May 2011 Ask the Expert: Breast Cancer and Culture
During the month of May 2011, Living Beyond Breast Cancer expert Kimlin Ashing-Giwa, PhD, answered your questions about how your ethnicity, culture and social and financial circumstances can impact your risk of getting breast cancer, your access to treatment and your quality of life; and how to advocate for yourself and others.
Many medical centers have survivorship programs for those who finished active breast cancer treatment. Have you seen any data about women of different ethnic groups and their access to or participation in these survivorship programs?
I’m a cancer survivor, and in my community, I try to get the African-American women to understand more about clinical trials so they can get more involved. Do the doctors think enough African-American women are involved in clinical trials to know whether the treatments work as well on women of color as European-American women, because of our lifestyle and not exercising enough?
Question: Many medical centers have survivorship programs for those who finished active breast cancer treatment. Have you seen any data about women of different ethnic groups and their access to or participation in these survivorship programs?
Dr. Ashing-Giwa: City of Hope led one of the earliest training and evaluation projects on cancer survivorship programs. To date, 43 states and 204 multidisciplinary teams (made up of social workers and physicians, or psychologists and nurses; many combinations are possible and depend on the hospital or agency) participated on the City of Hope-led and National Cancer Institute-funded program.
The goals of most programs are to prevent recurrence and provide surveillance in the form of teaching healthy lifestyle habits and ensuring adequate care for cancer and treatment-related side effects such as lymphedema, pain and sexual dysfunction.
There is no publication yet on ethnic minority participation in these hospital-led activities, but there are many resources for developing survivorship care programs. (This list is adapted from Grant & Economou; Oncology Issues, 2010.):
- American Cancer Society,
- American Society of Clinical Oncology, Clinical Practice Guidelines
- Association of Community Cancer Centers,
- Centers for Disease Control and Prevention, National Action Plan for Cancer Survivorship
- National Cancer Institute, Coping With Cancer: Survivorship—Living With and Beyond Cancer
- Office of Cancer Survivorship,
Here are some other helpful resources:
- American Cancer Society: educational resources for healthcare professionals, patients, caregivers, and families
- CancerCare: survivorship support groups and educational resources
- Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs: survivorship education and resources for psychosocial support of cancer survivors
- City of Hope Pain and Palliative Care Resource Center: educational resources and evaluation tools
- Institute of Medicine (IOM) 2006 report, From Cancer Patient to Cancer Survivor—Lost in Transition: the transition from active treatment to post-treatment care is critical to long-term health
- Journey Forward Care Plan: survivorship education and resources and care plan template
- Lance Armstrong Foundation LIVESTRONG Program: survivorship education and resources and care plan template
- National Coalition for Cancer Survivorship: survivorship education for patients, healthcare professionals and caregivers, including the Cancer Survival Toolbox
Dr. Ashing-Giwa: Cancer incidence continues to increase among American Indians and Alaska Natives, unlike other ethnic groups. Once diagnosed, American Indians and Alaska Natives have the highest mortality rate and poorest five-year survival when compared to other poor, minority and medically underserved groups. Cancer is the third leading cause of death for American Indians and Alaska Natives of all ages. Studies show that American Indians tend to be diagnosed at later stages and experience significant delays between diagnosis and treatment.
In the survivorship realm, researchers developed a web-based program to help improve quality of life called Native American Cancer Education for Survivors. They found that although treatment outcomes for Native Americans have improved in the past five years, survivors continue to experience access disparities and coexisting physical conditions such as high blood pressure, obesity and thyroid problems. After treatment, many Native Americans had pain, weakness, weight gain or loss, fatigue, dry skin, depression and hair loss. This study also documented that many survivors accessed the content information from the program directly, with their family members or with trained Native American patient advocates.
Dr. Ashing-Giwa: My data over the past 15 years as well as more recent studies show that African- and Latina-Americans are the least likely to have breast-conserving surgery for an early-stage diagnosis or to have reconstructive surgery, even though they are more likely than other ethnic groups to receive mastectomy. This is another area that is under-studied and needs more research.
The literature suggests that there are multiple factors at work. Ethnic minority women are more likely than other groups to be treated at community hospitals rather than large, well resourced medical centers and NCI-designated comprehensive cancer centers. They report less patient satisfaction and have less favorable healthcare provider-patient communications. They are more likely than other groups to have pre-existing co-morbidities (such as diabetes, hypertension, obesity) that may complicate further surgeries. They lack adequate health insurance coverage, and they report economic strains.
Cultural factors are also implicated here: these may include religiousity or spiritual beliefs regarding acceptance of one’s fate and cultural caution regarding “too much” Western or medical interventions. These factors may work together or separately to influence lower receipt of breast-conserving and breast reconstructive surgeries.
Question: I’m a cancer survivor, and in my community, I try to get the African-American women to understand more about clinical trials so they can get more involved. Do the doctors think enough African-American women are involved in clinical trials to know whether the treatments work as well on women of color as European-American women, because of our lifestyle and not exercising enough?
Dr. Ashing-Giwa: Much respect and honor to you, as you are a cancer thriver who is also a community advocate for a very important cause.
Clinical trials are the mechanism by which all new preventive and therapeutic agents/drugs/strategies (like behavioral changes including nutrition and exercise) are realized. We must work together to champion the inclusion of diverse populations, in particular ethnic minority communities into clinical trials, to bring medical advancements to all. About 5 percent of all patients participate in clinical trials, and of those, only about 17 percent are ethnic minorities.
The literature suggests that there are multiple factors affecting clinical trial participation and bio-specimen banking (giving cells via saliva, blood or tissue samples to advance medical research). These include many of the same factors that prevent ethnic minorities from accessing breast-conserving and reconstructive surgery. Most clinical trials are offered at large medical and NCI-designated comprehensive cancer centers, where these groups are less likely to receive care. Because they are less satisfied with their care and encounter more difficulties communicating with providers, the healthcare team may not be informing patients about possible trials. They have more pre-existing health problems that could exclude them from the stringent enrollment standards of some clinical trials. Cultural factors likely play a role as well.
Historical factors bear on this situation. There is medical mistrust due to historical and ongoing discrimination in the healthcare system, which heightens one’s vigilance with respect to health care and health-related research. These factors may work together or separately to influence and lower participation in clinical trials and bio-banking.
Dr. Ashing-Giwa: Latina breast cancer survivors are at risk for high levels of emotional distress, including depression. Research studies report that about 50 percent of Latina breast cancer survivors experience elevated depression levels.
Some factors related to depression include having several medical conditions at once, not having access to medical care, not having access to health and social services in their native language or that are sensitive to their culture and traditions, immigration challenges, and stress due to work and family roles/duties. Research suggests that the underlying factors for depression among Latina breast cancer survivors are complex and multi-dimensional and include socio-economic, social, family and cultural factors.
There is a negative stigma associated with mental health issues in Latino culture, and this stigma can prevent many from seeking mental health services. Doing so would be seen as a weakness, a defect or the acceptance of being emotionally unstable or mentally ill. Also, due to strong religious beliefs, many Latinos seek the help of spiritual leaders, including priests and curanderos, instead of mental health professionals.
Cultural beliefs also lead women who suffer from depression and anxiety to seek medical help rather than psychological help. Increasingly, we are finding more Latinas in our studies who are taking anti-depression medications prescribed by their physicians but they are also not receiving combination care that includes counseling or behavioral interventions. Medicine is more accepted in the Latino culture.
Dr. Ashing-Giwa: Many survivors across all ethnicities and age groups rely on spirituality and faith in dealing with cancer. For many women of color, spirituality and religiousity are core components of daily life, and the church, particularly for African-American communities, has been a place of coping, comfort, empowerment, knowledge and status in the face of many challenges...societal, personal and medical.
Here are some components and quotes from a paper I am currently working on based on African-American breast cancer survivors:
“Reliance in faith and God were aspects of spirituality that helped breast cancer survivors throughout their experience. Faith served as a support system by providing the strength to keep moving forward. Breast cancer survivors felt God would not abandon them and was always with them. They felt their experience brought them closer to God.
I am battling because I know the Lord can do anything.
Cancer gave me time to look to the Lord. I prayed ‘Lord I just want to live.’ I went in being afraid of death. I went out not afraid. Whatever you believe in, spirituality or a higher being, that’s what gets you through.
Some breast cancer survivors identified divine control by stating that they felt God had chosen them to go through this and had something planned for them. Part of that plan was for them to help others with breast cancer.
You make peace spiritually and then you put God in control.
When it happened, my support group sisters made me realize that God has something planned, this is his way of leading me closer to him”
Dr. Ashing-Giwa: I developed a Contextual Model of Health Related Quality of Life that proposes health outcomes are shaped by socio-ecological factors at the individual and macro/systemic level.
Macro/systemic-level factors include socio-ecological (socio-economic status, life burden, social support), cultural (ethnicity, ethnic identify, acculturation, interconnectedness, worldview and spirituality), demographic (chronological age, gender) and healthcare system factors (access, affordability, quality/satisfaction with health care system).
Individual-level factors consist of general health (health status, co-morbidity), medical factors (disease characteristics such as cancer traits and age at diagnosis), health efficacy (comfort and proficiency in navigating the healthcare system) and psychological well-being (level of functioning, coping).
In general, women who have greater burden in daily living before cancer suffer undue burden due to cancer and its treatment. Medically underserved women experience greater diagnostic and therapeutic delays, have lower survival and greater mortality and morbidity (pain, arm mobility, depression), greater socio-ecological stress (fewer resources in neighborhoods, limited access to good quality, affordable fruits and vegetables), limited access to supportive care services, poorer health-related quality of life and less favorable survivorship outcomes.
As breast cancer advocates, we must challenge broad societal inequalities that foster breast cancer inequities, support the inclusion of ethnic minority and underserved communities into our advances in medial care and bio-medical research, and acknowledge diverse models of survivorship care (including professional and peer-based care) to better breast cancer outcomes for all.