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.

3. Thastum, M., Johansen, M. B., Gubba, L., Olesen, L. B., & Romer, G. (2008). Coping, Social Relations, and Communication: A Qualitative Exploratory Study of Children of Parents with Cancer. Clinical

Child Psychology and Psychiatry, 13(1), 123—138. https://doi.org/10.1177/1359104507086345

Articles

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

How to Support Patients With a Young Adult or Child Caregiver During COVID-19

Nurses, you may have noticed that some of your patients are younger than you. In many cases, patients are decades younger than the nurses taking care of them on the oncology unit. In today’s COVID-19 era, they are alone without family or friends to visit them. The internet is their connection to the outside world. Besides Facebook, Instagram, and Tik Tok to link them to the outside world, there are also cancer websites specifically geared for younger patients with cancer.

The first resource available is called stupidcancer.org (

). It calls itself a “lifeline” to teenage and younger adult oncology patients. It is a link to their cohorts that have cancer and the information given is tailored to their needs. They further characterize their mission as striving to stamp out the isolation that comes with cancer and bringing younger patients together. Part of their website offers a compilation of the best cancer blogs of 2020.

Stupidcancer.org also has their own blog, called Stupid Cancer (

). It offers a 3-pronged approach by linking patients to a cancer social worker, staff members and young adults who have conquered rare cancers.

Another blog is the YSC Blog (Young Survival Coalition) for younger female breast cancer patients (

). It delves into the realm of relationships, and sex while dealing with this disease. Another cancer organization is Breast Friends For Life. This group is concerned with the psychosocial effects of dealing with breast cancer. They are a nonprofit group in Georgia which has a Facebook page that young women can access (

https://www.facebook.com/breastfriendslagrange

Colon cancer is not for those in their 40s, 50s or beyond. It strikes young adults too. The Colon Club has a goal of having younger adults know their risk factors, in terms of family history and learning about symptoms and early detection (

). Furthermore, they want to encourage innovative solutions in their approach to this disease. The older patient mindset is a thing of the past for this group. As their website sates “Let’s talk poop”. They also have a blog called the Colon Club Blog (

https://www.colonclub.com/programs-support/blog

). Writers here are patients who have been impacted by the disease.

An award-winning website that has created a community approach is Planet Cancer. It has several ways for patients to connect with each other. They offer a retreat in person as well as online forums run by those who have fought in the trenches of this battle. It was founded by Ewing’s Sarcoma survivor Heidi Adams and is a huge presence on the web. (

). It has a nickname of “Myspace on prednisone.” It is now part of the Livestrong network founded by Olympian and cancer survivor Lance Armstrong. The website bills itself as the first online presence for young adults with cancer.

This list is not exhaustive by any means. It is meant to be shared with your patient who has time on their hands. Resources that helps them cope while recovering from surgery or while getting chemo are worthwhile.

Besides Facebook, Instagram, and Tik Tok to link them to the outside world, there are also cancer websites specifically geared for younger patients with cancer.

Resources for Young Patients With Cancer

Your patient had a mastectomy and chemotherapy and is recovering on the post-op surgical oncology unit. She has 1 or 2 JPs (Jackson Pratt’s) which are drained on a prn basis and a surgical bra. The physical part of her recovery is in progress, but what about body image issues?

A patient once told me that she was not concerned about turning grey. At that point in her journey, multiple rounds of chemo and radical surgery, hair color was not on the top of her to-do list. Does this ring true across the board for all patients with breast cancer? The jury is out on that one. Everyone has their own opinion on how important it is to look good after a mastectomy or a prophylactic double mastectomy for a BRCA 1 /2 positive patient.

A major drug store chain, Walgreens, has their own approach to this dilemma. Their program “Feel More Like You” has beauty consultants available to help patients deal with issues such as dry skin and hair loss after chemotherapy. These consultants also are familiar with battling the brutal effects of being in the sun as well as nail changes of the hands and feet. In Florida, sun damage is a major concern. Couple this with a mandatory face mask due to COVID-19, and you have a challenge for this patient.

There are also pharmacists ready to help patients cope with the effects of chemotherapy such as the classic adverse event of nausea and emesis, as well as skin rashes, dry mouth and mouth sores. Incidentally, the “Feel More Like You” program was created between the resources of the Cancer Support Community (cancersupportcommunity.org) and “Look Good Feel Better”

There is a program called “Battle Beautifully” which is a podcast dealing with the diametrically opposed concepts of beauty and cancer. Currently, there is a five-part series which Walgreens has created to help cancer patients. The first episode looks at the concept of beauty. Episode two features an interview with noted TV broadcaster Joan Lunden who discusses her battle with breast cancer. Episode three has a visit to Gilda’s Club which highlights patient coping mechanisms. Finally, episode four discusses mouth problems and episode five rounds out the series with a discussion on tattoos. There is a visit with a breast surgeon and two tattoo artists who gives insight to this trend among breast cancer patients.

As a nurse and patient advocate, helping the patient find the right self-care balance after breast cancer treatment is vital to helping a woman maintain her self-image. Looking in the mirror should not be a stressful experience and these issues can be mitigated with knowledge.

Helping Breast Cancer Survivors Deal With Body Image Issues

Breast cancer is often perceived as a woman's disease, as most breast cancers that are diagnosed in the U.S. are in women. Diagnoses in men contribute to less than 1% of cases.

 Although male breast cancer is rare, health care providers must be well-informed of the psychosocial impacts of the disease. An understanding of the physical and emotional effects specific to men is crucial in the development of patient-centered cancer care.

Men with breast cancer often face unique challenges. This diagnosis can be shocking, and may bring about feelings of isolation, shame, and emasculation. A lack of awareness of male breast cancer, along with responses from others, contribute to these emotions. As health care providers, actions can be taken to better understand the experiences of male breast cancer patients and ensure an inclusive and supportive environment.

It is important to identify the factors that reinforce these feelings of distress. Stigma is commonly expressed as one of the most stressful barriers to receiving care and support for men with breast cancer. This stigma can be experienced in many settings, including within the cancer care system and in existing social surroundings. Studies have shown that breast cancer care focuses on female patients, leading men to feel dismissed. Men report being mistakenly called by female names and prefixes in waiting rooms and will most often be the only male breast cancer patient in the room. This brings about feelings of embarrassment and of being an outsider.

In social settings, men often hesitate to disclose their diagnosis due to fear of how others will react. Many times, close family and friends are the only trusted sources of emotional support, and these chosen few are often equally as shocked by the diagnosis as the patient. Other times, people do not know how to deal with the diagnosis and will retreat from the patient. Men will often feel isolated and have few outlets for support, which leads to social exclusion and ongoing shame.

There are many studies that demonstrate the emotional impact of mastectomy and treatment side effects. However, body image is often a topic reserved for supporting women. Not enough research is designed to understand the effects of scars and altered appearances in men after this surgery. Men may associate their own bodies with a masculine identity. A diagnosis of breast cancer, in combination with visible scarring to the chest area, may contribute to feelings of emasculation and psychological trauma. Additionally, hair loss is not equally addressed. For men and women alike, hair loss contributes to an identity of being sick. Both may express stress due to this side effect of treatment, but in different ways. For example, men may lose facial hair, a typical masculine trait, while in chemotherapy treatments. This could further exacerbate any feelings of emasculation.

These negative perceptions of body image and personal appearance could cause distress for many patients.

In order to reduce the impact of these stressful events, studies have shown there are solutions to provide a more comprehensive approach in the health care setting. More awareness and equality of cancer care will decrease shock and shame. When breast cancer is not seen as only a woman’s disease, negative outlooks decrease. Publications handed to patients could be gender-neutral or contain aspects for both genders.

Discussions about treatment side effects, the impacts on quality of life and concerns about body image that are specific to men will promote an inclusive environment.

 Health care providers play a significant role in the patient’s perception of the disease. Knowledge, attitude, and office atmosphere contribute to better psychological outcomes.

Stigma, feelings of exclusion, and other stressors will impact overall well-being and functioning. Health care providers who can identify these factors will better be able to provide much-needed emotional support, improve quality of care and provide resources tailored to their patients’ needs.

In addition to a well-informed health care team, men with breast cancer would benefit from professional counseling and peer support. Support groups have long demonstrated improvements in quality of life to those with breast cancer, and that remains true for male breast cancer patients. In one study, most men agreed they would benefit from speaking with another man diagnosed with breast cancer.

 Providers who conduct distress screenings and share referrals to resources will have a significant impact on their patients, while meeting their various psychosocial needs.

Even though male breast cancer is rare, all providers can remain conscientious and promote awareness in their practice. Together, we can collectively aim to reduce experiences of stigma and shame and decrease feelings of isolation and fear. Overall, this will have positive effects for male breast cancer patients and generate the respect and support all patients deserve.

Breast Cancer Facts and Figures 2019-2020. 

https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/breast-cancer-facts-and-figures/breast-cancer-facts-and-figures-2019-2020.pdf

Midding W, Halbach SM, Kowalski C, Weber R, Würstlein R, Ernstmann N. Men with a woman’s disease: stigmatization of male breast cancer patients—a mixed methods analysis

2018:12(6) 2194—2207. doi:10.1177/1557988318799025

Robinson JD, Metoyer KP Jr, Bhayani N. Breast cancer in men: a need for psychological intervention. 

Journal of Clinical Psychology in Medical Settings

. 2008:15(2):134-139. doi: 10.1007/s10880-008-9106-y

Ernst J, Mehnert A, Dietz A, Hornemann B, Esser P. Psychological distress in men with breast cancer. 

2006:24(1):95-101. doi: 10.1200/JCO.2006.10.064

Williams BG, Iredale R, Brain K, France E, Barrett-Lee P, Gray J. Experiences of men with breast cancer: an exploratory focus group study. 

89(10):1834-1836. doi: 10.1038/sj.bjc.6601305 

Health care providers play a significant role in the patient’s perception of the disease. Knowledge, attitude, and office atmosphere contribute to better psychological outcomes.

Identifying the Needs of Men With Breast Cancer

COVID-19, also known as the coronavirus, has impacted our lives in some way be it mentally, physically, or spiritually. While data continues to emerge on COVID-19, statistics are showing that this is yet another disease that yields disproportionate outcomes in African Americans, as well as other vulnerable populations as it pertains to burden of disease and mortality.

In recent data reported from New York City, one of the hot spots for COVID-19, mortality rates among African-Americans was higher (92.3 deaths per 100,000 population) compared to that of Whites (45.2) or Asians (34.5).

In Illinois, my homestate, 58% of Cook County deaths from COVID-19 were from African-Americans despite the population being comprised of 23% African-Americans.

 One might ask, why is this the case? While there are still a lot of unknowns about this virus, we do know from our previous experiences with health inequalities that patient factors such as, gender, socioeconomic status, age and access factors, such as, geographical location and institution all contribute to disparities. Certain medical conditions such as, asthma, cardiovascular disease, diabetes and chronic kidney disease to name a few, are more prevalent among African-Americans, also increases our risk for severe COVID-19. When combining all of these factors they heighten the health risks and poor outcomes seen in African-Americans diagnosed with COVID-19.

It has been stated that many African-Americans are asymptomatic when presenting to the hospital and/or clinic and those with symptoms frequently complain of fatigue, malaise and headache which are often mild in nature and are often dismissed by the healthcare provider and the patient; therefore making this virus a new, “silent killer” among African-American communities.

As nurses, we are at the frontline of delivering and coordinating patient care. Our active participation in the health care system can improve health outcomes and reduce health disparities seen in African-American patients. We directly influence patients’ health status through our hands-on care and indirectly by engaging patients in their treatment. I stand with you and encourage you to continue to advocate for your patients’ right to be tested to decrease the mortality seen with this virus as we all are an integral part of the team and can make a difference in combating COVID-19.

Center for Disease Control and Prevention (2020). Coronavirus (COVID-19). Retrieved on, April 30, 2020 from, 

https://www.cdc.gov/coronavirus/2019-ncov/index.html

As nurses, we are at the frontline of delivering and coordinating patient care.

Is COVID the New Silent Killer?

During an initial cancer diagnosis, many patients will feel an array of different emotions. Some may experience a sense of shock, fear, or sadness. Many will ask themselves questions about why they have been diagnosed with cancer. As they go through treatment, more emotional and physical changes can occur, and as they do, many people become frustrated at the loss of control cancer has caused.

Patients can cope by utilizing past strategies that have gotten them through other crises they experienced throughout life. In addition, mindfulness techniques can create better outcomes by helping patients focus on the present moment and steering them away from the worry of the unknowns that cancer brings.

According to Merriam-Webster, the definition of mindfulness is “(a) The quality or state of being mindful and (b) The practice of maintaining a non-judgmental state of heightened or complete awareness of one’s thoughts, emotions or experiences on a moment-to-moment basis.”

 Ancient Eastern religious traditions such as Hinduism and Buddhism originated mindfulness-based meditations. The current approach to mindfulness in the Western health system is a way to achieve a state of mind that is aware and focused, which in turn can assist with reducing stress, improving physical health, and creating greater harmony in life.

Many thoughts and feelings rush to the forefront of a patient’s mind about their diagnosis, treatment, and adverse events. As patients worry about the unknowns of cancer, mindfulness can help them focus on the here and now as well as bring hope into their everyday lives. 

Some basic tips for practicing mindfulness include the following:

 Hearing the phone ring, stopping at a traffic light or sipping water can allow a respite from worry by guiding your mind to be present and focus on what you hear, see, and taste.

Choosing one daily activity to practice mindfulness:

 Brushing your teeth, taking a shower or walking from point A to point B are opportunities to slow things down for thoughtful consideration instead of rushing through, keeping you in the moment of what is happening now.   

 Noticing your thoughts when faced with limitations and being nonjudgmental and gentle to yourself can help label the negative feelings and permit you a few moments to process their value by being kind to yourself rather than judgmental.

Studies suggest that mindfulness affects various aspects of our psychological well-being, such as improving mood, decreasing anxiety, increasing positive emotions, and emotional reactivity.

 When patients apply mindfulness tools, it allows them to work with physical pain in the body as well as provide a sense of peace. A few activities of mindfulness include listening to music, dancing, meditation, walking, gardening, practicing breathing, and yoga.

These activities can help patients become aware of their body, specifically its tensions and discomforts in a non-judgmental manner. Applying mindfulness to many exercises such as these can expand awareness of everything you are doing and provide a sense of peace.

It is completely normal to feel anxious after being diagnosed with cancer. As a patient responds to a threat to personal well-being and life, they may experience what is called a “flight, fight, or freeze” response. When this mechanism is triggered, they choose to engage the threat or flee from it, in this case mentally.

  Another common feeling associated with cancer is sadness. It is important to identify emotions that can occur at diagnosis during treatment and in remission.

 Mindfulness practice assists with restoring bodies, calming minds, and reigniting hope during stress-filled days.

In oncology settings, mindfulness is often presented through programs such as mindfulness-based stress reduction or mindfulness-based cancer recovery, collectively referred to as mindfulness-based interventions. Hospitals, cancer centers, gyms, community centers, and houses of worship are good places to practice these techniques. Practicing mindfulness can assist with uncertainty about the future, depression, fear of recurrence and anxiety as well as mitigate physical symptoms such as fatigue, pain, and sleep disturbance.

The act of gratitude is a component of mindfulness that is linked to creating a positive sense of self, by non-judgmentally changing the focus from moments that did not go as planned to events, things or feelings that went right. The act of gratitude can include giving thanks for a good cup of coffee, heat in your home, or a laugh with an old friend. Gratitude is the most powerful act in creating happiness. The act of being grateful can create a feeling in patients of balance and peace.

Cancer is a traumatic event that changes a person’s life. Utilizing mindfulness tools can provide peace and hope. Practicing mindfulness on a daily basis can assist with long term effects of happiness and positivity. Even occasional mindfulness practice can help provide a break from the stress of cancer and fill patients with a sense of calm to confront the challenges they face.

www.merriam-webster.com/dictionary/mindfulness?utm_campaign=sd&utm_medium=serp&utm_source=jsonld

2. Mehta, R., Sharma, K., Potters, L., Wernicke, A. G., & Parashar, B. (2019). Evidence for the Role of Mindfulness in Cancer: Benefits and Techniques. 

3. Lindberg, S. (2017, July 20). Can meditation improve the lives of cancer patients? Retrieved January 26, 2020, from https://www.headspace.com/blog/2017/04/16/meditation-and-cancer-patients/

4. Suttie, J. (n.d.). Five Ways Mindfulness Meditation Is Good for Your Health. Retrieved January 26, 2020, from https://greatergood.berkeley.edu/article/item/five_ways_mindfulness_meditation_is_good_for_your_health

5.Scott, E. (2019, July 17). How to Make Mindfulness Your Way of Life. Retrieved January 26, 2020, from https://www.verywellmind.com/mindfulness-exercises-for-everyday-life-3145187

6. Anxiety: Cancer Diagnosis. (n.d.). Retrieved January 27, 2020, from https://www.cancercare.org/publications/367-anxiety_and_cancer

7. Coping with Sadness: Cancer Treatment. (n.d.). Retrieved January 27, 2020, from https://www.cancercare.org/publications/279-coping_with_sadness_throughout_and_after_treatment

8. “Mindfulness in Cancer Care: Hype or Help?” 

Mindfulness in Cancer Care - The ASCO Post

, www.ascopost.com/issues/july-10-2018/mindfulness-in-cancer-care/.

9. Mindfulness and Gratitude . (n.d.). Retrieved January 27, 2020, from https://www.psychologytoday.com/us/blog/mindfulness-insights/201906/mindfulness-and-gratitude

Mindfulness can be a powerful tool to reduce stress and improve patients' outlook after being diagnosed with cancer.

Mindfulness Can Help Patients With Cancer

The American Cancer Society estimates that 5%-10% of cancers are connected with mutations in the DNA that are inherited through generations.

 For millions of patients in the United States, genetic testing allows for a deeper understanding of one’s risks, prompting more comprehensive screening and services in an effort to prevent the onset of a disease or detect cancer at an earlier stage. Despite heightened awareness of the BRCA gene, breast cancer is far from the only cancer associated with inherited risks. Melanoma, pancreatic, prostate, colon, ovarian, stomach, and brain cancers may be associated with family cancer syndromes caused by inherited genetic mutations.

Most insurance companies that pay for genetic testing do so at the request of a primary care physician or genetic counselor who has agreed that there are enough immediate family relatives with cancer diagnoses to warrant a genetic test on the patient. Patients often have to recite a painful list of family members who have had cancer diagnoses, and this in itself is unsettling, given that they may have lost family members from the disease and may still be grieving. The emotional context of a family medical history is compounded by the implication that patients themselves may be diagnosed with cancer in the future.

For people with genetic mutations that lead to an increased risk of cancer, occupying the same clinical spaces designed for people with cancer diagnoses may be challenging. The protocol for many genetic mutations involves annual or biannual scans or follow up on concerns.

 As a result, patients can form lasting relationships with oncology nurses without ever having a diagnosis of cancer. The discovery of a genetic mutation allows people to take power over an uncertain future, but places them in the same medical setting they are hoping to avoid. For those living in more rural areas, access to genetic counseling may be limited. Patients will look to oncology nurses for assurance that their screenings or preventive measures will be effective, and may feel discomfort at being treated as though they are already a person with cancer.

Because most patients with genetic mutations will have family members who have been diagnosed with cancer, it can be a fine line between patient and caregiver. When working with clients who compare their diagnoses and experience with cancer to those of similarly diagnosed family members, it is important to remember the individuality of patient experience. Working with caregivers can present unique topics, as their concerns are both for the patient and for their own futures. It is important as oncology nurses to remember that patients identified with family cancer syndromes usually have a lengthy personal narrative that includes multiple losses of family members. This creates the need for a delicate balance in which oncology nurses have to be aware of their patients’ need for support while not assuming that the patient will become ill themselves. 

People with genetic mutations are often confronted with an abundance of screening protocols that can be overwhelming. Oncology nurses have the rare chance to form long-term relationships with patients and help contextualize the data behind what “increased risk” means. Various cancer syndromes can have different timelines; one may involve an  increase in cancer diagnoses for those under the age of 30 while another might involve a lifetime of gradually increasing risk. Oncology nurses can help put these things into context. For example, oncology nurses can help patients understand that a high risk of cancer by the age of 70 only remains true if nothing is done to lessen risks associated with cancer

 and that increased screening, changes in diet, reduction in alcohol and avoidance of tobacco can prevent or reduce chances of cancer.

Oncology nurses are at the front lines of meeting a patient where they are emotionally. If a patient comes to an oncology center for screenings, oncology nurses can treat them with care and empathy while being mindful that the patient might not need the same degree of support as someone with a cancer diagnosis. In the same vein, a patient with a family cancer syndrome may experience increased anxiety due to previous scans and tests and require more information and reassurance.

It is essential to remember that people with family cancer syndromes may never receive a cancer diagnosis. This may be due to preventive surgeries to remove organs and body tissue or prophylactic medication.

 For those patients who are unable to take preventive surgeries and rely on increased screening measures, there may eventually be a cancer diagnosis. The emotional comparison to other family members challenges the notion that everyone’s experience with cancer is unique, and oncology nurses can help contextualize and support a patient who transitions from screenings to cancer care. Oncology nurses are often in a prime position to validate the patient experience and provide essential support in long-term relationships with patients and caregivers.

The American Cancer Society. Family Cancer Syndromes. 

https://amp.cancer.org/cancer/cancer-causes/genetics/family-cancer-syndromes.html

 January 4, 2018. Accessed December 10, 2019

Schmeler KN, Lynch HT, Chen L, et. al. Prophylactic Surgery to Reduce the Risk of Gynecologic Cancers in the Lynch Syndrome. 

. Jan. 9, 2006. DOI: 10.1056/NEJMoa052627

 Garber JE, Offit K. Hereditary Cancer Predisposition Syndromes. 

People with genetic mutations are often confronted with an abundance of screening protocols that can be overwhelming.

Genetic Testing and Inherited Increased Risk of Cancer

Diversity, inclusion, and equity are values central to advancing the mission of the American Association of Colleges of Nursing (AACN); an organization recognized as the collective voice of academic nursing.

We hear these terms all of the time; however, what do they really mean? To eliminate any bias per se, let us review the literature to expound on the value of these concepts as it pertains to professional organizations, especially where people hold leadership positions.

While this topic can be viewed as controversial by some; it is important to address to ensure that everyone’s opinion is recognized. Inclusion provides support to obtaining a better understanding of one’s personal and social values; this can reduce bias, discrimination, and prejudice.

However, inclusivity does not mean conforming to the social norm of the majority, it means that someone might be a little different, but you accept that and meet them where they are.

Diversity embraces a wide range of variation; factors such as, age, gender identity, race, ethnicity, culture, religion, sexual orientation, disability, language, or socioeconomic status are just a few aspects of the term diversity.

We have all heard the term, “having skin in the game,” well this is equity, the ability to recognize the differences in the resources or knowledge needed to allow individuals to lend their full participation.

In order for the nursing profession to continue to evolve, change is needed; we can all make a start by embedding these concepts into our minds and giving deliberate attention to everything that we do. Leadership sustainability includes every component of diversity, it is imperative that leaders who are serving today be appropriately prepared, and that they mirror the behaviors that they want their followers to demonstrate.

These are all interpersonal concepts that require cultural competence and respect being paramount during assimilation to continue to advance the nursing profession. 

New perspectives, new faces of leadership, new leadership styles, all can create new opportunities with more voices being heard.

Having all stakeholders involved can reduce assumptions, challenge opinions, widen perspectives, and encourage socialization across all groups. This can result in innovation and overall improvement in the foundation of the nursing profession, which will allow nurses to treat a wider range of patients more effectively.

AACN position statement on diversity, inclusion, & equity in academic nursing (2017). Journal of Professional Nursing, 33;173—174.

Woody, R. (2017). Expanding diversity: Noncategorical inclusion and equity. 

New perspectives, new faces of leadership, new leadership styles, all can create new opportunities with more voices being heard.
 

Diversity and Inclusion Should be Valued in Leadership Roles

October is recognized as Breast Cancer Awareness month, and it is difficult not to notice the theme at every turn, from worldwide landmarks with pink lights—Buckingham Palace, the White House, and Tokyo Tower, to name a few&mdash;to professional athletes altering their uniforms with pink socks, sweatbands, and caps. During this month, you can also find seminars, conferences, and screenings centered around breast cancer. Advertisements on television and social media, too, are loaded with the color pink and the symbolic pink ribbon.

Despite all these efforts to bring awareness to breast cancer, as an African American woman, it is heartbreaking to read the statistics about my ethnic group and the treatment disparity that still exists in 2019. 

 reports that among African American women with breast cancer younger than 50 years old, they have a mortality rate double that of white women with breast cancer.

Not only are more aggressive forms of breast cancer diagnosed in African American women than white women

—such as triple-negative breast cancer (TNBC), which has limited treatments available and can’t be treated with hormonal therapies&mdash;but the disease is being diagnosed at more advanced stages. Contributing factors to these inequalities include social and economic disparities, cultural differences, biological differences, and lack of access to high-quality healthcare. The socioeconomic disparities stem from fewer opportunities and lack of access to resources, such as employment, income, education, housing, healthy foods, and standard of living compared to white Americans. The higher cancer burden may also reflect different rates of behavioral risk factors for cancer such as smoking.

Are we looking close enough at the biological differences? Why are black women more opt to develop TNBC that is most likely not due to a 

 Does socioeconomic status determine the type of breast cancer diagnosed in these women? Could there be a gene mutation expressed in black women that has not yet been identified? In order to dive further into the germline DNA, clinical trials need to include more African American women.

With what we already know, how can we begin to close this disparity gap? I believe knowledge is power and without knowledge, life is lost. Education is key to closing this gap. The American Cancer Society has done a lot of work to bring awareness to underserved communities through prevention and early detection programs and services, by providing transportation to treatment and lodging during treatment, and by assisting with navigation through the healthcare system.

 Community leaders, cancer advocates, health care workers, organizations, associations, and anyone who has an interest in the community must join forces to help bring their own awareness to the unique challenges that African American women with breast cancer face.

The technology is available, and new breakthroughs and treatments are continuing to be revealed, but African American women are not receiving many benefits from these advancements. Much work is still needed to improve the mortality rate and close the disparity gap of African American women with breast cancer.

DeSantis CE, Ma J, GHaudet MM, et al. Breast cancer statistics, 2019 [published online October 2, 2019]. 

Forster V. Breast cancer death rate continues to drop, but black women have far higher mortality rates. 

forbes.com/sites/victoriaforster/2019/10/02/breast-cancer-death-rate-continues-to-drop-but-black-women-have-far-worse-chance-of-survival/#681548922054

Cancer Facts & Figures for African Americans 2019-2021

. Atlanta, GA: American Cancer Society; 2019. 

cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2019-2021.pdf

The biology of cancer health disparities. National Cancer Institute website. 

cancer.gov/research/progress/discovery/biology-cancer-health-disparities

Despite advanced technology and new treatment breakthroughs in cancer care, treatment disparity remains among African American women with breast cancer.
 

African American Women Aren't Receiving the Benefits of Breast Cancer Awareness

In 2002, I returned to work at my prior hospital of employment and found many examples of forward-thinking in place.  One seemed like an oxymoron. A palliative care nurse practitioner was now employed within the Medical Intensive Care Unit (ICU). I wasn’t sure what to make of this addition at the time, but years later, I’ve realized the very appropriate allocation of this advanced practice nurse within this setting.

The overall death rate in the ICU is high: 20%-35% of patients admitted to intensive care die.

 In addition, admissions to the ICU in the last month of life have increased to nearly 30%.

 Within cancer care, contemporary data confirms the importance of addressing the needs of patients with cancer within the critical care setting. Consider the following:

In the past decade, up to a third of patients admitted to ICU have a cancer diagnosis.

Overall, 1 in 10 patients experience a life-threatening condition that requires the supportive technologies and monitoring rendered within the ICU setting.

The use of aggressive cancer therapies heightens the prevalence of emergent scenarios; this is especially the case in the treatment of hematologic malignancies and with the use of hematopoietic stem cell transplantation.

Associated with the increased prevalence of oncology patients within critical care settings are other corollaries. 

Within the context of patients being unable to speak on their own behalf, surrogate or proxy decision-making has a plethora of problems and controversies.

 The prevalence of considerable symptom distress is another issue. In addition to cancer treatment-related sequelae, palliative care-related symptoms (i.e., thirst, anxiety, sleep disturbance, dyspnea) also require management.

 Lastly, poor communication amongst numerous physician specialists and with family members is pervasive.

There are several interventions to be considered to address these issues. They require implementation within the critical care and oncology unit settings. Consider the following:

Establish a routine schedule for rounding with the palliative care team in both the oncology unit and intensive care settings. This includes developing a proactive approach to identifying patients who could benefit from palliative care interventions with the delineation of triggers for palliative care consults.

In the ICU setting, have a plan for routine family meetings based on the projected or estimated length of stay.

Create comfort care protocols for the management of common distress sequelae.

Consider the development of family education approaches to enhance their awareness of common sequelae they are likely to encounter in critical care.

Mandate communication training opportunities that address common scenarios likely to be encountered within critical care.

I had the opportunity to work with a research initiative within the 5 University of California hospitals to train critical care nurses in communication skills.

 The program’s goal was to provide needed instruction in the clinical setting about how to speak with the families of ill patients and the training consisted mostly of role-playing communication strategies with families, physicians, and family meetings.

Oncology nurses are one of many nurse specialties that care for patients with cancer.  Emergency Department, PACU, surgical, rehabilitation, home care, dialysis, medical, and critical care nurses care for our patients at various phases of their cancer experience. The inevitability of oncology patients being cared for, and possibly dying, in the critical care setting is a real one in today’s acute care environment. Because of the prominence of cancer today, all nurses need to ensure they have the expertise and confidence to care for oncology patients at varied points along the cancer continuum.

Angus DC & Truog RD (2016).  Toward better ICU use at the end of life. 

Teno JM, Gozalo PL, Bynum JP et.al. (2013). Change in end of life care for Medicare beneficiaries: Site of death, place of care, and health care transitions in 2000, 2005, and 2009. 

Boyle DA, Barbour S, Anderson W et.al. (2017). Palliative care communication in the ICU: Implications for an oncology-critical care nursing partnership. 

Mercadente S, Gregoretti C, Cortegiani A (2018). Palliative care in intensive care units: Why, where, what, who, when, how. 

Puntillo KA, Arai S, Cohen NH et.al. (2010). Symptoms experienced by intensive care unit patients at high risk of dying. 

Oh YS (2017). Communication with health professionals and psychological distress in family caregivers to cancer patients: A model based on stress-coping theory. 

Milic MM, Puntillo K, Turner K et.al. (2015). Communicating with patients’ families and physicians about prognosis and goals of care. 

Fumis RR, Martins P, Schettino G (2015). The impact of poor prognostic patients admitted to the intensive care unit on family members emotional disorders. 

Wright AA, Keating NL, Ayanian JZ et.al. (2016). Family perspectives on aggressive cancer care near the end of life. 

Anderson WG, Puntillo K, Boyle D, Barbour S, Turner K, Cimino J, Moore E, … Pantilat S.  ICU bedside nurses’ involvement in palliative care communication: A multicenter survey. 

Boyle D & Anderson WG. Enhancing communication skills of critical care nurses: Focus on prognosis and goals of care decision-making. 

The stigma around palliative care is that it is only associated with end of life, and in some minds, giving up. But that isn't the case, as palliative care is a vital part of any critical care.  

Contributors