Using Participatory Implementation Science to Advance Health Equity.

Participatory approaches to implementation science (IS) offer an inclusive, collaborative, and iterative perspective on implementing and sustaining evidence-based interventions (EBIs) to advance health equity. This review provides guidance on the principles and practice of participatory IS, which enables academic researchers, community members, implementers, and other actors to collaboratively integrate practice-, community-, and research-based evidence into public health and health care services. With a foundational focus on supporting academics in coproducing knowledge and action, participatory IS seeks to improve health, reduce inequity, and create transformational change. The three main sections of this review provide (a) a rationale for participatory approaches to research in implementation science, (b) a framework for integrating participatory approaches in research utilizing IS theory and methods, and (c) critical considerations for optimizing the practice and impact of participatory IS. Ultimately, participatory approaches can move IS activities beyond efforts to make EBIs work within harmful systems toward transformative solutions that reshape these systems to center equity. Expected final online publication date for the Annual Review of Public Health, Volume 45 is April 2024. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

Our Relationship to Water and Experience of Water Insecurity among Apsáalooke (Crow Indian) People, Montana.

Affordable access to safe drinking water is essential to community health, yet there is limited understanding of water insecurity among Native Americans. Therefore, the focus of this paper is to describe Apsáalooke (Crow Indian) tribal members' experiences with water insecurity. For Apsáalooke people, local rivers and springs are still vitally important for traditional cultural activities. We interviewed 30 Native American adults living on the Crow Reservation in Southeastern Montana. Participants answered six open-ended interview questions about their water access, costs of obtaining water and changes in their domestic and traditional water uses. Participants emphasized how the use of water has changed over time and described the complex challenges associated with addressing water insecurity in their community, including the importance of considering the spiritual and cultural impacts of water insecurity on health. Water insecurity is a growing global problem and more attention and efforts are needed to find appropriate and affordable solutions.

Too Dense and Too Detailed: Evaluation of the Health Literacy Attributes of an Informed Consent Document.

The US government recently updated the Common Rule, a set of federal regulations to ensure the ethical conduct of human subjects research. The new regulations require that consent documents provide information that is clear and concise enough to enable truly informed consent. This study explores potential American Indian research participants' understanding and perceptions of an example consent document, focusing on possible improvements to better serve the requirements of the revised Common Rule. Participants completed a survey that collected demographic data and measured health literacy, numeracy, and comprehension of the example document. Next, they participated in focus groups to answer open-ended questions regarding their views on the example document. We calculated mean scores and frequencies of response to analyze quantitative survey data and performed a qualitative thematic analysis of focus group transcripts. Results demonstrated that American Indian participants with relatively strong health literacy skills clearly understood key elements of the consent document, including the purpose of signing it, confidentiality, compensation, and whom to contact for questions. However, they were overwhelmed by details on research procedures and were concerned about the document's layout. To make consent documents more readily comprehensible, participants recommended the addition of headings, bullets, graphics, and relevant pictures. They also recommended a two-step consent process, comprising a short introduction to the research project followed by a longer explanation of procedures. These results illustrate the potential advantages of community engagement in drafting consent materials. Health researchers would likely benefit from community recommendations like the ones we elicited as they design consent documents adherent to the revised Common Rule.

Expanding Environmental Health Literacy-A Focus on Water Quality and Tribal Lands.

Environmental health literacy (EHL), an evolving concept, has potential for significant public health impact. However, complex skills are needed to access and use information, to study and document hazards, to link findings to health outcomes, and to understand the complexities of regulations and laws needed to take efficacious action. Because water issues are creating headlines world-wide, we draw from several water-related cases on American Indian tribal lands to examine some of the complexities associated with building needed skills, obtaining accessible information, and navigating the layers of laws and regulations that enable or inhibit efficacious action. Each case highlights the importance of partnerships, skill building, and collaborative action to redress environmental assaults. For our analysis, we draw from and expand upon Nutbeam's typology of health literacy which includes functional, interactive, and critical stages to derive lessons from each of the EHL cases. Community partnerships engaging in EHL efforts still face many challenges, including enhancing skills for community members as well as professionals, clarifying scientific processes and findings, articulating and respecting cultural practices and needs, and translating policies and laws for community accessibility and collaborative action.

Guardians of the Living Water: Using a Health Literacy Framework to Evaluate a Child as Change Agent Intervention.

BACKGROUND: American Indian communities in the United States experience considerable health inequities, including increased exposure to environmental contaminants. Consequently, community members of the Apsáalooke (Crow) Nation identified the lack of water-related environmental knowledge among children as an area of concern. AIM: The purpose of this study was to provide a feasibility evaluation of an increasingly sophisticated environmental health literacy program for children. METHOD: A community-academic partnership developed and piloted the Guardians of the Living Water program to increase environmental health literacy among children and their families on the Crow reservation. Nutbeam's framework for health literacy, a schema based on functional, interactive, and critical literacy, shaped the program evaluation. We used a within-subjects, quasi-experimental design without a control group. Interviews with children and parents were used to assess the feasibility of the program, while pre-/posttests assessed changes in knowledge, skills, and behavior. RESULTS: Compared with preintervention responses, those from postintervention indicated significant increases for selected knowledge and attitude components. Based on qualitative interviews with children and caregivers, the camp was a valuable experience and increased knowledge of water quality science and reinforced cultural knowledge. DISCUSSION: This success of our program stems from the trust initially built between partners and then expanded throughout the community. The program and the evaluation benefited from both the health literacy framework and from our integration of Apsáalooke values. CONCLUSION: Our findings suggest that a community-based intervention designed to increase environmental health literacy among youth and their social networks is feasible and acceptable to this American Indian community.

Developing a Curriculum for Change: Water and Environmental Health Literacy in a Native American Community.

BACKGROUND: Knowing about risks of water contamination is the first step in making informed choices to protect our health and environment. Researchers were challenged with sharing water quality research this information with local communities. OBJECTIVES: The purpose of this article is to describe the formative evaluation used to develop and implement an Environmental Health Literacy (EHL) summer camp and afterschool water curriculum for Native American (NA) children in the fourth through sixth grades. METHODS: Community and university scientists, elders, and educators came together and co-developed a summer camp and afterschool program for local youth to address the issues of water and its importance to the tribal community. LESSONS LEARNED: Research partners must continually balance research needs with relationships and service to the community. The health literacy framework used to develop our curriculum also complemented our community-based participatory research (CBPR) approach and may benefit other partnerships. CBPR helped to build trust and culturally center the intervention. CONCLUSIONS: Project partners built on the mutual commitment to "do what we say we will do" within the community context. Using the CBPR approach provided a strong framework for the collaboration necessary for this project. Trust relationships were key to the successes experienced during the development, implementation, and multiple revisions of this intervention.

Diabetes prevention among American Indians: the role of self-efficacy, risk perception, numeracy and cultural identity.

BACKGROUND: According to the Risk Perception Attitude (RPA) framework, classifying people according to their perceptions of disease risk and their self-efficacy beliefs allows us to predict their likelihood for engaging in preventive behaviors. Health interventions can then be targeted according to RPA group. We applied the framework to type 2 diabetes prevention behaviors among American Indians and expanded it to include culture and numeracy. METHODS: Using a cross-sectional study design, we surveyed a sample of Northern Plains American Indians in a reservation community setting on self-reported perceptions of diabetes risk, objective diabetes risk, self-efficacy, engagement in healthy behaviors, knowledge of diabetes risk factors, and covariates including demographics, numeracy, and cultural identity. We used the RPA framework to classify participants into four groups based on their perceptions of risk and self-efficacy. Analyses of variance and covariance estimated inter-group differences in behaviors associated with type 2 diabetes prevention. RESULTS: Among 128 participants, our only finding consistent with the RPA framework was that self-efficacy and risk perception predicted knowledge about diabetes risk factors. We found limited evidence for the influence of cultural identity within the RPA framework. Overall, participants had lower numeracy skills which tended to be associated with inaccurate perceptions of higher levels of risk. CONCLUSIONS: The theoretical framework may benefit from inclusion of further contextual factors that influence these behaviors. Attention to numeracy skills stands out in our study as an important influence on the RPA framework, highlighting the importance of attending to numeracy when targeting and tailoring risk information to participants segmented by the RPA framework.

Health Literacy and Informed Consent Materials: Designed for Documentation, Not Comprehension of Health Research.

Minority populations with health disparities are underrepresented in research designed to address those disparities. One way to improve minority representation is to use community-based participatory methods to overcome barriers to research participation, beginning with the informed consent process. Relevant barriers to participation include lack of individual or community awareness or acceptance of research processes and purposes. These barriers are associated with limited health literacy. To inform recommendations for an improved consent process, we examined 97 consent documents and 10 associated Institutional Review Board websites to determine their health literacy demands and degree of adherence to principles of community-based research. We assessed the reading level of consent documents and obtained global measures of their health literacy demand by using the Suitability and Comprehensibility Assessment of Materials instrument. Although these documents were deemed suitable as medical forms, their readability levels were inappropriate, and they were unsuitable for educating potential participants about research purposes. We also assessed consent forms and Institutional Review Board policies for endorsement of community-based participatory principles, finding that very few acknowledged or adhered to such principles. To improve comprehension of consent documents, we recommend restructuring them as educational materials that adhere to current health literacy guidelines.

Food Insecurity among American Indians and Alaska Natives: A National Profile using the Current Population Survey-Food Security Supplement.

Food insecurity increases the risk for obesity, diabetes, hypertension, and cancer-conditions highly prevalent among American Indians and Alaska Natives (AI/ANs). Using the Current Population Survey Food Security Supplement, we analyzed the food insecurity trends of AI/ANs compared to other racial and ethnic groups in the United States from 2000 to 2010. From 2000 to 2010, 25% of AI/ANs remained consistently food insecure and AI/ANs were twice as likely to be food insecure compared to whites. Urban AI/ANs were more likely to experience food insecurity than rural AI/ANs. Our findings highlight the need for national and tribal policies that expand food assistance programs; promote and support increased access to healthy foods and community food security, in both rural and urban areas; and reduce the burden of diet-related disparities on low-income and racial/ethnic minority populations.

What Touched Your Heart? Collaborative Story Analysis Emerging From an Apsáalooke Cultural Context.

Community-based participatory research and decolonizing research share some recommendations for best practices for conducting research. One commonality is partnering on all stages of research; co-developing methods of data analysis is one stage with a deficit of partnering examples. We present a novel community-based and developed method for analyzing qualitative data within an Indigenous health study and explain incompatibilities of existing methods for our purposes and community needs. We describe how we explored available literature, received counsel from community Elders and experts in the field, and collaboratively developed a data analysis method consonant with community values. The method of analysis, in which interview/story remained intact, team members received story, made meaning through discussion, and generated a conceptual framework to inform intervention development, is detailed. We offer the development process and method as an example for researchers working with communities who want to keep stories intact during qualitative data analysis.

Cultural identity and patient trust among older American Indians.

BACKGROUND: Patients' trust in healthcare providers and institutions has been identified as a likely contributor to racial-ethnic health disparities. The likely influence of patients' cultural characteristics on trust is widely acknowledged but inadequately explored. OBJECTIVE: To compare levels of patients' trust in primary care provider (interpersonal trust) with trust in healthcare organizations (institutional trust) among older American Indians (AIs), and determine associations with cultural identity. DESIGN: Patient survey administered following primary care visits. PARTICIPANTS: Two-hundred and nineteen American Indian patients ≥ 50 years receiving care for a non-acute condition at two clinics operated by the Cherokee Nation in northeastern Oklahoma. MAIN MEASURES: Self-reported sociodemographic and cultural characteristics. Trust was measured using three questions about interpersonal trust and one measure of institutional trust; responses ranged from strongly agree to strongly disagree. Finding substantial variation only in institutional trust, we used logistic generalized estimating equations to examine relationships of patient cultural identity with institutional trust. KEY RESULTS: Ninety-five percent of patients reported trusting their individual provider, while only 46 % reported trusting their healthcare institution. Patients who strongly self-identified with an AI cultural identity had significantly lower institutional trust compared to those self-identifying less strongly (OR: 0.6, 95 % CI: 0.4, 0.9). CONCLUSIONS: Interpersonal and institutional trust represent distinct dimensions of patients' experience of care that may show important relationships to patients' cultural characteristics. Strategies for addressing low institutional trust may have special relevance for patients who identify strongly with AI culture.

Adapting Western research methods to indigenous ways of knowing.

Indigenous communities have long experienced exploitation by researchers and increasingly require participatory and decolonizing research processes. We present a case study of an intervention research project to exemplify a clash between Western research methodologies and Indigenous methodologies and how we attempted reconciliation. We then provide implications for future research based on lessons learned from Native American community partners who voiced concern over methods of Western deductive qualitative analysis. Decolonizing research requires constant reflective attention and action, and there is an absence of published guidance for this process. Continued exploration is needed for implementing Indigenous methods alone or in conjunction with appropriate Western methods when conducting research in Indigenous communities. Currently, examples of Indigenous methods and theories are not widely available in academic texts or published articles, and are often not perceived as valid.

Community-based participatory research: its role in future cancer research and public health practice.

The call for community-based participatory research approaches to address cancer health disparities is increasing as concern grows for the limited effectiveness of existing public health practice and research in communities that experience a disparate burden of disease. A national study of participatory research projects, Research for Improved Health, funded by the National Institutes of Health (2009-2013), identified 64 of 333 projects focused on cancer and demonstrated the potential impact participatory approaches can have in reducing cancer disparities. Several projects highlight the success of participatory approaches to cancer prevention and intervention in addressing many of the challenges of traditional practice and research. Best practices include adapting interventions within local contexts, alleviating mistrust, supporting integration of local cultural knowledge, and training investigators from communities that experience cancer disparities. The national study has implications for expanding our understanding of the impact of participatory approaches on alleviating health disparities and aims to enhance our understanding of the barriers and facilitators to effective community-based participatory research.

Evaluating community-based participatory research to improve community-partnered science and community health.

BACKGROUND: Since 2007, the National Congress of American Indians (NCAI) Policy Research Center (PRC) has partnered with the Universities of New Mexico and Washington to study the science of community-based participatory research (CBPR). Our goal is to identify facilitators and barriers to effective community-academic partnerships in American Indian and other communities, which face health disparities. OBJECTIVES: We have described herein the scientific design of our National Institutes of Health (NIH)-funded study (2009-2013) and lessons learned by having a strong community partner leading the research efforts. METHODS: The research team is implementing a mixed-methods study involving a survey of principal investigators (PIs) and partners across the nation and in-depth case studies of CBPR projects. RESULTS: We present preliminary findings on methods and measures for community-engaged research and eight lessons learned thus far regarding partnership evaluation, advisory councils, historical trust, research capacity development of community partner, advocacy, honoring each other, messaging, and funding. CONCLUSIONS: Study methodologies and lessons learned can help community-academic research partnerships translate research in communities.

Exploring patient-provider interactions in a Native American community.

Identifying and addressing barriers and facilitators to good patient-provider clinical interactions may enhance participation in health-promoting behaviors. We used the critical incident technique to elicit descriptions of positive and negative patient-provider interactions from both patients and providers in a rural Native American community. Using the interview data, we developed a model that illustrates the factors affecting patient-provider interactions. Trust emerged as the central theme in the determination of whether an interaction is considered good or bad. Trust was influenced by four higher-level themes: visit context, visit expectations, history, and time. These higher-level themes also affected the perceived barriers and facilitators to the clinical interaction, which were categorized as either actions or feelings/interpretations. Addressing and reducing barriers to positive clinical interactions on multiple levels is necessary for improving patient trust in the health care system, particularly among members of minority groups.

Cancer screening among Native Americans in California.

OBJECTIVE: To determine the factors associated with cancer screening adherence among Native Americans living in California. PARTICIPANTS: 2,266 Native Americans identified from the California Health Interview Surveys during 2001, 2003, and 2005 eligible for cervical, breast, or colorectal cancer screening. METHODS: We fit multivariable logistic regression models to identify demographic and healthcare access predictors of adherence to cancer screening. RESULTS: The presence of a recent physician visit was significantly associated with cervical (odds ratio [OR] 7.34, 95% confidence interval [CI] 4.27, 12.6), breast (OR 3.29, 95% CI 2.0, 5.42), and colorectal (OR 3.02, 95% Cl 1.74, 5.23) cancer screening adherence. The report of a usual source of care was similarly positively associated with cervical, breast, and colorectal cancer screening adherence. Additional predictors for colorectal cancer screening included higher educational attainment (OR 1.56, 95% Cl 1.07, 2.28), and the presence of a comorbid condition (OR 1.54, 95% CI 1.16, 2.05). Experiencing discrimination (OR .42, 95% Cl .20, .89) and never being married (OR .49, 95% CI .27, .89) were negative predictors of breast cancer screening, while having insurance (OR 2.00, 95% CI 1.27, 3.15) was a positive predictor. Cervical cancer screening was positively associated with living at or above 300% of the federal poverty level (OR 2.69, 95% CI 1.50, 4.85). CONCLUSIONS: Regular access to health care and a physician are the most consistent predictors of cancer screening adherence among Native Americans and should represent a focus of activities to improve screening rates in these communities.

An assessment of printed diabetes-prevention materials available to a Northern Plains tribe.

The purpose of this study was to characterize the literacy demands of print materials used to encourage diabetes prevention on the Crow Reservation. Diabetes-prevention materials included pamphlets, booklets, and fact sheets provided to Crow people. Readability was assessed using the SMOG formula. Diabetes related vocabulary was assessed to determine whether medical/scientific words were used and if they were defined. Numeracy demand was assessed by counting the number of times different numeracy concepts were used in each material. Lists, charts, and graphs were assessed using the PMOSE/IKIRSCH tool. We found that materials were written at a readability level higher than recommended. Across all materials, vocabulary terms were used often but not always defined. Numeric terms were not often used, but when used they were not defined. Most of the materials required the reader to read numbers or count. However, overall numeracy demand was relatively low. The PMOSE/IKIRSCH scores for materials were adequate. The authors found a mismatch between the level of skills required in some of the materials and the skills of the average person, including adults on the Crow Reservation. This study highlights the need for designing materials specifically for the intended audience, including rigorous pilot testing of materials.