Learning from women with breast cancer : an ethnography study




Dunlop, Alicia Anne

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The purpose of this cross-sectional ethnography was to develop theory and knowledge about how women in Canada live with breast cancer. Cross-sectional ethnography describes a number of individuals from a cross-section of a culture or subculture for a unit of study (Boyle, 1994). A cross-section of women with breast cancer were studied, not an interacting group of women with breast cancer (Werner & Schoepfle, 1987 ). As a result of counselling women with breast cancer over a period of two years, I have learned that despite the differing treatment protocols and differing kinds and stages of breast cancer, women with breast cancer are members integrated into a subculture which has many common words, phrases, images, and themes. Thirteen women with breast cancer form the unit of study for this research. Cancer is a complex array of diseases which develop in 25% of the population; one woman in nine is diagnosed with breast cancer in Canada (Holland, 1989), and one woman in three with breast cancer will die of metastases (Elliott, Rahimi, Tremblay, Shenoy, Rossiter, & Saulnier, 1997). The incidence of breast cancer is increasing annually (O’Donnell, Coughlin, & LeMarbre, 1992); breast cancer is the most frequent cancer in women and is the leading cause of death in women between the ages of 35 and 55 (Andrulis, 1997). Secondary goals of this research were to have the emergent knowledge published to provide increased choices and actions for those newly diagnosed with breast cancer, and to provide data, facts and information to counsellors, professionals and others working and living with breast cancer. Psychological distress in women with breast cancer is often translated into psychopathology by those following the medical model in breast cancer treatment (Mathieson, 1991). Depression and anxiety diagnoses are predominant in women with breast cancer, with rates of depression diagnoses as high as 75% (Massie & Holland, 1989). A study by Garcia, Cristal-Luna, Li, Uai, Gonzalez, Tarmayo, Masadao, Lola, and Matumog (1997) concluded that the presence of cancer disrupts almost every aspect of an individual’s life and that depressive symptoms were experienced throughout the course of chemotherapy. Symptoms experienced by breast cancer patients are often translated by DSM IV criteria into psychiatric disorders, most often depression and anxiety (Derogatis, Abeloff, & Melisaratos, 1983). After counselling women in two cancer Clinics, I began to understand that the experience of having breast cancer imposes many stresses which are in fact, normal, given the context of the cultural stigmata and traumata which result from the diagnosis and treatment o f this disease. Women caught up in the shock of diagnosis and the invasive treatments alluded to colloquially as “slash, burn, and poison” blamed themselves. Most of all they asked: “How do other women live with breast cancer?" This study is an initial response to that question. Thirteen women who had been diagnosed with breast cancer participated in this study. A cross-sectional ethnography was the research method. Ethnographic questioning (Spradley, 1979) is used to organize and analyse data. Using the North American culture as background, and the subculture of those with breast cancer as foreground, ethnographic questioning elicited the shared contexts of 13 women’s life worlds as they described their experiences after a diagnosis of breast cancer. This ethnographic method facilitated the analysis of the women’s experiences by searching for cognitive and behavioural themes of meaning in the women’s verbal descriptions. Dominant themes which emerged and recurred through the 13 interviews were: 1) adaptation to ambiguity and stress; 2) sadness and anger; 3) fear and terror; 4) lack of support; 5) dehumanization; 6) disempowerment and trivialization; 7) shame and stigma; 8) coping; 9) minimization and denial; 10) it (cancer) changes everything; 11) the game of survival; 12) the doctor is God; and 13) metaphors, images, and other cultural symbols specific to those with a diagnosis of breast cancer. Conclusions recommend the inclusion of these and other themes in the psychotherapeutic frameworks utilized by those counselling individuals with a diagnosis of breast cancer.



Breast, Cancer