Transforming Illness: Learning from Women as They Experience Breast Cancer

Ethical treatment requires that illness management and treatment decisions reflect patient values and preferences. Analyses of patient contribution to treatment decision-making are often framed in the language of autonomy. The concept of relational autonomy has been used to demonstrate that the complexity of illness experiences is ethically relevant. The experience of breast cancer is best understood relationally. Beyond the usual social expectations of any patient, cancer affecting the breast is embedded with cultural meaning due to a perceived relationship to femininity, and fundraising campaigns have created a perception of the strong survivor. Women with breast cancer must incorporate these new understandings of who they are into their perceptions of themselves, while navigating a complicated series of treatment decisions. Studies must capture the complexity of an experience that frequently involves adapting to a distressing diagnosis, surgery, treatments, ongoing therapies as new drugs evolve, and lifestyle modifications. In this qualitative study, I will develop an understanding of the worldview of women navigating their breast cancer journeys. Eight women will each be at the centre of a 6 month ethnography; data will include multiple in-depth interviews and participant journal entries. In addition, interviews will be completed with people from each participant's life, including family, friends, and health practitioners. Thematic analysis will be used to interpret the data by identifying similarities and differences. The results of this study will describe the multiple dimensions of illness experiences and treatment decision-making, suggesting strategies for better respecting relational autonomy in providing ethical care. Results will be informative for academics, practitioners, policy-makers, community-based organizations and patients interested in understanding and improving the illness experiences of women with breast cancer, and similar chronic illnesses