Health Behavior Change Intervention Preferences Expressed by American Indian Cancer Survivors From a Southwest Tribal Community: Semistructured Interview Study.

BACKGROUND: While many factors, including social determinants of health, affect cancer mortality, one modifiable risk factor that may contribute to cancer disparities is obesity. The prevalence of obesity in the American Indian/Alaska Native population is 48.1% per the Centers for Disease Control and Prevention. The overall cancer mortality for the American Indian/Alaska Native population is 18% higher than the White population as reported by the American Cancer Society. Interventions tailored to American Indian/Alaska Native communities that promote healthy lifestyle behaviors after cancer diagnosis and prior to cancer surgery (prehab) might improve cancer outcomes for this population. OBJECTIVE: The aim of the study is to characterize the lifestyle behaviors of San Carlos Apache cancer survivors and identify preferences for the adaption of a prehab intervention. METHODS: Semistructured interviews and validated questionnaires were completed with San Carlos Apache cancer survivors (N=4), exploring their viewpoints on healthy lifestyle and cancer risk and preferences for program development. A thematic content analysis was conducted. RESULTS: Participants had an average BMI of 31 kg/m2 and walked 53 minutes daily. The majority of participants reported a high willingness to change eating habits (n=3, 75%). All 4 reported willingness to participate in a diet and exercise program. Important themes and subthemes were identified: (1) cancer is perceived as a serious health condition in the community (N=4, 100%); (2) environmental exposures are perceived as cancer-causing threats (n=3, 75%); (3) healthy diet, exercise, and avoiding harmful substances are perceived as mitigating cancer risk (n=3, 75%); (4) barriers to healthy habits include distance to affordable groceries (n=3, 75%) and lack of transportation (n=2, 50%); (5) there is high interest in a prehab program geared toward patients with cancer (N=4, 100%); and (6) standard monitoring practiced in published prehab programs showed early acceptability with participants (N=4, 100%). CONCLUSIONS: Collaboration with tribal partners provided important insight that can help inform the adaptation of a culturally appropriate prehab program for San Carlos Apache patients diagnosed with cancer.

Indigenous Peoples and research: self-determination in research governance.

Indigenous Peoples are reimagining their relationship with research and researchers through greater self-determination and involvement in research governance. The emerging discourse around Indigenous Data Sovereignty has provoked discussions about decolonizing data practices and highlighted the importance of Indigenous Data Governance to support Indigenous decision-making and control of data. Given that much data are generated from research, Indigenous research governance and Indigenous Data Governance overlap. In this paper, we broaden the concept of Indigenous Data Sovereignty by using the CARE Principles for Indigenous Data Governance to discuss how research legislation and policy adopted by Indigenous Peoples in the US set expectations around recognizing sovereign relationships, acknowledging rights and interests in data, and enabling Indigenous Peoples' participation in research governance.

Understanding low COVID-19 booster uptake among US adults.

BACKGROUND: Vaccinations against SARS-CoV-2 have consistently been shown to reduce the risk of severe COVID-19 disease. However, uptake of boosters has stalled in the United States at less than 20% of the eligible population. The objective of this study was to assess the reasons for not having obtained a bivalent booster within an existing COVID-19 cohort. METHODS: A total of 2196 adult participants from the Arizona CoVHORT, a population-based cohort in the United States established in May 2020, who had received at least one dose of the COVID-19 vaccine, responded to surveys administered between February 13 and March 29, 2023 querying receipt of a bivalent booster and if not, the reasons for not receiving it. Descriptive statistics were employed, including frequencies of responses by participant characteristics, and multivariable logistic regression was used to assess the association between participant characteristics and selected themes for not having received the bivalent booster. RESULTS: The most commonly reported reason for not having been boosted was a prior SARS-CoV-2 infection (39.5%), followed by concern about vaccine side effects (31.5%), believing that the booster would not provide additional protection over the vaccines already received (28.6%), and concern about booster safety (23.4%) or that it would not protect from SARS-CoV-2 infection (23.1%). For themes related to reasons for not having been boosted, those 60 years of age or older were less likely to select items related to knowledge (OR: 0.24; 95% CI: 0.11-0.55) or logistical concerns (OR: 0.09; 95% CI: 0.03-0.30) about the vaccine; while those reporting Hispanic ethnicity were more likely to convey concerns about logistics than those reporting non-Hispanic ethnicity (OR: 2.15; 95% CI: 1.08-4.30). Finally, compared to college graduates, those with some college or technical school were significantly more likely to select items related to the risks and benefits of the bivalent vaccine not being clear as reasons for not having been boosted (OR: 2.41; 95% CI: 1.69-3.43). CONCLUSIONS: Improvement in booster uptake is necessary for optimal public health in the United States. The development of vaccines against SARS-CoV-2 occurred at an unprecedented speed, but vaccine uptake remains among the greatest current public health challenges as updated boosters continue to be developed and made available to the public. Interventions to improve vaccination rates require a variety of approaches.

Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty.

Indigenous Peoples' right to sovereignty forms the foundation for advocacy and actions toward greater Indigenous self-determination and control across a range of domains that impact Indigenous Peoples' communities and cultures. Declarations for sovereignty are rising throughout Indigenous communities and across diverse fields, including Network Sovereignty, Food Sovereignty, Energy Sovereignty, and Data Sovereignty. Indigenous Research Sovereignty draws in the sovereignty discourse of these initiatives to consider their applications to the broader research ecosystem. Our exploration of Indigenous Research Sovereignty, or Indigenous self-determination in the context of research activities, has been focused on the relationship between Indigenous Data Sovereignty and efforts to describe Indigenous Peoples' Rights in data.

Depression among Underserved Rural and Urban Caregivers of Latinas with Breast Cancer.

Among Latino/as, informal caregiving duties are often deemed a family responsibility. Understanding psychological outcomes tied to caregivers of Latina breast cancer survivors is important to identify the impacts of cancer. Secondary analysis of baseline data collected in a randomized clinical trial (RCT) from 230 Latina breast cancer survivor-caregiver dyads. Characteristics of caregivers residing in rural/underserved and urban areas were compared using t- or chi-square tests. General linear models were used to analyze depressive symptoms in relation to residence, survivor-caregiver relationship, acculturation, obligation, reciprocity, and comorbidities. Urban residence was significantly associated with higher levels of depression controlling for survivor-caregiver relationship acculturation, obligation, reciprocity, and comorbidities. Mother caregivers had significantly higher levels of depression than other caregivers. Depression among Latino/a caregiver's providing care to an adult child is an important consideration as Latino/as are less likely to seek out/have access to mental health services than other groups.

Using the Community Readiness Model to Assess American Indian Communities Readiness to Address Cancer Prevention and Control Programs.

Cancer disparities continue among American Indian and Alaska Native (AI/AN) populations while they have decreased among other racial and ethnic groups. No studies were found that utilized the Community Readiness Model (CRM) to ascertain the readiness of Tribal and American Indian organizations to participate in cancer research and cancer prevention and control initiatives. The Partnership for Native American Cancer Prevention conducted an assessment of the status of American Indian communities' readiness to implement activities for prevention, early detection, and treatment to improve AI/AN cancer rates. The assessment was a component of the Community Outreach Core of the grant. Thirty-four key Informants participated in the interview process. The Community Readiness Assessment (CRA) provided a baseline assessment of community partners' readiness to participate in cancer research and programming. Despite years of cancer intervention programs, the communities were classified as being in the early stages of readiness [1-5] of the nine-stage model. Additionally, findings showed low levels of awareness of previous or ongoing cancer research. The findings in prevention and control efforts indicated a need for technical assistance and funding to support community projects in prevention and control. This supported the implementation of a community grants initiative. They also indicated that communities were not ready to conduct research, despite ongoing cancer related research in at least two communities. Communication tools and social media methods and messages were developed to increase awareness of cancer as a health concern and cancer research in the community. The CRM informed these and other engagement activities to meet the appropriate stage of readiness for each Tribe/community, and to build their capacity to participate in cancer research and programming activities.

Extending the CARE Principles from tribal research policies to benefit sharing in genomic research.

Indigenous Peoples have historically been targets of extractive research that has led to little to no benefit. In genomics, such research not only exposes communities to harms and risks of misuse, but also deprives such communities of potential benefits. Tribes in the US have been exercising their sovereignty to limit this extractive practice by adopting laws and policies to govern research on their territories and with their citizens. Federally and state recognized tribes are in the strongest position to assert research oversight. Other tribes lack the same authority, given that federal and state governments do not recognize their rights to regulate research, resulting in varying levels of oversight by tribes. These governance measures establish collective protections absent from the US federal government's research oversight infrastructure, while setting expectations regarding benefits to tribes as political collectives. Using a legal epidemiology approach, the paper discusses findings from a review of Tribal research legislation, policy, and administrative materials from 26 tribes in the US. The discussion specifies issues viewed by tribes as facilitators and barriers to securing benefits from research for their nations and members/citizens, and describes preemptive and mitigating strategies pursued by tribes in response. These strategies are set within the framing of the CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility, Ethics), a set of standards developed to ensure that decisions made about data pertaining to Indigenous communities at the individual and tribal levels are responsive to their values and collective interests. Our findings illustrate gaps to address for benefit sharing and a need to strengthen Responsibility and Ethics in tribal research governance.

"Es Muy Tranquilo Aquí": Perceptions of Safety and Calm among Binationally Mobile Mexican Immigrants in a Rural Border Community.

Perceptions of community can play an important role in determining health and well-being. We know little, however, about residents' perceptions of community safety in the Southwestern borderlands, an area frequently portrayed as plagued by disorder. The qualitative aim of this community-based participatory research study was to explore the perceptions of Mexican-origin border residents about their communities in southern Yuma County, Arizona. Our team of University of Arizona researchers and staff from Campesinos Sin Fronteras, a grassroots farmworker support agency in Yuma County, Arizona, developed a bilingual interview guide and recruited participants through radio adds, flyers, and cold calls among existing agency clientele. Thirty individual interviews with participants of Mexican origin who live in and/or work in rural Yuma County were conducted remotely in 2021. Participants overwhelmingly perceived their communities as both calm and safe. While some participants mentioned safety concerns, the vast majority described high levels of personal security and credited both neighbors and police for ensuring local safety. These perceptions were stated in direct contrast to those across the border, where participants had positive familial and cultural ties but negative perceptions regarding widespread violence. In conclusion, we argue that to understand environmental factors affecting health and well-being in Mexican immigrant populations, it is critical to examine the role of binational external referents that color community perceptions.

Native and Indigenous Populations and Gastric Cancer: A Worldwide Review.

Gastric cancer is a worldwide concern, particularly for Indigenous populations who face greater disparities in healthcare. With decreased access to screening and critical treatment delays, this group is experiencing adverse health effects. To determine what factors drive these disparities, a systematic review was performed in PubMed. This revealed a lack of research on gastric cancer specific to this population. The literature primarily focused on subset analyses and biological aspects with sparse focus on determinants of health. The results informed this presentation on factors related to Indigenous gastric cancer, which are influenced by colonialism. Indigenous populations encounter high rates of food shortage, exposure to harmful environmental agents, structural racism in the built environment, H. pylori, and compromised healthcare quality as an effect of colonialism, which all contribute to the gastric cancer burden. Putting gastric cancer into a cultural context is a potential means to respond to colonial perspectives and their negative impact on Indigenous patients. The objective of this manuscript is to examine the current state of gastric cancer literature from a global perspective, describe what is currently known based on this literature review, supplemented with additional resources due to lack of published works in PubMed, and to present a model of gastric cancer through the lens of a modified medicine wheel as a potential tool to counter colonial healthcare perspectives and to honor Indigenous culture.

A Rasch analysis assessing the reliability and validity of the Arizona CoVHORT COVID-19 vaccine questionnaire.

BACKGROUND: Despite the widespread availability of COVID-19 vaccines in the United States, many that have chosen not to be vaccinated have done so because of vaccine hesitancy. This highlights the need for tools that accurately capture the knowledge, attitudes, and beliefs towards COVID-19 vaccines, and provide steps toward improving vaccine acceptance. METHODS: Participants of the Arizona CoVHORT (COVID-19 Cohort) received a one-time, electronic based cross-sectional questionnaire intended to capture underlying motivations regarding vaccination, as well as hesitations that may prevent people from getting vaccinated. Rasch analysis was conducted among 4703 CoVHORT participants who had completed the vaccine questionnaire to assess questionnaire reliability and validity. Response categories were grouped to optimize scale functioning and to ensure independent probabilities of participant endorsement. RESULTS: A total of 4703 CoVHORT participants completed the questionnaire, of whom 68% were female, and who had a mean age of 48 years. Participants were primarily White (90%), highly educated (63% with a college degree or above, with most respondents (45%) having an income of more than $75,000 per annum. The results indicated the questionnaire has good reliability and construct validity for assessing attitudes and beliefs about the COVID-19 vaccines. In-fit mean-squares for included items ranged from 0.61 to 1.72 and outfit mean-squares ranged from 0.56 to 1.75, and correlation coefficients ranged from 0.25 to 0.75. The person-item map indicated normal distribution of logit scores measuring perceptions about COVID-19 vaccinations. CONCLUSIONS: The CoVHORT vaccine questionnaire demonstrated satisfactory reliability and construct validity in assessing attitudes and beliefs about COVID-19 vaccines. Overall results provide a starting point for a reliable and valid tool to assess knowledge and perceptions about COVID-19 vaccination, ultimately providing public health professionals with an instrument to assess the factors that are associated with vaccine acceptance or hesitancy.

Metabolic Syndrome Among American Indian and Alaska Native Populations: Implications for Cardiovascular Health.

PURPOSE OF REVIEW: The latest national data reports a 55% prevalence of metabolic syndrome in American Indian adults compared to 34.7% of the general US adult population. Metabolic syndrome is a strong predictor for diabetes, which is the leading cause of heart disease in American Indian and Alaska Native populations. Metabolic syndrome and associated risk factors disproportionately impact this population. We describe the presentation, etiology, and roles of structural racism and social determinants of health on metabolic syndrome. RECENT FINDINGS: Much of what is known about metabolic syndrome in American Indian and Alaska Native populations comes from the Strong Heart Study as there is scant literature. American Indian and Alaska Native adults have an increased propensity towards metabolic syndrome as they are 1.1 times more likely to have high blood pressure, approximately three times more likely to have diabetes, and have higher rates of obesity compared with their non-Hispanic White counterparts. Culturally informed lifestyle and behavior interventions are promising approaches to address structural racism and social determinants of health that highly influence factors contributing to these rates. Among American Indian and Alaska Native populations, there is scarce updated literature evaluating the underlying causes of major risk factors for metabolic syndrome, and progression to cardiometabolic disease. As a result, the actual state of metabolic syndrome in this population is not well understood. Systemic and structural changes must occur to address the root causes of these disparities.

Design of the Arizona CoVHORT: A Population-Based COVID-19 Cohort.

This study is a prospective, population-based cohort of individuals with a history of SARS-CoV-2 infection and those without past infection through multiple recruitment sources. The main study goal is to track health status over time, within the diverse populations of Arizona and to identify the long-term consequences of COVID-19 on health and well-being. A total of 2,881 study participants (16.2% with a confirmed SARS-CoV-2 infection) have been enrolled as of December 22, 2020, with a target enrollment of 10,000 participants and a planned follow-up of at least 2 years. This manuscript describes a scalable study design that utilizes a wide range of recruitment sources, leveraging electronic data collection to capture and link longitudinal participant data on the current and emerging issues associated with the COVID-19 pandemic. The cohort is built within a collaborative infrastructure that includes new and established partnerships with multiple stakeholders, including the state's public universities, local health departments, tribes, and tribal organizations. Challenges remain for ensuring recruitment of diverse participants and participant retention, although the electronic data management system and timing of participant contact can help to mitigate these problems.

Resilience and Stress among Hopi Female Caregivers.

Resilience and stress are important factors in the caregiving experience, but research has yet to examine their association among American Indian (AI) caregivers. This study examines resilience and stress in a group of Hopi female caregivers. Data came from the Hopi Adult Caregiver Survey (2017), which conducted interviews with 44 Hopi women who were providing care without remuneration to an adult family member. Measures included the abbreviated Connor-Davidson Resilience Scale (CD-RISC-10), the Perceived Stress Scale (PSS-10), and questions about caregiver characteristics, care recipient characteristics, social support/ community support, and cultural factors. Stress and resilience were looked at above the median (higher stress or higher resilience) and below the median (lower stress or lower resilience). Caregivers who reported relatively lower resilience were more likely to report that they lived separately from their care recipients and that all Hopis are expected to be caregivers. Caregivers who reported relatively higher stress reported a higher total number of caregiver difficulties, a poorer self-perception of their own health, use of a traditional healer in the past 5 years, and that females are expected to be caregivers. A regression analysis adjusting for age, education, and employment status indicated that higher resilience among the caregivers was significantly associated with lower stress. In light of these findings, programs working with AI caregivers may wish to explore whether supporting the resilience of these caregivers is a means towards limiting their stress.

Characteristics of American Indian Female Caregivers on a Southwest American Indian Reservation.

American Indian (AI) caregivers have been excluded from national survey efforts. Drawing from a 2012 survey administered on the Hopi Reservation in northern Arizona, 20% of adults are caregivers. More information is needed to guide program development tailored to Hopi needs. In a University-Community collaboration, a 58 question survey was administered to self-identified caregivers of a family member about amount and type of care provided, difficulties, caregiver health, and desired support services. Characteristics of caregivers and their experiences were described. Forty-four (44) female Hopi caregivers were interviewed from June-October 2017, mean age of 59 years (± 12.6) with mean 5.5 year (± 4.4) history of providing care. Over 84% provided care to either a parent or grandparent. Most caregivers provided transportation (93.2%), housework (93.2%), and medical related care (72.7%). Caregivers stated they had difficulties with not having enough time for family and or friends (88.6%), financial burdens (75.0%), and not having enough time for themselves (61.4%). The most frequently identified difficulty was stress (45.5%). Caregivers would like additional services, with 76.7% asking for training. Over 77% would not consider placing their relative in an assisted living facility. Compared to national data, Hopi female caregivers are older, provide more care hours/week, more caregiving duties, and for a longer number of years. Stress is the most reported difficulty, although lower than national levels. As caregivers are resistant to placing the recipient in assisted living, educational efforts should focus on training caregivers to assist the care recipient and decreasing caregiver stress.