Last week, a patient asked me to be removed from their care team for not disclosing my COVID-19 vaccination status and shocked does not begin to accurately describe my reaction. As an expert oncology nurse with more than 2 decades of service under my belt (or scrubs), I have never had a patient ask me about my medical history. I was so taken aback that I found myself stumbling over my words. After finally spitting out an awful, unrehearsed retort about policies and personal rights, she informed me that she was not comfortable under my care. I gasped in disbelief. “I am a great nurse, and my patients love me!”, I wanted to reply, but I simply apologized and honored her wishes. Then, I began to ponder the need for professional privacy.

Despite where someone stands on the COVID-19 vaccine debate, it is hard to deny that it is awkward when a patient asks, "are you vaccinated?". Of course, as vaccine mandates nip at the heels of every healthcare provider, answering "yes" to this seemingly intrusive question may be the only acceptable answer. In the meantime, however, it is crucial for nurses to keep their medical choices private and to politely tell patients to mind their own business.

Although I understand their reasoning, I cringe every time I hear a nurse use HIPAA to protest being asked about their vaccination record. It is not a HIPAA violation for patients to ask their healthcare provider if they have been vaccinated against COVID-19.

This federal law protects privacy by defining 

 health information is protected, but it does not restrict patients from asking their nurse (doctor, medical assistant, phlebotomist, etc.) about their medical history.

However, health care providers are not required to answer any questions about our health choices, nor should we. It's that simple.

Not so straightforward, admittedly, is whether organizations can legally adorn their employees with badges and stickers that exploit their vaccination choice. The answer should be a solid no, but it's more like "no-ish". According to the Equal Employment Opportunity Commission (EEOC), vaccination status is considered confidential.

 So, although being forced to bear the scarlet letters “vaccinated” or “unvaccinated” on your scrub top is unlawful, we may be required to have an indiscreet sticker placed on our badge or wear a wristband that affirms our compliance with hospital policy.Why do we need visible evidence of our conformity? Hospital administrators explain that it allows for quick and clear assurance that staff is following safety rules. For example, if an associate is not wearing a mask, a nonchalant glance at the required "accessory" confirms their immunization status, and the proper steps can ensue.

Although there is value in this approach, I wonder about the ramifications for staff who do not yield the sign of obedience. Will judgement occur once patients catch on to the purpose of a covertly placed sticker? Backlash by coworkers has already been reported by nurses who do not want the vaccine. Even more troublesome could be the voluntary bearing of pins that exclaim in all capitals “I’M VACCINATED!”. As if healthcare workers weren’t under enough pressure, we now must compete with one another in garnishments that seem to establish two separate sides, the uncompliant anti-vaxxers versus the selfless vaccinated conformers. Why can’t simply being employed provide enough proof that we are following our institution’s policies, therefore, providing safe medical care? 

Although it is uncomfortable to have our personal medical decisions scrutinized by patients, we must remind ourselves to understand their intentions. Patients are not asking these questions to be nosy or rude but rather to feel safe under our care. Yet, now, more than ever, political views are influencing people’s medical decision making - creating a slippery slope for nurses to navigate.

Therefore, after much rehearsal, here is my new spiel if asked about my vaccine status (you’re welcome to use it as well) - "Mr. Smith, although my medical history is between my care provider and me, I understand that you want to feel safe today (tonight), so I assure you that I follow my organization's policies for COVID-19 safety and that you are in trusted hands.", then I will quickly place my stethoscope in my ears!

Even if you are proud of being vaccinated, I urge you to set clear precedence for privacy with patients, and here's why.

We already share so much with those we serve: our time, energy, healing, and devotion. So, whether you are in line to get the vaccine or in a rally to protest it, nurses should stand together to protect our privacy by maintaining professional boundaries with patients. An unknown author wrote, "I set boundaries not to offend you but to respect myself." Today's inquiry may be about our vaccination status, but tomorrow’s question could involve our mental health history, finances, or social status. The list goes on.

Therefore, in addition to politely telling our patients to mind their own business, it is crucial to strip ourselves of the decorative adornments that give clues to our personal health choices. By drawing a clear line now, maybe we can prevent crossing it in the future.

Is it a HIPPA violation to ask for proof of vaccine status? HIPPA Journal. May 25, 2021. Accessed September 29, 2021. 

https://www.hipaajournal.com/is-it-a-hipaa-violation-to-ask-for-proof-of-vaccine-status/

What you should know about COVID-19 and ADA rehabilitation act and other EEO laws. U.S. Equal Employment Opportunity Commission. Updated May 28, 2021. Accessed September 29, 2021. 

https://www.eeoc.gov/wysk/what-you-should-know-about-covid-19-and-ada-rehabilitation-act-and-other-eeo-laws

Articles

An oncology nurse with over 20 years of experience ponders the necessity of professional privacy in the workplace -particularly in light of COVID-19 vaccinations. 

Opinion: Nurses Need to Stop Disclosing Their Vaccination Status to Patients 

Particularly for women, breast cancer remains the highest cancer with an estimated 281,550 new cases in 2021 alone. While the survival rates for breast cancer have overall improved due to advancements in treatment and clinical trials, Black, Indigenous, People of Color (BIPOC) still represent the population with the highest death rates among all demographics.

BIPOC patients diagnosed with breast cancer often face additional barriers–like health disparities, health literacy, and lack of knowledge of the psychosocial effects–in comparison to other ethnic groups. Such barriers are not often addressed in a medical setting, which can contribute to BIPOC’s mortality rate and poorer outcomes.

Not only do BIPOC have a higher mortality rate in comparison to their White counterparts, they are also more likely to be diagnosed at a younger age, and at a more advanced and/or aggressive stage. There are many reasons for this.

One factor is due to the lack of access to resources, which can prevent BIPOC individuals from having their cancer detected early, receiving quality care, or experiencing a delay in their treatment. BIPOC’s limited access to care is common within low income, predominantly BIPOC neighborhoods as well.

Furthermore, it has been documented BIPOC are not effectively represented in studies in various treatment options for breast cancer, especially in clinical trials. This is essential as the genetic makeup of tumors in BIPOC can differ in comparison to other ethnicities, including triple-negative breast cancer.

So, while advancements in treatment among the White population have shown to be successful, less is known about how the same or similar treatments would positively impact BIPOC, including whether other remedies are needed.

Difficulties with understanding cancer treatment and medical terms are common among all patients with cancer. However, it is even more evident among BIPOC due to various social-economic factors, such as educational background. Specifically, with patients with breast cancer, BIPOC reported they received limited information about their treatment side effects, including infertility.

BIPOC patients further expressed not feeling comfortable asking questions with their medical team as they are answered in terms they do not comprehend. Lack of clear communication can additionally make BIPOC distrustful of their medical teams, which then results in them seeking information that might be inappropriate or incorrect elsewhere. Additionally, patients who feel they do comprehend their treatment can feel overwhelmed, and then are not able to make informed decisions.

Lastly, BIPOC patients are often not educated on alternative treatment options including clinical trials. As a consequence, BIPOC may be resistant to medication/treatment compliance or lack the willingness to participate in studies that can assist with advancements in treatments among the BIPOC community.

People diagnosed with breast cancer experience similar psychosocial effects as others with cancer, including depression and anxiety. However, in the BIPOC population, such effects are often ignored.

In a study conducted by Lewis et al, they found that BIPOC’s depression are “often under-recognized and under-treated.” They further noted how such acknowledgements would make an impact in a BIPOC’s cancer journey and quality of life.

Such studies highlight the lack of emotional support services BIPOC receive during their treatment, including providing them with the tools to help them navigate through their cancer experience. Often, there are misconceptions about how BIPOC cope with cancer. This can impact how BIPOC patients cope with their diagnosis, including limiting their access to resources such as counseling or support groups, and their willingness to participate with follow-up after treatments.

If BIPOC patients find their cancer experience traumatic, it may make them reluctant to engage in follow-up, which is significant to prevent and minimize a reoccurrence.

There are ways medical professionals can begin to help BIPOC patients with breast cancer navigate through their cancer journey as well as cope with the challenges they endure:

Listen: It makes a difference when BIPOC feel they are being heard and validated by their medical team. There are numerous stories within the BIPOC communities of how often providers dismissed their feelings when they expressed their concerns, especially feelings such as hopelessness depression or their experience with side effects.

Educate: Providing an environment for open-ended questioning and not rushing a patient during appointment can help a BIPOC develop an overall better understanding of their diagnosis and their options. They are then able to make a more educated and informed decision.

Understanding Certain Stereotypes:Sadly, there are stereotypes against BIPOC women that affect their care. These include being seen as very “strong “or “angry/aggressive.” Many do not understand how BIPOC’s appearance of strength or anger are rooted in having to adapt often to various struggles and disparities throughout the course of their lives. This appearance, sadly masks vulnerable feelings that providers fail to address. Be mindful when using certain words including telling a patient they are strong or brave. While such statements are intended to inspire hope, they can also dismiss someone’s feelings of depression. It is important to provide a place where patients feel comfortable with admitting they need help or support. There is a useful workshop series from Living Beyond Breast Cancer, which has some insight to BIPOC’s struggles with breast cancer for reference.

Familiarize yourself with available resources:This would include databases for clinical trials and psychosocial support such as support groups and counseling services as well as encouraging patients to utilize them. Also, be mindful not to immediately push them to see a social worker or financial navigator. Validate their feelings and hear their concerns to direct them to the appropriate resources.Some resources for support include CancerCare, Triple Negative Breast Cancer Foundation, Black Cancer, Touch, The Black Breast Cancer Alliance, and Susan G Komen Foundation.

The more people who are aware of BIPOC’s struggles with breast cancer, the more their barriers can be addressed. Decreasing such barriers can make a significant difference to increase the survival rates for BIPOC with breast cancer.

1. Cancer stat facts: cancer disparities. National Cancer Institute Surveillance, Epidemiology, and End Results Program. https://seer.cancer.gov/statfacts/html/disparities.html

2. Health Equity Initiative. https://www.komen.org/about-komen/our-impact/breast-cancer/health-equities-initiative/

3. Yedjou, Clement G et al. “Health and Racial Disparity in Breast Cancer.” Advances in experimental medicine and biology vol. 1152 (2019): 31-49. doi:10.1007/978-3-030-20301-6_3

4.Lewis, Pamela E et al. “Psychosocial concerns of young African American breast cancer survivors.” Journal of psychosocial oncology vol. 30,2 (2012): 168-84. doi:10.1080/07347332.2011.651259

5.Rust, Connie, and Cindy Davis. “Health Literacy and Medication Adherence in Underserved African-American Breast Cancer Survivors: A Qualitative Study.” Social work in health care 50.9 (2011): 739–761. Web.

6.Sheppard, Vanessa B et al. “Correlates of depressive symptomatology in African-American breast cancer patients.” Journal of cancer survivorship : research and practice vol. 7,3 (2013): 292-9. doi:10.1007/s11764-013-0273-y

BIPOC patients diagnosed with breast cancer often face additional barriers–like health disparities, health literacy, and lack of knowledge of the psychosocial effects–in comparison to other ethnic groups.

Barriers in BIPOC Populations Diagnosed With Breast Cancer

Carolyn Hayes, PhD, RN, NEA-BC, chief nursing officer for Oncology Services at RWJBarnabas Health and Rutgers Cancer Institute of New Jersey, has been selected by the American Academy of Nursing (AAN) as a 2021 Fellow. Induction into the Academy is a significant milestone in a nurse leader’s career in which their accomplishments are honored by their colleagues within and outside the profession. Fellows are selected based on their contributions and impact to advance the public’s health.

The AAN is an honorific society that recognizes nursing's most accomplished leaders in policy, research, practice, administration, and academia. Academy Fellows, from nearly 40 countries, hold a wide variety of roles influencing health care. Fellows contribute their collective expertise to the Academy, engaging with health leaders nationally and globally to improve health and achieve health equity by impacting policy through nursing leadership, innovation, and science.

Dr. Hayes has experience in ensuring the continuity of care across the ambulatory and acute care continuum for oncology patients in unique collaborative settings, including those that bring together a National Cancer Institute-designated Comprehensive Cancer Center and large health care system in an academic setting. As a nursing leader, Hayes is responsible for and has oversight of nursing at Rutgers Cancer Institute and oncology service line-related nursing across RWJBarnabas Health, ensuring nursing excellence throughout an integrated cancer care model.

“Induction into the American Academy of nursing as a Fellow is more than just recognition of one's accomplishments within the nursing profession,” notes RWJBarnabas Health Executive Vice President and Chief Nursing Officer 

. “It represents the strength of the nursing and health delivery system, shaping healthy environments and enhancing the quality of patients’ lives, all of which Dr. Hayes exemplifies in her work at RWJBarnabas Health and Rutgers Cancer Institute.”

“Through her nursing leadership, Dr. Hayes has been instrumental in enhancing the role of Rutgers Cancer Institute of New Jersey and RWJBarnabas Health as a leading oncology authority in our region,” shares Rutgers Cancer Institute Director 

, who is also senior vice president of oncology services for RWJBarnabas Health. “We congratulate Dr. Hayes for achieving this great honor and look forward to her continued success in the development and management of comprehensive patient care, research and teaching.”

“I am pleased and excited that Dr. Hayes is being recognized by the American Academy of Nursing in this way,” said 

, professor and dean of Rutgers School of Nursing. Among seven New Jersey-based nurses elected to this highly prestigious organization this year, our Rutgers-affiliated colleagues including Dr. Hayes truly exemplify our school's motto ‘Excellence in Action.’”

“Becoming a Fellow in the American Academy of Nursing is a great honor for me and signifies that my work at RWJBarnabas Health and Rutgers Cancer Institute will have impact on the profession of nursing and the nation’s health,” notes Hayes, who also holds a faculty appointment as an associate professor in the Division of Nursing Science at Rutgers School of Nursing. “As a new fellow of the AAN, I look forward to working with nurse leaders across the world to enhance the quality of nursing practice, research, education and impact on health care.”

Prior to joining Rutgers in 2019, her leadership included co-founding and serving as president and executive director of the Greater Boston Nursing Collective and associate chief nurse for Oncology, Medical and Integrative Nursing at Brigham & Women’s Hospital and Dana-Farber Cancer Institute in Boston. Her clinical and leadership practice, teaching, research, and publications have been focused on integrative nursing, clinical ethics, leadership, and end-of-life nursing care.

Inductees will be recognized for their significant contributions to health and health care at the Academy’s annual Health Policy Conference, taking place on October 7 through 9. This year’s conference and induction ceremony will be offered in a hybrid format, allowing attendees to participate either in-person or virtually.

This article was originally posted on RWJBarnabas Health as 

"RWJBarnabas Health and Rutgers Cancer Institute of New Jersey Leader Selected to be Inducted as a Fellow of the American Academy of Nursing"

 Carolyn Hayes, PhD, RN, NEA-BC, chief nursing officer for Oncology Services at RWJBarnabas Health and Rutgers Cancer Institute of New Jersey, has been selected by the American Academy of Nursing (AAN) as a 2021 Fellow

Rutgers Chief Nursing Officer Selected to be American Academy of Nursing Fellow

Cancer patients face many obstacles to care, including financial, psychosocial, and practical barriers. Health disparities also prevent patients from receiving optimal treatment. In order to be an effective case manager, health care professionals must have a clear understanding of the definition of this role, the overall benefits of case management, and how to assess patients’ needs. The priority must be to put the patient first in order to improve outcomes. Addressing inequities in access to care is essential to adequately enhance a patient’s wellbeing.

Case Management Within Professional Practice

According to the Commission for Case Manager Certification, case management is a "collaborative process that assesses, plans, implements, coordinates, monitors, and evaluates the options and services required to meet the client's health and human service needs. It is characterized by advocacy, communication, and resource management and promotes quality and cost-effective interventions and outcomes."

Nurses, social workers, and other professionals are including case management in their role with patients in order to provide efficient service. Regardless of professional background, case managers use a patient-centered and strengths-based approach. Effective engagement puts the patients’ needs first and identifies the most beneficial resources available.

Professional case managers take on many responsibilities in their pursuit of improving patient outcomes. They take the patients’ beliefs, interests and values into consideration, while evaluating how to best support their desired goals. After conducting a needs assessment, case managers will determine how to best serve the patient. Planning and implementation stages are crucial in moving forward with completing and evaluating achievements.

Additionally, advocating for patients is at the forefront of case management, and is included in every component of the case manager’s intervention. Case managers have the ability to foster relationships with patients, while providing resources that best meet their needs. Patients may have complex circumstances, and this warrants a more comprehensive approach to address the whole person.

Overall, interventions have a positive impact on cancer patients and gives them the tools they need to overcome challenges and improve outcomes.

 When considering financial burdens, for example, patients often report that including case management services was successful in easing anxiety related to costs.

Case management improves patient quality of life

and increases empowerment and self-efficacy.

 Cancer patients may face stressors that negatively impact their psychosocial, financial, physical or social functioning. These risks are even greater if a patient is isolated and without support. These effects can be overwhelming and long term. Including case management helps patients return to prior levels of functioning.

Health inequities are examples of other barriers that can adversely effect a cancer patient’s experience. Case managers must make it their priority to address these heath care disparities. This is accomplished by developing methods to either eliminate or minimize the impact they have on their health care.

Case managers can promote policies that support equality, fight for patients’ rights and facilitate communication to be a strong advocate.

All health care professionals must demonstrate a culturally competent and inclusive practice to effectively address disparities. This can be done through the creation of a safe environment, free of judgment and oppression. We play a critical role in reducing inequalities and overcoming barriers to care for all people regardless of race, ethnicity, age, socioeconomic status, ability, gender identity or sexual orientation. Case managers strive to support all efforts to advocate for cancer patients and find resources that are culturally and linguistically appropriate.

A well-rounded approach to case management in cancer care will ultimately benefit the patient in a variety of ways. An experienced case manager includes strategies to address barriers and disparities in all aspects of their work. Incorporating these skills will promote better coordination of care and access to resources, while improving the patient’s ability to cope with cancer. With these objectives in mind, case management will continue to have a significant role in meeting the needs of patients.

 is Director of Specialized Programs at Cancer

 is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Our comprehensive services include case management, counseling and support groups over the phone, online and in-person, educational workshops, publications and financial and co-payment assistance. All Cancer

 services are provided by master’s-prepared oncology social workers and 

Commission for Case Manager Certification. 

Definition and Philosophy of Case Management 

https://ccmcertification.org/about-ccmc/about-case-management/definition-and-philosophy-case-management

2. Harkey J. Case management at the intersection of social work and health care. 

3. Scherz N, Bachmann-Mettler I, Chmiel C, et al. Case management to increase quality of life after cancer treatment: a randomized controlled trial. 

. 2017:17(1):223. doi:10.1186/s12885-017-3213-9

4. Yin YN, Wang Y, Jiang NJ, Long DR. Can case management improve cancer patients quality of life?: A systematic review following PRISMA. 

. 2020;99(40):e22448. doi:10.1097/MD.0000000000022448

5. Wu C, Bannister W, Schumacker, P, Rosen, M, Ozminkowski, R, Rossof A. Economic value of a cancer case management program. 

 2014: 10(3): 178-186. doi: 10.1200/JOP.2014.001384

Case managers can ease health inequities and barriers to care.

https://www.reliasmedia.com/articles/144745-case-managers-can-ease-health-inequities-and-barriers-to-care

In order to meet the multifaceted needs of cancer patients, the role of case management in cancer care has recently grown.

The Role of Case Management:  Improving Outcomes and Addressing Health Disparities in Cancer Care

Even as cultural attitudes shift, LGBTQ+ individuals still face discrimination in health care settings. These communities tend to have higher incidence rates for certain cancers, and on top of these concerns, older individuals must also navigate issues related to aging and the ongoing pandemic, compounding the complexity of their concerns.

Research by the National LGBT Cancer Network has long demonstrated that the risks of being diagnosed with certain cancers are disproportionately higher in LGBTQ+ communities in comparison to their heterosexual counterparts. This research also shows that health outcomes for certain cancers are poorer in LGBTQ+ communities.

The reasons for LGBTQ+ health care disparities are complex but unequivocal, founded in many socio-economic and cultural factors. These include higher rates of smoking and vaping; more obesity in the lesbian and female bisexual communities; broader acceptance and use of illegal substances and alcohol, especially coupled with sexual activity, in the gay male community; and greater numbers of people living with chronic HIV/AIDS.

Poorer health outcomes can be attributed to a lack of training focused on the specific health care needs of LGBTQ+ communities, who may also be affected by homophobic and trans-phobic discriminatory language and attitudes, whether from a health care professional or as part of a health care system’s policies. Some patients may also be harassed, neglected, or denied treatment outright based on providers’ cultural or religious beliefs.

Non-disclosure of sexual orientation is especially prevalent in the older and senior LGBTQ+ communities, and can be compounded by minimal or complete absence of familial support. They may also lack culturally competent home care, rehabilitation, or nursing home services. According to recent independent surveys by the Human Rights Commission (HRC), the Centers for Disease Control (CDC) and Advocacy and Services for LGBT Elders (SAGE), there is consensus that LGBTQ+ persons affected by cancer have an increased risk of severe illness or death if diagnosed with COVID-19. 

For older and senior LGBTQ+ communities affected by cancer and the coronavirus, these disparities are magnified, resulting in greater experiences of fragility, distress, and hopelessness.

According to a report from the Centers for Disease Control and Prevention (CDC) released in February 2021, gay, lesbian, and bisexual people in the United States have higher rates of self-reported conditions associated with severe COVID-19 complications than heterosexual people. These include asthma, heart disease, obesity, kidney disease, stroke, and cancer. Within these populations, Black and Hispanic individuals are particularly vulnerable.

Older persons affected by cancer are less likely to have long-term and stable partnerships than their heterosexual counterparts. They are more likely to have reduced or absent familial interactions, a smaller social support network and a greater need for professional home care, versus unpaid care from a friend or family member. They also often have already experienced significant loss of peer relationships as a result of HIV/AIDS, which diminishes the possibility of creating future community. Those who do have strong relationships face issues associated with aging, including the death of partners and friends.

Finally, many older LGBTQ+ persons with cancer grew up with covert and overt messages that their lifestyles and/or bodies were wrong, unhealthy, and diseased. Having survived stigma and the HIV/AIDS epidemic, coping with another public health crisis has brought up feelings of disorientation and displacement. As stated by a participant of a support group for gay men with cancer at Cancer

, “I was rejected by my family. I have already survived one pandemic where I lost all those closest to me. [I] have been, for years, trying to live with cancer and now am facing another pandemic. I give up.”

As the world shifted, ever so suddenly, in March of 2020 as a result of COVID-19, mandates for sheltering in place, quarantining and social distancing left older LGBTQ+ persons in even greater isolation than before, with few outlets for support and assistance.

In the words of Movement Advancement Project (MAP), “As social isolation reaches crisis levels, financial resources dry-up, and the safety net is stretched thin, many … LGBT older persons remain estranged from family and religiously affiliated institutions on which they [relied] before and during crises. Consequently, we are witnessing an exponential increase in LGBT older people relying on LGBT aging organizations and others whom they trust to deliver life-saving help. And, as a result, the COVID-19 pandemic is uniquely impacting not only LGBT older people, but also the organizations that serve them.”

In a recent article on these aging populations and COVID-19, the Association of Health Care Journalists suggests ways to achieve better outcomes. These include education and outreach to address specific needs, working to make policies inclusive to chosen families rather than just biological ones, using correct gender and pronoun language, and understanding that medical inclusion. They call particular attention to the mental health of these individuals, who may be impacted by feelings of isolation and trauma during the pandemic.

Whether during the coronavirus pandemic or after, providers who wish to better serve older individuals in LGBTQ+ communities must first meet patients where they are. This means recognizing that care for an LGBTQ+ individual is not “one size fits all.” As with any underserved population, it is critical to welcome voices from LGBTQ+ communities to improve access to care, as well as to improve the quality of that care. There is no doubt that eliminating health care disparities is a worthwhile goal—and the journey to achieving it begins with openness and with humility today.

Human Rights Campaign. Research on LGBTQ People and the COVID-19 Pandemic. 2021. 

https://www.hrc.org/resources/research-on-lgbtq-people-and-the-covid19-pandemic

Schmidt, S. LGBTQ people face higher COVID-19 risks, but no one knows the true toll on the community. Feb. 17, 2021

https://www.washingtonpost.com/dc-md-va/2021/02/17/lgbtq-covid-cdc/

SAGE. SAGE’s COVID-19 Response. December 7, 2020. 

https://www.sageusa.org/sages-covid-19-response/

MAP, SAGE, and Center for Americna Progress. LGBT Older People, and COVID-19.May 2020. 

https://www.lgbtmap.org/file/2020%20LGBTQ%20Older%20Adults%20COVID.pdf

Seegert L. COVID-19 is hitting older LGBTQ adults especially hard. April 22, 2020. 

https://healthjournalism.org/blog/2020/04/covid-19-is-hitting-older-lgbtq-adults-especially-hard/

The reasons for LGBTQ+ health care disparities are complex but unequivocal, founded in many socio-economic and cultural factors. 

Cancer, COVID-19, and Aging in LGBTQ+ Communities

Ironically, the World Health Organization designated 2020 as the International Year of the Nurse and Midwife

...and then came a global pandemic. COVID-19 has shifted lives all over the world, but the movement has been especially pronounced for frontline oncology nurses. And as a result, this special group of committed professionals has learned to stand in the gap.

Oncology nurses enter the lives of patients and caregivers during a most difficult time — after a cancer diagnosis – therefore accepting equally difficult expectations for their care. While 46% of Americans reported feeling work-related stress,

 the percentage of nurses feeling the same is understandably much higher. It is this stress, which if unresolved, can deteriorate one’s physical and other dimensions of wellness — mental, social, and occupational.

During this COVID-19 pandemic, cancer caregivers are not allowed to accompany their loved ones into infusion centers during treatments or into hospitals during inpatient stays. This forced reality could be scary and isolating to both the oncology patient and caregiver. Therefore, oncology nurses, through their own psychosocial disturbances, are being called to stand in the gap between patients and families by providing unwavering comfort and reassurance to patients while keeping caregivers updated. This privileged position can come with its own conscious or subconscious stress for nurses, atop the amplified COVID-19 pandemic stresses that nurses bear in their personal and professional lives.

Now oncology nurses are experiencing high levels of stress, anxiety, post-traumatic stress disorder, and even burnout on top of new pandemic pressures. But most continue to uphold their commitment to providing quality patient care while remaining loyal to their colleagues by continuing to show up. This is counter to the traditional notion that added stress can push nurses to leave patient care and explore less stressful career endeavors, implicitly adding to the nursing shortage. Now more than ever, in light of COVID-19, we have to ensure oncology nurses have the necessary space, support, and tools to decrease stress and optimize their health and wellness.

To this end, nurse-led wellness mentorship initiatives could focus on empowering oncology nurses to implement mindset shift strategies that will transform their response to stressors and optimize their personal health and wellness. Utilizing a systematic method or framework to empower nurses to prioritize stressors, strategize plans to optimize their lives — a wellness mentorship initiative will provide support, accountability, and community by virtual facilitation and the integration of pre-recorded bite-size videos around promoting a growth mindset, resilience, stress management strategies, and wellness.

But today I challenge you twice over — to personally check in with an oncology nurse AND explore the idea of developing a formalized systematic way that can both support and empower nurses to overcome their own stress. There are some gap-fillers – waiting for YOU.

1. World Health Organization (2020). Year of the Nurse and the Midwife 2020. https://www.who.int/campaigns/year-of-the-nurse-and-the-midwife-2020 _Accessed December 3, 2020.

2. The American Institute of Stress (2020). Workplace Stress. https://www.stress.org/workplace-stress_ Accessed December 3, 2020. Global Wellness Institute (2020). What is Wellness? https://globalwellnessinstitute.org/what-is-wellness/ Accessed December 3, 2020

3. Ford, S. (2020). Global nursing body issues warning on nurse mental health during Covid-19 crisis https://www.nursingtimes.net/news/mental-health/global-nursing-body-issues-warning-on-nurse-mental-health-during-covid-19-crisis-30-04-2020/ Accessed December 3, 2020.

Now oncology nurses are experiencing high levels of stress, anxiety, post-traumatic stress disorder, and even burnout on top of new pandemic pressures. But most continue to uphold their commitment to providing quality patient care while remaining loyal to their colleagues by continuing to show up.

Oncology Nurses: Standing in the Gap

The COVID-19 pandemic has shifted the personal and professional lives of individuals around the world. Stress is an inevitable part of this shift. This is especially true for cancer caregivers, a population the National Cancer Institute calculated at 2.8 million — and growing – in 2016. Prior to the COVID-19 pandemic, 50% of cancer caregivers reported high emotional stress related to caregiving and 43% admitted to wanting help managing emotional and physical stress and making end-of-life decisions.

An unexpected cancer diagnosis disrupts the lives of patients as well as their caregivers. Cancer caregivers regularly provide support including, but not limited to, emotional support (98%), attending medical appointments (96%), help with decision-making (82%), coordinating medical care (79%), providing transportation (80%) and help managing finances (74%) while simultaneously dealing with their own emotions and stress.

Despite their essential role in a patient’s cancer journey, cancer caregivers are often excluded from the patient-centric resources and support services they encounter.

Oncology nurses and nurse navigators can play a pivotal liaison role between cancer caregiver and resources. Nurses usually provide episodic support during the patient’s visit; however, now more than ever, it is imperative that oncology nurse and nurse navigators are aware of sustainable cancer caregivers resources and support services. Empowered with a framework for assessing cancer caregivers for emotional and physical stress, Nurses can make a difference. The 

 is one simplistic way healthcare professionals can begin this work:

: Provide time and space to slow down on task focus activities

: While dedicating your full attention to the cancer caregiver, assure the caregiver that he or she is an essential part of the team and their well- being is important.

: Ask direct, open-ended questions about her or his feelings, struggles and support system.

 During every encounter, discuss, refer and encourage use of relevant support resources available to the provide cancer caregiver at that time.

Cancer caregivers are essential members of the health care team and can greatly impact the trajectory of a patients cancer journey, it is essential that they are provided the tools and services necessary to maintain their mental and physical health.

) Informal Caregivers in Cancer: Roles, Burden, and Support (PDQ®)—Health Professional Version

https://www.cancer.gov/about-cancer/coping/family-friends/family-caregivers-hp-pdq#_225

https://www.cancersupportcommunity.org/caregivers

Many Cancer Caregivers Report Feeling Unprepared for Caregiving Challenges

https://www.cancer.gov/news-events/cancer-currents-blog/2016/caregivers-needs-challenges

PEAR Method Can Help Assess Cancer Caregivers

Lauren Chatalian, LMSW, Women & Children’s Program Manager at CancerCare

At the start of the COVID-19 outbreak, it was unclear how cancer treatments would transpire and how the length of time the pandemic would be impacting those diagnosed with cancer. Individuals diagnosed with cancer have faced many obstacles in receiving care. While COVID-19 continues to present much uncertainty for many people, those diagnosed with breast cancer are faced with unique challenges in navigating continued treatment.

Because of the pandemic, people diagnosed with breast cancer may have experienced adjustments in their treatment regimen. Some may have begun neoadjuvant treatments due to postponed surgeries, while others have transitioned to oral treatments rather than receiving consistent infusion treatments at one’s treatment center.

 Clinical trials have also been adjusted with enrollment briefly paused. However, those who were in a clinical trial were able to continue to receive treatment (most likely delivered to one’s home)

. While many precautions have been put in place, many concerns have arisen in accessing necessary cancer care. Treatment approaches are on a case-by-case basis, as each diagnosis may exhibit different concerns

. It is important for patients to know that research continues and medical professionals are exploring ways to balance the concern of breast disease progression and COVID-19.

Unfortunately, due to COVID-19, many surgeries and procedures have been postponed. This specifically causes concern for individuals diagnosed with breast cancer who may have been scheduled for a lumpectomy or mastectomy. When someone is newly diagnosed with breast cancer and awaiting tumor removal, it may be difficult to comprehend the precautions necessary to ensure that surgical staff can continue to provide these services. While procedures have been termed elective, these surgeries may not appear to be elective for those diagnosed. They are still medically necessary and, in some cases, time sensitive even if they are not considered emergencies. Nevertheless, precautions must be taken. Surgical procedures and recovery may be different than initially expected due to COVID-19

Reconstructive surgery procedures may continue to be delayed until the pandemic is over. Preparing patients for these possible changes can help to alleviate uncertainty. Open communication and continued education about one’s diagnosis as well as COVID-19 is particularly vital during this time.

Individuals diagnosed with breast cancer may also be unsure if going into the hospital or treatment center poses a risk to their health. During a time of heightened anxiety, it is necessary to inform patients who they can contact if any concerns arise. For example, if it is possible for a patient to experience skin irritation due to radiation, and it could be useful to know ahead of time how to treat this or what specific circumstances require medical attention. If there is someone on the medical team that could be the point person for a patient to contact, this may offer a sense of comfort and reassurance throughout a breast cancer treatment, especially during COVID-19. There may be a nurse helpline through one’s medical insurance that could also be helpful.

Telemedicine, or telehealth, has become increasingly useful throughout COVID-19 to provide remote health care services. If patients express hesitancy, explaining the benefits of this option could provide a new perspective. Telehealth could offer a more flexible schedule, limit physical contact with others, and reduce the stress of traveling to and from medical appointments. In addition, explaining how to prepare for these appointments, as well as sharing what an appointment entails, may help to put a patient’s mind at ease. Step-by-step instructions for the video platform being used may be requested, and so healthcare professionals should consider having reading material on hand that patients can refer to, such as 

It may be helpful to consider a patient’s worries and stress. Throughout the pandemic, individuals diagnosed with breast cancer may experience increased feelings of isolation and a limited sense of community. Strong emotions when first diagnosed with breast cancer may be amplified throughout the pandemic. Oncology support staff may engage with individuals diagnosed with breast cancer regularly; however, this is a very new experience for many patients. Whether an individual is diagnosed during the pandemic or is navigating ways to continue treatment throughout these difficult times, patients are attempting to manage several stressors and may feel overwhelmed. It is imperative for patients to have a sense of security with their medical team to feel supported throughout his or her treatment.

As those impacted by a breast cancer diagnosis are faced with much uncertainty during COVID-19, financial strain may be an additional and powerful concern for many individuals. The loss of a job or loss of medical insurance poses increased stress for those in the cancer community. Connecting patients with the financial department, hospital social worker or patient navigator at the treatment center can help patients and families become aware of options available to them. Non-profit organizations, such as 

, may be helpful in connecting with financial resources, support services and educational workshops, including 

. During a time when people feel increased loneliness, connecting with others who may understand what he or she may be experiencing can be extremely beneficial. This could be through support groups, peer matching or individualized counseling. It is important to continue to address the emotional and practical concerns of a breast cancer diagnosis throughout one’s treatment and care, especially during a pandemic.

Citgez, B., Yigit, B., Capkinoglu, E., & Yetkin, S. G. (2020). Management of Breast Cancer during the COVID-19 Pandemic. 

Bauchner H, Fontanarosa PB. Randomized Clinical Trials and COVID-19: Managing Expectations. 

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Journal of the American College of Surgeons

While COVID-19 continues to present much uncertainty for many people, those diagnosed with breast cancer are faced with unique challenges in navigating continued treatment.

Navigating Breast Cancer Care During a Pandemic

In today’s COVID-19 pandemic atmosphere, oncology patients and nurses are under added stress. When patients are admitted, the nurse caring for them needs information related to their cancer diagnosis readily available. Online apps can help them in their research. The patient can also log on to the app and view as well as engage with the platform.

I have had numerous patients who were otherwise healthy and then received a sudden diagnosis of cancer which unfortunately had already spread. The primary nurse caring for these patients is a wealth of information regarding their treatment plan. She/he can provide links to patients for these cancer apps. This could be generalized to patients across the board with different types of cancers as well.

As a nurse who has worked many years in the field, there is so much information available that patients can access. In the old days, there were very few resources for RNs, and I don’t remember that much typed written patient information.

On a personal note, I have worked with nursing students in their other role as CNAs (certified nursing assistants), and all their materials are online. In Miami, where I live, there is a Simulation Hospital at Miami Dade College, where nursing students have their virtual patient experience.

Chances are that patients have their phone with them. Using their phone to help patients learn about their cancer is a time saver and very convenient. Patients are overwhelmed with new corona virus information symptom information already. The elephant in the room is their cancer diagnosis. Nowadays current practice has patients tested for COVID-19 before being admitted to the oncology unit. Patients are alone in the hospital now due to visitor restrictions. Accessing these apps is another way they can maintain their connection to the world. These apps will help nurses and patients stay current with information related to their underlying diagnosis.

There are three apps relevant to this trend. They are: CareZone, Belong/Beating Cancer Together, and Cancer.Net. Mobile.

The app that has been downloaded one million times is CareZone (

). Patients can look at it on a phone or a browser and can input and access all their relevant clinical data on either format. There is a convenient storage area where they can list their lab data and meds as well as their current height and weight. Patients can also house a list of their chemo treatments. Clinical staff can also use it to access cancer treatment regimens. This app lets you store photos of meds as well.

) is being promoted as a means of locating support groups and clinicians who can answer patient questions about specific cancers. Family members can also tap into this resource.

In addition, if the patient wants to get information about clinical trials, this is the app for them. Another plus is that medical records can be housed there also, like CareZone. This is a free app and 250,000 people around the world have tried it.

https://www.cancer.net/navigating-cancer-care/managing-your-care/cancernet-mobile

) is the official app from the American Society of Clinical Oncology (ASCO). The goal of this app is to help the patient navigate through the world of cancer, at the onset of their journey, when their physician gives them the news to specific solutions. There are 120 different types of cancers it examines.

The app has a symptom tracker and helps the patient or family member in terms of organization. The patient can list his physicians, when their next appointment is, and all medications taken.

Technology has helped the fight against cancer in so many ways. This is another tool in the arsenal.

Cancer care and the information around it has moved online. 

The New Normal: Cancer Apps

Being a person with cancer can be challenging. Being a parent with cancer during a global pandemic brings added layers of challenge that may be more difficult to navigate without support. When a parent is diagnosed with cancer, young adult (YA) and child caregivers (CC) may take on different responsibilities and be considered a caregiver to the parent with cancer. While parents with cancer and their YA and child manage change in their own worlds, they may also experience physical and emotional changes with each other.

They may experience disruptions and changes in their life after their parent is diagnosed with cancer. During the coronavirus disease 2019 (COVID-19) pandemic, there are additional challenges being experienced by YA and CC that parents with cancer should be aware of. As schools have closed and circumstances change, the people and places that YA and children interact with, and how they interact, have changed. The time they now spend in and outside their homes have changed. YA and CC are taking on different roles and responsibilities of teaching themselves at home, being taught by a parent at home, preparing meals, added chores, activity cancellations and their parent’s cancer treatment. The multitude of changes that may be experienced when their parent has cancer during a global pandemic may influence different types of physical and emotional challenges.

Just as YA and CC do not have access to their typical support community outside of the home, the parent with cancer’s support community may have changed too. Parents often rely on the support of family, friends, and community members to help them manage challenges, both expected and unexpected, during treatment for themselves and their children. Due to the stay-at-home orders and isolation caused by COVID-19, parents may not want to risk people outside of their home having additional contact with them or their household members like they did in the past. This may lead to more responsibility being placed on the parent with cancer, another adult in the home or the YA and CC.

We see a change in dynamics in the home, including a shift in responsibility between household members when a parent has cancer. These are challenges the parent with cancer and their treatment team can look out for and discuss to address appropriately. Regardless of when the YA or CC is told about the diagnosis, children tend to worry about the survival of their parent

, have misunderstandings and delusions about cancer

. This can lead to the YA or CC defaulting to a few common coping strategies including distraction, keeping thoughts inside their own head, helping others, parentification and wishful thinking.

The parent with cancer may choose to address challenges on their own or through the use of outside support. Because it is already common for parents to lack the confidence and language skills to discuss their diagnosis and treatment with their child, it may be even more difficult for a parent to address specific changes and challenges in the home.

 This could lead to further misunderstandings, delusions and worries about the parent’s cancer for a child. Choosing outside support from a local cancer agency, social worker, nurse or other health care professional to talk to the child or YA can bring a feeling of normalcy about how the child is feeling about their parent’s diagnosis, and their experiences that they may not get from only speaking with their parent.

 Speaking with a professional for support from their treatment team including a nurse, social worker or other knowledgeable team member can also help the parent learn how to explain the complexities of cancer and their treatment in a way that their child can understand.

 we offer a number of services for patients with cancer and their caregivers. Counseling is available to those in New York and New Jersey, and online support groups and case management services to help patients navigate practical support challenges are available nationally. Cancer

 also offers the HOPEline at 800-813-4673, open Monday through Friday, with calls answered by master’s level oncology social workers who can provide support and guidance to those affected by cancer and their loved ones.

Krauel, K., Simon, A., Krause-Hebecker, N., Czimbalmos, A., Bottomley A., & Flechtner, H. (2012) When a parent has cancer: challenges to patients, their families and health providers, Expert Review of Pharmacoeconomics & Outcomes Research, 12:6, 795-808, DOI: 10.1586/erp.12.62

2. Semple, C.J. & McCaughan, E. (2013) European Journal of Cancer Care 22, 219— 231, Family life when a parent is diagnosed with cancer: impact of a psychosocial intervention for young children.

Being a parent with cancer during a global pandemic brings added layers of challenge that may be more difficult to navigate without support.

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