Community-engaged Research Approaches Research Articles

Building Community Engagement Capacity in a Transdisciplinary Population Health Research Consortium

Community engagement has been named a research priority by the National Institutes of Health, and scholars are calling for community engagement as an approach to address racism and equity in science. Robust community-engaged research can improve research quality, increase inclusion of traditionally marginalized populations, broaden the impact of findings on real-life situations, and is particularly valuable for underexplored research topics. The goal of this paper is to describe lessons learned and best practices that emerged from community engagement in a multi-institution population health research consortium. We describe how a foundation was laid to enable community-engaged research activities in the consortium, using a staged and stepped process to build and embed multi-level community-engaged research approaches. We staged our development to facilitate (a) awareness of community engagement among consortium members, (b) the building of solidarity and alliances, and (c) the initiation of long-term engagement to allow for meaningful research translation. Our stepped process involved strategic planning; building momentum; institutionalizing engagement into the consortium infrastructure; and developing, implementing, and evaluating a plan. We moved from informal, one-time community interactions to systematic, formalized, capacity-building reciprocal engagement. We share our speed bumps and troubleshooting that inform our recommendations for other large research consortia—including investing the time it takes to build up community engagement capacity, acknowledging and drawing on strengths of the communities of interest, assuring a strong infrastructure of accountability for community engagement, and grounding the work in anti-racist principles.

External relationships as implementation determinants in community-engaged, equity-focused COVID-19 vaccination events.

While relationships and connectedness among organizations have been included in implementation theories, models, and frameworks, the increased attention to health equity in implementation science raises the urgency of understanding the role of relationships external to the implementing organization. This paper addresses this gap through an exploration of the role of external relationships in community-based, equity-focused interventions. This study focuses on an equity-focused, community-based COVID-19 vaccination intervention in Arkansas, drawing upon long-term community-engaged relationships among University of Arkansas for Medical Sciences and the Hispanic and Marshallese Islander communities. We used an exploratory qualitative descriptive design to examine barriers and facilitators to implementation of COVID-19 vaccination events analyzing in-depth qualitative interviews with implementation team members (n = 17). All participants described pre-existing relationships among the implementing organization, partner organizations, and communities as a key implementation determinant for this equity-focused program. At the inter-organizational level, external relationships included formal connections and informal relationships among staff (e.g., communication channels from prior partnerships). At the individual level, strong external relationships with the community were facilitators leveraging long-term engagement, community familiarity, and staff from the communities of focus. Strong external relationships facilitated program reach in underserved communities through three mechanisms: (1) reduced time required to establish functional working relationships among partners; (2) accessibility and cultural congruence of health services; and (3) increased trust among community members. Barriers to implementation also existed in external relationships, but had less influence than facilitators. Achieving health equity in implementation science requires greater understanding of external relationships as implementation determinants. This exploratory study makes a significant contribution to the literature by describing the types of external relationships that facilitate equitable implementation and identifying the mechanisms through which they may work. We argue that approaches to community engagement drawn from community-engaged research approaches may be useful, as these processes require investment in building/maintaining formal and informal organizational and interpersonal relationships. Further research is needed to understand connections among external relationships and other implementation determinants.

FORGING COMMUNITY–ACADEMIC PARTNERSHIPS FOR HEALTHY AGING: A COMMUNITY-LED TOOLKIT TO COMBAT AGEISM

Abstract There is growing recognition that community-engaged research approaches are essential for bridging the evidence-to-practice gap, especially for minoritized communities underrepresented among academic researchers. Such approaches often adopt a consultative model in which community members provide insights, perspectives, and feedback to support academic-driven projects. This strategy can be mutually beneficial when paired with cultural sensitivity and humility; however, there is a pressing need to form community-academic partnerships that flip this consultative relationship—placing university researchers as advisers on community-led projects that reflect local needs, priorities, and values. Here, we highlight the work of one such community-academic partnership led by the Center for Healthy Aging and Innovation’s (CHAI’s) Community Advisory Board with support from University of Minnesota faculty, staff, and graduate students. First, we describe the vision and formation of our Community Advisory Board (CAB), along with recruitment of its diverse membership representing eight cultural communities of the Twin Cities. We then outline the collaborative needs assessment process by which the CAB identified and prioritized action areas to advance healthy aging and health equity. Finally, we present preliminary results and early lessons learned from the CAB’s first project initiative—creation of a community-led, culturally responsive toolkit to address and reframe community-based sources of age-related stigma and discrimination. Findings from this project: 1) offer a plausible model and process for community-academic engagement which may be adapted and refined to fit local contexts; 2) underscore the value of community-led academic partnerships for addressing age-related stigma and other social factors associated with poor aging outcomes.

The Impact of Insider Researcher Trainees in Recruiting and Retaining Latinx in an Outdoor Health Promotion Research Study

Latinx represent the second largest ethnic group in the USA and remain significantly underrepresented in research studies. Efforts to better include Latinx make use of community-engaged research (CEnR) approaches, peer-navigators, and cultural humility training for research teams. While these efforts have led to slight increases in Latinx participation, studies to identify strategic practices for better inclusion of Latinx participants are needed. The objective of this study was to qualitatively examine factors leading to successful recruitment and retention of Latinx participants in the Promoting Activity and Stress Reduction in the Outdoors (PASITO) intervention. For this intervention, 99 low-income Latinx clients in a local community were contacted and 52 participants were recruited (53%). All were retained in the 3-month intervention. Of these, 12 were interviewed within 6 months of the close of PASITO by bi-cultural and bi-lingual non-research staff. They conducted one-on-one structured telephone interviews. Of the twelve participants, three (25%) were men, nine (75%) were women, and the mean age was 43.7 (SD = 8.7). Four critical themes for the recruitment and retention of Latinx populations emerged from the interviews: (1) importance of insider researchers; (2) sense of community and belonging; (3) responsive programming; and (4) health-promoting activities. These findings support the significant role insider researchers can play, and social identity theory provides a useful framework for understanding the role of insider researchers in recruiting and retaining Latinx, and likely other minoritized groups, in clinical studies. Insider researchers possess the skills, training, community cultural wealth, in-depth understanding of their communities, and structural competencies that position them to carry out more inclusive studies to address the needs of marginalized communities and advance science.

A roadmap for preventing and responding to trauma: Practical guidance for advancing community-engaged research.

Community-engaged research (CEnR) is an approach to inquiry that centers scientist-community partnerships characterized by mutuality and reciprocity, and is well-aligned with trauma-informed principles, such as trustworthiness, transparency, and fostering empowerment. The current paper considers definitions and applications of CEnR, highlighting examples from the trauma literature, from the formulation of research questions to the dissemination of research findings. To realize CEnR's promise to contribute to innovation, scientific understanding, and increased impact in the trauma field will require a shift in training and institutions. Fortunately, a growing interest in advocacy, public psychology, and diversity, equity, and inclusion presents an opportunity for synergy. Practical guidance is offered for supporting CEnR by preparing students, investing in faculty, and building infrastructure. Clinical Impact Statement: Community-engaged research (CEnR) focuses on equitable scientist-community partnerships in research, and shares principles with trauma-informed work. By prioritizing community collaboration, CEnR has the potential to lead to innovation, scientific understanding, and increased impact in the trauma field. For example, CEnR approaches emphasize dissemination to public audiences, which could help educate the public and policymakers about trauma and its impact. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Developing a community-engaged wheelchair exercise program for persons with MS: community advisory board formation and feedback

Purpose Exercise is a safe, evidence-based approach for improving symptoms such as mobility impairment, cognitive dysfunction, and fatigue; however, persons with multiple sclerosis (MS) who use wheelchairs for mobility have been excluded from most research. This paper describes our approach for recruiting ten community advisor board (CAB) members and partnering with them on developing a novel home-based exercise training program for wheelchair users with MS. Materials and Methods The exercise training program, which was developed based on initial qualitative research, includes a progressive exercise prescription, equipment, and one-on-one behavioural coaching based on Social Cognitive Theory. The CAB members convened in groups of five people for five meetings online, using virtual conference software. The CAB meetings each lasted approximately 1-hour and notes were transcribed into digital format for data analyses. Results Content analysis identified elements that aligned with meeting foci (i.e., prescription, equipment, coaching, and outcomes). Feedback was divided into categories to refine the program, specifically modifying, adding, or retaining content and/or activities. CAB member feedback was very positive and emphasised potential additions to the materials presented. The research team proposed implementing modifications based on the CAB member feedback such as adding wrist weights to the equipment options for completing resistance training exercises. Conclusions The overall CAB feedback was invaluable for assessing the appropriateness of the proposed exercise training program before initiating feasibility testing. This report provides a model and guidance for researchers who seek community-engaged research approaches in creating products and interventions. Implication for Rehabilitation Community advisory board participation was invaluable in creating and modifying a novel exercise training programmes for wheelchair users with multiple sclerosis (MS). The current study provides a framework for the creation of exercise interventions for subpopulations of persons with MS that may provide substantial rehabilitation benefits such as improved symptoms and quality of life. Health behaviour interventists targeting individuals with disabilities may consider the benefits of recruiting stakeholders from the community in creation of novel programmes.

Intersection of Health Informatics Tools and Community Engagement in Health-Related Research to Reduce Health Inequities: Scoping Review.

BackgroundThe exponential growth of health information technology has the potential to facilitate community engagement in research. However, little is known about the use of health information technology in community-engaged research, such as which types of health information technology are used, which populations are engaged, and what are the research outcomes.ObjectiveThe objectives of this scoping review were to examine studies that used health information technology for community engagement and to assess (1) the types of populations, (2) community engagement strategies, (3) types of health information technology tools, and (4) outcomes of interest.MethodsWe searched PubMed and PCORI Literature Explorer using terms related to health information technology, health informatics, community engagement, and stakeholder involvement. This search process yielded 967 papers for screening. After inclusion and exclusion criteria were applied, a total of 37 papers were analyzed for key themes and for approaches relevant to health information technology and community engagement research.ResultsThis analysis revealed that the communities engaged were generally underrepresented populations in health-related research, including racial or ethnic minority communities such as Black/African American, American Indian/Alaska Native, Latino ethnicity, and communities from low socioeconomic backgrounds. The studies focused on various age groups, ranging from preschoolers to older adults. The studies were also geographically spread across the United States and the world. Community engagement strategies included collaborative development of health information technology tools and partnerships to promote use (encompassing collaborative development, use of community advisory boards, and focus groups for eliciting information needs) and use of health information technology to engage communities in research (eg, through citizen science). The types of technology varied across studies, with mobile or tablet-based apps being the most common platform. Outcomes measured included eliciting user needs and requirements, assessing health information technology tools and prototypes with participants, measuring knowledge, and advocating for community change.ConclusionsThis study illustrates the current landscape at the intersection of health information technology tools and community-engaged research approaches. It highlights studies in which various community-engaged research approaches were used to design culturally centered health information technology tools, to promote health information technology uptake, or for engagement in health research and advocacy. Our findings can serve as a platform for generating future research upon which to expand the scope of health information technology tools and their use for meaningful stakeholder engagement. Studies that incorporate community context and needs have a greater chance of cocreating culturally centered health information technology tools and better knowledge to promote action and improve health outcomes.

Developing an Exercise Training Program for Wheelchair Users With MS: Community Advisory Board Feedback

<h3>Research Objectives</h3> To develop a novel exercise training program for persons with multiple sclerosis (MS) who use wheelchairs in partnership with a community advisory board (CAB). <h3>Design</h3> Community-engaged, qualitative. <h3>Setting</h3> General Community. <h3>Participants</h3> Participants (N=10) were recruited to be community advisors from a previous research study and met the following inclusion criteria: 18 years of age or older, MS diagnosis, use of a wheelchair ≥ 50% of the day. The sample had a mean age of 61 years and MS duration of 22 years. Nine participants identified as Caucasian and one participant identified as African American. All participants had progressive MS, 50% were female, and 50% used manual wheelchairs. <h3>Interventions</h3> The exercise training program developed based on initial qualitative research included a 16-week progressive exercise prescription (resistance and aerobic training), equipment (training manual, cycle ergometer, resistance bands, fitness tracker, and rate of perceived exertion scale), and one-on-one behavioral coaching based on Social Cognitive Theory. <h3>Main Outcome Measures</h3> Content analysis identified elements that aligned with meeting foci (i.e., prescription, equipment, coaching, and outcomes). Feedback was then divided into categories for refinement of the program, specifically suggestions for modifications and additions, as well as components retained as designed. <h3>Results</h3> CAB member feedback was very positive wherein most feedback emphasized potential additions to the materials reviewed. The research team proposed modifications based on the CAB member feedback such as adding wrist weights within the equipment options for completing resistance training exercises. <h3>Conclusions</h3> The CAB feedback overall was invaluable for assessing the appropriateness of the proposed exercise training program prior to feasibility testing. This presentation will provide a model and guidance for other researchers who seek community-engaged research approaches in creating products and interventions. <h3>Author(s) Disclosures</h3> The authors declare no conflicts.

Participatory and community-engaged research approaches to address racial, spatial, and health disparities

Participatory and community-engaged research approaches to address racial, spatial, and health disparities

The study of life and food systems for Native Hawaiians based on their environment

Health and well-being are a function of familial relationships between Native Hawaiians and their land. As a result of settler colonialism, Native Hawaiians face systemic and social barriers, which impede their relationship to land, with implications of adverse health outcomes. This qualitative study explores changes in health among Native Hawaiians, with a specific focus on food systems and the environment. Community-engaged research approaches were utilized to recruit 12 Hawaiian adults. The major themes include the following: (1) health as holistic and a harmonious balance, (2) nutrition transition and current connections to ‘āina (land extending from the mountain to the sea; that which feeds or nourishes), and (3) food sovereignty and community solutions to uplift the Lāhui (Nation of Hawai‘i). Consideration of cultural values, community strengths, and traditional lifestyle practices may address health inequities and changes in food systems related to health that stem from colonization, determinants of health, and environmental changes.

A Pilot Outreach HIV Testing Project Among Homeless Adults.

Background: The Memphis metropolitan statistical area (MSA) represents a Deep Southern U.S. city disproportionally affected by the ongoing transmission of new HIV cases as well as those diagnosed in late-stage disease. This region is a subset of nine states, including Memphis, Tennessee (project site), driving the epidemic in the United States. Memphis ranks 4th among all U.S. MSAs for new HIV infections and has been identified in the CDC's Ending the HIV Epidemic Initiative as a high HIV burden geographic focus area. The Memphis Ryan White Part A Program conducted a pilot project among adults seeking services in Memphis emergency and transitional housing shelters to offer on-site, rapid HIV testing. In this paper we describe the results from this aforementioned pilot study, including the rate of HIV test acceptance and potential factors associated with a history of HIV testing in Memphis.Methods: Community-engaged research approaches were employed via a partnership between the local health department, a federally qualified faith-based health center, and an academic university. An interviewer-administered survey to measure potential factors associated with HIV testing history and voluntary HIV testing services were offered to adults living in transitional housing establishments. Bivariate chi-square analyses were performed to determine the association between predisposing, enabling, and need variables with HIV testing history in the past 12 months.Results: Survey respondents (n = 109) were mostly cisgender male (n = 96; 88.1%), African American (n = 79; 72.5%) and reported engaging in condomless sex in the past 12 months (n = 55; 50.5%). Acceptability and uptake of HIV testing was high (n = 97; 89.0%).Conclusions: Implementing rapid HIV testing programs outside of traditional health care settings is a strategy that can be used to engage high-risk individuals and those unaware of their HIV status to get tested. To our knowledge, this study represents the first that documents HIV testing acceptance rates offered outside of traditional health care settings for homeless and transitionally housed adults in a Deep Southern state.

Community-engaged Research Approaches: Multiple Pathways To Health Equity.

Highlights Popular models and unifying frameworks fail to capture variance in community‐engaged research (CEnR) CEnR projects vary in how they approach process and partnership, knowledge generation, and power An expanded taxonomy of community‐engaged research could cultivate new approaches to social change

Community-Engaged Research: Common Themes and Needs Identified by Investigators and Research Teams at an Emerging Academic Learning Health System.

Community-engaged research (CEnR) has emerged within public health and medicine as an approach to research designed to increase health equity, reduce health disparities, and improve community and population health. We sought to understand how CEnR has been conducted and to identify needs to support CEnR within an emerging academic learning health system (aLHS). We conducted individual semi-structured interviews with investigators experienced in CEnR at an emerging aLHS in the southeastern United States. Eighteen investigators (16 faculty and 2 research associates) were identified, provided consent, and completed interviews. Half of participants were women; 61% were full professors of varied academic backgrounds and departments. Interviews were audio-recorded, transcribed, coded, and analyzed using constant comparison, an approach to grounded theory. Twenty themes emerged that were categorized into six domains: Conceptualization and Purpose, Value and Investment, Community-Academic Partnerships, Sustainability, Facilitators, and Challenges. Results also identified eight emerging needs necessary to enhance CEnR within aLHSs. The results provide insights into how CEnR approaches can be harnessed within aLHSs to build and nurture community-academic partnerships, inform research and institutional priorities, and improve community and population health. Findings can be used to guide the incorporation of CEnR within aLHSs.

Applying Community-Engaged Intervention Mapping to Preparing Nurse Scientists.

Preventing and managing chronic illness necessitates multilevel, theory-based interventions targeting behaviors, environmental factors, and personal determinants that increase risk for illness onset, greater burden, and poorer outcomes. The purpose of this article is to provide the basis for multilevel interventions, describe community-engaged intervention mapping as an approach to designing theory-based interventions, and discuss potential benefits of applying community-engaged intervention mapping in preparing nurse scientists to build programs of interdisciplinary research in preventing and managing chronic illness. Community-engaged intervention mapping integrates two methodological approaches: intervention mapping and community-engaged research. The six-step intervention mapping approach provides a logical structure for preparing nurse scientists in designing, adapting, and implementing multilevel, theory-based interventions. Community-engaged research approaches offer principles and direction for engaging patients, clinicians, community members, and other stakeholders throughout the research process. Integrating these methods retains the theoretical integrity of interventions; improves the relevance and timely completion of the research and its products; and enhances intended beneficiaries and the community's understanding, trust, and use of the results. Potential benefits of preparation in community-engaged intervention mapping to nurse scientists and nursing science include explicit consideration of multilevel factors influencing health. Additional benefits include guidance for linking relevant constructs from behavior- and environment-oriented theories with evidence-based methods for affecting desired changes in care and quality of life outcomes. Moreover, enhancement of the theoretical fidelity of the intervention, explication of the mechanisms influencing change in the primary outcome, and improved relevance and feasibility of interventions for intended beneficiaries and potential adopters are other benefits.

Insights Gained From Developing Academic-Community Partnerships for Minority Aging, Community-Engaged Research

Increasingly community-engaged research, characterized by collaborations between researchers and community partners, is recognized as an important part of translating research into improved health outcomes and reduced health disparities for community participants. Training community participants to engage in some or all aspects of this research, particularly focusing on racial and ethnic minority older adults, highlights the need to understand its opportunities and challenges. With this symposium we will discuss and reflect on community-engaged and community-based participatory research approaches to community-academic partnerships with minority older adults. The first presentation addresses recruitment, retention, and training of a community advisory board of older African Americans in Michigan. The second presentation addresses a health education outreach and engagement program to improve health outcomes among older African Americans in California. The third presentation combines community engagement with survey design methods for research with older Native Hawaiian and Pacific Islander adults to improve data collection and health outcomes in this U.S. population. The final presentation examines partnerships between a hospital memory clinic, meal delivery service, research university, and low-income health clinic to improve caregiver and dementia patient outcomes for minority older adults. The symposium discussant will address opportunities, challenges, and implications of community-academic partnerships promoting minority aging.

Back to the Future: Achieving Health Equity Through Health Informatics and Digital Health.

The rapid proliferation of health informatics and digital health innovations has revolutionized clinical and research practices. There is no doubt that these fields will continue to have accelerated growth and a substantial impact on population health. However, there are legitimate concerns about how these promising technological advances can lead to unintended consequences such as perpetuating health and health care disparities for underresourced populations. To mitigate this potential pitfall, it is imperative for the health informatics and digital health scientific communities to understand the challenges faced by disadvantaged groups, including racial and ethnic minorities, which hinder their achievement of ideal health. This paper presents illustrative exemplars as case studies of contextually tailored, sociotechnical mobile health interventions designed with community members to address health inequities using community-engaged research approaches. We strongly encourage researchers and innovators to integrate community engagement into the development of data-driven, modernized solutions for every sector of society to truly achieve health equity for all.

Increasing Community Participation in Public Health Research: Applications for Concept Mapping Methodology.

Concept mapping builds on other qualitative methods widely used in community-engaged research and community-based participatory research (CBPR) approaches by adding intentional participatory elements to engage stakeholders and increased data collection structure via built-in quantitative elements. This article presents examples of community-based studies using concept mapping to illustrate how public health researchers can use this method to incorporate participatory elements in projects that vary by research objective and degrees of community engagement. Drawing from our previous experience, we present four participatory concept mapping projects. These illustrative research examples focus on projects developed by academic-community partnerships, including a hospital-based community needs assessment, the creation of a domestic violence research agenda, the study of trust in community-academic partnerships, and the development of strategies to address breast cancer through a county-level collaborative. Through the use of illustrative examples, we provide four research-based applications of concept mapping with a variety of community engagement levels. These examples show how the use of concept mapping as a research method allows for the direct participation of community stakeholders to move research agendas forward. Concept mapping generates this forward movement in public health research through the production of visual representations and action-oriented results that promote the ability of stakeholders to have increased ownership in the improvement of health outcomes in their communities.

"Youth Are More Aware and Intelligent than Imagined": The Mountain Air Youth Photovoice Project.

Appalachian Kentucky reports some of the highest rates of respiratory illness in the United States, including chronic obstructive pulmonary disease and asthma. While smoking rates are high in the region, unexplained variation remains, and community-engaged research approaches are warranted to identify contributing factors. The Mountain Air Project’s community advisory board recommended that investigators invite youth to provide their perspectives on possible contributing factors to respiratory illness, and we undertook an exploratory study to determine the utility of photovoice to elicit such perspectives with this population. While photovoice has been employed for other youth-focused health studies in Appalachia, to our knowledge, this work represents the region’s first environmental study using photovoice among youth. Over eight weeks, ten participants (age 12–18) represented their perspectives through photographs and accompanying narratives. A brief thematic content analysis of the youth narratives that accompanied the photos revealed three primary themes of environmental determinants of respiratory illness. These themes included compromises community members make regarding respiratory health in order to secure a livelihood; tension between cultural legacies and respiratory health; and consequences of geographic forces. This study demonstrates the value of incorporating youth perspectives in environmental health research, and that photovoice was a valuable approach to elicit such perspectives.

Confronting Sexual Violence Through Dance and Theatre Pedagogy

The historically-shaped violence embedded in ongoing relations of colonization and imperialism for both refugee and Indigenous women across the globe are stories mostly told in reports and statistics. The performance-based art forms of theatre and dance can enhance knowledge sharing, build relationships and assist women in a deeper understanding of their realities. In pursuit of an effective use of these art forms; however, scripted stories need to ensure that women who experience oppression, formulate the storytelling. In addition, the enactment and representation should share women’s material histories in order to contextualize experiences in terms of specific relations to land, war, violence, displacement and dispossession. Using the two case studies of Doris Rajan’s play, A Tender Path and Roshanak Jaberi’s multidisciplinary dance project, No Woman’s Land, this article examines how community-engaged research and performance arts-based approaches can be used to challenge and provoke our ways of understanding and thinking about how to disrupt and alter oppressive relations.

Hybrid Resiliency-Stressor Conceptual Framework for Informing Decision Support Tools and Addressing Environmental Injustice and Health Inequities.

While structural factors may drive health inequities, certain health-promoting attributes of one’s “place” known as salutogens may further moderate the cumulative impacts of exposures to socio-environmental stressors that behave as pathogens. Understanding the synergistic relationship between socio-environmental stressors and resilience factors is a critical component in reducing health inequities; however, the catalyst for this concept relies on community-engaged research approaches to ultimately strengthen resiliency and promote health. Furthermore, this concept has not been fully integrated into environmental justice and cumulative risk assessment screening tools designed to identify geospatial variability in environmental factors that may be associated with health inequities. As a result, we propose a hybrid resiliency-stressor conceptual framework to inform the development of environmental justice and cumulative risk assessment screening tools that can detect environmental inequities and opportunities for resilience in vulnerable populations. We explore the relationship between actual exposures to socio-environmental stressors, perceptions of stressors, and one’s physiological and psychological stress response to environmental stimuli, which collectively may perpetuate health inequities by increasing allostatic load and initiating disease onset. This comprehensive framework expands the scope of existing screening tools to inform action-based solutions that rely on community-engaged research efforts to increase resiliency and promote positive health outcomes.