse management. Patients who get usual care receive treatment from their regular clinicians. The research team provides blood pressure monitors to patients in the self-monitoring group.
Patients under Garcia’s care receive a blood pressure monitor and meet with her over the course of nine months. She makes initial home visits and teaches patient how to use the monitor. For the first two weeks of the study, patients in her group check in with her four times daily.
Garcia is directly involved in intervention. “I need to determine what I must do to get their blood pressure under control,” she says. “So, for example, if I see a patient for the first time and the blood pressure is not under control, I need to find out why. Is it non-compliance? Is it insurance issues or medication that needs to be titrated? Depending on the problem, then I have to intervene. Sometimes I have to contact the doctor.” If there are financial issues, Garcia helps connect the patient with a social worker or assistance program.
Over the nine months, Garcia has scheduled patient call dates. “In every follow-up phone call,” she says, “I discuss diet and exercise and lifestyle changes we are hoping they can institute to [make them] feel like they are more in control of the disease–as opposed to the disease being in control of them.”
Eventually the study will assess differences in blood pressure changes among the three study arms. It will also outline differences in quality of life, patient satisfaction, costs and cost-effectiveness.
As a bilingual Hispanic nurse, Garcia can easily communicate with patients who do not speak English. “Also, I know the culture because I am part of the culture,” she adds. “They feel they can relate to me. They can be more open and more willing to disclose the issues they are going through. In that way, I am better able to help them.”
Often Garcia has to factor in socioeconomic and lifestyle issues, such as poverty, smoking, drug abuse, alcohol and diet. “You go into the neighborhood and you are going to find all the fast food chains,” she notes. “All their lives they have been eating this type of food that they can financially afford. These things are all part of their lives. They have had a very rough life socially and financially.”
End-of-Life Issues
At the Medical University of South Carolina, “Understanding and Eliminating Health Disparities in Blacks” is the EXCEED theme. The research is examining strategies to address inequalities in health status between African Americans and whites, including those in rural areas, with specific clinical conditions that include HIV disease, cardiovascular disease and cancer.
Winnie Hennessy, RN, MSN, PhD(c), is a nurse specialist for palliative and supportive care working on “An Exploration of Racial Differences in End-of-Life Care Preferences Among Cancer and Congestive Heart Failure Patients.” One part of the study–the Team Planning and Care Education project–focuses on improving communication between patient and clinician and on respecting patients’ preferences in care planning. The project also explores and describes racial differences in needs, preferences and impact of the intervention.
“In the world of advanced illness, cultural perspective drives how family and patients will incorporate illness into their lives and how they will incorporate treatment,” Hennessy says. “These treatments need to fit what their vision is of health, getting well, sickness and how to overcome it–or in this case, where sickness cannot be overcome, [how to deal with that]. And if we don’t understand that or at least be sensitive to it, we as health care providers will not be able to help these people manage their illness, their dying and ultimately their death.”
In an ambulatory care, hospital-based oncology clinic, researchers are testing two interventions: a structured clinical needs assessment (CNA) form versus nurse counselor follow-up via telephone.
The CNA helps legitimize the discussion of psychosocial issues related to end-of-life care, Hennessy explains. It is a self-administered paper form, facilitated by the clinic nurse prior to the physician visit. This will then cue the physician to patient concerns. The nurse counseling calls allow time for problem solving, planning and referrals. Researchers are also in the early stages of developing a project to help cardiologists and physicians with their awareness of palliative care in congestive heart failure patients.
Overall, the nature of EXCEED projects shows the critical role nurses can play in improving the quality of care for patients in general, and the impact nurses of color can have on improving the quality of care for minority patients, says Robert Mayberry from Morehouse School of Medicine
“It is realization that is empirically based,” he emphasizes. “I think it is the wave of the future. As our health care delivery system continues to evolve, I think we will see more acts of participation [by] the nurse professional in these types of research activities and as part of the total quality improvement team.”
Besides performing his regular duties as a public health nurse at Creek Nation Community Hospital in the town of Okemah, Okla., Jim Schmidlkofer, BSN, RN, might on any given day start an IV in the surgery and recovery unit, assist in the radiology lab or help treat patients in the emergency room. The hospital is part of a health care system that provides services to American Indians living within the boundaries of the Muscogee (Creek) Nation.
“All of the hospital’s different departments work together,” he says. “We’re like one big family. So many patients and people I work with [are people] I see in the community. We’ve become more like friends.”
This small-town camaraderie is just one of the rewards of working in rural health. The pace may be slower than in a big city, but the variety of the workday and the opportunities to make a significant difference in patients’ lives can’t be beat.
“When I worked in the city, there was a lot of focus on the technical aspects of health care,” Schmidlkofer says. “Here you have time to hold a patient’s hand.”
More minority nurses like Schmidlkofer, who is affiliated with the Potawatomi Nation, are urgently needed in rural areas, where they can play important roles in narrowing health care disparities and improving health outcomes in some of the nation’s most severely medically underserved communities of color.
Troubling Disparities
Health disparities in rural America are so pervasive and troubling that it’s hard to know where to begin talking about them.
“Compared to the general population, rural residents are poorer and older, and these two factors make up the greatest predictors for health status,” says Brock Slabach, senior vice president of the National Rural Health Association in Kansas City, Mo., and a former rural hospital administrator in Mississippi.
People living in rural areas are less likely to have employer-sponsored health insurance or prescription drug coverage, and the rural poor are less likely to be covered by Medicaid benefits. Rural residents are also more likely to lack access to health care providers than urban residents. Many rural areas suffer from a shortage of primary care physicians, specialists, mental health services and nurses. It’s not surprising, therefore, that rural dwellers have higher rates of chronic diseases and poorer overall health than people in big cities.
Diabetes and hypertension, for instance, are rampant in east and central Oklahoma, where the Muscogee Nation Health System operates. Educating patients about disease prevention is a continual challenge for the system’s nurses.
“A lot of people have the [fatalistic] mindset that they’re just going to have diabetes,” says Sheryl Sharber, RN, director of nursing at the Creek Nation Community Hospital. “They figure, ‘Mom had diabetes, Grandma had diabetes–that’s just the way it is.’”
Disparities in health and socioeconomic status between rural and urban residents are especially pronounced among minorities. Although the term “rural poor” tends to invoke images of white Americans living in areas like Appalachia, the reality is that African Americans, Hispanics and Native Americans in rural areas are more likely to be poor than rural whites, according to Minorities in Rural America: An Overview of Population Characteristics, a 2002 report by the South Carolina Rural Health Research Center. And a greater percentage of rural minorities than rural whites live in federally designated Health Professional Shortage Areas.
Geographic isolation and lack of transportation are major barriers to health care for low-income rural residents, says Gloria N. Santos, RN, MS, vice president of patient care services at the 101-bed Feather River Hospital in Paradise, Calif., a small community in the Sierra Nevada foothills 85 miles north of Sacramento. Public transportation is sparse, and there are no sidewalks along main roads. Once a ride becomes available, patients show up at the hospital’s emergency room for treatment.
“Lack of transportation is sometimes the reason our emergency department patients give for not going to their regular doctors’ appointments,” Santos says.
To help improve access to care, the hospital plans to open a new outpatient clinic in Paradise which will be located right across the street from a bus stop.
Rural Cultural Competence
Although careers in rural health care might seem less “glamorous” than working in a large metropolitan area, this field offers tremendous opportunities for minority nurses to make a difference in communities where they are needed most. Demand is especially strong for nurse practitioners, health educators, emergency nurses and nurse managers.
The shortage of minority nurses is more acute in many rural settings because nurses of color are heavily recruited in urban areas, where pay and advancement opportunities are greater. Yet a racially and culturally diverse nursing workforce is just as important in rural areas as it is in urban locations. “It’s vital that the health care professionals mirror the community,” Slabach says.
Minority nurses working in rural health can serve as role models and play a major part in increasing cultural awareness and delivering culturally sensitive care.
“[When you come from the same culture as your patients], you have a better understanding of what they go through and how they were raised,” says Arlene Isham, RN, who works in the family clinic of the Creek Nation’s Okmulgee Indian Health Center in Okmulgee, Oklahoma. “[Because I myself am a member of the Creek tribe], it makes a difference with patients. They’re more at ease. If a patient tells me he was playing stickball and fell and hurt his leg, I know what he’s talking about.”
Isham recalls one day when a patient brought her husband to the clinic because he was delirious. His blood sugar level turned out to be low as a reaction to taking medication on an empty stomach. The man had been on a one-day ceremonial fast, and Isham educated the patient about how to handle his medication when fasting. As a tribal member who also participates in ceremonial fasts, she knew the importance of the ritual from personal experience, which provided a deep understanding of the patient’s need for culturally appropriate care.
“I enjoy working with my own people and trying to raise awareness of their health issues,” she says. “I could go to Tulsa and make more money, but I really like working with my tribe.”
Isham also continues to deepen her knowledge of her cultural heritage. She is learning more of the Creek language, which she did not learn when growing up but is still exclusively spoken by some of the tribe’s elders.
Schmidlkofer says his affiliation with the Potawatomi Nation does not necessarily put him ahead of the learning curve when working with his Creek patients. “Each tribe is unique and a nation unto itself,” he explains. “The most important thing to learn is to be very patient and very respectful when giving information or receiving it.”
Rural Health Research
Rural patients tend to trust health care providers who look like them or whom they’ve known for a long time, says Randy Jones, PhD, MSN, APRN, an assistant professor of nursing at the University of Virginia in Charlottesville. Jones’ research focus is on health disparities in rural minority and vulnerable populations, and he is particularly interested in addressing prostate cancer disparities in African American men, who are 1.5 to two times more likely to develop the disease than white men.
Jones was principal investigator in a study by the university’s Rural Health Care Research Center that found that female family members–wives, sisters or daughters–influenced whether black men decided to get screened for prostate cancer. Trust of the health care system also played an important role. Study participants said they trusted doctors and nurse practitioners with whom they had long relationships.
Jones, who has also published research about diabetes among rural African Americans, says health care facilities need to create a welcoming, non-judgmental environment and educate people every time they come through the door about any health issues for which they are at risk.
Establishing trust is also critical for recruiting rural people of color to participate in health care research. Jones points out that many older African Americans remember the infamous Tuskegee syphilis experiment, in which the U.S. Public Health Service conducted research on 399 black men with syphilis from 1932 to 1972. The men were mostly sharecroppers with limited education and were told they were being treated for “bad blood.” In reality, they were given no treatment at all. The scientists planned to study data from the autopsies of the men and essentially left them to deteriorate from the disease. When the media exposed the story in 1972, the experiment finally ended and the men received treatment. By then, 128 of them had died of syphilis or related complications.
Jones, who is African American, says he thinks in some cases his race has helped him establish the trust needed to recruit African American participants into research studies. But most important was his openness and the time he took to explain the intentions of the research. He immersed himself in the community and became acquainted with “gatekeepers,” such as pastors, owners of barbershops and other small businesses, and members of city boards, town councils and the local NAACP.
Filling the Need for Nurses
Increasingly, rural communities are beginning to address the nursing shortage by growing their own RN workforce. Santos, for example, recruits recent nursing graduates from a nearby community college and from a BSN program at nearby California State University, Chico.
Recruiting seasoned nurses is more challenging, she says. Therefore, her hospital is looking at sending newly hired RN graduates to a hospital in Sacramento for a week or two to immerse them in a large-scale critical care setting. This would enable them to see a wider variety of patients and strengthen their skills and confidence in less time than it would take at the rural 12-bed critical care unit.
Santos also participates in a program at CSU Chico that matches minority nursing students with mentors to improve retention. She meets regularly with a Hispanic nursing student to offer encouragement, and she and her mentee have become friends.
Nurses who have found rewarding careers in rural health care say this field offers many advantages, from both professional and personal perspectives. “I think every nurse should work in a rural hospital in the early part of their career, because you have to do a little bit of everything,” says Sharber. “You get a broad exposure.” Although the Creek Nation Community Hospital doesn’t have specialty departments, such as obstetrics or pediatrics, it sees patients of all ages and all disease processes, she adds.
In a rural hospital, emergency nurses are often the first line in caring for patients. “Many times the physicians may not be in house or may be a few miles away,” Slabach says. He also notes that a rural hospital is a more personalized work environment. Nurses and administrators know each other well, and this can lead to greater understanding and flexibility.
Santos grew up in New York and worked in various Adventist Health System hospitals in large cities before moving to her current job at the system’s hospital in Paradise. Her position as vice president of patient care services is equivalent to a chief nursing officer at a larger hospital. But she also oversees other departments besides nursing, including respiratory and cardiology services.
“You’re never at a loss for learning,” she declares. “I just enjoy my work here. I like patient care and I enjoy being able to remove barriers to quality health care.”
Successfully entering and completing a nursing program can be a daunting task for any student. But students of color often face additional challenges and barriers that white students do not—for example, lack of financial aid, inflexible admissions policies, a greater burden of family responsibilities and feelings of isolation.
While the obstacles experienced by students of color are well documented in the nursing literature, there is much less information available about the “survival skills” and strategies these students have used to successfully overcome those obstacles. Although the literature includes some older studies focusing on success strategies that American Indian and Latina nursing students found to be useful, there is very little currently being written about what today’s students of color can do to be successful as they plot a course through the process of obtaining their nursing education.
Why is so important for underrepresented students of color to not just get accepted into nursing programs but to succeed in them? The demographics of the United States are changing dramatically and rapidly. By the year 2050, 20% of the U.S. population will be foreign born, and Caucasians will no longer be the majority. As the country’s racial, ethnic and cultural demographics change, nursing has a responsibility to change with them so that the profession fully reflects the patient population it serves. Furthermore, if nursing is to retain its reputation as a profession that advocates for the underserved, then it must also advocate for the fair representation of people of color in the nursing workforce.
Latinos are the fastest-growing minority group in the U.S., yet they are severely underrepresented in the current RN population. What are the most significant institutional, personal and cultural obstacles Latino/a students face in nursing school? What assets and strategies can help them surmount these obstacles and complete their nursing programs? What can nursing school faculty and administrators do to create a more equitable educational experience for students of color and help ensure their success as they pursue their dreams of becoming registered nurses?
As a nurse researcher with a strong interest in exploring these questions, I conducted a study that used critical ethnography to examine how Latina students who were in their last year of an RN program or had recently graduated as RNs managed to successfully complete an associate degree or bachelor’s degree nursing program. Six nursing students and seven RN graduates from various schools participated in the study, which was conducted using open-ended interviews and focus groups. The participants were asked to describe their experiences in nursing school, focusing on obstacles, assets, coping strategies and how power was used in the nursing program they attended.
Encountering Racism
It is not surprising that the study participants cited many obstacles encountered while pursuing their nursing degrees. These included lack of multicultural understanding at the institutional level, hostility and lack of cultural awareness in nursing faculty, pressure to give up their Latino culture, inflexibility within the nursing program, unwritten “rules” of nursing education and a climate of competitiveness that was encouraged by the faculty.
The participants also talked about how family responsibilities created a dilemma for them. They had to push against the current of cultural expectations of women and deal with the day-to-day issues of childcare and other family obligations. This group of Latina students and RN graduates were not willing to abandon their families to get an education. Instead, they chose to find ways to maintain both family and school responsibilities, which was a difficult task to accomplish.
One of the most frequently mentioned obstacles was racism. This is noteworthy because racism in nursing school is rarely discussed or studied. It is widely perceived as a problem that existed in the past but has been eliminated today. Yet, racism—on the part of both classmates and faculty–was cited often in the interviews. For example, Latina students who spoke with accents commented that they felt they were being treated as less intelligent than other students. Many participants described being told by instructors that they were less capable than white students. As a system of advantage and disadvantage based on skin color and ethnicity, the effects of racism were felt by every participant in the study.
Perhaps even more insidious was the systemic racism they faced, which was evident in the number of blockades they experienced at the institutional level. Some of the Latina students reported being given different admissions information than that given to white students, and they were frequently encouraged by high school or college counselors to become nursing assistants rather than RNs.
While the participants had been able to develop strategies for overcoming a number of obstacles, they had difficulty naming specific strategies to deal with racism. They often described feeling that they should have responded more strongly to racist incidents or policies. Yet they feared that if they spoke out about racism they would be punished.
Cultural Assets
Sadly, when asked about assets that helped them overcome obstacles, the study participants were unable to cite many examples of institutional support from the nursing programs they attended. A few spoke of the “one” instructor who was supportive, but this was the exception rather than the norm for these students and RNs.
Therefore, they found support through other channels. Their own goals and dreams served as a compass that kept them on course as they headed toward their goal of becoming RNs. Interviewees also cited a desire to give back to their communities, and to help the Latino community to move ahead, as incentives that helped them persevere. Support from peers and being unified as a group were major assets the participants credited for their success.
Latino culture played a particularly important role in the coping strategies of these students and RNs. Every participant commented that they had to be a “cabezona”–meaning stubborn or determined–to make it through. They described this characteristic as a cultural asset that was a part of their Latino history and identity. They were proud to be Latina, proud of their heritage and they wanted to make their families and communities proud of them.
This cultural pride served as a powerful force that helped them swim against the tide of obstacles and racism they so often encountered. Perhaps because of their individual personalities, but most likely because of their culture, this group described how they actively resisted as a means of being successful. They resisted cultural norms that could hold them back. And by holding onto family ties and finding ways to integrate their Latino culture into their education, they resisted pressure to desert their cultural heritage.
Strategies for Students
Although all of the participants in this research study were Latinas, the findings revealed many strategies for success in nursing school that are applicable to all students of color. For example:
When you are applying to or entering a nursing program, identify students of color who are ahead of you in the program. Ask for their advice about what to watch for and how they navigated the program. These students can serve as cultural brokers and explain the expectations that nursing instructors may have.
Learn the unwritten “rules” of majority-dominated academia. This does not necessarily mean that you have to follow all of them, but awareness of these rules will help you decide when to resist and when to conform.
Form support groups. Study together, share information and stand up together against injustices.
Enlist additional support from family members. Maybe they are willing to baby-sit, cook some meals or help out in other ways so you can devote more time to your studies.
Tap into your cultural heritage. If stubbornness and determination are the norm in your culture, then don’t give up!
Acknowledge that racism exists, and that sometimes people who participate in it may not even realize they are doing so. This does not diminish the injustice, but as opportunities arise, educate your peers. Above all, do not let instances of racism define who you are. You have a great deal to offer the nursing profession!
How Faculty Can Help
Nursing educators who want to create a more equitable educational system for students of color must abandon the notion that treating all students the same or being “colorblind” is a solution to the problems of racism or student failure. As is true in the health care workplace, when failure occurs it is often the result of a system failure, not an individual one.
Based on the insights gained from the study participants, here are some additional recommendations for how faculty members can increase their understanding of the issues nursing students of color face and how they can partner with these students to help remove barriers to their success:
• Examine the curriculum to determine whether it is inclusive and relevant to all students or if it is centered on the care of white patients while excluding the needs of patients of color. It is imperative to bring racial, ethnic and cultural diversity into the nursing curriculum, such as teaching students about differences in skin, hair, dietary preferences, etc.
Rather than having a “culture day,” thread the concepts of cultural diversity and its importance in health care throughout the curriculum.
Encourage students of color to hold on to their cultures, both as assets for their own success and as assets that will enrich the nursing profession. Acknowledge, respect and build on these students’ cultural knowledge, beliefs and experiences.
Recognize that while curriculum content that includes information about cultural differences, health disparities and culturally sensitive health care is essential, students remain underserved if the curriculum delivery is not culturally sensitive as well.
Learn the personal stories of your students. Are there very young students? Older students? Students of color? Male students? Ask yourself: “What unique assets does this student bring to nursing?”
Be aware that students have different learning styles, based on factors such as age, culture and personality. Offer to help students. Often, students of color are reluctant to ask for help because they are uncertain about how others will perceive them, but they appreciate help when it is offered respectfully.
Flexibility is a must, both in the admissions process and in the classroom. Is your nursing program’s admissions policy based solely on GPA? Consider revising it to give more weight to students’ personal assets and experiences. Do your class times and days reflect a student-centered or a faculty-centered approach? Faculty and administrators must ask themselves who benefits from the policies and norms that are currently in place. Do they promote or inhibit student success?
Nursing programs are notorious for having a competitive atmosphere. But keep in mind that some students may come from cultures where working together for the benefit of the group—rather than striving for individual success—is the norm. These students will not thrive in a highly competitive environment. Furthermore, fostering an atmosphere of cooperation and collaboration in the classroom more closely reflects what will be required of RN graduates when they enter the workforce.
Mentor students and help them understand the unique culture that is nursing.
Learn to recognize how racism is manifested institutionally as well as individually. There are many anti-racism curricula that can be incorporated into nursing education. Be a role model by teaching white students to be anti-racism advocates and by speaking out against racism yourself. Never, ever tolerate negative comments about an individual’s race, ethnicity, gender, religion, sexual orientation, disability or any other characteristic that is not the majority. Learn to talk openly about discrimination and bias and how they affect health equity. Encourage all students to consider other viewpoints than their own.
Understand that many students may have strong family ties and responsibilities that they must balance with their academic responsibilities. Educators often argue that privacy laws make it impossible to engage with a student’s culture of family. Still, it is possible to find ways to include family in the nursing school experience. Invite family members to student presentations; include family in end-of-term celebrations. This sends a clear message that you value your students and acknowledge that they have their own lives outside the walls of the classroom, and that retaining these aspects of their lives is important.
In conclusion, there are many ways that students of color and faculty members, both individually and together, can employ strategies and engage resources to ensure that all students have an equal opportunity to successfully earn a nursing degree. Just imagine what could happen if every student of color was able to achieve his or her dream of becoming an RN. In today’s increasingly multicultural America, imagine what a difference this will make for the nursing profession, for health care and for improving the health of the medically underserved.
Because he wanted a “visceral take” on his potential subjects, Christopher Coleman, Ph.D., M.S., M.P.H., A.P.R.N.-B.C., A.C.R.N., F.A.A.N., sat for weeks in the waiting rooms of five Philadelphia clinics just getting to know older HIV-positive African American men, their families, and friends. He didn’t want to wait until he was ready to recruit volunteers for his latest HIV/AIDS study to introduce himself.
The experience not only allowed Coleman to build strong relationships with his possible study candidates, but to understand the challenges and unique cultural nuances that may impact their access to services.
His early engagement paid off. Besides getting input from the men and a buy-in for his research, Coleman, a Fagin Term associate professor of nursing psychiatry and multicultural diversity at the University of Pennsylvania School of Nursing, didn’t lose a single person during the ensuing study. More importantly, the professor was able to explain in detail how his study could truly benefit its participants in the end.
“They knew that I wasn’t out to hurt them,” says Coleman. “Once they trusted me, they were more likely to say to their neighbors, ‘Yes, this is a good person. Participate in his study.'”
Barrier of history
Recruiting minority patients for clinical research may be the most important challenge you undertake as a nurse. Racially and ethnically diverse people suffer many major health issues in disproportionate numbers to their populations, often with increased intensity. There are ample better health reasons to target such communities for clinical trials and research.
These same groups are underrepresented in the very studies that could improve or save their lives. The National Cancer Institute funded trials between 2003 and 2005, for instance, which underscored the disparities: although black people made up 8% of the study cohort—more than any other ethnic group—they were overshadowed by the nearly 90% of white enrollees.
As a minority nurse, you’re not only well positioned to bring parity to the research ranks, but you’re also doing it at an opportune time. With federal granting and regulatory agencies calling for better minority representation in health studies across the disciplines, there is definite focus on improving racial and cultural participation.
By pairing your nursing skills and cultural awareness with a foundation in research basics, you can be the ambassador for a study in your office or the conduit between investigators and the larger community. But be forewarned: that doesn’t mean people won’t question your motives. Even a shared culture doesn’t break down every barrier. However, by taking a page from Coleman’s experience and reaching out to the community, you can start building trust.
Why is that important? In recent years, racial and ethnic minorities have been noticeably underrepresented in research studies and clinical trials, partially due to lingering mistrust and a simple lack of outreach and community awareness. Given the suspicion many individuals still harbor from past abuses, specifically the notorious Tuskegee Syphilis Study, you’ll likely have to override general skepticism and even hostility.
The missing link
Fortunately, more recent studies suggest the overriding reason minorities don’t enroll in research has nothing to do with being afraid of the concept. Rather, it’s that they’re unaware of, and have no access to, clinical trials. Either their physicians aren’t involved, or the sites are far removed from where they live or work. (Minorities represent only 7% of the physician force—and an even smaller percentage participates in trials.)
Although those are challenges, they’re manageable challenges. With the right skill set and perspective, minority nurses are more than capable of facilitating trust building and serving as a conduit between investigators and communities. Sharing a common racial, cultural, and/or ethnic background with patients allows minority nurses not only to draw on the generic trust people have for nursing, but perhaps a certain kinship as well. Shared language, history, and values—these commonalities should help you advocate on behalf of other racially and ethnically diverse patients to investigators.
That’s not to say you’re automatically prepared to connect with another minority simply because you are a minority. Having an ethnic surname or proficiency in a second language is not enough to qualify. But if you’re aware and sensitive to the nuances and challenges of other ethnicities—and exhibit what anthropologists fi rst coined as cultural competence—you can be very effective promoting clinical trials to patients. You’re not only able to navigate research as a health care professional, but as a true cultural broker, making you well-positioned to bring others on board because you appreciate their concerns.
“People will react positively if someone takes the time to speak their language and communicate in a way that makes sense to them,” says Margaret Avila, M.S.N., M.S., R.N./N.P., P.H.N., a Los Angeles–based clinician and National Association of Hispanic Nurses board member. “We’ll hear patients say, ‘She really understands me. Even though she’s not like me, she still knows me.’ That attitude builds trust.”
Beverly Malone, Ph.D., R.N., F.A.A.N., and Chief Executive Officer of the National League for Nursing, agrees. “When I look in the mirror, I see you. You remind me of my daughter. You remind me of my family. And there’s an expectation that you’ll only be giving me information that will help me.”
Your efforts shouldn’t stop at the door of your hospital or clinic either. Although your persona and one-on-one interactions in the office will go far to establish your credibility, you still need to connect with the larger community. Even if volunteers for a given study can be identified in your clinic, being engaged outside the office strengthens your hand.
Rebuilding reputations
Most minority nurses already understand the importance of outreach in helping people of color take an interest in their overall well-being. They present at health fairs, talk at senior citizen centers, and organize other wellness events. They form partnerships with community leaders and organizations to engage individuals about their own health. Perhaps that describes you. Finding partners, making connections, and working throughout the community are powerful methods to change the health of any cultural group, but they’re also the very tactics that can help you establish your research bonafides.
Whether you’re collaborating with religious leaders or neighborhood figures, securing the support of influential decision makers is crucial for enrolling minorities. If you can prove to a respected fi gure in the community that your trial has merit and that you’re not just looking for guinea pigs, he or she can be an enormous asset in bringing others on board.
Besides someone vouching for you, your biggest asset may be your own reputation. By being a familiar face and positive force within the community, you solidify your standing so that when you need to convince others that participating in research is a good thing, you’ve already laid the groundwork. They’ll not only listen, but they may sign on with confidence that you’ll be there for the long haul.
“There’s a belief among people of color that researchers just parachute into the community, get them to participate, and then disappear,” says Daniel Montoya, Deputy Executive Director of the National Minority AIDS Council. “Nobody comes back and explains to them what role they played in finding answers. If more researchers followed through, people would have a better understanding of the importance of clinical trials and why they should participate.”
Tuskegee: A Foundation of Abuse Although the Tuskegee doctors had a serious goal of tracking unchecked syphilis in black men when they started their research in 1932, by the time the federal government shut down the project in 1972, investigators had amassed a plethora of ethical violations. The most profound charge was that they denied penicillin when it finally became available so they could finish their work. A bevy of federal regulations and professional guidelines ensuring safe, ethical trials were put in place to prevent anything like Tuskegee from happening again. Yet the specter of past research abuses still haunts. For years, many physician investigators wouldn’t work with minority populations, particularly African Americans, for fear of being stigmatized as taking advantage of vulnerable individuals. “People still reference Tuskegee,” says Debra A. Toney, Ph.D., R.N., F.A.A.N., president of the National Black Nurses Association and President/ CEO of the Las Vegas– based TLC Health Care Services. “How do you get past something that devastating so they’ll trust and believe that things are different today?”
When Martha Funnell, M.S., R.N., C.D.E., research investigator for the University of Michigan Medical School and spokesperson for the American Diabetes Association, and her colleagues were organizing diabetes studies among African Americans in the Detroit area, they knew it was essential to visit black churches. As the center of community life, houses of worship were natural outlets for recruitment, especially since their pastors knew which parishioners could benefit.
Funnell and her colleagues also organized community center meetings to ask potential participants for their input. Although the studies had to address specific questions, they considered those responses in the design. As a thank you, the team offered to participate in any church or community health-related events. Now they have a cadre of church members and others willing to share their study experience with potential volunteers.
“Success in life is all about creating relationships,” says Funnell. “In this case, it’s getting to know respected people within the community. It’s involving patients in developing studies so we can truthfully say, ‘Your friends and neighbors with diabetes have been part of this design.’ It’s all about creating trust.”
Connecting with volunteers There are multiple other tools to connect with potential volunteers. For instance, many research studies are facilitated based on input from community advisory boards. By participating in such panels, health professionals not only have a say in who gets recruited but also in how protocols are shaped and marketed. For example, by knowing that the distance between East Los Angeles and UCLA might be too far for a cancer or HIV/ AIDS study volunteer to realistically travel, a minority nurse can make sure that investigators set up shop closer, or suggest the best ways to reach that audience.
When pharmaceutical companies contact New York City’s Charles B. Wang Community Health Center to enroll a drug trial, administrators don’t have to look far for potential participants. Besides working with clinic doctors to identify Asian Americans or Pacific Islanders who might qualify, they also reach out to their community partners in Manhattan, Staten Island, Brooklyn, and Queens.
Because the Center has established a reputation over the past 40 years as a stellar health care resource, people have come to trust its direct patient care as well as the health educational events it sponsors, supports, and/ or staffs in the community. So when the clinic lends its clout to a drug trial, it means something, at least in terms of trusting the source.
Despite the center’s reputation, many of the patients who’ve participated in the hyperlipidemia, depression, and hepatitis B medication studies have been as apprehensive as other minorities about the research process. For instance, they want to know “What happens to my blood test results?” or “Is this drug going to work?” or, of even greater concern, “Are you going to take away my medication?” Fortunately, because the types of pharmaceutical trials undertaken by the Center have either compared drugs or tested the efficacy of combined therapies, nurses can assure patients of continued treatment. Nevertheless, calming fears, Susan Seto-Yee, R.N., M.P.A., the center’s Clinical Director, notes, “is definitely still a challenge.”
When Constance Dallas, Ph.D., R.N., an associate professor at the University of Illinois at Chicago College of Nursing, recruited subjects for a longitudinal study on paternal involvement of low income African American teen fathers, she identified her target area, a swath of communities from the southern suburbs of Chicago north to Rockford, Illinois. Then she blitzed ads on predominantly black radio stations because she knew, as part of the community, that her prospective participants might be listening. “My colleagues were astonished,” she says. “I had a wonderful response.”
Dallas wasn’t surprised that the number of respondents who ultimately fit the study was fairly low, but she was shocked with the number of others who called in just to share, knowing they didn’t meet the criteria. “They were so pleased that somebody was interested in their story.”
Transparency
Making sure people understand what’s expected of them in a clinical trial is essential. With potential misunderstandings and lingering mistrust from past research abuses, it’s imperative that you can translate a study, put it in context, and make sure that it’s a good patient fi t. You also need to be honest so that everyone’s expectations are realistic.
A major problem with Tuskegee was that participants had a general sense that doctors were tracking their “bad blood,” a local euphemism for any number of problems, but they hung in for decades without full disclosure. This was likely because a nurse from their own community, Eunice Rivers, kept them tethered, despite her own ignorance of the facts.
“Nurses really need to be careful not to fall into what I call ‘the Nurse Rivers trap,'” says Dallas. “It’s very important that they educate themselves about the research process and a particular study before they recommend or recruit someone into it.”
Nurses have had an introduction to research if they graduated with a university-based baccalaureate degree, but unless they’ve pursued a master’s or Ph.D., nurses are likely to not have been exposed to research in any significant way. In fact, one of the challenges facing nursing education today is increasing research experience at the undergraduate level while encouraging nurses of all ethnicities to raise their academic sights to the highest degree possible. Not only would an M.S.N. or Ph.D. give them a solid research footing, but also a seat as full-fl edged investigators at the study table.
Dallas’ study with the African American teen fathers, for instance, grew out of her experience as a family nurse practitioner working in a school-based clinic. As the principal investigator, she had input from beginning to end. “I think it’s wonderful to have people who are similar to the community involved in recruitment and data collection,” she says. “But if you leave out the interpretation and other decision-making steps, you’re leaving out the most important parts.”
In the meantime, there are other ways to boost your research acumen. Although many nursing organizations sponsor their own workshops and even institutes to bring members up to speed, another helpful resource is the Center for Information and Study on Clinical Research Participation (CISCRP), a Boston, Massachusetts, organization dedicated to educating both professionals and the public about clinical trials (www.ciscrp.org). CISCRP not only funds attitudinal studies, but it also offers many different tools to communities to dispel myths surrounding research.
Diverse health care needs
By engaging diverse peoples in clinical research, health professionals can speak with statistical confidence about a disease, diagnostic procedure, or treatment in a particular population. They also know that when they order a therapy, it’s dosed appropriately so they’re not doing any harm.
Not all research is going to lead to a cure or answer every question. But by recruiting individuals of different backgrounds, health care professionals not only have the possibility of understanding a disease, but also of creating more tailored treatments. By participating in that process, minority nurses can facilitate positive health changes—if not in this generation, then certainly in future ones. They also offer a safe, stable connection between investigators and patients.
“There isn’t anything more reassuring than having a nurse with familiarity look at you and say, ‘When they studied this drug, this is what they found worked and this is what they found didn’t work,'” Coleman says. “That kind of straightforward talk can have a huge impact on getting the public, particularly people of color, more involved in clinical trials. It’s putting our nurses out there.”
