Ethnic and racial minority populations tend to present for treatment at later stages of cancer and have higher mortality rates from cancer. 1 Disparities also exist in the treatment of these populations. 2 Multiple institutional and systemic barriers are responsible, as noted in the 2003 Institute of Medicine report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. 2
One proposed reason for the delay in seeking treatment is that ethnic and racial minority groups, in particular African Americans, perceive cancer as a death sentence. 3 However, recent studies have revealed that not all African Americans associate breast cancer with certain death. 4–6 Some African American women manage to “live beyond” a diagnosis of breast cancer by living “in the present” and focusing on the positive. 7, 8 This may also be true for other ethnic and racial minority groups with other forms of cancer.
Research is just beginning to address management of late and long-term sequelae of cancer and cancer treatment for ethnic minority populations. 9 Issues related to race and ethnicity, such as socioeconomic concerns and disparities in access to care and treatment, must be included in long-term survivor support programs. 10
Living Beyond Breast Cancer (LBBC), a nonprofit educational agency in Ardmore, Pennsylvania, undertook an initiative to enhance women’s and health care providers’ understanding of survivorship issues of African Americans with breast cancer. Focus groups explored African American women’s thoughts and concerns about surviving and living beyond a diagnosis. The central theme that emerged was “getting connected,” and that became the title of an educational booklet.
Getting Connected: African-Americans Living Beyond Breast Cancer focuses on the cultural strengths of African American women, rather than on their deficits. According to women in the focus groups, positive coping is possible through connection to five areas: self, God and nature, family and friends, other survivors, and the health care team. The process of this connection is outlined in the booklet, which is illustrated with photographs of African American breast cancer survivors and their support persons.
This booklet seeks to provide culturally relevant and accessible guidance for African American women as they go through the processes of diagnosis, treatment, and beginning to live beyond breast cancer. In addition, Getting Connected can provide a model for training health care providers to deliver culturally competent cancer outreach and care to African American women.
LBBC also has produced a bilingual publication tailored to the Latina community. It’s called We Celebrate Tomorrow: Latinas Living Beyond Breast Cancer.
Survivors can go to www.lbbc.org for a complimentary copy of Getting Connected or We Celebrate Tomorrow. Nurses and other health care professionals can also find information at the site about bulk-rate pricing and training.
2. Institute of Medicine. Unequal treatment: confronting racial and ethnic disparities in health care.
Washington, DC: National Academies Press; 2003.
3. Powe BD, Finnie R. Cancer fatalism: the state of the science. Cancer Nurs
4. Bradley PK. The delay and worry experience of African American women with breast cancer. Oncol Nurs Forum
5. Ashing-Giwa K. Quality of life and psychosocial outcomes in long-term survivors of breast cancer: a focus on African-American women. Journal of Psychosocial Oncology
6. Henderson PD, et al. African American women coping with breast cancer: a qualitative analysis. Oncol Nurs Forum
7. Bradley PK, Scharf MN. Getting connected: African Americans living beyond breast cancer.
Ardmore, PA: Living Beyond Breast Cancer; 2001.
9. Aziz NM, Rowland JH. Cancer survivorship research among ethnic minority and medically underserved groups. Oncol Nurs Forum
© 2006 Lippincott Williams & Wilkins, Inc.
10. Freeman HP. Poverty, culture, and social injustice: determinants of cancer disparities. CA Cancer J Clin