Community-engaged Research Research Articles

Engaging People With Lived Experience of Psychological Disorders: Current Research and Future Directions for Community-Engaged Measure Development in Psychological Science

The ability to make valid conclusions in psychological science rests on rigorous measure development. People with lived experience of psychological disorders can make invaluable contributions to the measure-development process, but they are often excluded from this process by researchers. When people with lived experience are included, their contributions are limited to consultation early in the process. In this review, we advocate for shared decision-making with people with lived experience throughout the measure-development process. We provide an overview of the phases and steps involved in the development of self-report measures, highlighting the critical contributions of people with lived experience at each step. Next, guided by the continuum of community engagement in research, we review studies from the psychological-science literature that embrace community-engaged measure-development approaches inclusive of people with lived experience of psychological disorders. We conclude with a discussion of opportunities and challenges to community-engaged measure development in psychological science.

Clinical psychology student perspectives on graduate training in community-engaged research methods.

Clinical psychology student perspectives on graduate training in community-engaged research methods.

Water security in North Carolina’s most economically insecure county: a case study

Abstract Negative health impacts of water insecurity are often felt most in poor and rural communities and communities of color, who are more likely to be underserved by water infrastructure and disproportionately subject to socioeconomic stressors. Despite mandated efforts to allocate significant federal resources to infrastructure funding in ‘disadvantaged communities,’ communities with the most need risk systematic exclusion from access to resources, decision-making structures, and even benefits of research intended to address inequitable infrastructure services and health outcomes in their own communities. This project aims to describe groundwork and preliminary findings from community-engaged environmental research conducted within an ongoing community-based participatory research partnership in Robeson County, NC, a majority–minority county with the lowest median household income of NC’s 100 counties. Semi-structured interviews conducted with community members were analyzed to identify concerns about drinking water security (including safety, affordability, and reliability), perceptions of water quality, averting behaviors taken due to water insecurity, and ideas for improving water security. Findings suggest that there is a high level of mistrust in community water supplies, with perceptions of poor water quality driving a reliance on bottled water. Those relying on private wells expressed greater trust in their water and lower reliance on bottled water. Concerns about affordability were less prominent than those about water quality. Insufficient water reliability (low flow) was mentioned by many respondents, including those with community water service and those relying on private wells. Most supported increasing taxes to improve water security and also recommended increasing communications between water service providers and the public to improve trust. Overall, this work suggests the need for a comprehensive assessment of the quality and reliability of community water services in Robeson County, interventions to address problems identified, and much more engagement with the community about identifying and allocating funding to solve water security problems.

Supplemental Material for Clinical Psychology Student Perspectives on Graduate Training in Community-Engaged Research Methods

Supplemental Material for Clinical Psychology Student Perspectives on Graduate Training in Community-Engaged Research Methods

Engaging Stakeholders to Strengthen Support for Community-Engaged Research at Stanford School of Medicine: An Institutional Assessment and Action Planning Approach

Engaging Stakeholders to Strengthen Support for Community-Engaged Research at Stanford School of Medicine: An Institutional Assessment and Action Planning Approach

Cracking Appalachia: A Political-Industrial Ecology Perspective

This article presents a political-industrial ecology (PIE) analysis of a petrochemical ethane cracker plant located above the Marcellus Shale basin near Pittsburgh, Pennsylvania. The analysis is motivated by community concerns that the cracker is more than just a plant and that current regulatory practices render the broader petrochemical ecosystem within which the plant exists largely unknowable. By integrating theory and methods from urban political ecology and Vienna School social metabolism, I present a metabolic tour of the petrochemical ecosystem to better render it visible and to situate it within the evolving global petrochemical economy. Within Pennsylvania, the plant exists in an ecosystem of more than 20,000 energy infrastructures whose exact numbers and locations are largely unknown due to regulatory practices and exemptions unique to the energy industry. Because of this infrastructure buildout, the Marcellus Shale basin is now interconnected to the U.S. Gulf Coast, Canada, and Europe, resulting in more globally integrated, separate markets for natural gas and petrochemicals. As reconceptualized through PIE, this article demonstrates how metabolism, a resurgent concept within various social and engineering science disciplines, can be a method for advancing community-engaged research by simultaneously embedding industrial ecosystems within place and assessing their broader socioecological significance.

Increasing Capacity for Community-Engaged Research in Prisons: The Utility of a Basic Research Short Course

The use of community-engaged research strategies is proliferating, yet some community and academic partners are challenged by shared language and understanding of research concepts. This paper outlines an effort to enhance research literacy and build capacity for community-engaged research among incarcerated persons and staff in a Midwest prison. Innovation advisory groups were developed through a larger project to improve prison culture and climate. Advisors identified a need for a short course on research to increase skills and knowledge. A member of the university research team delivered a six-part research course that aimed to increase course participants’ skills and knowledge to engage in the co-creation of interventions, testable research questions, research projects, grants, and dissemination products. Twenty-seven prison staff and incarcerated persons completed the course. They ranged in age from 22 to 64 years old, with 38% of participants identifying as a person of color. Changes in participants’ research knowledge, attitudes toward research, and barriers to research were measured using a pre-post research design. Offering a short research course is one promising strategy for building capacity for community-engaged research in prisons. The implications for enhancing participatory research projects in prisons are described and benefits and challenges of these types of courses.

Community-engaged research enhances the scientific quality and societal impact of a long-term avian monitoring program in northwest Ecuador

IntroductionThere has been a growing realization that a more inclusive approach to research can provide both ethical and practical benefits. Long-term avian monitoring programs, and indeed the academic and research community as a whole, are still learning how best to implement these methodologies effectively. MethodsThis paper provides information on a twenty-plus-year effort to conduct community-engaged avian monitoring in northwest Ecuador, with a focus on how this approach has impacted the quality and scope of the project’s science and broader societal impacts. We focus on three case studies that have been proceeding for varying lengths of time to highlight various stages of project development and maturity.ResultsA community-engaged approach has improved the quality of our scientific research by adding traditional ecological knowledge (TEK), technical capacity, and intellectual contributions to our monitoring efforts. Community-engaged research has also enhanced the breadth and quality of societal impacts, in terms of education, capacity building, and conservation, particularly in the formation of an ecological reserve that protects threatened species and habitat. We also discuss systemic and local challenges, and potential strategies to overcome these challengesDiscussionWe conclude that community-engaged research can improve the intellectual merit and broader societal impacts of long-term avian monitoring, and we advocate for continued investment, efforts, and careful reflection on best practices in this space.

Community Training Institute for Health Disparities: Outcomes of a Formal Opportunity for Community Capacity Building to Increase Health Equity in Southern Puerto Rico.

Integration of the community into health research through community-engaged research has proven to be an essential strategy for reducing health inequities. It brings significant benefits by addressing community health concerns and promoting active community participation in research. The Community Training Institute for Health Disparities (CTIHD) was established to support this integration based on Community-Based Participatory Research (CBPR) principles. The main objective of this paper is to report the CTIHD program's implementation, evaluation, and outcomes from the first two cohorts. The CTIHD recruited Hispanic community members (N = 54) to be trained in health disparities research and health promotion to foster Community-Academic Partnerships (CAPs) and develop community-led health promotion interventions. Evaluation measures included satisfaction, knowledge change, retention rate, completion rate, and project proposals (research and community health promotion plans). The retention and completion rates were 83% and 78%, respectively, with forty-two (n = 42) community trainees receiving the completion certification. Both cohorts demonstrated a significant increase in knowledge (p < 0.05), and overall satisfaction exceeded 90%. Outcomes include seven (7) community-academic partnerships, leading to the co-development of research proposals, three (3) of which received funding. Additionally, twenty-two (22) community health promotion plans were developed, with seven (7) implemented, impacting 224 individuals. Findings from this study suggest that the CTIHD effectively provided capacity building, promoted the formation of CAPs, and increased community-led health promotion interventions, thereby advancing health disparity research and community initiatives.

"May we be the bridge and boat to cross the water": Community-engaged research on metta meditation.

Inclusive research is needed to understand how contemplative practices are used by people of diverse identities. Metta meditation-also known as loving-kindness meditation-may be particularly relevant for people committed to equity and justice because of the social nature of the practice. Using community-based participatory research and an intersectional framework, we assessed how people in a diverse meditation community teach and practice metta meditation. In partnership between university researchers and a community-based meditation center, we conducted virtual focus groups on experiences with metta meditation during the early months of the COVID-19 pandemic. We used reflexive thematic analysis to analyze focus group data, with a member checking process to include participant feedback. Forty-seven people participated in six focus groups (Mage = 47; 62% lesbian, gay, bisexual, transgender, queer, intersex or asexual; 23% Asian, 19% Black, 13% Hispanic/Latina/o, 32% White, 24% multiracial). Qualitative analysis identified three central themes: (1) the importance of a community of practice for creating a sense of belonging (including during the early months of the COVID-19 pandemic); (2) the benefits of metta practice for cultivating compassion and equanimity; and (3) the use of metta practice to cope with harmful situations, including individual-level stressors and structural oppression. Metta meditation supported participants in navigating stressors and injustice. Community-based spaces designed to cultivate belonging among diverse communities can support people to connect contemplative practice with their efforts for social change. (PsycInfo Database Record (c) 2025 APA, all rights reserved).

Institutional community engagement leader perspectives on supporting ethical community-engaged research

Abstract Introduction: Over the last couple of decades, there has been a growing awareness of the value of community-engaged research (CEnR). Simultaneously, many academic institutions have established centralized support for CEnR. For example, dozens of academic medical centers in the United States receive National Institutes of Health (NIH)-funded Clinical and Translational Science Awards (CTSAs) and have embedded community engagement programs (CE) whose primary expertise and mission is to advance CEnR at their institutions. Methods: As part of a larger interview study aiming to learn more about how institutional CE programs and HRPPs work together, we analyzed interviews with CE program leaders at academic medical centers that receive funding from the NIH CTSA program to identify barriers and strategies to conducting CEnR at their institutions, primarily focusing on the relationships with Institutional Review Boards (IRBs). Results: We identified three categories in the interviews: barriers and strategies vis-à-vis IRBs to address 1) CE/IRB relationships; 2) Understanding issues; and 3) Structural and resource issues. Conclusions: CTSA CE program leaders have experience implementing solutions to common barriers to IRB review faced by CEnR researchers. The barriers they face in these three categories and the strategies they use to overcome them can provide helpful insights to others who hope to facilitate CEnR research at their institutions.

Roadmap for Health Equity: Understanding the Importance of Community-Engaged Research.

Achieving health equity in stroke prevention, treatment, and recovery has continued to be a significant challenge. This article highlights the significance of health equity and the role of community-engaged research in addressing stroke disparities, including concepts around health equity as the fair and just opportunity for everyone to attain their highest level of health and well-being. Social determinants impact stroke incidence, prevalence, morbidity, and mortality, which emphasizes the importance of intersectionality and social risk-informed care. A comprehensive roadmap for achieving health equity in stroke through the integration of community-engaged research is presented, including the necessity of community involvement in all aspects of research. Community is defined beyond geographic boundaries, highlighting the importance of shared identities and values. The process of developing targeted goals with communities toward social justice reform is reviewed, including an evolved community engagement framework, emphasizing the need for training to inform about issues and collaborative leadership models. Several stroke disparities intervention studies are highlighted, demonstrating the successful incorporation of community engagement into intervention design and intervention platforms. For enhanced engagement, the use of community health workers and better integration of community health worker models are essential. There may be a critical need for community engagement to optimize inclusion in clinical trials. Finally, acknowledging the complexities of research around decreasing stroke disparities in prevention, treatment, and recovery, this article delves into a framework for understanding the mechanisms by which interventions affect inequities and the need for multifaceted solutions with the community as a partner. Highlighting the roadmap to health equity, this research argues that community engagement is an integral component at all steps along the road to achieving optimum brain health through equitable stroke treatment, prevention, and recovery.

Translation and assessment of encultured meaning of the Multi-Dimensional Scale of Perceived Social Support in Diné bizaad (Navajo) using community-based participatory action research methods.

Perceived social support is a psychological construct that is used to describe the 'perception of adequacy' of the support being provided by a person's social network. Higher perceived social support has been linked to multiple benefits across numerous studies over the past several decades and among multiple populations. The Multidimensional Scale of Perceived Social Support (MSPSS) is a 12-item scale to assess the construct of perceived social support. The instrument has been translated to approximately 35 languages and dialects, but it has rarely been translated into tribal languages, which may be commonly spoken in rural areas. Further, such translations have not always been accompanied by cultural adaptation. Assessment of the encultured meaning of terms from a validated instrument is important alongside translation because words and terms related to perceived social support can be culturally specific. As such, this article presents a community-engaged research approach to develop a translation of the MSPSS into Din&eacute; bizaad (Navajo), along with a qualitative assessment of the meaning and implications of key terminology from the instrument. This study was led by a faculty member at a Native American-Serving Nontribal Institution (NASNTI) in south-western Colorado, US. Additional research collaborators included the original developer of the English MSPSS, a researcher with experience in methodology, and a member of the local Navajo community who was a student at the NASNTI. Using convenience and snowball sampling, a 2.5-hour focus group discussion was conducted and audio-recorded in May 2023 with eight Navajo community members who met eligibility criteria (including fluency in both Din&eacute; and English). All participants provided consent and received gratitude gifts for completion. Participants were four males and four females with an age range of 30-60 years. Since the discussion and recording were bilingual, a written English and Din&eacute; transcription was produced and anonymized, then reviewed by researchers. It was then backward-forward translated to English, then checked with discussion participants to validate accuracy. Using the general inductive method, key concepts and codes were separately identified and documented using NVivo 21 by two researchers. Full consensus as to coding was achieved over a sequence of six iterative consensus meetings among the coders. The project was able to produce a harmonized version of the MSPSS translated into Din&eacute; bizaad that accounted for variation in meaning and intent of multiple core concepts of perceived social support. For example, concepts of 'family' and 'friend' were often characterized by ethnic clan-based close-knit bonds. The concept of 'significant other' often meant 'spouse' but sometimes also meant someone who was highly trusted, especially among unmarried discussants. 'Social support' was trust-based rather than need-based and often relied on gender-concordant bonding. Many additional nuances were discussed and are outlined in the full study. Navajo community members were excited to collaboratively work on making this screening tool available in Din&eacute; bizaad. The translation that emerged from this process likely differed from what would have emerged from a direct translation without community input. Next steps for the tool should include quantitative reliability and validity analyses.

CULTIVATING TRUST IN RESEARCH PARTNERSHIPS WITH OLDER ADULTS ACROSS THE COMMUNITY ENGAGEMENT CONTINUUM

Abstract Community-engaged research is essential for identifying and supporting the needs of an aging society and ensuring effective translation of research findings. While not a new idea to the field of gerontology, engaged research models and frameworks are expanding, and researchers are seeing increased access to initiatives for building and sustaining community-engaged research programs. This symposium will feature emerging and established projects across multiple levels of the continuum of engagement, from informing, consulting, involving, collaborating, and ultimately to co-creating. Kim et al. will describe efforts to co-create programming and educational materials with and for Alaska Native caregivers, focusing on decolonizing methodologies. Halvorsen will showcase an ongoing academic-organizational partnership created to increase the research and evaluation capacity of a national nonprofit organization and its grantees. Gan will describe how diverse community members were engaged to understand and meet gaps in cognitive health promotion, resulting in the pilot of a mindful discussion program. Guest et al. will present on the formation and fruitful efforts of a resident advisory board at the University Based Retirement Community, sharing best practices for sustaining engagement. Mahmood et al. will report on a community-based participatory effort evaluating the role of built environment on mobility access across five cities in the Vancouver area. These exemplars will launch the symposium into a discussion about the utility of engaging older adults across the continuum, illustrating effective strategies for establishing trusted academic-community partnerships. We invite attendees to consider the value of this heuristic framework to plan and design fit-for-purpose community-engaged research projects. Community Engaged Research Interest Group Sponsored Symposium

CAPABLE TRANSPLANT: ADAPTATION OF CAPABLE FOR USE WITH OLDER ADULTS WITH INACTIVE STATUS AWAITING KIDNEY TRANSPLANT

Abstract Over 800,000 Americans live with end-stage kidney disease (ESKD), disproportionally affecting older adults. This group represents just 1% of Medicare’s Fee for Service (FFS) population, yet utilizes greater than 7% Medicare FFS resources. Rates of kidney transplantation (KT), the preferred treatment for ESKD, have risen 5-fold for older adults since 1990 but there is vast heterogeneity in access to KT. Older adults are more likely to be listed as inactive (on the waitlist but ineligible for KT) and, inactive status is associated with a 2.2 fold increased risk of waitlist mortality compared to those that remain active. Barriers to active status are multi-factorial but frequently modifiable and include symptoms such as fatigue, depression and stress, pain as well as loss of physical function, social isolation, and decreased health literacy. Using community participatory research and human centered design, we used photos, interviews, persona development, storyboarding and focus groups to identify three barriers unique to this population around the themes of: mental fortitude, support and communication. Our CAPABLE adaptation, called CAPABLE Transplant, incorporates greater motivational and communication strategies for the person and the home as well as a robust digital literacy component to address the needs of this population. An open-label pilot phase helped to solidify all aspects of the adaptation with resulting 30-person pilot randomized control trial on-going. This presentation will focus on the human centered design adaptation process and results thus far.

PEMBERDAYAAN UMKM ECOENZIM BERBASIS KEARIFAN LOKAL DI DESA RAMA AGUNG ARGAMAKMUR BENGKULU UTARA

This community service program aims to empower MSMEs in Rama Agung Village, Argamakmur, North Bengkulu, through the development of eco-enzyme products based on local wisdom. The methods used in this program are Asset-Based Community Development (ABCD) and Participatory Action Research (PAR), which actively involve the community in the production and marketing processes. This program successfully converted fruit peel waste into eco-enzyme soap, which is not only environmentally friendly but also increased the income of the assisted groups. The results of the mentoring show success in enhancing production capacity and market expansion to areas outside the city. The conclusion of this program is that MSME empowerment based on local wisdom can be an effective solution for improving economic welfare and environmental sustainability.

Reflecting on the use of Etuaptmumk/Two-Eyed seeing in a study examining hospital-based Indigenous wellness services in the Northwest Territories, Canada

ABSTRACT Etuaptmumk/Two-Eyed Seeing (E/TES) is a Mi’kmaw guiding principle that emphasises the importance of bringing together the strengths of Indigenous knowledges and Western knowledges to improve the world for future generations. Since its introduction to the academic community, E/TES has been taken up more frequently in Indigenous health research. However, as it is increasingly used, Elders and scholars have affirmed that it is at risk of being watered down or tokenised. This article reports on how E/TES was used in a community-engaged research study that examined hospital-based Indigenous wellness services in the Northwest Territories, Canada. As a living, relational, and spiritual principle, E/TES was used in the study in three interrelated ways. E/TES: (1) guided the study ontologically, shaping the research team’s conceptualisation of knowledge and knowledge generation; (2) informed the research team’s approach to relationship-building; and (3) guided reflexivity amongst team members. By reporting on how E/TES was used in the study, and critically reflecting on the strengths and challenges of the approach, this article seeks to contribute to growing scholarship about how E/TES is characterised and taken up in Indigenous health research.

THE CENTER FOR EQUITY IN AGING AT JOHNS HOPKINS UNIVERSITY

Abstract The Center for Equity in Aging was launched in 2022 Johns Hopkins University to advance scholarship, research and advocacy focused on aging and serious illness care. The Center seeks to transform the diverse experiences of aging and serious illness to enhance equity and well-being across the life course. Hosted by the School of Nursing, the Center includes 2 dozen principal faculty and draws upon a variety of disciplines including nursing, epidemiology, gerontology, health services, and health policy. In this presentation we will discuss how the Center advances equity in aging by engaging in research, training and scholarship that supports diverse individuals and populations, identifies health disparities in aging throughout the life course, and develops interventions, policies, and models of care to reduce inequities in the opportunities and resources needed to grow and age as healthily as possible. We will discuss the Center’s collaborations and partnerships with a diverse set of stakeholder groups to promote community-engaged research practices that inform research across all stages and describe new initiatives focused on advancing equity within the Center and how the Center collaborates with other centers/institutes both within and outside of the Johns Hopkins community. Center leadership will discuss their visions for promoting equity in aging research and reflect on key challenges in the field.

Development and validation of a pragmatic measure of cocreation in research engagement: a study protocol

IntroductionCocreation, a collaborative process of key interested partners working alongside researchers, is fundamental to community-engaged research. However, the field of community-engaged research is currently grappling with a significant gap: the...

Critical Connectors: Libraries Developing Community-Engaged Research Partnerships

Academic libraries can serve as critical campus and community connectors, developing sustainable collaborative models and lasting partnerships by responding to community information needs with library and university resources. Librarians can help break down silos and address systemic injustice in local communities through innovative outreach, community engagement, and curricular integration of critical information literacy. In this case study, a Business &amp; Entrepreneurship Librarian and an Assistant Professor of Business Communication will detail a class project they developed in partnership with a local entrepreneur to support the success of a local Black-owned business, help address the racial wealth gap, and provide a valuable engaged learning experience for undergraduate students.