"Sorry for laughing, but it's scary": humor and silence in discussions of Colorectal Cancer with Urban American Indians.

BACKGROUND: Given high rates of cancer mortality in Native communities, we examined how urban American Indian and Alaska Native elders talk about colorectal cancer (CRC) and CRC screening. METHODS: We conducted seven focus groups with a total of 46 participants in two urban clinics in the Pacific Northwest to assess participant awareness, perceptions, and concerns about CRC and CRC screening. Using speech codes theory, we identified norms that govern when and how to talk about CRC in this population. RESULTS: Our analyses revealed that male participants often avoided screening because they perceived it as emasculating, whereas women often avoided screening because of embarrassment and past trauma resulting from sexual abuse. Both men and women used humor to mitigate the threatening nature of discussions about CRC and CRC screening. CONCLUSIONS: We offer our analytic results to assist others in developing culturally appropriate interventions to promote CRC screening among American Indians and Alaska Natives.

Barriers to Cancer Care among American Indians and Alaska Natives.

INTRODUCTION: Cancer is among the leading causes of death in American Indians and Alaska Natives (AI/ANs), with rates increasing over the last two decades. Barriers in accessing cancer screening and treatment likely contribute to this situation. METHODS: We administered structured clinical interviews and conducted descriptive and multiple linear regression analyses of demographic, health, spiritual, and treatment factors associated with self-reported barriers to cancer care among 143 adult AI/AN oncology patients. RESULTS: High levels of satisfaction with cancer care, older age, positive mental health quality of life, and positive physical health quality of life were all significantly associated with lower scores for cancer care barriers, explaining 27% of the total model variance. CONCLUSION: Addressing barriers to cancer care might help to reduce health disparities among AI/AN oncology patients. Future research should determine whether reducing barriers improves engagement with cancer treatment and overall health outcomes.

Health Disparities Research Among Small Tribal Populations: Describing Appropriate Criteria for Aggregating Tribal Health Data.

In response to community concerns, we used the Tribal Participatory Research framework in collaboration with 5 American-Indian communities in Washington, Idaho, and Montana to identify the appropriate criteria for aggregating health data on small tribes. Across tribal sites, 10 key informant interviews and 10 focus groups (n = 39) were conducted between July 2012 and April 2013. Using thematic analysis of focus group content, we identified 5 guiding criteria for aggregating tribal health data: geographic proximity, community type, environmental exposures, access to resources and services, and economic development. Preliminary findings were presented to focus group participants for validation at each site, and a culminating workshop with representatives from all 5 tribes verified our final results. Using this approach requires critical assessment of research questions and study designs by investigators and tribal leaders to determine when aggregation or stratification is appropriate and how to group data to yield robust results relevant to local concerns. At project inception, tribal leaders should be consulted regarding the validity of proposed groupings. After regular project updates, they should be consulted again to confirm that findings are appropriately contextualized for dissemination.

Conversations about Community-Based Participatory Research and Trust: "We Are Explorers Together".

BACKGROUND: This paper describes a study circle and a series of conversations with a community partner that were part of a project that grew out of a partnership between Native People for Cancer Control, a research program at the University of Washington, and five tribes in Washington, Idaho, and Montana. METHODS: Researchers undertook a study circle to build bioethics capacity and, specifically, to better understand the values that should guide community-based participatory research (CBPR). RESULTS: Study circle members identified five action guiding principles for CBPR: respect tribal sovereignty, promote transparency, hear community priorities, learn from each other, and take collective action. This activity led to a series of conversations between researchers and the chair of Shoalwater Bay Tribe, Charlene Nelson. Nelson suggests the metaphor of "exploration" as a way to think about what good CBPR looks like. Exploration reframes the research enterprise, from a systematic scientific inquiry conducted by academic investigators to a less predictable activity that reaches into the uncontrolled and unknown. We used this metaphor to explore three features of CBPR we believe to be essential to building trust: ongoing commitment and time, direct collaboration with community members and new learning for all involved, and candid and cautious action. CONCLUSIONS: The CBPR literature underscores many of these same points; however, we found the metaphorical language offered by Nelson enriched their meaning and deepened study circle members' appreciation of them.

Assessing Needs for Cancer Education and Support in American Indian and Alaska Native Communities in the Northwestern United States.

American Indians and Alaska Natives (AI/ANs) experience significant cancer disparities. To inform future public health efforts, a web-based needs assessment survey collected quantitative and qualitative data from AI/AN community health workers and cancer survivors in the northwestern United States. Content analysis of qualitative responses identified themes to contextualize quantitative results. Seventy-six AI/AN respondents (93% female) described substantial unmet needs for education and resources to assist cancer survivors, including a shortage of patient navigators, support groups, and home health care workers. Fear of negative outcomes, a culturally rooted avoidance of discussing illness, and transportation difficulties were cited as major barriers to participation in cancer education and receipt of health services. Face-to-face contact was overwhelmingly preferred for community education and support, but many respondents were receptive to other communication channels, including e-mail, social media, and webinars. Survey results highlight the importance of culturally sensitive approaches to overcome barriers to cancer screening and education in AI/AN communities. Qualitative analysis revealed a widespread perception among respondents that available financial and human resources were insufficient to support AI/AN cancer patients' needs.

Caregiving among American Indians and Alaska Natives with cancer.

PURPOSE: Caregivers are an important source of support for oncology patients during cancer diagnosis and treatment, often helping patients manage barriers to care. Our study had three goals: to describe the characteristics of caregivers for American Indian and Alaska Native (AI/AN) oncology patients, to assess the similarities and differences between the perceptions of caregivers and patients regarding barriers to cancer care, and to compare AI/AN caregivers to non-AI/AN caregivers on perceived barriers to cancer care. METHODS: We conducted a structured interview that assessed perceived barriers to cancer care with a paired sample of 98 adult caregivers and 98 AI/AN oncology patients and to assess the degree of agreement between these two groups. We also investigated whether AI/AN and non-AI/AN caregivers had differing perceptions of barriers to cancer care. RESULTS: Caregivers reported that their role was very meaningful and not highly stressful. Caregivers and patients agreed 70 % of the time on specific barriers to cancer care. Both groups overwhelmingly reported financial and family or work issues as major barriers to care, whereas trust in providers was the least frequently endorsed barrier. A comparison of AI/AN and non-AI/AN caregivers revealed that AI/AN caregivers identified confidentiality among clinical staff as a significant barrier, whereas non-AI/AN caregivers perceived financial barriers as more significant. CONCLUSIONS: Finances, family, and work are perceived as the largest barriers to the receipt of cancer care for AI/AN oncology patients. Both patients and caregivers trusted health-care providers. Assessing barriers to care early in the assessment process may result in better engagement with cancer treatment by patients and their caregivers.