Healthcare Access Experiences of American Indian Women with Cancer

Background and Purpose: Though there is extensive documentation of the continuing health inequalities between American Indian (AI) women and the general U.S. population, little research examines how interactions with health care providers may influence and exacerbate these health disparities. This is concerning since cancer continues to be one of the main causes of mortality for AI women. The purpose of the study was to provide insight into the experiences AI women with cancer have with their healthcare providers and medical institutions throughout their cancer diagnosis and treatment. Given the profound cancer disparities experienced by AI women, the purpose of the study was to understand the experiences of AI women who receive cancer treatment and care.

Methods: A semi-structured qualitative interview guide was used after it was collaboratively developed with a Community Advisory Board made up of AI community leaders and public health professionals. The sample included 43 AI women with cancer (n=14 breast cancer, 14=cervical cancer, and n=15 colon and other types of cancer) from the Northern Plains region, in the state of South Dakota. Interviews were conducted from June 2014 to February 2015. The audio-recorded interviews were transcribed verbatim, ranged from 30-120 minutes and where analyzed with NVivo data analysis software.

Results: A qualitative descriptive study methodology was used. Qualitative content analysis revealed that women experienced a range of negative and positive interactions with their healthcare providers and the health care system. These experiences included: (a) Health concerns being ignored or overlooked; (b) Lack of consistent and qualified providers; (c) Inadequate healthcare infrastructure; (d) Sub-optimal patient-healthcare provider relationships; (e) Positive experiences with healthcare providers; and (f) Pressure and misinformation about treatment. Of special concern is that 37% (n=16) of women reported extreme difficulties in getting treated and tested for cancer. Not only did participants report experiences of doctors not believing them when they reported health problems, many women reported infrastructure barriers related to a lack of sufficient and consistent doctors, testing facilities, and hospitals within driving distance. Several participants also reported getting diagnosed through routine screening programs, highlighting the need for these programs.

Conclusion and Implications: The findings from this study have important implications for the type of training healthcare workers receive to be more sensitive to the needs of AI women who have cancer and suggest that AI women may need unique support when accessing healthcare. Because of the legacy of historical oppression in AI communities, interventions must be specifically tailored and culturally-sensitive. Additionally, these results suggest that providers may need training in viewing health more holistically, compared to Western models that generally view health as the physical well-being of individuals. Consistent with previous research indicating that fewer AI individuals receive concordant cancer treatment compared to White patients, the findings from this study suggest that there is a need for AI-specific programs for cancer diagnosis and treatment. Considering the difficulty many women had in getting diagnosed, community education and screening programs are an essential need identified by these women.