Motivators and Barriers to Treatment Initiation for African American Women with Breast Cancer: Women Share Their Experiences

Background and Purpose: 

Although the overall national incidence rate for breast cancer is the same among African-American women and White women, African-American women have a 42% higher mortality rate from the disease overall. While certain treatments are associated with increased survival for women with a breast cancer diagnosis, evidence suggests that African American women use these treatments less frequently, and in some cases not at all, compared to White women with similar tumor characteristics.

An under-explored area of attention for scientific studies on breast cancer treatment initiation and health decision-making is how to identify and engage in research women who do not follow up with treatment. 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 this community in research thus providing a wealth of information on potential points of intervention leading to increased treatment initiation.

Using a phenomenological qualitative approach, this study explored the lived experience of African American women, living in a socially and economically isolated environment in a large metropolitan area, who had not started a recommended breast cancer treatment plan for more than six-months following a diagnosis. The research questions for this study were: (1) What are the lived experiences of African American women who have not followed up with care for a diagnosis of breast cancer; and (2) How does she apply meaning to the process of deciding whether or not to initiate treatment?       

Methods:

In-depth interviews were conducted with 8 women between the ages of 47 and 78. All women delayed treatment initiation for more than six-months, with three of the women delaying treatment for upwards of two-years. In accordance with phenomenological 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 interviews were audio recorded and transcribed verbatim. Data analysis included illuminating the individual experiences of health decision making of each woman, as well as, crafting a composite narrative of the essence of treatment decision making for this cohort of women.

Results:

Key findings suggest that an understanding of the processes involved with treating breast cancer has more of an impact on treatment initiation than the diagnosis itself. The analysis revealed that women's descriptions of health decision making included four thematic areas: self-efficacy, vulnerability, social isolation, and the rejection of foreign substances in the body. Furthermore, 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.

Conclusions and Implications:

Findings suggest that future interventions focused on improving the initiation of the treatments for breast cancer should 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 clinical setting, would increase a patient’s self-efficacy and ultimately impacting health outcomes.