A Phenomenological Approach to Understanding How Women Make Breast Cancer Treatment Decisions within the Context of Communities

African-American women have a 40% higher mortality rate from breast cancer than White women. While there are many factors contributing to this disparity, the timely initiation of treatment is growing area of interest. Certain treatments are associated with increased survival for women with a breast cancer diagnosis, yet evidence suggests that African American women use these treatments less frequently compared to White women with similar tumor characteristics. An under-explored area of attention for scientific studies is how to identify and engage in care women who do not follow up with treatment following a suspicious finding. To date these women have not been included in research focused on understanding treatment decisions and patient engagement in care decisions. Often these are among the most marginalized women of our society who have some of the highest rates of mortality from many different health related outcomes. This study helps to fill this gap by identifying and engaging these women in research. This study explored in-depth the lived experience of eight African American women, living in a socially and economically isolated environment in a large metropolitan area. In all cases the initiation of treatment was delayed for more than six-months, with a delay in the initiation of treatment of more than a year in three of the eight examples and more than two years in one of the eight examples. In accordance with phenomenological qualitative methodology, the interviews were open-ended, allowing for rich, in-depth data to emerge relatively unbiased by the assumptions and expectations of the researcher. The research questions for this study were: (1) What are the lived experiences of African American women who had not followed up with care for a diagnosis of breast cancer for 6-months or more following a suspicious finding? (2) How does she apply meaning to the process of deciding whether or not to initiate treatment? and (3) Under what socioeconomic circumstances does the phenomenon (a delay in treatment initiation) persist? Key findings suggest that engaging patients in health care decision making necessitates a better understanding of the processes involved in treating breast cancer, the impact that the side-effects may have on her quality of life, and access to patient support services to counter these side-effects. Also, the findings from this study highlight that most of the communication about treatment initiation occurred at the primary care level, prior to initiating contact with oncology services. Primary care proved to be the most important provider-patient relationship for these women. It is where they go with initial concerns about their breasts and where they return for more information about treatments and patient support for side-effects. Furthermore, the context within how they experienced the phenomenon is structured by underlying conceptualizations of chronic traumatic events coupled with community resource deserts. Finally, all of the women reported keeping their illness to themselves and described social and cultural barriers to utilizing available support systems to assist with unmet needs. All of these situations taken together allowed the delay in the initiation of treatment for breast cancer to persist. These results indicate that future interventions focused on engaging women in care decisions and decreasing socioeconomic barriers to the initiation of the treatment for breast cancer should take place between primary care providers, oncologists, and their patients and focus on de-mystifying the process of treatment. Incorporating this information, as a type of barrier-focused community-based intervention, or improved case management services to assist cancer patients in the primary care setting, would impact cancer mortality outcomes

Improving breast cancer services for African-American women living in St. Louis

A mixed methods, community-based research study was conducted to understand how provider-level factors contribute to the African-American and white disparity in breast cancer mortality in a lower socioeconomic status area of North St. Louis. This study used mixed methods including: (1) secondary analysis of Missouri Cancer Registry data on all 885 African-American women diagnosed with breast cancer from 2000 to 2008 while living in the geographic area of focus; (2) qualitative interviews with a subset of these women; (3) analysis of data from electronic medical records of the women interviewed; and (4) focus group interviews with community residents, patient navigators, and other health care professionals. 565 women diagnosed with breast cancer from 2000 to 2008 in the geographic area were alive at the time of secondary data analysis; we interviewed (n = 96; 17 %) of these women. Provider-level obstacles to completion of prescribed treatment included fragmented navigation (separate navigators at Federally Qualified Health Centers, surgical oncology, and medical oncology, and no navigation services in surgical oncology). Perhaps related to the latter, women described radiation as optional, often in the same words as they described breast reconstruction. Discontinuous and fragmented patient navigation leads to failure to associate radiation therapy with vital treatment recommendations. Better integrated navigation that continues throughout treatment will increase treatment completion with the potential to improve outcomes in African Americans and decrease the disparity in mortality