Abstract A14: Storytelling: A method for understanding the cancer phenomena among American Indians

Introduction: Cancer is rapidly becoming more commonly diagnosed in American Indian communities. To better understand the cancer phenomena experienced by adult American Indians, storytelling was used as a methodology to gather information on the cultural constructs of cancer. Methods: A mixed method approach was utilized in an experimentally-designed study to test a cancer symptom management intervention. During the first phase of a three phase study, a group of American Indian cancer patients was interviewed at an Arizona Indian hospital using a storytelling method to gather detailed information on cancer symptom barriers and management. Nineteen adult cancer patients told the story of their cancer experience, from diagnosis and treatment to remission or reoccurrence. Each patient was interviewed separately, allowing for the “story” of their unique experience to evolve. Interviewer prompts guided the storyteller to more fully explain the cancer experience in terms of diagnosis, etiology, communication, treatment, stigma, limitations, fears, support, and future expectations. Analysis: All interviews were tape recorded and transcribed. The Grounded Theory method of data analysis was employed. Transcribed interviews were analyzed and grouped into the following explanatory groups: etiology, treatment, fears, expectations, and experiences. Findings: Cancer was described as a “illness” and the etiology is largely unknown. It is seen as another challenge in one9s life path that a person can live through, even if the outcome is death, without impacting the essence of one9s personal identity. Although there is little sigma associated with the cancer diagnosis, the loss of hair during chemotherapy treatment can be more traumatic to the patient as the initial cancer diagnosis, as hair has special symbolism among tribes. Loss of function is often compensated by family support, however, silence and “bearing the pain” is common. The need to improve patient-provider encounters is evident in the patient9s concern over poor communication and brief encounters with busy providers. Confusion over long-range expectations and understanding of the cancer experience, in terms of outcomes, survivorship and coping mechanisms were seen. Spirituality was evident as an important aspect of the cancer patient9s daily living. Storytelling gave patients the opportunity to share their cancer experience without having the need for high levels of literacy or understanding of complex biomedical terminology. Summary: This study provides new insights into delivering high-quality culturally-appropriate oncology and social services to American Indian cancer patients and their families. Three key findings from the study are: 1) That cancer is another stressful life experience that these patients and their families can cope with given social support that is culturally-appropriate; 2) Storytelling is itself a culturally appropriate communication and support mechanism as it allows patients to understand and communicate their cancer experience from their own unique personal and cultural perspectives; and 3) the study results suggest that storytelling may be a valuable tool to help patients from other racial/ethnic backgrounds better understand, accept and cope with their cancer and other chronic illnesses.