More than 60% of nurses who identify as belonging to an ethnic minority have personally experienced an act of racism in the workplace, according to the findings of a new, national survey of nurses. This survey was conducted by the National Commission to Address Racism in Nursing.

In a statement announcing these findings, Ernest J. Grant, PhD, RN, FAAN, commission colead and president of the American Nurses Association (ANA), said: “My colleagues and I braced ourselves for these findings. Still, we are disturbed, triggered, and unsettled by the glaring data, and [we are] heartbroken by the personal accounts of nurses.”

Grant was elected president of the ANA in 2018. As a Black man, Grant represents 2 minority populations within the nursing profession. According to a United States Census Bureau American Community Survey, women make up over 85% of registered nurses (RNs), as well as nursing, psychiatric, and home health aides.

 Furthermore, race and ethnicity statistics have indicated that only 9.9% of RNs are Black or African American, 8.3% are Asian, 4.8% are Hispanic or Latino, and 0.4% are American Indian or Alaskan Native.

“There is nothing diverse in race or gender about the nursing profession,” said Sheldon D. Fields, PhD, RN, FAAN, asso- ciate dean for equity and inclusion at the Penn State Ross and Carol Nese College of Nursing in University Park, Pennsylvania. “Nursing has always been this way. The problem is, as the largest segment of the health care workforce, nursing does not reflect the society in which it serves.”

Fields was named the associate dean for equity and inclusion in October 2020.

This position was created after the advent of the COVID-19 pandemic and the widespread response to examine systemic racism after the death of George Floyd earlier that year. Of the more than a dozen freestanding colleges at Penn State, the College of Nursing was the last to hire a full-time diversity officer, he said.

The National Commission to Address Racism in Nursing was a dovetail project related to the ANA’s “The Future of Nursing 2020-2030: Charting a Path to Achieve Health Equity” report released in 2021.

The report focused on “current and future challenges impacting the nursing workforce, its leadership, and education to reduce health disparities and address social determinants of health to advance health equity.”

“We will never be able to achieve health equity without addressing systemic and institutional racism,” Fields said. Thankfully, he believes nursing and nursing schools have begun to address the issue.

The United States health care system is replete with examples of health care disparities. “Even when all other circum- stances are the same—their income, education, [and] ability to pay—people of color still experience worse health care outcomes, as evidenced by the persistence of health care disparities,” Fields said.

One of the most egregious examples of health care disparity is maternal and infant mortality rates. Black women are 3 times more likely to die from pregnancy-related causes than White women, and Black newborns die at 3 times the rate of White newborns.

Examples also exist within the oncology realm. Black women are more likely to die from breast cancer, and Black men die at higher rates from prostate cancer than their White counterparts.

“Whether it be oncology nursing or some other kind, if we are still getting disparate outcomes, that tells us something is wrong,” Fields said. “A lot of it has to do with people’s ingrained conscious or subconscious beliefs about other people.” These can include assumptions about someone’s ability to pay for care or the misconception that people of color have a higher pain tolerance. “All these assumptions can be consciously or unconsciously acted on,” he said.

Nurses are the largest segment of the health care workforce and they interact with patients more than any other health care workers in the system, Fields explained. If you take the same patient who may receive disparate care, and they interact with a charge nurse or physician who is a person of color, they tend to have better outcomes, he added.

“When we look at literature as it relates to racial concordance, we know Black patients who are treated by Black physicians have better outcomes,” said Timiya S. Nolan, PhD, APRN-CNP, ANP-BC, assistant professor at The Ohio State University College of Nursing and a nurse scientist at The Ohio State University Wexner Medical Center in Columbus. For example, race-concordant visits can be longer and result in higher patient ratings of care, medication adherence, or understanding of cancer risk.

“We have also shown that patients, regardless of identifying as Black or White, may experience less implicit bias when under the care of a physician who identifies as Black,” 

 Nolan said. “That lets us know there is something to racial concordance, as it relates to Black individuals. But even those who identify as White might benefit from the care of a person who identifies as non-White.” A greater feeling of comfort can also apply for concordance in ethnicity, gender expression or orientation, or religion.

Diversifying the nursing workforce can not only result in better outcomes for patients but also can create a more inclusive space for providers. “Let’s face it, a lot of our time is spent in the places we are employed,” Nolan said. “You want to feel like you have a work family. Having a diverse workforce means there are individuals with whom you feel like you belong.”

"It is important to not be an “only,” Nolan added. “Being an ‘only’ is stressful. When you think about stress and the way stress impacts the body, we know discrimination and racism are not just surface-level [issues]. Chronically, they can manifest into disease.” she said. “If you [do not] have someone from a similar background, you do feel like you are up against the whole world when you go to work.”

Nolan stressed that a work family includes people of a different race or ethnicity who stand as allies in the effort to make health care more diverse and inclusive. These allies are an important part of the difference between diversity and inclusion. “Diversity is having people of different backgrounds,” she said. “Inclusion is providing a sense of belonging, where people sit around a table together and feel they have the power to speak up. Both are important for obtaining and maintaining diversity of the workforce.”

For diversity and inclusion to be more widespread, there must be a true commitment to the work, Fields explained. “The leadership has to buy in at the highest levels,” he said. “At a university, for example, if it is not in the president’s agenda and not part of the university’s strategic plan, then there is not an intentional application of real resources.”

By resources, Fields means money. “It is not enough to recruit diverse students and faculty if you don’t have the resources to support them, their research, and their ability to attend conferences,” he said. “Intentional, purposeful, [and] strategic-driven leadership is what works.”

In addition, people must be held accountable. “If there is bad behavior, [and] if people commit intentional racist acts, they cannot go unpunished,” Fields said. “If there are no consequences, it does not work.”

What also does not work is a numbers game, or the idea of recruiting a certain number of historically marginalized students or faculty. Recruiting does not matter if the institution does not also do all it can to ensure they have a welcoming and inclusive environment, Fields explained. Additionally, all people must feel like they work in an environment where they can openly be who they are, regardless of race, ethnicity, gender, gender expression, sexual orientation, religion, or socio-economic strata.

A better racial, ethnic, and gender balance is key to a successful nursing workforce, Fields said. Achieving that balance starts in nursing schools. “We must have holistic admissions to nursing school,” Fields said. “Those schools must include modules on cultural relevancy—not competency— and the awareness that culture’s impact on health is an ever-evolving process, not an end point.”


Nolan agreed that schools will be an important factor but said that the pipeline may have to start as early as grade school. “We [must] start early in getting students interested in nursing and health care, then foster support of individuals from diverse backgrounds, helping them to also see other folks like themselves who are matriculating and going through these programs,” she said.

Nolan’s interest in the field was sparked early through participation in Upward Bound, a federally funded program designed to provide opportunities for participants to succeed in their precollege performance. “You come together and get different exposure to opportunities that are not otherwise offered in the regular grade school programs,” Nolan said.

Later, at the University of Alabama at Birmingham, Nolan joined a sister program and was tutored by a mentor who was already in the nursing program. “These efforts [must] be ingrained into our education system so students can see different opportunities, employees, and employers, and find ways in which they fit into society,” she said.

Now, Nolan is a founding adviser of the Nursing Students of Color at The Ohio State University. The organization focuses its peer mentoring program on nursing and prenursing students. “We offer different engagement opportunities so students of color can see themselves and feel like they belong in our institution,” she said.

“We have the opportunity to teach them differently and set them up for cultural success,” Fields said. “That is on us as educators and scholars, and it is why I have dedicated the last part of my career to remaining in a university setting, where I have access to the next generation.”

 These students are the hope of the future, Fields added. 

1. National commission to Address Racism in Nursing. American Nurses Association. Accessed March 7, 2022. https://bit.ly/3ioNfhj

2. New survey data: racism within the nursing profession is a substantial problem. News release. American Nurses Association; January 25, 2022. Accessed March 7, 2022. https://bit.ly/3w2OSJq

3. Day JC, Christnacht C. Women hold 76% of all health care jobs, gaining in higher-paying occupations. United States Census Bureau. August 14, 2019. Accessed March 7, 2022. https://bit.ly/3tZerbA

4. Nursing statistics. Minority Nurse. Accessed March 7, 2022. https://bit.ly/3KLhACu

5. Fields appointed as nursing’s first associate dean of equity and inclusion. Penn State. October 8, 2020. Accessed March 7, 2022. https://bit.ly/3i3vrIl

6. Working together to reduce Black maternal mortality. Centers for Disease Control and Prevention. Updated April 9, 2021. Accessed March 10, 2022. https://bit.ly/34Hq7Y1

7. Greenwood BN, Hardeman RR, Huang L, Sojourner A. Physician-patient racial concordance and disparities in birthing mortality for newborns. Proc Natl Acad Sci U S A. 2020;117(35):21194-21200. doi:10.1073/pnas.1913405117

8. American Cancer Society. Cancer facts & figures for African Americans 2019-2021. American Cancer Society; 2019. Accessed March 9, 2022. https://bit.ly/3ic6Lgw

9. Cooper LA, Roter DL, Johnson RL, Ford DE, Steinwachs DM, Powe NR. Patient-centered communication,
ratings of care, and concordance of patient and physi- cian race. Ann Intern Med. 2003;139(11):907-915. doi:10.7326/0003-4819-139-11-200312020-00009

10. Traylor AH, Schmittdiel JA, Uratsu CS, Mangione CM, Subramanian U. Adherence to cardiovascular disease medi- cations: does patient-provider race/ethnicity and language concordance matter?. J Gen Intern Med. 2010;25(11):1172- 1177. doi:10.1007/s11606-010-1424-8

11. Persky S, Kaphingst KA, Allen VC Jr, Senay I. Effects of patient-provider race concordance and smoking status
on lung cancer risk perception accuracy among African- Americans. Ann Behav Med. 2013;45(3):308-317. doi:10.1007/ s12160-013-9475-9

12. Sabin J, Nosek BA, Greenwald A, Rivara FP. Physicians’ implicit and explicit attitudes about race by MD race, ethnicity, and gender. J Health Care Poor Underserved. 2009;20(3):896-913. doi:10.1353/hpu.0.0185

13. Fields S, Wharton MJ, Ackerman-Barger K, Lewis, LM, Beard KV. The rise of diversity, equity, and inclusion (DEI) practi- tioners in adacemic nursing. OJIN. 2022;27(1_manuscript 3) doi:10.3912/OJIN.Vol27No01Man03

Articles

Inclusion has to be an intentional part of the plan as strategies to diversify the nursing field are adopted.

The Future of Nursing Must Be Diverse 

In 2018, the US surgeon general issued an advisory calling for immediate action against the epidemic of youth electronic e-Cigarette use.

For the past 7 years, e-cigarettes have been the most commonly used tobacco product among US youth

 with an estimated 1 in 5 high school students and 1 in 20 middle school students using them.

Nurses are on the front lines and are a direct touch point in the effort to curb e-cigarette use among children and teenagers, according to Joelle Fathi, DNP, RN, ARNP, CTTS, FAAN, chief healthcare delivery officer at the GO2 Foundation for Lung Cancer and deputy chair of the Tobacco Control and Smoking Cessation Committee at the International Association for the Study of Lung Cancer. 

“Nurses [belong to] the No. 1 most trusted profession. If more nurses understand how these products hijack the brain and neurohormones, they can use this information to educate children and have [repeated] conversations about the harms before they are ever exposed,” Fathi said. 

Conventional or combustible tobacco includes tobacco products designed to be burned and smoked, such as cigars or cigarettes. In contrast, e-cigarettes work by heating the tobacco product. 

The FDA defines these products as electronic nicotine delivery systems (ENDS), which include vapes, vaporizers, vape pens, hookah pens, e-cigarettes, and e-pipes.

To best educate their patients, it is important that all nurses understand the mechanism of addiction for nicotine. 

“When someone inhales vapors from ENDS, those gases go into the depths of the lungs; they permeate across the very fine lining of the lung and into the arterial bloodstream,” Fathi noted. “From the time of inhalation it takes only about 7 seconds for any substance in that tobacco to reach the brain and other organs via the arterial blood stream. 

“There are other things that cause these surges, but nothing can touch the surge that nicotine causes. It takes only as few as 3 repetitive exposures to develop nicotine dependence,” she said. “When people use nicotine, even for a short duration, their neurocircuitry never goes back to normal.”

The good news, according to Mary Rezk-Hanna, PhD, NP, FAHA, an assistant professor at UCLA School of Nursing, is that there has been a clear reduction in the use of combustible cigarettes among adolescents. Unfortunately, the use of e-cigarettes and other alternative tobacco and nicotine products is offsetting that decline. Data show that from 2011 to 2018, the use of e-cigarettes increased among high school students from 1.5% in 2011 to 20.8% in 2018.

Nurses can raise awareness among adolescents about the amount of nicotine in e-cigarettes. For example, 1 combustible cigarette contains about 1 mg of nicotine. Smoking a pack of 20 cigarettes a day would equal 20 mg of nicotine. In comparison, one 3% JUULpod contains 35 mg of nicotine per mL, or about 23 mg of total nicotine at the time of manufacture. The 5% JUULpod contains 40 mg of nicotine.

e-Cigarettes have not been around long enough to fully understand the long-term associated health risks. However, as of 2020, more than 2800 hospitalized cases or deaths from e-cigarette or vaping product use– associated lung injury (EVALI) had been reported to the Centers for Disease Control and Prevention (CDC).

 Symptoms of EVALI include respiratory symptoms, gastrointestinal symptoms, and constitutional symptoms such as fever, chills, and weight loss. 

“Nurses have a critical role in controlling the smoking epidemic,” Rezk-Hanna said. 

Research findings have indicated that compared with smokers who receive usual care, smokers who receive assistance from a nurse have a 29% greater probability of successfully quitting for 5 or more months. This emphasizes the importance of nurses in efforts to curb tobacco use.

According to Rezk-Hanna, the 5 A’s framework for promoting smoking cessation (ask, advise, assess, assist, and arrange) is highly effective and nurses should be encouraged to use it with their patients. This means that nurses should identify tobacco use status for every patient at every visit (ask). They should urge tobacco cessation (advise) and determine whether the user is willing to attempt to quit (assess). For those who are willing, nurses should provide counseling and pharmacotherapy to help (assist), and schedule a follow-up (arrange).

“Assisting patients to achieve permanent [smoking] cessation is one of the most important services we can offer them to protect their health now and in the future,” Rezk-Hanna said. 

Some excellent cessation resources are available, including 1-800-QUIT-NOW, a national portal to a network of state quit lines. The Truth Initiative has launched an e-cigarette quit program to address the increase in youth vaping. To access the new program, users must text “DITCHJUUL” to 88709 to enroll. The American Lung Association’s Not On Tobacco is a voluntary quit program for young people aged 14 to 19. 

Treatment combined with behavioral counseling is the best way to help patients quit, Fathi said. Nurses have to be familiar with and know how to access local behavioral counseling resources and pharmaceutical treatments. For example, Yale Tobacco Center of Regulatory Science has launched a vaping cessation program for young people aged 14 to 19 years in Connecticut. 

“The biggest bang for our buck will always be to prevent youth from ever picking these products up,” Fathi said. “There is clear science that demonstrates that 90% of people who have used tobacco lifelong started before the age of 18.” “If we can change that…smoking will be obliterated.” 

1. Surgeon General’s advisory on e-cigarette use among youth. CDC. December 2018. Updated October 21, 2021. Accessed January 4, 2022. 

2. E-cigarette use among youth and young adults: a report of the Surgeon General. US Department of Health and Human Services. 2016. Accessed January 4, 2022. 

3. Cullen KA, Ambrose BK, Gentzke AS, Apelberg BJ, Jamal A, King BA. Notes from the field: increase in use of electronic cigarettes and any tobacco product among middle and high school students – United States, 2011-2018. 

. 2018;67(45):1276-1277. doi:10.15585/mmwr.mm6745a5

4. Vaporizers, e-cigarettes, and other electronic nicotine delivery systems (ENDS). US Food and Drug Administration. Updated September 17, 2020. Accessed January 6, 2022. 

5. What is the size of a JUULPOD? JUUL. June 15, 2020. Accessed January 6, 2022. 

6. Outbreak of lung injury associated with the use of e-cigarette, or vaping, products. CDC. Updated August 3, 2021. Accessed January 6, 2022. 

7. Rice VH, Hartmann-Boyce J, Stead LF. Nursing interventions for smoking cessation. 

 2013;(8):CD001188. doi:10.1002/14651858.CD001188.pub4

8. Five major steps to intervention (the “5 A’s”). Agency for Healthcare Research and Quality. December 2012. Accessed January 6, 2022. 

Awareness of the e-cigarette epidemic among youth could help
drive primary prevention.

The Rise of e-Cigarettes— What Nurses Should Know

Receiving a cancer diagnosis is likely to cause some level of fear or anxiety in children and adolescents old enough to understand the situation.

“One of the things that can cause fear is just being in a new place with a lot of new people and faces,” explained Amy R. Newman, PhD, RN, CPNP-PC, assistant professor at Marquette University College of Nursing in Milwaukee, Wisconsin. “A lot of children’s hospitals have come a long way in making the physical environment more child friendly, but it can still be overwhelming.”

Pediatric patients with cancer are dealing with all these new things in addition to the vulnerability that comes with not feeling well.

Fear and anxiety can present differently depending on the age of the child, Newman noted. Nurses also must consider the patient’s developmental stage and whether there is developmental delay or other sensory processing disorders.

Younger school-age children may cry or refuse to comply with different things asked of them, and they may be clingier to their parents, Newman said. Older children may refuse to engage or interact with members of the health care team.

Anxiety may also present as difficulty thinking or concentrating, irritability, increased heart rate or fast breathing, increased need for reassurance, headaches, loss of appetite, or upset stomach, constipation, or diarrhea.

Fear and anxiety may increase as pediatric patients are presented with more new information, people, and environments, Newman explained, noting that having too much information given at once may also increase fear and anxiety. In addition, loud, agitated, or anxious health care staff could increase those feelings in a patient.

Oncology nurses can play an important role in anticipating these stressors and reducing fear and anxiety for their patients.

Newman said that one of the most important things a nurse can do is maintain a calm and friendly demeanor, regardless of how the patient is acting.

“Maintain a calm presence and don’t allow yourself to get rattled when things are not going as smoothly as you would like,” Newman advised. “I encourage nurses to really engage their patients. Ask them questions about what grade they are in or what they like to do.”

Aurélie Weinstein, PhD, MA, APC, a development psychologist and child and family therapist at Atlanta Center for Wellness and an assistant professor in the Department of Psychological Science at Kennesaw State University in Georgia, echoed this advice, adding that nurses can also directly ask patients what their fears and concerns are.

“When we deny our emotions, they often become bigger,” Weinstein said. “The more we feel like someone understands, the more that fear starts to decrease.”

Weinstein and colleagues conducted a study exploring which psychological interventions nurses felt were most effective for addressing fear during medical treatment. They found 3 strategies to be effective

: educating children by explaining the procedure; providing emotional support to children by listening, answering their worries, or holding their hands; and distracting children through passive and active forms.

For young children, Newman said that nurses can help explain certain procedures involving medical equipment like a stethoscope or blood pressure cuff by showing it to patients and inviting them to touch it or try it out.

“These little gestures can help prepare them as best you can,” Newman said.

Distraction can also be an effective approach. One study looked at the use of patient-selected distractors on pain, fear, and distress during port access or venipuncture. Patients could select from several items such as bubbles, virtual-reality glasses, or handheld video games. Patients who participated in the distraction had significantly less fear and distress as reported by the nurse and a trend toward less fear as rated by the patient.

In addition, Verna L. Hendricks-Ferguson, PhD, RN, FPCN, FAAN, the Irene Riddle Endowed Chair at Trudy Busch Valentine School of Nursing at Saint Louis University in Missouri, and colleagues have used art as an outlet for pediatric patients to express fear and anxiety or as a method of distraction. In one case study, she employed an art-making project that converted a patient’s meaningful family picture into a paint-by-number canvas to provide a fun activity for the child to focus on.

“It is important to provide patients with tools to express themselves, especially patients that are school-aged or older,” Hendricks-Ferguson said. “For younger children, play therapy or music therapy may be helpful tools.”

Newman also stressed the importance of engaging the child or adolescent directly.

“Oftentimes we get caught up talking to the parents, and the children are still in the room, hearing things,” Newman said. “We should be intentional about talking to the child and explaining what is happening and what is going to happen. This allows them to be prepared and not surprised.”

Coping with fear and anxiety might be particularly difficult when pediatric patients are faced with end-of-life discussions.

Nurses play an important role in these discussions, Hendricks-Ferguson said, but may have different comfort levels with addressing these sensitive topics.

Hendricks-Ferguson and colleagues conducted a qualitative-descriptive study exploring the palliative care/end-of-life communication perspectives of a small group of novice pediatric oncology nurses. The study established several themes from its group discussions, including that the nurses felt they lacked effective communication skills and experience to openly discuss some end-of-life issues, how initiating these conversations was difficult, and the importance of being mentored in these situations.

“The more experienced nurse oftentimes feels more comfortable exploring where a child is at in these situations, whereas a nurse that has less than 1 year of experience is more likely to rely on mentors,” Hendricks-Ferguson said.

She noted that studies are lacking on effective tools for decreasing fear and anxiety in pediatric patients with cancer facing end of life. One recent randomized clinical trial study examined the effect of a legacy making intervention—an action aimed at being remembered—on quality of life among children with advanced cancer. The intervention directed children to create digital storyboards about themselves and upload photos, video, and music. Although the results were not statistically significant, children who participated in the legacy-making intervention experienced small effects in child procedural anxiety and perceived physical appearance compared with a wait-list control group.

“This is a pioneering area of research, and we need to do more work like this,” Hendricks-Ferguson said. 

She recently published results of a pilot study examining the effects of COMPLETE, a communication plan designed to improve end-of-life outcomes via earlier hospice enrollment and reduced pain and suffering among children with cancer at the end of life.

 COMPLETE involves a series of conversations including a pediatric oncologist and registered nurse dyad working collaboratively to guide discussions about goals of care, using conversation guides and visual aids that begin at diagnosis.

Hendricks-Ferguson noted that it is difficult to conduct studies with pediatric patients during end-of-life care because parents are often very protective of their children, even adolescents. For that reason, a lot of strategies employed in the day-to-day practice of medicine are those that nurses have heard about anecdotally or established themselves after years of experience.

Meditation Techniques to Reduce Fear, Anxiety

Guided imagery, deep-breathing exercises, and mindfulness activities are other strategies to consider.

For example, Newman has seen procedural anxiety in pediatric patients, like those diagnosed with acute lymphoblastic leukemia, who require a lot of procedures, specifically lumbar punctures.

“Even just anticipating those procedures, kids can get anxious,” Newman said, noting that she has observed nurses “use guided imagery to calm patients down and get through procedures.”

Hendricks-Ferguson has witnessed nurses effectively use deep-breathing techniques or mindfulness activities to help patients get through painful procedures. “These are 2 techniques that most nurses, even if they did not have much experience, will probably get mentored on by senior nurses,” she said.

Weinstein also mentioned witnessing
effective use of deep-breathing exercises.

“These can include things like blowing bubbles or blowing out a candle,” Weinstein said. “When our body is experiencing fear, it tenses. Deep breathing helps to relax the body. If our body is relaxed, our mind will also relax.”

Weinstein emphasized that although nurses play a vital role in easing the fear and anxiety of pediatric patients, they also function as part of a greater team. Integrating child life specialists and psychologists can be helpful, and including the child’s parents or guardians is equally important.

“Nurses are not facing this alone,”
Weinstein said. 

1. Anxiety in children and teens with cancer. St. Jude Children’s Research Hospital. Updated January 2019. Accessed September 2, 2021. 

https://together.stjude.org/en-us/care-support/psychology/anxiety.html

2. Weinstein AG, Henrich CC. Psychological interventions helping pediatric oncology patients cope with medical procedures: a nurse-centered approach.

2013;17(6):726-731. doi:10.1016/j.ejon.2013.04.003

3. Windich-Biermeier A, Sjoberg I, Dale JC, Eshelman D, Guzzetta CE. Effects of distraction on pain, fear, and distress during venous port access and venipuncture in children and adolescents with cancer. 

 2007;24(1):8-19. doi:10.1177/1043454206296018

4. Bultas MW, Saini S, Marty J, Hendricks-Ferguson VL. Art making from the HEART: a pediatric case study about coping and distraction during oncology treatments. 

 2017;19(6):565-570. doi:10.1097/NJH.0000000000000389

5. Hendricks-Ferguson VL, Sawin KJ, Montgomery K, et al. Novice nurses’ experiences with palliative and end-of-life communication. 

2015;32(4):240-252. doi:10.1177/1043454214555196

6. Akard TF, Dietrich MS, Friedman DL, et al. Randomized clinical trial of a legacy intervention for quality of life in children with advanced cancer. 

 2021;24(5):680-688. doi:10.1089/jpm.2020.0139

7. Hendricks-Ferguson V, Newman A, Brock KE, et al. COMPLETE (Communication Plan Early Through End of Life): development of a research program to diminish suffering for children at end of life. 

Anticipating these stressors and implementing specific strategies can help ease the distress and vulnerability felt by children and adolescents.  

Nurses Can Minimize Fear, Anxiety in Pediatric Patients With Cancer

No one deserves a cancer diagnosis, yet some patients feel stigmatized by their diagnosis, explained Lee Ann Johnson, PhD, RN, an assistant professor of nursing at the University of Virginia School of Nursing. Stigmas can be associated with a wide variety of cancer types including lung cancer and a possible association with smoking; human papilloma virus-related cancers such as oral, cervical, and anal cancers; male breast cancers; and male-specific cancers such as testicular, prostate, and penile cancer. 

Johnson understands these stigmas well. Her mother, who never smoked, died of lung cancer. Her grandfather, a former smoker, received a lung cancer diagnosis decades after quitting.“ 

In my family, we never made a big deal out of the smoking either way, but I have been to medical conferences and heard patients speak who often feel like their family blames them for getting the disease or their spouse...resents them for having to take care of them,” Johnson said. “Lung cancer is an awful disease with a high symptom burden; feeling stigmatized can add a layer of depression and anxiety.” 

Johnson and colleagues conducted a small study of patients with lung cancer to examine the influence of stigma on social support, symptom severity, and quality of life, among others.

 They found that about one-third of participants reported experiencing a high level of stigma, which was significantly related to a lower quality of life. There was higher symptom severity for feeling distressed, problems remembering things, and feeling sad. Greater symptom interference was reported related to mood, relations with others, and enjoyment of life. Cancer-associated stigma can come in other forms as well, according to Barbara A. Murphy, MD, director of the Head and Neck Oncology Program and director of the Pain and Symptom Management Program at Vanderbilt-Ingram Cancer Center. “Patients may have stigma associated with sequelae of their cancer,” Murphy said. “For example, a patient with head and neck cancer who has a large surgical procedure with visible scarring or disfigurement may have body image issues.” Such issues can profoundly affect emotions, result in depression, and decrease quality of life. There may also be less visible issues, she added. 

“Patients may have chronic fatigue and...no longer [be] able to maintain the same level of activity,” Murphy said. “They often feel a burden because they cannot work or fulfill their family roles in the same way as they used to. On the outside, people will look at them and say they look fine, but they do not feel fine.” 

Health care professionals and oncology nurses play an important role in reducing these stigmas and helping patients feel comfortable and welcome. For example, the results of a 2019 survey assessing lung cancer stigma showed that both doctors and nurses felt the most common way patients with lung cancer are treated differently was that they “received less sympathy from medical staff.”

According to Johnson, one of the best ways a nurse can have a positive effect is by asking the patient, perhaps even in the absence of their caregiver, about their experience. “Be upfront,” she said. “Ask them about how they are feeling and, if they are having issues, connect them to resources that could be helpful, such as therapy or social workers.” In fact, a study of prostate cancer stigma suggested that oncology nurses can improve patient experiences within the health care system and reduce stigmatization by improving psychosocial support. Nurses can improve communication between the patient and the physician and act as navigators to offer informational and emotional support.

Nurses may even have to look inward to assess their own conscious or unconscious bias toward patients whose diagnosis includes some of the more commonly stigmatized cancers. 

“As the whole field becomes more culturally sensitive and inclusive, I think we should also be developing programs that include stigma training,” Johnson said. “Addressing these possible biases would help us to provide the best care we possibly can to our patients.” 

Murphy agreed that oncology nurses have an important role to play.  

"Nurses are some of the most empathetic human beings I know, and there is a tremendous trust that patients place in nurses...more so than even in physicians,” she pointed out. “One of the important roles a nurse has is providing patients with the opportunity to ‘unload’ in a nonjudgmental environment.” 

Nurses can help to educate patients and their families and caregivers to address or reduce stigmas associated with certain cancers, Murphy continued. 

“We have to be champions of under-standing,” she said. “We have to constantly remind ourselves that patients are human beings and walk in their footsteps in order to effectively address their problems.”


1. Johnson LA, Schreier AM, Swanson M, Moye JP, Ridner S

. Stigma and quality of life in patients with advanced lung cancer.

2019;46(3):318-328. doi:10.1188/19.ONF.318-328

2. King JC, Rapsomaniki E, Rigney M, et al. Lung cancer stigma: a ten-year look at patient and oncology attitudes about lung cancer. 

2019;37(suppl 15):11619. doi:10.1200/JCO.2019.37.15_suppl.11619

3. Buote R, Cameron E, Collins R, McGowan E. Understanding men’s experiences with prostate cancer stigma: a qualitative study. 

2020;47(5):577-585. doi:10.1188/20.ONF.577-585

Some cancers carry stigma or cause people to feel guilty about their diagnosis. 

Cancer Stigmas Persist, But Nurses Can Help

Oncology nurses have an important role in the discussion of and education about complementary therapy, more commonly called integrative care.

“The word ‘integrative’ is key in the discussion,” said Eugenie Spiguel, MSN, ANP-BC, a nurse practitioner in the integrative medicine department at Memorial Sloan Kettering Cancer Center (MSK) in New York, New York. “When people look at the term ‘alternative,’ those therapies tend to be ones outside of the norms of cancer treatment—alternatives to standard of care. With integrative medicine, we are looking to complement standard of care.”

Education about the role of integrative medicine compared with alternative therapies is important, as more than 1 in 3 Americans believe that cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology’s 2020 National Cancer Opinion Survey.1 Among women with breast cancer, only about half of patients disclosed use of complemen-tary and alternative medicines to their health care providers.2

Done successfully, integrative medicine can help manage a patient’s adverse events and enhance quality of life before, during, and after treatment into survivorship. “When you combine evidence-based treatments with the supportive services, that integrative approach to cancer care treats the disease with surgery, chemotherapy, and other conventional tools, [you're] supporting patients’ strength, stamina, and quality of life,” said Carolyn Lammersfeld, MBA, MS, RD, CSO, LD, vice president of integrative care services at Cancer Treatment Centers of America (CTCA).




Integrative care can include modalities as varied as behavioral health services, nutritional support, oncology rehabilitation, and pain management.

One example of integrative medicine used at MSK is acupuncture, according to Spiguel. Acupuncture involves the use of very thin needles along with heat, pressure, or electricity to stimulate points on the patient’s body.

“We have a robust acupuncture program and have used it to help patients deal with peripheral neuropathy associated with chemotherapy,” Spiguel said.

Researchers at MSK published a meta-analysis in 2012 that showed that acupuncture was an effective option for treating chronic pain.3 The center also has ongoing clinical trials to evaluate acupuncture in other areas, such as comparing it to massage for pain management in people with advanced cancer.4

“We also use acupuncture for hot flashes experienced by patients with breast, ovarian, or pros-tate cancer as a result of their treatment,” Spiguel said. “It can be used for joint pain caused by immunotherapy or other treatments and for the prevention of nausea and vomiting from chemotherapy.”

Spiguel also discussed treatments like meditation. “When we think about stress and anxiety from upcoming scans, or even while in an MRI machine, meditation can be helpful,” she said. “Patients can participate in classes and guided meditation.”

Clinicians may recommend integrative services as a complement to a patient’s initial treatment plan or at any point over the course of their treatment or survivorship, Lammersfeld said.

“For example, nutrition services may be used to complement antiemetics or antinausea medications to help reduce chemotherapy-induced nausea, making the treatment more tolerable and reducing treatment delays or interruptions,” Lammersfeld said. “Sexual health counseling may be offered to patients who have completed their cancer treatment and are now looking for a way to return their lives to normal.

”Another aspect of integrative medicine that should be discussed more with patients, Spiguel said, are physical activity and good sleep practices. During active treatment, studies have shown that regular physical activity can reduce fatigue, improve physical functioning, and have positive effects on self-esteem and quality of life.5-7

“When you consider that up to 80% of adults living with cancer are malnourished, and 1 in 2 patients has some form of nutritional deficit at the time of their diagnosis, nutritional support can be extremely important, too,” Lammersfeld said.

Alternatively, there are some things that oncology nurses should be on the lookout for that could cause harm to the patient. “We advise our patients to steer clear of any ‘therapy’ that is promoted as an alternative to evidence-based treatments like surgery, radiation, chemotherapy, and immunotherapy,” Lammersfeld said.

“For example, if a patient chooses to explore laetrile/shark cartilage, etc, instead of the chemotherapy recommended by their medical oncologist, they are not likely to change the trajectory of their cancer.”Patients should be cautioned against the use of vitamins, herbs, and supplements as a whole during active treatment. Supplements should be discussed with their provider or a medical professional with expertise in herbs and supplements and the effect on chemotherapy. Initiation of ServicesThese important services can be initiated by the patient or by the health care provider. “We have seen a lot of referrals from providers, whether they are advanced practice providers or physicians, as well asnurses who have seen good results with our services,” Spiguel said. “In other cases, the patients may have seen our services on the website."

Patients are pleasantly surprised, Lammersfeld said, when their health care providers offer supportive services as part of the treatment model.

Any conversation involving integrative medicine should be an open conversation, Spiguel said.

“You can’t just tell a patient no without discussing it; that shuts the patient down and they may end up taking things without discussing it with their providers,” Spiguel said. “Instead, open the conversation and explain things to your patient.

”For example, a nurse could explain that chemotherapy is metabolized by enzymes and herbs or supplements could interfere with that metabolism, causing side effects or making the treatment less effective.

The patient is at the heart of any treatment plan, so each conversation should take place on an individual basis, Lammersfeld said. “Create a safe environment for patients to share what they are doing or considering and allow them to ask questions,” she said. “Encourage their motivation to participate in their care by providing information on evidence-informed modalities, which may be helpful, while gently discouraging modalities which may be harmful or not safe during treatment.

”Nurses and patients looking to get more information about integrative medicine can look to the Society of Integrative Oncology (integrativeonc.org), which holds a conference each year, the American Holistic Nurses Association (ahna.org), which is not oncology specific but has great resources for integrative therapies, or the American Consortium of Integrative Medicine and Health (imconsortium.org), which has a nursing special interest group.

In addition, both MSKCC’s Integrative Medicine website and CTCA’s website contain great information for patients on the benefits of integrative care. “A lot of providers still view integrative or complementary medicine as a little bit outside of the realm of oncology, but a truly integrative approach can really provide benefits,” Spiguel said. “Every person who comes into contact with a patient can listen and dig deeper, especially if a patient is discussing problems they are having.”





1. National Cancer Opinion Survey, Harris Poll on behalf of the American Society of Clinical Oncology, 2020.
2. Wanchai A, Armer JM, Stewart BR. Complementary and alternative medicine use among women with breast cancer: a systematic review. 

2020; doi:10.1188/10.CJON.E45-55
3. Vickers AJ, Cronin AM, Maschino AC, et al. Acupuncture for chronic pain: individual patient data meta-analysis. 

 2012;172(19):1444-1453.
4. Memorial Sloan Kettering Cancer Center. A study comparing acupuncture with massage for pain and related symptoms in people with advanced cancer. Accessed December 8, 2020. 

https://www.mskcc.org/cancer-care/clinical-trials/19-341


5. Mishra SI, Scherer RW, Snyder C, Geigle PM, Berlanstein DR, Topaloglu O. Exercise interventions on health-related quality of life for people with cancer during active treatment. 

 2012(8):CD008465.
6. Courneya KS, Segal RJ, Gelmon K, et al. Six-month follow-up of patient-rated outcomes in a randomized controlled trial of exercise training during breast cancer chemotherapy. 

 2007(16):2572-2578.
7. Courneya KS, Sellar CM, Stevinson C, et al. Randomized controlled trial of the effects of aerobic exercise on physical functioning and quality of life in lymphoma patients. 

Integrative services offer modalities that can complement—not be used in place of—standard cancer treatments. 

Open Discussions Help Nurses Introduce Integrative Services

Getting an accurate family history can be one of the most challenging things that nurses face, according to Suzanne Mahon, DNSc, a clinical nurse specialist at SLUCare physician group, St Louis, Missouri.

“Part of the issue is our electronic medical record which will phrase the question generally, like, ‘Does anyone in your family have health problems?’” Mahon said. “That does not dig deep enough.”

When discussing family history, Mahon recommended asking specifically about siblings, then parents, then grandparents, then aunts and uncles, nieces and nephews, and cousins. By asking about each, it forces the patient to think more granularly.

Different familial cancer syndromes can present differently in families. Someone may be diagnosed with ovarian cancer, and another family member may have had a history of melanoma, whereas another may have had prostate cancer. Although the patient may not think all of those are related, different syndromes can lead to different combinations of disease, Mahon said.

It is also important to review a family history each time you see a patient, she added. “I worked with a breast surgeon who sent a patient to see us who had surgery four or five years ago,” Mahon recalled. “Originally, there was no family history, but when the patient was seen later for follow-up and the surgeon asked again about her family history, her cousin and sister had both since been diagnosed. Family history should never be stagnant.”

Getting an accurate family history can be one of the most challenging things that nurses face, according to Suzanne Mahon, DNSc, a clinical nurse specialist at SLUCare physician group, St Louis, Missouri.
 

Assessing Family History: A Moving Target

In her role as a genetic professional, Suzanne Mahon, DNSc, a clinical nurse specialist at SLUCare physician group in St Louis, Missouri, recently met with a 46-year-old single mother who had been diagnosed with metastatic triple-positive breast cancer and referred for genetic counseling and testing.

The woman had marketplace insurance and was denied coverage for genetic testing, but Mahon worked with the testing laboratory. Together with other compassionate care resources, the cost of testing was able to be covered. Testing revealed a CHEK2 mutation, a germline mutation that has been linked with up to a 37% lifetime risk for breast cancer.

“This information will guide her treatment decisions regarding use of bilateral mastectomies, as well as her long-term follow-up, such as more frequent colon, gynecologic, and thyroid screening,” Mahon said.

The patient had a 22-year-old daughter who was also concerned about her risk and sought genetic counseling. After 2 counseling sessions, the daughter decided to proceed with genetic counseling; however, she was uninsured. Again, compassionate care funding was used to cover the cost of her testing, which revealed she was negative for the CHEK2 mutation and at average risk for developing cancer. Now, Mahon said, the daughter can focus on her studies and caring for her mother.

Inherited genetic mutations play a role in between 5% to 10% of all cancers, according to the National Cancer Institute.

 Specific genetic mutations have now been associated with more than 50 hereditary cancer syndromes. The National Comprehensive Cancer Center (NCCN) offers guidelines on genetic testing organized by both disease and syndrome type.

More generally, though, nurses can look for several characteristics or situations that might point to genetic or familial high-risk situations, according to Mahon.

The first, and often easiest to spot, is the diagnosis of a cancer in a young person that typically occurs at an older age. For example, the diagnosis of breast or colon cancer at age 50 or younger. “Cancers that we usually see in 60- or 70 year-olds occurring in younger patients, that is always a red flag,” Mahon said.

Another group of people often flagged for possible genetic testing are those diagnosed with very rare tumors, such as male breast cancer, paragangliomas, or medullary thyroid cancer.

Specific characteristics of a cancer diagnosis might also point to the need for genetic testing. For example, people with colon cancers that show high microsatellite instability (MSI-high),3 a patient with more than 15 or 20 colon polyps in a lifetime, or a patient with a lot of atypical moles.

“These are not necessary malignant conditions, but when they occur they often can be the beginning of something or an indicator that something else is going on,” Mahon said.

Any or all of these factors might point to the need for genetic testing, and that is before even diving into a patient’s family history.

“This is the very first thing that nurses on the front line take in every type of medical practice,” said Wendy Brouwer, NP, of The University of Texas MD Anderson Cancer Center in Houston, who deals mostly with hereditary breast and ovarian cancers.

For example, the NCCN guidelines for high-penetrance breast cancers call for genetic testing among women aged 45 to 50 with one or more blood relatives with any breast, ovarian, or pancreatic high-grade prostate cancer. Testing is also indicated in those diagnosed at any age with one or more blood relatives diagnosed with breast cancer at age 50 or younger, or ovarian, pancreatic, or prostate cancer at any age, and in anyone with 3 or more breast cancer diagnoses in close blood relatives.

“These things do not always mean there is a mutation there, but it does mean that if there is one we don’t want to miss it,” Brouwer said.

Undergoing testing to look for genetic risk for cancer can be difficult, but there are ways in which nurses can help guide patients through the process.

One of the most important things to emphasize, according to Mahon, is that counseling is not testing.

“Counseling means that you are coming in to learn about your options,” she said. “We emphasize that the counseling appointment is not where testing is done.”

Mahon has seen a wide variety of outcomes after genetic counseling. Some patients who were intent on getting testing done decide to delay after exploring their options. Others who were set against testing learn more and ask for tests to be done immediately.

It is also important for nurses not to trivialize testing and what it could mean to the patient and their families. Explain that it is OK for them to be scared. It is ok for them to be hesitant. Those feelings are normal.

Nurses can also encourage patients to bring another family member to the genetic counseling and testing appointments. Sometimes dealing with a cancer diagnosis and the burden of having to share information about familial risk can be too much for the patient alone to take on, Mahon said.

Finally, Brouwer said, patients may respond to the information that the results of their genetic testing could not only affect treatment decisions for their care, but could help increase prevention of future cancers in themselves and their family members.

Mahon said that she will not conduct genetic testing for any mutations that are not considered “actionable,” meaning knowledge about the mutation can affect treatment decisions or future cancer prevention.

Women who have BRCA 1/2 mutations and are diagnosed with breast or ovarian cancer may qualify for treatment with PARP inhibitors.

Patients with Lynch syndrome, an inherited cancer syndrome associated with increased risk for colon and other cancers, tend to have higher rates of MSI-high tumors, which may respond to immunotherapy with pembrolizumab.

As genetics in cancer care grows, so will the role of the oncology nurse.

Leah Lawrence