American Indians (AIs) have some of the poorest documented health outcomes of any racial/ethnic group. Research plays a vital role in addressing these health disparities.
Historical and recent instances of unethical research, specifically the Havasupai diabetes project, have generated mistrust in AI communities. To address the concerns about unethical research held by some AIs in the Heartland (Midwest), the Center for American Indian Community Health (CAICH) has launched a series of efforts to inform AIs about research participants’ rights.
CAICH educates health researchers about the importance of learning and respecting a community’s history, culture, values, and wishes when engaging in research with that community. Through community-based participatory research, CAICH is also empowering AIs to assert their rights as research participants.
Breast cancer incidence is rising and mortality is disproportionately high among American Indians and Alaska Natives, yet screening rates remain low. Using community-based participatory research, we conducted interviews with community leaders (n = 13) and providers from the Indian Health Service, tribal clinics, and urban safety-net clinics (n = 17). Participants in both groups identified similar needs, including culturally-appropriate mammography education, use of Native elders as patient navigators, and an emphasis on preventive care. Pertinent barriers included culturally-specific issues (e.g., historic mistrust and gender roles), cost, transportation, and fear of mammography and potential results. The results reflect the struggles of promoting mammography across diverse populations.
Participants had differing views on the increased incidence of autism. Most participants attributed the increase to changes in diagnostic criteria. There was no consensus on the benefit of implementing universal screening for autism during the 18- or 24-month visit. Many preferred to identify potential problems through general developmental assessments and observations. No participants used specific screening tools for autism, and only one participant was aware of such a tool (M-CHAT). Lack of adequate training on child development and screening methods as well as limited availability of community-based resources to manage children with autism was seen as major barriers to routine screening. Suggested solutions included working toward a stronger evidence base, improving physician training and continuing education, and making systemic changes in healthcare. In conclusion, universal screening for autism at the 18- and 24-month visits is not widely accepted, nor is it implemented by family physicians.
American Indian (AI) men have some of the highest rates of colorectal cancer (CRC) in the United States but among the lowest screening rates. Our goal was to better understand awareness and discourse about colorectal cancer in a heterogeneous group of AI men in the Midwestern United States. Focus groups were conducted with AI men (N = 29); data were analyzed using a community-participatory approach to qualitative text analysis. Several themes were identified regarding knowledge, knowledge sources, and barriers to and facilitators of screening. Men in the study felt that awareness about colorectal cancer was low, and people were interested in learning more. Education strategies need to be culturally relevant and specific.
CBCAR is a useful framework to address health concerns of a refugee community. Insights from this study provided a foundation for a future intervention research project with the refugee women.
Objective
Although colorectal cancer (CRC) mortality rates in the US population have shown a decline, American Indian (AI) CRC mortality rates appear to be increasing. CRC screening rates of AIs remain low when compared with other ethnic groups. The research team explored women's perceptions toward CRC screening, existing barriers, and suggestions to promote education and screening among AI women in Kansas and Missouri.
Methods
Using a community-based participatory research approach, the authors conducted 7 focus groups with AI women older than 50 years (N = 52) to better understand their perceptions of and attitudes toward CRC screening.
Results
Women recognized barriers to screening, such as embarrassment, privacy issues, fear, insurance, and cost. They countered perceived barriers through inventive suggestions for education and awareness via social support systems and intergenerational relationships.
Discussion
CRC screening interventions for AI must be culturally tailored.
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