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Understanding the Lived Experience of Being Diagnosed with Breast Cancer on the Gila River Reservation and Selecting a Cancer Treatment
Breast cancer (BrCA) is the second leading cause of cancer death for American Indian women who have the poorest survival rate of all ethnic groups. It is presumed this is related to limited access to care and understanding of the disease. The Gila River Indian Community (GRIC) in central Arizona is home to the Akimel O'odham (Pima) and Pee Posh ( Maricopa) tribes. Primary care services are provided in the community, but women must travel off the reservation for surgery, advanced diagnostic testing, specialist consultation, and treatment. Thus, understanding the lived experience of women diagnosed with BrCA may help the community and local healthcare system begin to develop strategies to facilitate care and support throughout the entire disease trajectory. Hypothesis: This is not a hypothesis driven study. This qualitative study will generate hypotheses based on the data that emerges. Aims: 1) Describe the lived experience of women diagnosed with BrCA in the GRIC; 2) Describe the women's decision making processes related to BrCA treatment; 3) Mentor community members in the community based participatory research (CBRP) process. Design: Phenomenologic; CBRP. Phemonology is a method used when little is known on a topic and essential elements of the experience must be identified. This method is congruent with the culture of story telling in Native Americans. The research is CBPR as the GRIC has come forward and asked their research partners to help them answer these research questions (community driven). Individual community members have participated in every step of the study develpment and will participate in the actual research process and authorship of findings. Additional community members will also be involved. Sample: GRIC BrCA survivors diagnosed between 2000-2005. Method: Audiotaped interviews using two open ended questions: 1) Please tell me about your experience when you were diagnosed with your breast cancer; 2) Please tell me how you decided on what type of breast cancer treatment you would take Analysis: Colaizzi's eight step analysis for phenomenology.
Breast cancer is the second most common cancer in American Indian women who have the poorest survival rate of all ethnic groups. This survival difference is believed to be related to lower rates of screeing, later cancer detection, and also issues related to access to healthcare. The Gila River Indian Community (GRIC) is an Indian Reservation located in central Arizona and is home to the Akimel O'Odham (Pima) and Pee Posh (Maricopa) tribes. Although there are primary healthcare services within the community, women diagnosed with breast cancer must travel beyond the reservation for surgery, special testing, cancer specialists, and treatments. It is important to understand what they experience, how the breast cancer affectrs their lives, and how they make treatment decisions. A study has been proposed by the community members themselves to help begin to understand what is needed to help women get quality, timely, and culturally appropriate care and support during their cancer journey. Tribal members have asked the research partners to collaborate on this project and to begin to mentor them in community based participatory research. Aims: 1) Describe the lived experience of women diagnosed with breast cancer in the GRIC; 2) Describe the women's decision making processes related to breast cancer treatment; 3) Mentor community members in the community based participatory research process. Community members will actually be part of the research team and participate at every level in the process. Story telling is a common way people speak in the GRIC to help relate an event or experience, teach a lesson, or give support. Listening to the women's stories will give us much needed information. The research method of just listening to the stories is called phenomenology. Each woman who participates will be asked two questions: 1) Please tell me about your experience when you were diagnosed with your breast cancer, and 2) Please tell me how you decided on what type of breast cancer treatment you would take. The stories will be reviewed and analyzed to determine common themes which helps describe the overall experience. We believe this study may help the communtiy and local healthcare system begin to develop strategies to facilitate care and support throughout the entire disease trajectory.