The decision to undergo the surgical removal of any healthy body part, and particularly one as universally accepted as a symbol of femininity and motherhood as the female breast, seems, on the surface, unfathomable. Nevertheless, national, statewide, and single-institution studies confirm that women in the United States with a first diagnosis of sporadic unilateral early-stage breast cancer have increasingly chosen to undergo contralateral prophylactic mastectomy, the surgical removal of their unaffected and healthy breast, concurrent with the therapeutic surgical removal of the diseased breast (King et al., 2011; Kummerow, Du, Penson, Shyr, & Hooks, 2015; Kurian et al., 2009; Tuttle, Haberman, Grund, Morris, & Virnig, 2007; Tuttle et al., 2009; Yao, Stewart, Winchester, & Winchester, 2010).
Evidence-based, consensus-driven guidelines and/or position statements by experts in the field fail to demonstrate clear and unwavering support for this irreversible surgical decision among women of average risk for breast cancer (Boughey et al., 2016; Giuliano et al., 2007; Gradishar et al., 2017). Experts note that for the majority of women with Stage I or II breast cancer, the absolute 20-year survival benefit of contralateral prophylactic mastectomy has been calculated as less than 1% among all age, ER status, and cancer stage groups (Portschy, Kuntz, & Tuttle, 2014).
Following nearly a century of paternalistic medical decision making, the rise in patient engagement emerges from two parallel movements over the past 20 years; one toward the explicit use of clinical trial data to guide clinical practice (evidence-based medicine). The other toward patient empowerment and engagement through explicit informed consent, shared decision-making, and patient-centered care (Kierns & Goold, 2009). The Institute of Medicine (IOM), in their conceptual framework for delivering high-quality cancer care, prioritized engaged patients making health care decisions in concert with their clinician, over evidence-based cancer care (IOM, 2013). This IOM priority points to a need for a better understanding of a woman’s direct engagement in the decision-making process for contralateral prophylactic mastectomy.
Although promotion of patient engagement within the United States weights a patient’s values, goals, and preferences in at least equal measure to that of the experts and current best evidence (Institute of Medicine [IOM], 2013), knowledge of how women consider the pros and cons of the decision for contralateral prophylactic mastectomy remains limited. The extant literature on contralateral prophylactic mastectomy decision-making provides little evidence of this question being posed directly to women in a systematic way. Rather, the majority of studies attempting to understand this process have mostly done so through the retrospective secondary analysis of large existing datasets. Such studies have served primarily to advance our understanding about which women choose contralateral prophylactic mastectomy, in terms such as demographics, clinico-pathologic details, and pre-surgical imaging, but not how women engage in the decision-making process for contralateral prophylactic mastectomy (Baker, Mayer, & Esposito, 2013).
The purpose of the research study is to explore the process of how women with the first diagnosis of sporadic unilateral early stage breast cancer choose contralateral prophylactic mastectomy. A prospective qualitative approach offers a clear opportunity to increase nursing knowledge of the process by which truth is arrived, from the perspective of the participant, without the loss of contextual details. Grounded theory methodology as developed by Glaser and Strauss (1967) and described in detail by Glaser (1978, 1998, 2001) and Holton (2010) is ideally suited to discovering how people manage their lives in the face of existing or potential health challenges (Schreiber & Stern, 2001) offering the opportunity for discovery of a theory that can explain what is “really going on”. The goal of this grounded theory study is to expand nursing knowledge of women's decision-making within the existing social context as a base for health policy development, expansion of nurse's roles, and empowerment of women.
The significance of the study of contralateral prophylactic mastectomy decision-making is directly linked to its prevalence, outcomes, and the availability of alternative approaches to risk reduction. With increasing numbers of women in the United States diagnosed with early stage breast cancer choosing contralateral prophylactic mastectomy seemingly against evidence-based, consensus-driven guidelines and/or position statements by experts in the field (Boughey et al., 2016; Giuliano et al., 2007; Gradishar et al., 2017), the process of making such an irreversible and life-changing decision needs to be more fully understood by nurses and other health care providers. Such an understanding serves to expand nursing knowledge, add depth to the literature, inform best care practices, and attain optimal health outcomes for this ever growing population.
Purpose:
The purpose of the research study is to explore the process of how women with the first diagnosis of sporadic unilateral early stage breast cancer choose contralateral prophylactic mastectomy.
Methods:
The present study will use grounded theory methodology as developed by Glaser and Strauss (1967) and described in detail by Glaser (1978, 1998, 2001) and Holton (2010).
Context/Setting
The context of the research is prospective. Initial interviews with participants familiar with the phenomenon of interest will be conducted after the surgical decision for contralateral prophylactic mastectomy has been made by participant and prior the surgery itself. The setting for the research will be dependent on the preferences of the participants, distance, and available space,
Participants
The research will begin with nonprobability purposive sampling among participants initially selected because they can shed light on the phenomenon under investigation, namely women at average risk for breast cancer (American Cancer Society [ACS], 2015) with a first diagnosis of unilateral breast cancer who have made the decision for contralateral prophylactic mastectomy. Sample size cannot be predicted at the beginning of a grounded theory study since the researcher does not know beforehand what concern will emerge as problematic and how it will be resolved (Artinian, Giske, & Cone, 2009; Glaser, 1978). Subsequent sampling will be related to the findings that emerge from the course of the study and may include textual material, and interviews with significant others and/or healthcare providers.
Recruitment
The initial nonprobability purposive sample will be recruited with the use of a flyer distributed to breast surgical practices within the multisite healthcare system where the researcher is employed; breast surgical practices in the community; and through the local chapter of the Oncology Nursing Society of which the nurse researcher is a member.
Procedure
Data will initially be collected through tape-recorded interviews and will begin guided by the following question: tell me about your breast surgery decision. The research will follow the non-linear steps outlined by Glaser (1978). These steps include collection of data, open coding, theoretical sampling, generating memos, emergence of core social psychological problems and processes, theoretical sampling, and continued coding and memoing as analyst focuses on the core. These steps will occur simultaneously, rather than linearly, and will end with the writing of a substantive or formal theory.
Analytic Approach
The analytic approach in a grounded theory study, simultaneously with all other steps, employs the process of constant comparison of data and involves three levels of conceptual perspective analysis (Glaser, 1998). First, data will be analyzed line-by-line and coded. Codes will then be organized into conceptual categories and their properties. Finally, there will be an overall integration of data into a theory Glaser (1998)
Results:
Not available
Conclusions:
Not available