Community and faith-based education programs have long been proven successful in reaching black communities. As an African American woman and advanced practice nurse, I have participated in many projects and studies to identify effective approaches to increase awareness, prevention, and treatment of health issues that impact my racial/ethnic group. After serving as a nurse expert for several successful community faith-based programs focused on various health issues, I worked with a local organization, in which I am a member, to address prostate cancer awareness and screening among black men in two counties in Virginia.
Prostate cancer is the second most common cancer in men, and, despite being treatable when detected early, is one of the leading causes of cancer death among men of all races, according to the Centers for Disease Control and Prevention. Prostate cancer rates among black men are significantly higher than any other race, with more than 150 new diagnoses annually per 100,000 men in the United States. Clinical progression of prostate cancer is known to be more aggressive in black men as compared to white men. However, black men are less likely than their white counterparts to engage in shared decision making (SDM) with their health care provider about the benefits and risks of the gold-standard prostate specific antigen (PSA) test. Due to the increased risk for prostate cancer among black men, screening is recommended at earlier ages than the general population.
The Education Program
Over a one-year period, I was a nurse researcher for a prostate health education program that examined whether participants had an increased awareness about key issues of prostate cancer, following a culturally targeted education program, and whether participants were more likely to engage in SDM with their health care provider about prostate cancer screening. Their knowledge was assessed through pre- and post-test surveys that addressed three topics:
Increase in knowledge about prostate cancer screening
Increase in intentions to have an SDM conversation with a physician about prostate cancer screening within 12 months
Participation in an SDM conversation with a physician about prostate cancer screening within three months after the educational program
The program worked with 438 black men over the age of 40 who were recruited primarily through churches, as well as social media and community, civic, and social activities. Participants needed to be able to speak and understand English and reside in either Prince William or Stafford County in Virginia. Religious beliefs serve as a fear reducer and motivator for increased prostate cancer screening behaviors among black men, demonstrating the importance of faith and spirituality in the black community. Programs were implemented at 12 black churches, and prayer and scripture were included before and after each program session.
It’s important to ensure that programs are meeting the needs of the community. As a result, a community advisory board was developed for this program, which included key stakeholders such as nurses, physicians, ministers, local hospital representatives, prostate cancer survivors. and community advocates for black men’s health issues.
After the pretest to assess black men’s existing knowledge about prostate cancer, an educational session began with a five to 10-minute personal testimony by a black prostate cancer survivor, followed by an engaging question-and-answer session. The men then watched a short National Cancer Institute video clip, “Prostate Cancer Survivor: An African-American Man’s Perspective.” Next, two physicians who specialize in urology taught a two-hour information session that focused on prostate cancer statistics, prevention, screening, early detection, and quality of life. Last, there was another question-and-answer session, which was followed by the post-test. Contrary to previous community and faith-based programs, this one included a second post-assessment three months after the initial program to evaluate whether patients had an SDM conversation with their physician about prostate cancer screening.
The Program Results
The results showed that educating black men about prostate cancer through a community and faith-based program increased their general knowledge of prostate cancer and its treatment by 40.2%, improved their intention to have an SDM conversation with their health care provider by 17.8%, and impacted whether an SDM conversation took place within three months of the program by more than 80%. Although the results are encouraging, it’s important to note that the black men in this program were predominantly middle class and the majority were employed full-time and possessed private health insurance. Additional programs of this nature should be conducted with those without health insurance and with lower levels of household income.
The Importance of Research
Nurses can play a vital role in helping community and faith-based organizations develop and execute programs to address health disparities. The program I was a part of is an example of how community partnerships can implement a successful health education program. Doctoral programs, like Walden University’s PhD in Nursing, train nurses to become effective researchers and scholars to tackle complex health care questions and issues. It’s critically important for research to be conducted, especially in developing culturally appropriate models for diverse communities, so more contributions toward reducing health disparities can be made available to effect positive social change.
Breast cancer is one of the most diagnosed cancers among African American women, yet research into their experiences with treatment lags behind. In particular, few studies have examined how African American women cope with fatigue, the most common side effect of treatment. To help fill the gaps, my research colleagues and I explored how fatigue affects African American women undergoing breast cancer treatment.
When it comes to breast cancer and African American women, fatigue coupled with fear are a significant part of the experience, with many African American women viewing breast cancer as an automatic death sentence. When we examine the mortality rate of breast cancer among African American women compared with women from other ethnic and racial groups, this perception is understandable. The American Cancer Society’s Breast Cancer Facts and Figures 2013–2014 report indicates that African American women had a lower breast cancer incidence rate than non-Hispanic white women; however, that same report states that African American women with breast cancer have a higher mortality rate. Many factors contribute to this racial disparity, including inadequate or lack of health insurance, screening behaviors, obesity, and a genetic component that results in more aggressive tumors.
A fatalistic view of breast cancer leads some African American women to delay follow-up visits or even avoid obtaining mammograms, which can lead to them being diagnosed at a later stage and having a worse prognosis. Then fear can turn into reality. Of all types of cancer diagnosed in African American women, breast cancer is the second leading cause of death. The five-year breast cancer survival rate for African American women was 79% compared with 92% for their white counterparts.
As health care practitioners, we can help improve these outcomes. We play a major role in educating African American women about the importance of early screening, dispelling myths associated with breast cancer, and reducing fatalism. To do this effectively, we need to understand how breast cancer affects the lives of African American women and the ways they cope with a breast cancer diagnosis, which begins at diagnosis and continues through treatment and beyond.
Recognize the Impact of Fatigue Research suggests that African American women may experience more fatigue than others with breast cancer, a condition that I’ve also observed in my own research. Rather than ordinary fatigue, they feel cancer-related fatigue—a form more distressing and severe and less likely to be relieved by rest.
For the women in our study, cancer-related fatigue began soon after their second chemotherapy treatment or midway through radiation. Symptoms worsened as treatment progressed, affecting their daily function. Their fatigue made it difficult to engage in the mental processes needed to complete simple tasks, make routine personal decisions, and balance work and health responsibilities.
Though our research involved a limited number of participants, our findings offer insights that can help health care practitioners become better prepared to treat African American women with breast cancer and address their cancer-related fatigue symptoms.
Encourage Open Communication Interactions with health care practitioners are crucial to alleviating the fatigue African American women experience during breast cancer treatment. We can ask the women to rate their level of fatigue on a scale to gauge its severity, but the best approach is to ask them to describe it, and explore the fatigue experience from a qualitative perspective. For example, how does the fatigue make them feel, and what are they doing about it?
In our study, the response was “real talk,” a common term in the African American community to describe how people speak candidly and without reservation about their feelings. The women used words like these to describe how cancer-related fatigue made them feel: disconnected, depressed, tired, burned out, weak, broken down, and washed out.
Recognizing the terminology African American women use allows health care practitioners to determine the medical implications of the words and helps build understanding and trust between patients and their nurses and doctors. It is equally important that health care practitioners convey empathy and validate what they hear, including what African American women are conveying about their fatigue symptoms. We need to acknowledge the fatigue African American women experience and have open communication with them so their symptoms can be made more tolerable and manageable.
Consider Alternative Treatments Many of the African American women in our study shared with us that the medications they were prescribed to combat fatigue were of limited benefit or made them feel worse. In contrast, choosing to exercise (such as walking) helped relieve their symptoms. Despite feeling too weak and tired to exercise, the women discussed how they pushed through the fatigue because they knew exercise would be beneficial to their health. This is consistent with past research indicating that walking has a positive effect on fatigue related to breast cancer. With permission from their physicians, the women also turned to alternative treatments, such as vitamins and supplements, herbal remedies, natural teas, and acupuncture.
Their experiences tell us that medication is only one option available to relieve fatigue. As health care practitioners, we should consider incorporating complementary therapies that may offer benefits to African American women undergoing breast cancer treatment.
Understanding the Power of Prayer and Community More than anything else, faith and prayer helped the women in our study cope with breast cancer’s overwhelming effect on their lives. Their spiritual identity made both their diagnosis and cancer-related fatigue seem more manageable.
No woman should go through breast cancer alone, and studies show that African American women rely on a wide social network that includes their church, family, friends, and faith-based, Afro-centric support groups. Joining a group of women who have similar backgrounds and experiences can help spiritually, psychologically, and emotionally. Afrocentric support groups also offer a venue where nurses and oncologists can educate women about breast cancer and fatigue related to treatment. Other health care practitioners, such as physical therapists and nutritionists, should be invited to the support groups for a more comprehensive approach.
Provide Culturally Appropriate Care Addressing racial disparities and quality of life issues for African American women with breast cancer calls for culturally appropriate care as well as effective outreach in the African American community. Health care practitioners who are part of the community and culture may better understand how to access and educate women about breast cancer screening and treatment.
Research studies support the idea that African American women are more comfortable relating their experience with breast cancer to health care practitioners who are from their same ethnic, racial, or cultural background. In a previous study I conducted, the African American women were more comfortable with breast cancer education and sharing of health tips when they heard them from African American health care practitioners and their peers. Unfortunately, the number of African American health care practitioners today is low. To provide culturally sensitive breast cancer education and care for African American women, we need to encourage more African Americans to become oncology nurses and enter related health care fields.
Breast cancer continues to take its toll on African American women, but the outlook is improving. Nurses and other health care practitioners have made significant strides in educating African American women about the disease and decreasing fatalistic views. Since 2000, screening has increased, and breast cancer is being detected earlier. Further research and better understanding of the fear, fatigue, and coping strategies of African American women with breast cancer will help us continue to build on this progress and provide better care.
Phyllis Morgan, PhD, FNP-BC, CNE, FAANP, is a nurse educator, certified family nurse practitioner, and researcher focused on African American women’s health issues. She is the coordinator for the Family Nurse Practitioner specialization at Walden University and a nurse practitioner in northern Virginia for Minute Clinic.
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