Capacity Building Together: Shifting Roles for Research and Implementation in Health Resilience Among American Indians in Arizona.

Community engagement has become a leading framework for supporting health equity. The process of engagement includes groups working together to continually identify and erode existing inequalities to promote a justice-oriented approach to health and wellness for all. Missing from the literature is a fine-grained study of processes that occur between and among project partners building the foundation for ongoing trust and reciprocity. Our project, Health Resilience among American Indians in Arizona, brought new and seasoned researchers together to collect and analyze data on healthcare provider knowledge and American Indian resilience. Four years after the conclusion of the project, central members of the team developed a postproject self-assessment to investigate lasting impacts of project participation using what we call an "Iterative Poly-knowledge Evaluation Cycle approach." Results highlight the value of flexibility of roles and organic change within projects, the importance of a focus on strengths rather than deficits, and the identification of lasting change on project team members at all levels to build and bolster multisectoral scaffolding for partnerships for health. We present this case study to contribute to an understanding of impacts of community-engaged, Indigenous research projects on people who work together toward challenging existing systems of inequality for better community health.

Building a Narrative of Equity: Weaving Indigenous Approaches into Community-Engaged Research.

In 2020, global injustice has taken center stage during the uprising of the Black Lives Matter movement and other social movements. Activists are calling attention to longstanding disparities in health outcomes and an urgent need for justice. Given the global socio-political moment, how can health researchers draw on current critical theory and social movements to create structures for equitable outcomes in health research and practice? Here, we demonstrate principles for effective health research and social justice work that builds on community-engaged approaches by weaving critical Indigenous approaches into structural project designs. Our project, "Health Resilience among American Indians in Arizona", brought new and seasoned researchers together to collect and analyze data on the knowledge of healthcare providers concerning American Indian health and well-being. Four years after the conclusion of the project, the team developed and created a post-project self-assessment to investigate lasting impacts of project participation. In this communication, we discuss the principles of defining and measuring the capacity to build together. This work responds to the call from Indigenous scholars and community leaders to build an internal narrative of change. While we will not present the full instrument, we will discuss building a strong foundation using the principles of engagement for planning and implementing justice and change.

Community Based Participatory Research (CBPR): A Dynamic Process of Health care, Provider Perceptions and American Indian Patients' Resilience.

American Indians are disproportionately affected by factors that lead to health disparities, however many Native people demonstrate resilience when faced with health risks. Study objectives were to use a resilience framework to identify wellness strategies among American Indian people and to assess health care provider perceptions of American Indian wellness. Participants included 39 American Indian adults who self-reported resilient change and 22 health care providers who served American Indian patients. Thematic categories across American Indian and health care provider data were identified: 1) relationships inform resilience; 2) prejudice stymies resilience; and 3) place shapes resilience. Results indicated the salience of relationships in demonstrating resilience. Identified challenges and supporters of resilience are discussed.

Supporting New Community-Based Participatory Research Partnerships.

Marginalized communities have a documented distrust of research grounded in negative portrayals in the academic literature. Yet, trusted partnerships, the foundation for Community-Based Participatory Research (CBPR), require time to build the capacity for joint decision-making, equitable involvement of academically trained and community investigators, and co-learning. Trust can be difficult to develop within the short time between a funding opportunity announcement and application submission. Resources to support community- and academic-based investigators' time to discuss contexts, concerns, integration of expertise and locally acceptable research designs and data collection are limited. The National Institutes of Health (NIH) funded Center for American Indian Resilience and the Southwest Health Equity Research Collaborative have implemented an internal funding mechanism to support community and academic-based investigators' travel cost and time to discuss complementary areas of interest and skills and to decide if moving forward with a partnership and a collaborative grant proposal would be beneficial to the community. The rationale and administration of this Community-Campus Partnership Support (CCPS) Program are described and four examples of supported efforts are provided. Centers and training programs frequently fund pilot grants to support junior investigators and/or exploratory research. This CCPS mechanism should be considered as precursor to pilot work, to stimulate partnership building without the pressure of an approaching grant application deadline.

Home parenteral nutrition for people with inoperable malignant bowel obstruction.

BACKGROUND: People with advanced ovarian or gastrointestinal cancer may develop malignant bowel obstruction (MBO). They are able to tolerate limited, if any, oral or enteral (via a tube directly into the gut) nutrition. Parenteral nutrition (PN) is the provision of macronutrients, micronutrients, electrolytes and fluid infused as an intravenous solution and provides a method for these people to receive nutrients. There are clinical and ethical arguments for and against the administration of PN to people receiving palliative care. OBJECTIVES: To assess the effectiveness of home parenteral nutrition (HPN) in improving survival and quality of life in people with inoperable MBO. SEARCH METHODS: We searched the following electronic databases: Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 1), MEDLINE (Ovid), Embase (Ovid), BNI, CINAHL, Web of Science and NHS Economic Evaluation and Health Technology Assessment up to January 2018, ClinicalTrials.gov (http://clinicaltrials.gov/) and in the World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP) search portal (http://apps.who.int/trialsearch/). In addition, we handsearched included studies and used the 'Similar articles' feature on PubMed for included articles. SELECTION CRITERIA: We included any studies with more than five participants investigating HPN in people over 16 years of age with inoperable MBO. DATA COLLECTION AND ANALYSIS: We extracted the data and assessed risk of bias for each study. We entered data into Review Manager 5 and used GRADEpro to assess the quality of the evidence. MAIN RESULTS: We included 13 studies with a total of 721 participants in the review. The studies were observational, 12 studies had only one relevant treatment arm and no control and for the one study with a control arm, very few details were given. The risk of bias was high and the certainty of evidence was graded as very low for all outcomes. Due to heterogeneity of data, meta-analysis was not performed and therefore the data were synthesised via a narrative summary.The evidence for benefit derived from PN was very low for survival and quality of life. All the studies measured overall survival and 636 (88%) of participants were deceased at the end of the study. However there were varying definitions of overall survival that yielded median survival intervals between 15 to 155 days (range three to 1278 days). Three studies used validated measures of quality of life. The results from assessment of quality of life were equivocal; one study reported improvements up until three months and two studies reported approximately similar numbers of participants with improvements and deterioration. Different quality of life scales were used in each of the studies and quality of life was measured at different time points. Due to the very low certainty of the evidence, we are very uncertain about the adverse events related to PN use. Adverse events were measured by nine studies and data for individual participants could be extracted from eight studies. This revealed that 32 of 260 (12%) patients developed a central venous catheter infection or were hospitalised because of complications related to PN. AUTHORS' CONCLUSIONS: We are very uncertain whether HPN improves survival or quality of life in people with MBO as the certainty of evidence was very low for both outcomes. As the evidence base is limited and at high risk of bias, further higher-quality prospective studies are required.

Hiring the experts: best practices for community-engaged research.

Community-engaged approaches to research and practice continue to show success in addressing health equity and making long-term change for partnership relationships and structures of power. The usefulness of these approaches is either diminished or bolstered by community trust, which can be challenging for partnerships to achieve. In this research note we present an example process for recruiting, interviewing, and hiring community researchers as a starting place for capacity building and for laying the foundation for data collection and analysis in health-related community projects.

Implementing Qualitative Data Management Plans to Ensure Ethical Standards in Multi-Partner Centers.

Thorough data management is crucial for the protection of people who participate in research and the ability for researchers to share results with the public. The impact of inadequate adherence to data management is particularly evident in small field sites and among vulnerable populations partoicipating in Community-Based Participatory Research (CBPR). CBPR presents exciting opportunities for multimedia and multi-sectoral dissemination of research results and policy change, especially concerning the impact of research on health equity for underrepresented populations. In this article, we discuss how we defined data boundaries and protections to adhere to ethical standards while also prioritizing data dissemination while using CBPR with American Indians in Arizona. Although complex partnerships can introduce additional risks to data oversight, data management practices can also increase opportunities for wide-reaching dissemination. We hope to contribute to the literature on data sharing in multi-partnership projects to bolster the impact of dissemination while also protecting participants and populations who chose to collaborate in research and policy practices.

Synthesizing evidence-based strategies and community-engaged research: a model to address social determinants of health.

Addressing social determinants of health (SDH) requires multileveled intervention designs. Increasingly, organizations and coalitions face pressure to use evidence-based strategies when seeking to address SDH. Evidence-based strategies, however, must be locally relevant and integrated into existing systems to function efficiently. We propose the incorporation of an effective rapid assessment technique, Rapid Assessment, Response, and Evaluation (RARE), with evidence-based strategies, findings, and recommendations embedded in community-engaged research to increase the likelihood of success in addressing SDH. Our RARE project--a partnership among a community health center, a nonprofit funding agency, and academic faculty researchers--resulted in community- and policy-level interventions for the prevention of childhood obesity in a Southwestern U.S. city.

A call for further research on the impact of state-level immigration policies on public health.

Arizona's Support Our Law Enforcement and Safe Neighborhoods Act, signed into law in April 2010, is already adversely affecting public health in the state. Our findings from a study on childhood obesity in Flagstaff suggest that the law changed health-seeking behaviors of residents of a predominantly Latino neighborhood by increasing fear, limiting residents' mobility, and diminishing trust of officials. These changes could exacerbate barriers to healthy living, limit access to care, and affect the overall safety of the neighborhood. Documentation of the on-the-ground impact of Arizona's law and similar state-level immigration policies is urgently needed. To inform effective policymaking, such research must be community engaged and include safety measures beyond the usual protocols.