To our knowledge this is the first description of adjuvant treatment decisions and communication experiences of urban Black women with breast cancer. Additionally, this is the first paper to describe a skills intervention approach that may meet their needs. Most efforts to reduce racial disparities in breast cancer outcomes have focused on improving screening. Ensuring that Black women receive indicated adjuvant treatment may be a cost effective approach to improving their breast cancer outcomes [49
]. Our preliminary results suggest that the use of a peer-based adjuvant decision support intervention may be acceptable and useful to Black women with breast cancer. Our formative data suggest that patient-provider communication influenced women’s adjuvant therapy decisions and that improved communication might lead to adherence to adjuvant therapy.
In our study, women who reported better communication were able to explain their diagnosis, provide a rationale for treatment options, and were more likely to receive adjuvant therapies compared with women who were less informed about their diagnosis [20
]. These findings support studies on breast cancer screening that highlight the importance of physician recommendations after a patient receives medical test results [5
]. Breast cancer patients who ask more questions have been found to be more knowledgeable than those who ask fewer questions [51
]. While some women in our study blamed themselves for their lack of participation in discussions with physicians, they should not be blamed. Women’s lack of participation may be due to feeling intimated by their lack of understanding of technical terms and medical jargon [35
]. Consultation planning and skill development approaches as offered in this pilot may help patients organize and prepare for important treatment decisions.
We found that several cultural values (e.g., spirituality, collectivism) were important in women’s cancer therapy experiences [12
]. Faith in God helped women cope with their diagnosis, believe they could endure treatment, and ultimately survive the disease. In concert with Gibson [53
], inner strength and hope were prevalent among study participants. We observed that women who described fatalistic beliefs prior to their diagnosis were less likely to report being fatalistic after their diagnosis. Thus, contrary to some reports, cultural beliefs such as fatalism did not negatively impact women’s treatment decisions [54
]. This may be due to sample differences in geographic region and other demographic factors [55
]. Fatalistic beliefs were not prominent factors that prevented women from adhering to their physician’s recommendations. Yet, in qualitative interviews, compared to Black providers, non-Black providers were more likely to report perceptions of fatalism in some of their Black patients. Powe and colleagues [57
] noted that physicians perceived Black patients as more fatalistic than their actual fatalism scores reflected. Thus, it may be useful to recognize the potential impact that provider perceptions can have on patient-physician relationships interactions [10
Survivors suggested that newly diagnosed women should be matched with peer survivors. This supports studies that suggest that survivors are important nurturers
for Black women and provide education and support [32
]. Storytelling by survivors and survivor advocates was an important activity, especially for newly diagnosed women. Storytelling is an important tradition within African and African-American cultures for maintaining a lively and widespread verbal art tradition [58
]. The communication exchange between the coach their stories mirrored the faith-based activity of giving a “witness” testimony which has been used to promote cancer screening [32
]. The coaches and patients shared a common reliance on God which created what Banks-Wallace describes as “touchstones”: things that remind people of a shared heritage [58
The use of narrative methods has expanded beyond the effective use of cancer survivors to deliver cancer screening messages to also include empirical evaluation of specific factors that may influence the effectiveness of survivors’ stories [46
]. Krueter and colleagues found that the best predictor of whether women became engaged in a survivor’s story was whether they viewed her as similar to themselves and liked her [46
]. Future assessment of the “story exchange” may aide in helping to further target our intervention messages.
Overall, our results provide insight into the decision-making experiences of some Black breast cancer patients and provides valuable information to guide intervention development. However, there are some limitations to our approach that should be acknowledged. First, our approach is based on data from a small convenience sample of highly educated women. This sample may not be representative of all Black breast cancer patients and the intervention should be tested in more educationally diverse samples. Another limitation is that we relied on patient and provider self reports about communication because it was not feasible to videotape, audiotape, or observe encounters. However, our in-depth qualitative approach provides rich data and enabled valuable feedback in order to revise the materials before conducting a larger study.
The National Cancer Institute asserts that telling one’s health “story” is an important form of active patient communication [29
]. Building upon the existing cultural processes of story telling, our intervention incorporates strategies for activating patients by asserting oneself and asking questions. It facilitates informed decision-making, describes options for the alleviation of treatment side effects, instills active listening skills, and inspires hope. These preliminary findings can be used to inform patient-provider interactions or other interventions.