Using a community-based participatory research approach to collect Hopi breast cancer survivors and their families' stories about breast cancer treatment

INTRODUCTION AND OBJECTIVES: Breast cancer is the most frequent cancer endured by women on the Hopi Reservation in northern Arizona. Women diagnosed with breast cancer and their families need knowledge of how other women living on the reservation have successfully survived breast cancer. Focus groups were used to explore local barriers to breast cancer treatment compliance. Insights gained were incorporated into digital stories designed for the Hopi Women's Health Program (HWHP) as an educational/navigational tool for newly diagnosed Hopi women with breast cancer and their family supporters. METHODS: Focus group participants representing three different groups were recruited: Hopi female breast cancer survivors, family supporters of Hopi breast cancer survivors and HWHP staff and community health workers (CHW). RESULTS: Based on 3 focus group outcomes, conceptual themes were identified and included in the eight stories created. Story topics were: HWHP information, breast cancer support systems, surviving breast cancer, treatment side effects and family support. DISCUSSION: The strengths of the project included the development of a strong collaboration with the HWHP, the integration of local perspective in a health education tool and the successful application of a community based participatory research (CBPR) approach in a Native community. The primary limitation of the project was the small number of participants.