Communication to Reduce Cancer Disparities
African American women are less likely to be diagnosed with certain types of cancer, such as breast cancer. Yet, breast cancer is the most common cancer among African American women and African American women confront higher mortality rates compared with the general population. Effective cancer communication can be one important strategy to reduce these cancer disparities. African American women are more likely to report trouble communicating openly with loved ones and their health care professionals, and often have not seen a loved one get past their cancer experience.
A study by Dr. Elisia Cohen examines how a sample of African American women understands the uncertainties fundamental to cancer risk communication. To be effective, health professionals should match personally relevant and accurate cancer information to individuals' information needs. That is, it is important to consider the ways in which individuals' understandings of cancer are culturally grounded. Variations in the meanings of cancer risks to individuals, their perceptions of cancer susceptibility, its potential harm, and outcomes associated with the disease point to how individuals may take different courses of action in response to a cancer diagnosis.
To probe and observe how African American women communicate about cancer and breast cancer, 49 African American women between the ages of 21 to 65 participated in focus group discussions about cancer, breast cancer, and mammography in St. Louis. The women were asked to tell a story about talking about cancer with a friend or loved one. The women described worry about cancer and its prevalence among African American women, ambivalence and uncertainty, belief that what is not uncertain is certain and awful, fear and avoidance, contradictions in claiming and rebuking cancer, and hopefulness.
Women in the discussion groups described the pervasive worry they felt about cancer, and its prevalence among African American women. They said that they thought about cancer “a lot,” “had relatives who had it,” and find “it's a constant thing” to be confronted by their loved ones' cancer diagnoses in everyday life. Although many women described family members who “did not acknowledge” cancer, many just knew that cancer was prevalent in their family histories, with many family members dying from the disease without treatment. They also worried that cancer would “lay dormant” and suddenly take the life of their loved ones.
The discussion also touched on the ambivalence and pervasive forms of uncertainty they associated with cancer prevention and detection practices. Women indicated fear of going to the doctor and getting a mammogram, due to their worry about the unknown. Moreover, what was not uncertain or ambiguous to women, was certain and awful. Women knew women, very simply, who were diagnosed with cancer and became “very very sick.” Not many African American women who they knew “got past it” or celebrated their survivorship publicly. For example, no one expressed familiarity with Sisters, Inc., a national African American breast cancer survivorship organization.
Participants also frankly described their reasons for fear and avoidance. Beyond issues of health insurance, women reported not wanting “to be cut up on,” an orientation to “self-doctoring,” and a norm among women “not to worry” their loved ones by keeping terminal illnesses hidden.
Many women spoke openly about their refusal to acknowledge cancer and their need to rebuke cancer in spiritual terms. One woman described howher family members would say “Don't claim it,” for fear of speaking the cancer into existence. By considering cancer as “a negative energy that violates the spirit” and not “acknowledging it” in the mind, more than one women reported that by not claiming it, they would avoid or avert it.
Other women described their belief in faith healing, and contradictions between relying on different types of healers: medical and spiritual. Women expressed concern that some African American women were privileging “religious ambitions” at the expense of “real healing” through medicine.
Clearly, despite concerns that cancer was an awful illness, and the difficulty in talking openly about cancer, particularly with loved ones, they also resisted explanations that when an individual was diagnosed with cancer that death was inevitable. Although there was reticence in their conversation about cancer, women also discussed hopefulness as they learned the importance of mammography. They also reported instances where they learned about cancer prevention mechanisms from women talking opening about cancer in everyday situations, educating others about effective prevention and treatment mechanisms.
Understanding the reasons why African American women report feeling torn about communicating openly about cancer is important. Given that African American women are more likely to die from cancer than any other group in the United States, improved communication with health care professionals and referral systems can help eliminate these health disparities in cancer.
To support African American women with significant cancer fears and concerns about talking openly about cancer, cancer communication professionals should try to develop communications that are tailored to individuals' sensitivities (whether about personal family history, religious convictions, or otherwise) to encourage women to pragmatically resolve tensions in their risk appraisals. One means of doing so is to develop effective cancer communication strategies demonstrating how cancer survivors offer a ray of hope. Successful efforts include connecting African American women with African American cancer survivors and community organizations, such as the Breakfast Club. Tailored cancer communication to individuals' pre-existing cancer understandings and related beliefs may help women claim both medical and spiritual healing in their pursuit of allaying their cancer fears. As other cancer communication researchers' suggest: A woman with faith in an active God may be encouraged to think about good health before and after her mammogram each year, and if she feels fearful, to “turn it over to God.”
Clearly the group discussions from this research highlight how many of the coping strategies that women use to deal with their cancer fears might worsen their risks for late diagnosis and treatment. A clear implication from this research is that African American women need help confronting their cancer fears, which may be accomplished through culturally-oriented messages designed to address ways women can reduce their cancer burdens.