Date of Award
Doctor of Philosophy (PhD)
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.
Chair and Committee
Carolyn Lesorogol, Vanessa Fabbre, Jennifer Griggs, Darrell Hudson
Noel, Lailea, "A Phenomenological Approach to Understanding How Women Make Breast Cancer Treatment Decisions within the Context of Communities" (2016). Arts & Sciences Electronic Theses and Dissertations. 878.