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PurposeIn an effort to address persistent inequities in maternal and infant health, policymakers and advocates have pushed to expand access to doula care. Several states, including California, now cover doula services through Medicaid. As coverage expands, research on the impact of doula care will likely increase. To develop best practices for research, it is critical to engage community doulas, clients, and other key stakeholders.DescriptionOur overarching goal was to build capacity for future doula- and client-centered research on community doula care. First, we established a Steering Committee with members from seven relevant stakeholder groups: community doulas, former or potential doula clients, clinicians, payers, advocates, researchers, and public health professionals. Second, we conducted a needs assessment to identify and understand stakeholders' needs and values for research on community doula care. Findings from the needs assessment informed our third step, conducting a research prioritization to develop a shared research agenda related to community doula care with the Steering Committee. We adapted the Research Prioritization by Affected Communities protocol to guide this process, which resulted in a final list of 21 priority research questions. Lastly, we offered a training to increase capacity among community doulas to engage in research on community doula care.AssessmentOur findings provide direction for those interested in conducting research on doula care, as well as policymakers and funders.ConclusionThe findings of our stakeholder-engaged process provide a roadmap that will lead to equity-oriented research centering clients, doulas, and their communities.

This article explores the concept of "public scholarship" and its different models, specifically the "public intellectual" and the "engaged scholar." The author reflects on their own research trajectory, moving from theory to practice to engagement, and argues that engaged scholarship is more accountable to the demands of justice. The article also discusses the barriers to engaged scholarship and suggests that the "engaged university" should center the work of activist scholars and their community partners. The author acknowledges the importance of diverse perspectives and the need to learn from research traditions that have paved the way. The text discusses the difference between public intellectuals and engaged scholars in the context of advancing justice. Public intellectuals speak to a broad audience but do not interact with specific public stakeholders or contribute to social change. Engaged scholars, on the other hand, work directly with non-academic interest groups to co-produce knowledge that leads to social change. The text emphasizes the importance of community-based research and the need to prioritize the learning of long-time community-based scholars to ensure the integrity and accountability of engaged scholarship. The author also reflects on their own academic trajectory and the limitations of theory in effecting change, highlighting the importance of understanding how scholarship participates in the material matrices of public life. This article discusses the importance of engaged scholarship, which involves collaborating with non-academic partners in the research process. The author shares their experience working on a project funded by the California Department of Cannabis Control to study the impact of cannabis cultivation on Tribal sacred sites and cultural resources. They [Extracted from the article]

Background: Spanish-speakers with non-English language preference and complex medical needs suffer disparities in quality of care, safety, and health outcomes. Communication challenges during prolonged hospitalizations for complex illnesses negatively influence how this group engages in their care and decision-making while hospitalized. Limited literature capturing the perspectives of Spanish-speaking patients in this context exists. Given the impact of language barriers on care and medical decision-making, this study documents the experiences of Spanish-speaking patients with NELP and hospitalized with complex care needs as well as caregivers and community leaders. Methods: Using community-engaged recruitment strategies and semi-structured interviews and a focus group, we gathered insights from Spanish-speaking patients hospitalized for prolonged periods, caregivers, and community leaders from three geographic regions. Data were deidentified, transcribed, translated, coded in duplicate, and analyzed guided by grounded theory using NVivo. Results: We interviewed 40 participants: 27 patients, 10 caregivers and 3 community leaders. We identified four major themes: (1) Disconnected experiences impeding interactions, communication, and decision-making (2) Inadequate interpreter services (3) Benefits and consequences of family at the bedside (4) Community -informed recommendations. Conclusion: The study showed that in-person interpreters were preferred to virtual interpreters; yet interpreter access was suboptimal. This resulted in ad hoc family interpretation. Participants noted language negatively impacted patient's hospital experience, including decreasing confidence in medical decision-making. Recommendations from patients, caregivers, and community leaders included expanding interpreter access, bolstering interpreter quality and accuracy, and increasing resources for patient education. [ABSTRACT FROM AUTHOR]

Abstract Background Spanish-speakers with non-English language preference and complex medical needs suffer disparities in quality of care, safety, and health outcomes. Communication challenges during prolonged hospitalizations for complex illnesses negatively influence how this group engages in their care and decision-making while hospitalized. Limited literature capturing the perspectives of Spanish-speaking patients in this context exists. Given the impact of language barriers on care and medical decision-making, this study documents the experiences of Spanish-speaking patients with NELP and hospitalized with complex care needs as well as caregivers and community leaders. Methods Using community-engaged recruitment strategies and semi-structured interviews and a focus group, we gathered insights from Spanish-speaking patients hospitalized for prolonged periods, caregivers, and community leaders from three geographic regions. Data were deidentified, transcribed, translated, coded in duplicate, and analyzed guided by grounded theory using NVivo. Results We interviewed 40 participants: 27 patients, 10 caregivers and 3 community leaders. We identified four major themes: (1) Disconnected experiences impeding interactions, communication, and decision-making (2) Inadequate interpreter services (3) Benefits and consequences of family at the bedside (4) Community -informed recommendations. Conclusion The study showed that in-person interpreters were preferred to virtual interpreters; yet interpreter access was suboptimal. This resulted in ad hoc family interpretation. Participants noted language negatively impacted patient’s hospital experience, including decreasing confidence in medical decision-making. Recommendations from patients, caregivers, and community leaders included expanding interpreter access, bolstering interpreter quality and accuracy, and increasing resources for patient education.

Background: There are few methods that focus on engaging racial and ethnic minorities in research. The Meharry-Vanderbilt Community Engaged Research Core partnered with the University of Utah, the University of Michigan, and community/patient partners to convene a virtual summit to share the Community Engagement Studio (CE Studio) model, a structured and widely-used approach that facilitates community engagement in research. Objectives: The CE Studio Virtual Training Summit (Summit) goal was to prepare multi-stakeholder (e.g. researchers, community members) research teams to engage more racial/ethnic minorities in CE studios. Methods: Summit planning included (1) agenda development, including CE Studio training and a live CE Studio demonstration; (2) summit advertisement across several networks, including minority-serving institutions; and (3) development of pre-and post-Summit evaluations. Results: Among 50 registrants (76.7% academicians) that completed evaluations, more than 65% planned to increase engagement of racial/ethnic minorities in research and implement CE Studios as a result of the Summit. Increased confidence in all CE training areas was reported, including in conducting an effective CE Studio planning meeting (32.1% pre-Summit/90.3% post-Summit) and identifying and preparing patient/community stakeholders for engagement as CE Studio experts (46.4% pre-Summit/93.6% post-Summit). Conclusions: Virtual CE Studio training that includes multi-stakeholder planning partners can be an effective method for introducing the CE Studio model and preparing multi-stakeholder research teams to engage racial and ethnic minorities in CE Studios. This is particularly salient given that effective community engaged research methods and best practices are not currently being distributed through research programs at a pace consistent with the demands. [ABSTRACT FROM AUTHOR]

Purpose: In an effort to address persistent inequities in maternal and infant health, policymakers and advocates have pushed to expand access to doula care. Several states, including California, now cover doula services through Medicaid. As coverage expands, research on the impact of doula care will likely increase. To develop best practices for research, it is critical to engage community doulas, clients, and other key stakeholders. Description: Our overarching goal was to build capacity for future doula- and client-centered research on community doula care. First, we established a Steering Committee with members from seven relevant stakeholder groups: community doulas, former or potential doula clients, clinicians, payers, advocates, researchers, and public health professionals. Second, we conducted a needs assessment to identify and understand stakeholders' needs and values for research on community doula care. Findings from the needs assessment informed our third step, conducting a research prioritization to develop a shared research agenda related to community doula care with the Steering Committee. We adapted the Research Prioritization by Affected Communities protocol to guide this process, which resulted in a final list of 21 priority research questions. Lastly, we offered a training to increase capacity among community doulas to engage in research on community doula care. Assessment: Our findings provide direction for those interested in conducting research on doula care, as well as policymakers and funders. Conclusion: The findings of our stakeholder-engaged process provide a roadmap that will lead to equity-oriented research centering clients, doulas, and their communities. Significance: What is Already Known on this Subject?: Doula care is often cited as a cost-effective intervention to improve maternal and infant health and health care experiences. However, research that focuses on the community-based model of doula care is limited. What this Study Adds?: This paper describes a stakeholder-engaged process that identified important understudied research questions about community doula care. Researchers can further refine these questions to conduct partnered research with multiple stakeholder groups, including community doulas, former or potential doula clients, clinicians, payers, advocates, and public health professionals. Further, this paper outlines best practices for research on community doula care. [ABSTRACT FROM AUTHOR]

Youth who age out of foster care face a constellation of challenges associated with navigating the transition to adulthood and often do not have opportunities to express their perspectives. The purpose of this project was to partner with these youth to develop a trauma-informed photovoice program that can be freely utilized in child welfare programming. This youth participatory action research (yPAR) project engaged youth and young adults with child welfare experience in a long-term partnership to co-develop and pilot test a trauma-informed photovoice program called Photovoice for Change (P4C). P4C evolved into a three-meeting structure: (1) orientation and launch; (2) preparation for sharing; and (3) share back. Youth participants revealed photographs of “places and spaces” that impacted their lives, sharing their meaning with other youth and supportive adults in a group setting. The project concluded with a gallery showing, featuring a video highlighting the program participants’ experiences. Trauma-informed photovoice may be an important program to embed within the child welfare system, as it can provide youth with an opportunity to: (a) strengthen within-group relationships and (b) express important aspects of their lives in a supportive and safe environment.

Objective: This study explored Hispanic/Latino aging adults' interest in and preferences for intergenerational physical activity programming. Methods: We used an exploratory sequential (Qual-QUAN) mixed methods design consisting of three focus groups (N = 13 participants; M age = 62.5 years old) and a quantitative survey (N = 105 participants; M age = 57.3 years old). Results: We found that most participants were interested in intergenerational physical activity programs: (1) to promote overall health and well-being, (2) increase opportunities for socialization and relationships, and (3) foster motivation and energy. Preferences for programming included cultural tailoring, bilingual and Spanish-language offerings, and being conducted in-person. Barriers to physical activity included cost, scheduling, transportation, and limited awareness of community resources. Discussion: Innovative public health initiatives incorporating an intergenerational approach may promote physical activity among aging adults. This study has implications for developing and refining intergenerational programming with Hispanic/Latino communities. [ABSTRACT FROM AUTHOR]

The American Journal of Community Psychology (AJCP) was founded in 1973 and has since its inception has been the flagship journal for the Society of Community Research and Action. AJCP publishes leading scholarship in community psychology and social action research. This special issue celebrates the 50 years of scholarship in AJCP by curating and assembling previously published articles in virtual special issues (VSIs) with accompanying commentaries. Nine VSIs were compiled as part of this special issue. Each of these VSIs were organized around themes that are of critical importance to community psychology and each VSI summarizes what has been learned from their included articles and future directions for the field. In this paper, we introduce this special issue on this collection of VSIs, discussing how each of these VSIs endeavor to push the field forward. Highlights: This special issue celebrates 50 years of the American Journal of community psychology.Nine virtual special issues (VSI) curated previously published papers in AJCP.We summarize these VSI introductions and discuss how each calls for future directions for the field. [ABSTRACT FROM AUTHOR]

Background: Home visiting (HV) has demonstrated positive impacts across family well-being domains. Home visitors receive training in HV model requirements as well as to develop knowledge and various skills. Despite growth in HV research, we are not aware of existing training or required competencies in research design, research methods, or dissemination of research findings for home visitors. Objectives: Via ongoing collaboration with an Advisory Board of key HV stakeholders, we developed a three-module online training that incorporated examples from HV research and practice to address the gap in research training for home visitors and to promote home visitors' engagement as research stakeholders. Methods: A convenience sample of home visitors (n = 176) was surveyed on research knowledge, research self-efficacy, and priority training topics, with results used to create a beta version of the training completed by six home visitors. Home visitor feedback on the beta version, coupled with Advisory Board recommendations, led to creation of the final online training. Forty home visitors viewed the final training and completed pre- and post-training surveys to assess changes in research knowledge and self-efficacy. Twelve home visitors also completed a semi-structured qualitative interview. Home visitors demonstrated improvements in research knowledge and self-efficacy and found the training easy to understand and useful. Conclusions: Guidance from stakeholders led to development of an online training that was effective in improving home visitors' research knowledge and self-efficacy. This training can be used by HV researchers and practitioners as a tool to promote home visitors' active engagement as stakeholders in research. [ABSTRACT FROM AUTHOR]

Abstract Background Historical trauma experienced by Indigenous peoples of North America is correlated with health disparities and is hypothesized to be associated with DNA methylation. Massive group traumas such as genocide, loss of land and foodways, and forced conversion to Western lifeways may be embodied and affect individuals, families, communities, cultures, and health. This study approaches research with Alaska Native people using a community-engaged approach designed to create mutually-beneficial partnerships, including intentional relationship development, capacity building, and sample and data care. Methods A total of 117 Alaska Native individuals from two regions of Alaska joined the research study. Participants completed surveys on cultural identification, historical trauma (historical loss scale and historical loss associated symptoms scale), and general wellbeing. Participants provided a blood sample which was used to assess DNA methylation with the Illumina Infinium MethylationEPIC array. Results We report an association between historical loss associated symptoms and DNA methylation at five CpG sites, evidencing the embodiment of historical trauma. We further report an association between cultural identification and general wellbeing, complementing evidence from oral narratives and additional studies that multiple aspects of cultural connection may buffer the effects of and/or aid in the healing process from historical trauma. Conclusion A community-engaged approach emphasizes balanced partnerships between communities and researchers. Here, this approach helps better understand embodiment of historical trauma in Alaska Native peoples. This analysis reveals links between the historical trauma response and DNA methylation. Indigenous communities have been stigmatized for public health issues instead caused by systemic inequalities, social disparities, and discrimination, and we argue that the social determinants of health model in Alaska Native peoples must include the vast impact of historical trauma and ongoing colonial violence.

Abstract Purpose Although medical research dissemination is intended to benefit members of society, few members of society actually participate in the process of publishing findings. This study shares findings from community members’ (including patients and the public) experiences being trained as medical journal reviewers. Methods We analyzed findings from two focus group interviews of community reviewers (N = 29) to identify themes in their experiences with the training program. Results Community members trained as journal reviewers appreciated learning the context under which manuscript development and review occur from authors and funders, the value of the community member perspectives to science, and strengthened their critical thinking skills. A range of training tools and strategies included glossaries of research terms, creating review guides, practicing reviews, being trained by a supportive team, and working with and learning collaboratively. Conclusions Training as a journal reviewer has a positive impact on participating community members. Programs training community members as journal reviewers should incorporate guest speakers well-versed in community engaged research, group activities, a variety of training tools and materials, and highly supportive training teams.

This collaboratively authored white paper reports on a May 2021 two-day online workshop about the current state of academic research on community archives, its impact on communities represented and served by such organizations, and ways to envision and enact more equitable relationships moving forward. Participants included community-based archivists, advocates for community archives, academic researchers, and students. This white paper reports on key themes that emerged from this two-day workshop, and presents collaboratively-derived principles and protocols for building ethical, more equitable partnerships between academic researchers and community-based archivists in the future. Our findings surface several damaging tendencies in academic research, including: parachuting in, knowledge extraction, financial inequity, and transactional consent. We then identify nine key principles for building mutually beneficial relationships between academic researchers and community archivists: relational consent; mutual benefit; investment; humility; accountability; transparency; equity; reparation; and amplification. We then propose ways academic researchers can enact these principles via protocols for building more equitable research partnerships moving forward.

As in many places, heritage narratives in Ōtautahi Christchurch remain focused on colonial times. To expand these narratives, we examined three subfossil mataī (Prumnopitys taxifolia) excavated along a 700 m arc during residential subdivision earthworks. Characterisation used δ 15N, radiocarbon, and ring width measurements. Conventional (uncalibrated) radiocarbon ages were 1222 BP (calibrated median 856 CE), 932 BP (1148 CE) and 545 BP (1425 CE). Mean δ 15N values of +1.0 ± 1.1‰ (±SD) were similar to nearby alluvial forest remnants, with no discernible change through the 550-year sampling interval. Ring widths in three trees from the 545 BP site were 0.58 ± 0.12 mm, half that of present day mataī from humid West Coast forests at a similar latitude. The 545 BP site included a burnt stump, and stumps with longhorn beetle (Cerambycidae) larval galleries that occur only in already dead trees. We conclude that the forest was slow growing and mesotrophic but dynamic due to periodic flooding, ending with fire around 1430 CE and inundation of the dead standing forest years or decades later. We are now using traditional and social media and artists to disseminate the narrative of a former mataī forest ‘beneath our feet’ through schools, community groups, and in public facilities. [ABSTRACT FROM AUTHOR]

Background: Historical trauma experienced by Indigenous peoples of North America is correlated with health disparities and is hypothesized to be associated with DNA methylation. Massive group traumas such as genocide, loss of land and foodways, and forced conversion to Western lifeways may be embodied and affect individuals, families, communities, cultures, and health. This study approaches research with Alaska Native people using a community-engaged approach designed to create mutually-beneficial partnerships, including intentional relationship development, capacity building, and sample and data care. Methods: A total of 117 Alaska Native individuals from two regions of Alaska joined the research study. Participants completed surveys on cultural identification, historical trauma (historical loss scale and historical loss associated symptoms scale), and general wellbeing. Participants provided a blood sample which was used to assess DNA methylation with the Illumina Infinium MethylationEPIC array. Results: We report an association between historical loss associated symptoms and DNA methylation at five CpG sites, evidencing the embodiment of historical trauma. We further report an association between cultural identification and general wellbeing, complementing evidence from oral narratives and additional studies that multiple aspects of cultural connection may buffer the effects of and/or aid in the healing process from historical trauma. Conclusion: A community-engaged approach emphasizes balanced partnerships between communities and researchers. Here, this approach helps better understand embodiment of historical trauma in Alaska Native peoples. This analysis reveals links between the historical trauma response and DNA methylation. Indigenous communities have been stigmatized for public health issues instead caused by systemic inequalities, social disparities, and discrimination, and we argue that the social determinants of health model in Alaska Native peoples must include the vast impact of historical trauma and ongoing colonial violence. [ABSTRACT FROM AUTHOR]

Purpose: Although medical research dissemination is intended to benefit members of society, few members of society actually participate in the process of publishing findings. This study shares findings from community members' (including patients and the public) experiences being trained as medical journal reviewers. Methods: We analyzed findings from two focus group interviews of community reviewers (N = 29) to identify themes in their experiences with the training program. Results: Community members trained as journal reviewers appreciated learning the context under which manuscript development and review occur from authors and funders, the value of the community member perspectives to science, and strengthened their critical thinking skills. A range of training tools and strategies included glossaries of research terms, creating review guides, practicing reviews, being trained by a supportive team, and working with and learning collaboratively. Conclusions: Training as a journal reviewer has a positive impact on participating community members. Programs training community members as journal reviewers should incorporate guest speakers well-versed in community engaged research, group activities, a variety of training tools and materials, and highly supportive training teams. Plain English summary: The findings of medical research are supposed to benefit society, but few members of society that are not specialists actually help publish findings. In this study we hoped to learn about the experiences of community members who were trained to be medical journal reviewers. We interviewed 29 of the 34 community members who were trained to learn what they liked and did not like about the training. We learned that community members appreciated learning about how journal articles get published. Learning from journal article authors was helpful, as well as from people who work for organizations that finance the research. They also learned about how patient and community perspectives are important in science. They also said they learned to strengthen their critical thinking skills. They mentioned training tools and strategies that would have helped them. These included lists of research terms and their definitions, review guides, practicing reviews ahead of time, having supportive trainers, and working with and learning from each other. We conclude that training as a journal reviewer has had a positive impact on the community members. We suggest that programs who want to train community members as journal reviewers should incorporate guest speakers who understand community engaged research. They should also make sure they incorporate group activities, a variety of training tools and materials, and be very supportive. [ABSTRACT FROM AUTHOR]

Youth today face novel mental health challenges compared to youth of previous generations. Youth voice in research is necessary to better understand and alleviate this national youth mental health crisis, but current U.S. nationally representative datasets on youth mental health lack youth voice in their survey designs. The academic team collaborated with 19 high school students to design a comprehensive youth mental health survey called the Youth Collaborative Mental Health Survey (YCMHS). The youth co-investigators represented the diversity of San Antonio, Texas, and were majority Hispanic. The constructivism pedagogy in education, which empowers youth voice in the learning process, was utilized to facilitate the youth-led creation of the YCMHS. During eight 2-hour meetings, the youth co-investigators designed the YCMHS with 20 domains and 195 questions. The YCMHS embraced respondent flexibility and voice and included 42 conditional response questions and 29 free-text response questions. The youth co-investigators led the survey administration at five schools during the 2020–2021 school year. The youth-led research design also strengthened collaboration between community and school partners. Takeaways from the academic team include the importance of being flexible and patient and advocating for the youth collaborators. Takeaways from the youth co-investigators include the importance of being open-minded, asking honest questions related to youth mental health, and being persistent. Future work will strengthen the scientific rigor of the YCMHS and highlight preliminary survey results.

In this article, we use the framework of chronopolitics and racialized time to explore our experiences as professors of color at predominantly white institutions who strive to do emancipatory, community-driven research. Our shared work as organizers for Education for Liberation Minnesota (EdLibMN), a grassroots organization working to bring together various constituencies in Minnesota to organize for educational justice, led us to think together about chronopolitics as a framework to understand how our scholarly commitments to social transformation and liberatory education impact our labor and teaching practices at our institutions. This framework allows us to examine our relationships with communities in our individual research and advocacy contexts as well as in our shared work as organizers for EdLibMN. In particular, we explore how the urgency and timeline of our community-based advocacy work and the rhythms and improvisation of participatory action research are juxtaposed with the surveillance and evaluation of our labor and the urgency of “tenure clocks” at our institutions. We end by discussing our own transformational learning through our collaborations with community researchers and organizers. We speculate about the possibilities of bending time–the chronopolitics of collective struggle and joy–that allows us to focus on building relationships as a central tenet of emancipatory research practices and to ensure our own health and wellbeing as scholar-activists of color.

Background: More than 50% of colorectal cancer (CRC)–related deaths could be prevented with early detection and treatment. Federally Qualified Healthcare Centers (FQHCs)—safety-net facilities that provide primary care services to uninsured, underinsured and minority patients—report some of the lowest CRC screening rates. Effective CRC screening interventions within FQHCs may help to promote CRC screening utilization among patients from diverse backgrounds. Focus of Article: This study was designed to explore average-risk, patient perceptions of facilitators and impediments of using the Fecal Immunochemical Test (FIT) kit for CRC screening within the social marketing framework of the 4 "P's"—product, price, place, and promotion. Research Aim: To conduct formative research with priority populations (i.e., diverse, FQHC patients), assess acceptability of the FIT kit, and identify ways to better meet preferences and needs. Program Design/Approach: Qualitative, Focus Groups. Importance to the Social Marketing Field: Findings from this study would aid in the future development of a community-based prevention marketing intervention to promote CRC screening within FQHCs that serve diverse patient populations. Methods: Focus groups were conducted in English and Spanish with CRC screening age-eligible patients from a South Florida FQHC System. Interview guides were designed to better understand FQHC patient perceptions of CRC Screening via the FIT kit (product) by up-to-date and not up-to-date participants. Additional topics included likes/dislikes (price), preferred location for completing CRC screening and receiving CRC prevention education (place), and strategies for persuasive communication to increase CRC screening among patients who visit FQHCs (promotion). Data were analyzed to identify FIT screening facilitators and impediments using thematic coding in MaxQDA. Results: Five focus groups, involving 36 participants aged 50 and older, were conducted. Over half of participants self-identified as Hispanic (36%) or non-Hispanic Black (28%). Key facilitators were the convenience and simplicity of at-home testing (product), presumed affordability of it compared to colonoscopy (price), and ability to return by mail (place). Participants also shared numerous strategies for promotion, including direct referral from Primary Care Providers, mass media campaigns, mailed or electronic reminders from the clinic, and peer advocacy events in churches. Recommendations for Research or Practice: Social marketing provides an adequate approach for developing a patient-centered campaign to promote CRC screening uptake at FQHCs. Future CRC screening promotional campaigns at FQHCs should build on the motivation that patients must prioritize their health by emphasizing the convenience of completing CRC screening at home with the capability of mailing it back. Clinics should also work to reduce patient responsibility by developing automated clinic system reminders to openly communicate with patients about CRC screening. [ABSTRACT FROM AUTHOR]

Introduction: The study examined Black and White prospective participants' views of barriers to and facilitators of participation in Alzheimer's disease (AD) biomarker research. Methods: In a mixed‐methods study, 399 community‐dwelling Black and White older adults (age ≥55) who had never participated in AD research completed a survey about their perceptions of AD biomarker research. Individuals from lower socioeconomic and education backgrounds and Black men were over‐sampled to address perspectives of traditionally under‐represented groups. A subset of participants (n = 29) completed qualitative interviews. Results: Most participants expressed interest in biomarker research (overall 69%). However, Black participants were comparatively more hesitant than White participants (28.9% vs 15.1%), were more concerned about study risks (28.9% vs 15.1%), and perceived multiple barriers to participating in brain scans. These results persisted even after adjusting for trust and perceived knowledge of AD. Information was a primary barrier (when absent) and incentive (when provided) for AD biomarker research participation. Black older adults desired more information about AD (eg, risk, prevention), general research processes, and specific biomarker procedures. They also desired return of results to make informed decisions about their health, research‐sponsored community awareness events, and for researchers to mitigate the burden placed on participants in research (eg, transportation, basic needs). Conclusion: Our findings increase representativeness in the literature by focusing on individuals with no history of AD research experience and those from traditionally underrepresented groups in research. Results suggest that the research community needs to improve information sharing and raising awareness, increase their presence in the communities of underrepresented groups, reduce incidental costs, and provide valuable personal health information to participants to increase interest. Specific recommendations for improving recruitment are addressed. Future studies will assess the implementation of evidence‐based, socioculturally sensitive recruitment strategies to increase enrollment of Black older adults into AD biomarker studies. HIGHLIGHTS: Individuals from under‐represented groups are interested in Alzheimer's disease (AD) biomarker research.After adjusting for trust and AD knowledge, Black participants were still more hesitant.Information is a barrier (when absent) to and incentive (when given) for biomarker studies.Reducing burden (e.g., transportation) is essential for recruiting Black older adults. [ABSTRACT FROM AUTHOR]

Community-engaged research (CEnR) is a powerful tool to create sustainable and effective change in health outcomes. CEnR engages community members as equal partners, amplifying their voices and priorities by including them throughout the research process. Such engagement increases the relevance and meaning of research, improves the translation of research findings into sustainable health policy and practice, and ultimately enhances mutual trust among academic, clinical, and community partners for ongoing research partnership. There are a number of key principles that must be considered in the planning, design, and implementation of CEnR. These principles are focused on inclusive representation and participation, community empowerment, building community capacity, and protecting community self-determination. Although vascular surgeons may not be equipped to address these issues from the ground up by themselves, they should work with a team who can help them incorporate these elements into their CEnR project designs and proposals. This may be best accomplished by collaborating with researchers and community-based organizations who already have this expertise and have established social capital within the community. This article describes the theory and principles of CEnR, its relevance to vascular surgeons, researchers, and patients, and how using CEnR principles in vascular surgery practice, research, and outreach can benefit our patient population, with a specific focus on reducing disparities related to amputation. [ABSTRACT FROM AUTHOR]

Beginning farmers are critical in shaping resilient food systems amid a worsening climate crisis. Reports indicate a prevalence of stress and adverse mental health outcomes among U.S. farmers, yet there are gaps in the literature concerning the wellbeing of beginning farmers, a heterogeneous group with a growing number of women and BIPOC (Black, Indigenous, or People of Color) producers. The agricultural industry has a legacy of systemic oppression and exploitation of marginal communities. Thus, it is important to understand the unique needs of an emerging, more diverse generation of farmers, especially as discrimination is associated with stress and poor mental health outcomes. In this community-engaged, mixed methods research project, we utilize a food justice framework to understand systemic stressors and coping strategies among Midwestern beginning farmers. Beginning farmers in the Midwest were recruited using purposive sampling to participate in quantitative surveys and in-depth interviews. The survey (n=62) included measures of farm stress, mental health supports, and farm characteristics; the Patient Health Questionnaire-4; and sociodemographic information. Interviews (n=20) were conducted to establish a deeper understanding of stress and mental health experiences. Survey data were analyzed using descriptive statistics. Interviews were analyzed using thematic analysis. Top stressors included having too much to do and too little time, COVID-19, not enough person-power on the farm, climate change, and social justice. Of survey respondents, 58% reported mild to severe symptom burden of anxiety or depression. Five qualitative themes emerged, including the stress of capitalism, discrimination and inequitable access to resources, aids and gaps in social support, rugged individualism, and heterogeneous perspectives on social justice and climate change. Four transformative food justice practices aimed at rectifying structural inequalities inform our implications. Our results emphasize the urgency of systemic change and structural support for beginning farmers. [ABSTRACT FROM AUTHOR]

Abstract Introduction The study examined Black and White prospective participants’ views of barriers to and facilitators of participation in Alzheimer's disease (AD) biomarker research. Methods In a mixed‐methods study, 399 community‐dwelling Black and White older adults (age ≥55) who had never participated in AD research completed a survey about their perceptions of AD biomarker research. Individuals from lower socioeconomic and education backgrounds and Black men were over‐sampled to address perspectives of traditionally under‐represented groups. A subset of participants (n = 29) completed qualitative interviews. Results Most participants expressed interest in biomarker research (overall 69%). However, Black participants were comparatively more hesitant than White participants (28.9% vs 15.1%), were more concerned about study risks (28.9% vs 15.1%), and perceived multiple barriers to participating in brain scans. These results persisted even after adjusting for trust and perceived knowledge of AD. Information was a primary barrier (when absent) and incentive (when provided) for AD biomarker research participation. Black older adults desired more information about AD (eg, risk, prevention), general research processes, and specific biomarker procedures. They also desired return of results to make informed decisions about their health, research‐sponsored community awareness events, and for researchers to mitigate the burden placed on participants in research (eg, transportation, basic needs). Conclusion Our findings increase representativeness in the literature by focusing on individuals with no history of AD research experience and those from traditionally underrepresented groups in research. Results suggest that the research community needs to improve information sharing and raising awareness, increase their presence in the communities of underrepresented groups, reduce incidental costs, and provide valuable personal health information to participants to increase interest. Specific recommendations for improving recruitment are addressed. Future studies will assess the implementation of evidence‐based, socioculturally sensitive recruitment strategies to increase enrollment of Black older adults into AD biomarker studies. HIGHLIGHTS Individuals from under‐represented groups are interested in Alzheimer's disease (AD) biomarker research. After adjusting for trust and AD knowledge, Black participants were still more hesitant. Information is a barrier (when absent) to and incentive (when given) for biomarker studies. Reducing burden (e.g., transportation) is essential for recruiting Black older adults.

Community-based participatory research (CBPR) is an emerging research approach with the aim of increasing sampling of diverse populations in studies. The purpose of this study was to evaluate the psychometric properties of scores on the CBPR Knowledge Self-Assessment Scale (CBPR-KSAS) using Rasch analysis. The scale was completed by 204 participants. The data fit the Rasch model well, were sufficiently reliable and unidimensional, and separated the respondents into four statistically distinguishable groups. The item hierarchy was partially supported theoretically by distinguishing the lower, middle, and upper ends of CBPR knowledge competencies. These results provide empirical support that CBPR knowledge can be conceptualized and measured on a meaningful continuum. [ABSTRACT FROM AUTHOR]

As institutions of higher education evolve and adapt to meet the increasing needs of their communities, faculty are faced with the choice of where and how to employ their time and expertise. To advance and encourage partnerships between institutions and their communities, academic reward structures must be designed in ways that support those who choose to leverage their expertise, resources, and time to engage with community in meaningful and mutually beneficial ways. This dissertation (Wendling, 2022) contributes to the growing body of higher education community engagement literature by investigating how school- and department-level promotion and tenure committees not only define and understand faculty's engaged research, but how they evaluate it. Specifically, this dissertation explored what goes into making evaluative decisions, if and how committees utilize tools for evaluation, and how evaluative decisions are made. [ABSTRACT FROM AUTHOR]

Background: People with spinal cord injury (SCI) report feeling unprepared to manage their disability upon discharge to the community. This situation is exacerbated when they return to settings where self-management support and resources are sparse, thus increasing the risk of costly secondary conditions and rehospitalizations. These factors make a compelling case for implementing innovative community-based SCI self-management programs that empower and engage individuals with SCI. Using a community-engaged research (CEnR) approach, we developed a peer-supported SCI self-management intervention, known as PHOENIX (Peer-supported Health Outreach, Education, and Information Exchange), which integrates online educational content and support from peer navigators (PNs) through telehealth, to promote health and community participation after SCI. Objective: The objective of this pilot study is to evaluate the feasibility and acceptability of PHOENIX and the study design, and to obtain estimates of the variability of relevant outcome measures. Methods: We conducted a pilot randomized waitlist-controlled trial (n=30) in collaboration with the South Carolina Spinal Cord Injury Association (SCSCIA), our long-standing community-based nonprofit organization research partner. We recruited 4 PNs through our SCSCIA collaboration using its existing network of trained peer mentors. Our study design supported comparison of the following 2 randomly assigned groups: PHOENIX intervention group and waitlist enhanced usual care (EUC) group. The PHOENIX intervention was administered online by PNs over 16 weeks through scheduled "video visits." The EUC group participated in the study for 16 weeks with usual community services and no navigation, and received 4 monthly newsletters from the SCSCIA on a variety of SCI-relevant topics. At the end of the waitlist period, the waitlist EUC group received the full PHOENIX intervention. Measures of feasibility included PN and participant recruitment and retention, PN workload, protocol adherence, and incidence of technical issues. We conducted qualitative interviews with participants and PNs to evaluate the acceptability of PHOENIX and the study design. Outcome measures, including community participation, quality of life, and the occurrence and subjective impact of medically serious secondary conditions and rehospitalizations, were assessed at baseline after randomization and at subsequent time points to allow between-group comparisons. Results: PN hiring and training were completed in August 2018. Recruitment began in November 2018. A total of 30 participants were recruited across South Carolina, and 28 participants completed follow-up by August 2020. An analysis of the results is being finalized, and the results are expected to be published in 2023. Conclusions: This study will provide valuable information to guide future research seeking to address unmet self-management needs and improve outcomes in individuals with SCI. Feasibility findings of this study will provide evidence from CEnR guided by people with SCI and SCI service providers to inform further development, testing, and dissemination of effective and scalable self-management strategies for people with SCI. [ABSTRACT FROM AUTHOR]

Objectives: To help better control chronic conditions we need to address root causes of poor health like unhealthy behaviors, mental health, and social needs. However, addressing these needs in primary care is difficult. One solution may be connecting patients with a navigator for support creating a personal care goal. Methods: As part of an RCT to evaluate a feasible approach to care planning, 24 clinicians from 12 practices in the Virginia Ambulatory Care Outcomes Research Network (ACORN) and 87 intervention patients with uncontrolled chronic conditions participated in a care planning intervention. We had a structured process to guide patients, train navigators, and adapt the navigation process to meet the needs of each practice. Results: Only 1 practice had bandwidth for staff to serve as a patient navigator, even for extra pay. For the other 11 practices, a research team member needed to provide navigation services. On average, patients wanted 25 weeks of support to complete care plans. The average time patients needed to speak with navigators on the phone was 7 min and 3 s. In exit interviews, patients consistently shared how motivational it was to have a caring person check in on them, offer help, and hold them accountable. Conclusion: Patient navigation to address care plans should be feasible. The time commitment is minimal. It does not require intensive training, and primary care is already doing much of this work. Yet, given the burden and competing demands in primary care, this help cannot be offered without additional resources. [ABSTRACT FROM AUTHOR]

This article presents the results of the Historic Coulterville Digital Preservation Project, an important digital humanities research collaboration which started in the Fall 2015 between the University of California Merced Resource Center for Community Engaged Scholarship, the John Muir Geotourism Center, the Northern Mariposa County History Center, and faculty and graduate students of the Interdisciplinary Humanities Graduate Program at UC Merced. Dictated by the needs and goals of the community members of the gold rush town of Coulterville, in the Sierra Foothills of California, who are invested in the preservation of their cultural heritage, the project focused on digital historic preservation in four areas of focus: i) the archives and photographs at the Northern Mariposa County History Center, ii) the Coulterville cemeteries, iii) oral histories of Coulterville, and iv) the digital documentation of Coulterville Main Street Historic District. Combined, these four areas of focus presented a breadth of subject matter through which to test various digital preservation methods in a real-world scenario as well as provided both the students and the community members the opportunity to study subjects in greater depth that were of mutual interest. The project provides an example of the potential for community-university research collaborations to benefit local communities while also providing training and networking opportunities for students, and new scholarship case studies for the scholars.

West Virginia (WV) has the highest rates of obesity and cardiopulmonary disease in the United States (U.S.). Recent work has identified a significant care gap in WV for obstructive sleep apnea (OSA). This OSA care gap likely has significant health implications for the region given the high rates of obesity and cardiopulmonary disease. The purpose of this mix methods study was to identify barriers that contribute to the rural OSA care disparity previously identified in WV. Methods: This study used mixed methods to evaluate the barriers and facilitators to management of OSA at Federally Qualified Health Centers serving communities in southern WV. Focus groups were conducted at federally qualified health centers with providers serving Appalachian communities. Participants also completed the validated Obstructive Sleep Apnea Knowledge and Attitudes (OSAKA) questionnaire to gain insight into provider knowledge and beliefs regarding OSA. EMR analysis using diagnostic codes was completed at the sites to assess OSA prevalence rates. The same individual served as the interviewer in all focus group sessions to minimize interviewer variability/bias. Our team checked to ensure that the professional transcriptions were correct and matched the audio via spot checks. Results: Themes identified from the focus groups fell into three broad categories: (1) barriers to OSA care delivery, (2) facilitators to OSA care delivery, and (3) community-based care needs to optimize management of OSA in the targeted rural areas. Questionnaire data demonstrated rural providers feel OSA is an important condition to identify but lack confidence to identify and treat OSA. Evaluation of the electronic medical record demonstrates an even larger OSA care gap in these rural communities than previously described. Conclusion: This study found a lack of provider confidence in the ability to diagnose and treat OSA effectively and identified specific themes that limit OSA care in the communities studied. Training directed toward the identified knowledge gaps and on new technologies would likely give rural primary care providers the confidence to take a more active role in OSA diagnosis and management. An integrated model of care that incorporates primary care providers, specialists and effective use of modern technologies will be essential to address the identified OSA care disparities in rural WV and similar communities across the U.S. Community engaged research such as the current study will be essential to the creation of feasible, practical, relevant and culturally competent care pathways for providers serving rural communities with OSA and other respiratory disease to achieve health equity. [ABSTRACT FROM AUTHOR]

Elder abuse and neglect (EAN) are serious health and human rights issues. Less is known about EAN in refugee communities. University researchers and leaders of a refugee services nonprofit partnered to conduct an exploratory community engaged study on EAN risks in two refugee communities in North Carolina. A convenience sample of 17 Nepali-speaking Bhutanese and 13 Congolese self-identified older adults filled short surveys and participated in Focus Group Discussions (FGDs). Descriptive survey findings showed EAN risk, isolation, economic insecurity, and family dependency, more among Congolese. FGDs yielded no reports of EAN, but showed dependence on family, and difficulties with language, transportation, and economic insecurity in both groups. These factors indicate individual and contextual vulnerabilities for EAN in these communities. An EAN awareness event was conducted for participants by a family violence nonprofit. Refugee older adults need culturally appropriate coordinated services including EAN information, English classes, job skills, income, and transportation. [ABSTRACT FROM AUTHOR]

In this paper, we describe our process of changing language of the National Institute on Aging Imbedded Pragmatic Alzheimer's disease and AD-related dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory) "Stakeholder Engagement Team" to "Engaging Partners Team" in response to feedback from community partners regarding the problematic connotations of the term "stakeholder." We present a brief history of the term "stakeholder" and its use in clinical and community-engaged research. Then, we summarize critiques of this term, including its colonial history and potential to reinforce complacency with generational traumas, particularly among Indigenous peoples and communities. We conclude with a detailed overview of our team and organization's multi-step process to discontinue use of the term "stakeholder," in alignment with a theoretical model of organizational behavior change. This paper highlights the importance of critically evaluating language and responding to community partners. We hope our process can guide other researchers and organizations., Competing Interests: DISCLOSURES The authors report no conflicts with any product mentioned or concept discussed in this article. Source of Funding: This work was supported in part by theNational Institute on Aging (NIA) of the National Institutes of Healthunder Award NumberU54AG063546, which funds NIA Imbedded Pragmatic Alzheimer's Disease and AD-Related Dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory). Evan Plys is supported by theNational Institute on Agingunder grantK23AG078410., (Copyright © 2024 American Association for Geriatric Psychiatry. All rights reserved.)

Introduction: Opioid use disorder is a leading public health issue in the USA, with complex drivers requiring a multi-level response. Rural communities are particularly affected by opioid misuse. Due to variability in local conditions and resources, they require community-specific responses. The aim of this study was to gain insight into the perceptions, knowledge, and experiences of members of a rural community impacted by the opioid crisis to inform the development of local strategies to address the crisis. Methods: Stakeholder focus groups were conducted by a participatory research team as part of a larger project using the Stakeholder Engagement in Question Development and Prioritization (SEED) Method. Results: Key findings from the focus groups included the importance of family dynamics and social networks as risk and resiliency factors, addressing hopelessness as a preventive strategy, the need for holistic approaches to treatment, childhood exposure resulting in intergenerational substance use, the needs of overburdened healthcare providers, the expansion of long-term rehabilitation programs, and the need for judicial reform towards those with opioid use disorder. Specific and well-defined strategies are needed for more comprehensive methods to address the complexity of opioid use disorder. Understanding factors that contribute to opioid use disorder in rural communities through a stakeholder engagement process should be the first responsive strategy in developing actions. Conclusion: This study shows that rural community stakeholders provide important perspectives that can be useful in solving the drug epidemic in their neighborhoods. Their understanding of the internal dynamics of the communities' needs offers a unique roadmap in which prioritized actions can be customized and adapted for improving health outcomes.

IntroductionThe COVID-19 pandemic highlighted significant structural barriers that exacerbated health inequities among people at-risk for overdose. Digital health technologies have the potential to overcome some of these barriers; however, development of these technologies often fails to include people who use drugs and community key stakeholders in the development and dissemination process. Consequently, this may exacerbate health inequities and the digital divide among underserved, highly vulnerable people who use drugs.MethodsThe current study employed community-engaged research methods to develop and implement a digital platform to improve overdose surveillance among harm reductionists in Texas. We used a co-design process with four community advisory boards (CABs) and conducted qualitative interviews among N = 74 key stakeholders (n = 24 people who use drugs; n = 20 first responders, n = 20 harm reductionists, n = 10 overdose prevention and response experts) to inform initial design and development.ResultsSeveral key themes emerged through the qualitative data pertaining to technical features and human factors applications. In regards to technical features, participants highlighted the importance of developing a unified system of overdose reporting and data sharing among community organizations within a county or region to better inform overdose surveillance and community outreach efforts. This system should include flexible data entry methods, have offline usage capability, be user friendly, and allow for tracking of overdose-related supply distribution. Key human factor themes included the need to use person-centered language, to preserve the established trust of the community organizations among people who use drugs, to be tailored to specific target user groups (e.g., harm reduction workers, people who use drugs, first responders), and maintain transparency of data usage. Further, participants noted the importance of developing a platform that will facilitate client conversations about overdose when doing outreach in the field. These themes were reviewed by our CABs, academic, and industry partners to design an overdose digital platform uniquely tailored to community-based organizations providing harm reduction and overdose response efforts.DiscussionCommunity engagement throughout the development process is critical toward developing digital health tools for underserved people who use drugs. Dismantling the power structure among academic and industry partners is critical toward creating equity in engagement of community-based partners, particularly among persons with lived experience in addiction, a history of incarceration, or financial challenges. Our study highlights a multisectoral co-design process across community-academic-industry partners to develop a digital health tool tailored to the unique needs of community-based harm reduction organizations serving highly vulnerable people who use drugs. These partnerships are essential toward creating impact and reducing health disparities among highly vulnerable people who use drugs.

Abstract Background Community engagement may make research more relevant, translatable, and sustainable, hence improving the possibility of reducing health disparities. The purpose of this study was to explore strategies for community engagement adopted by research teams and identify areas for enhancing engagement in future community engaged research. Methods The Community Engagement Program of the Johns Hopkins Institute for Clinical and Translational Research hosted a forum to engage researchers and community partners in group discussion to reflect on their diverse past and current experiences in planning, implementing, and evaluating community engagement in health research. A total of 50 researchers, research staff, and community partners participated in five concurrent semi-structured group interviews and a whole group wrap-up session. Group interviews were audiotaped, transcribed verbatim, and analyzed using content analysis. Results Four themes with eight subthemes were identified. Main themes included: Community engagement is an ongoing and iterative process; Community partner roles must be well-defined and clearly communicated; Mutual trust and transparency are central to community engagement; and Measuring community outcomes is an evolving area. Relevant subthemes were: engaging community partners in various stages of research; mission-driven vs. “checking the box”; breadth and depth of engagement; roles of community partner; recruitment and selection of community partners; building trust; clear communication for transparency; and conflict in community engaged research. Conclusion The findings highlight the benefits and challenges of community engaged research. Enhanced capacity building for community engagement, including training and communication tools for both community and researcher partners, are needed.

Effective dissemination of information about evidence-based programs (EBPs) is essential for promoting health equity. Faith-based and other community organizations have difficulty locating EBPs for implementation in their settings. A research team engaged in a systematic search to identify a menu of EBPs that could be offered to African American FBOs as part of a community-engaged implementation study. Methods. A four-stage process was developed to search for EBPs meeting seven inclusion criteria for dissemination in faith-based organizations (FBOs). Criteria included relevance to identified health disparity topics, endorsement on a federal website, free access to downloadable program materials, facilitator guidance, no requirements for health care providers, and culturally relevant materials for African American communities.Nineteen government websites were searched. Sixty-six potential EBPs were identified. Six EBPs met all inclusion criteria.The search for EBPs that met seven criteria for implementation in African American FBOs demonstrated challenges that have been described in the literature. Researchers encountered a lack of standardized terminology for identifying EBPs on federal websites, frequent requirement for health care providers or clinics and/or fees for training and materials. FBOs are supportive and safe places to offer EBPs to promote health, and EBPs need to be designed and disseminated to meet the needs and preferences of FBOs. Including members of FBOs and others in the community in EBP development, design, and dissemination, such as searchable health promotion EBP registries, can increase the likelihood that effective programs intended to address health disparities are readily accessible to FBOs for implementation. [ABSTRACT FROM AUTHOR]

Introduction: Opioid use disorder is a leading public health issue in the USA, with complex drivers requiring a multi-level response. Rural communities are particularly affected by opioid misuse. Due to variability in local conditions and resources, they require community-specific responses. The aim of this study was to gain insight into the perceptions, knowledge, and experiences of members of a rural community impacted by the opioid crisis to inform the development of local strategies to address the crisis. Methods: Stakeholder focus groups were conducted by a participatory research team as part of a larger project using the Stakeholder Engagement in Question Development and Prioritization (SEED) Method. Results: Key findings from the focus groups included the importance of family dynamics and social networks as risk and resiliency factors, addressing hopelessness as a preventive strategy, the need for holistic approaches to treatment, childhood exposure resulting in intergenerational substance use, the needs of overburdened healthcare providers, the expansion of long-term rehabilitation programs, and the need for judicial reform towards those with opioid use disorder. Specific and well-defined strategies are needed for more comprehensive methods to address the complexity of opioid use disorder. Understanding factors that contribute to opioid use disorder in rural communities through a stakeholder engagement process should be the first responsive strategy in developing actions. Conclusion: This study shows that rural community stakeholders provide important perspectives that can be useful in solving the drug epidemic in their neighborhoods. Their understanding of the internal dynamics of the communities’ needs offers a unique roadmap in which prioritized actions can be customized and adapted for improving health outcomes. [ABSTRACT FROM AUTHOR]

One in four children in the US grow up in immigrant families, and 55% of children in immigrant families have a parent who speaks and understands English less than "very well". While the number of research studies that is focused on children in immigrant families (CIF) has increased, CIF particularly those that communicate in a language other than English (LOE) are frequently excluded from research. We reviewed studies including "children in immigrant families and the United States" in PubMed from 2017-2023, and categorized them as qualitative, quantitative, mixed-methods or community engaged research. We review observations and offer recommendations for research to promote the health and well-being of children in immigrant families including: using strengths-based frameworks; prioritizing the inclusion of families who speak languages other than English; amending reporting standards for qualitative studies to include guidance on reporting methods for projects in which research teams and study participants speak different languages from one another; and incorporating methods to identify people who have experienced migration in large national surveys and cohort studies. We recommend research with and inclusive of CIF to consider additional areas for growth in cross-sector collaborations, interventions and clinical trials, and training and support for investigators., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024. Published by Elsevier Inc.)

In this article, we describe a personalized approach to meeting individual and community health needs that foregrounds relational learning. This article analyzes how relational approaches to learning expand participants' objectives and result in more enduring learning. We report on mixed methods data from interviews, focus groups, surveys, and goal setting and monitoring. Analyses reveal that relationships de confianza served as a central tool in supporting participants' agency to enact change across scales of practice to promote the health of themselves, their families, and their communities. [ABSTRACT FROM AUTHOR]

Objective: The aims of the study were to gain a better understanding of the resources, barriers, and facilitators of participation in adaptive sport and recreational activities as a means of achieving physical activity recommendations in individuals with disability and to understand preferences for a patient navigator service to help mitigate the barriers. Design: Clinical, academic, and community stakeholders applied a community-engaged research approach to develop online surveys and focus group questions for adults with a disability or parents of a child with a disability to meet study objectives. Results: One hundred ninety-eight adults and 146 parents completed the online surveys. Sixteen adults and 18 parents took part in focus groups. Many participants lacked knowledge of available adaptive sport and recreational resources; other barriers were expense, limited number of trained volunteers, and need for instruction. Conversely, persons were facilitated by community, socialization, and words of encouragement/motivation. Participants strongly preferred a patient navigator to be a person active in adaptive sport and recreational or an informative resource-filled website. Conclusions: Our findings suggest that physical activity programs including adaptive sport and recreational should be designed to offer people with disabilities opportunities to build social networks and strengthen social support. A patient navigator service could help increase participation in adaptive sport and recreational and physical activity within a community context. [ABSTRACT FROM AUTHOR]

Community Based Participatory Research (CBPR), as the most cited Community‐Engaged Research (CEnR) approach in the health fields, mirrors community‐psychology's long‐term interest in participatory action research and community empowerment. This article introduces the Engage for Equity study, a long‐term National Institutes of Health‐funded inquiry to identify best partnering and collaborative practices that contribute to community capacity, empowerment and policy outcomes, and to long‐term improved health and health equity. Four articles present facets of the study: psychometrics of partnering process and outcome measures, measures and outcomes of shared governance, and description of the CBPR Model as a new equity‐ and partnership based implementation framework; and as a tool for organizational learning and quality improvement. Finally a review of CBPR and CEnR in psychology offers recommendations for the field. Though focusing on CBPR and CEnR, Engage for Equity offers lessons for all forms of participatory action research. Highlights: Engage for Equity research contributes a validated CBPR Model and measures for engaged research.Engage for Equity contributes new ways to use collective reflection tools to strengthen partnershipsOur research has contributed learnings in psychometrics of measures of processes and outcomesE2 surveys of over 400 diverse partnerships provides major national evidence of best practices [ABSTRACT FROM AUTHOR]

We propose an alternative methodology for engaging with multifaceted cultural ecosystem services (CES) in the Global South. We explore the use of dialogue as a tool for understanding CES in situ, while developing shared action steps toward CES conservation among stakeholders. We held six dialogue workshops in the rural Central Pacific region of Costa Rica that were designed to foster understanding of shared community values for ecosystem services and associated conservation challenges. In two of the workshops, we employed model-based reasoning through which we used maps as boundary negotiating objects to nurture dialogue on CES values, observations, and concerns. In four of the workshops, we used photovoice to elicit reflection and dialogue on CES values and changes in ecosystem services in the region. Observations and surveys of workshop participants revealed that the process engendered reflection on ecosystem service values, and community support and enthusiasm for future communal efforts. These workshops demonstrated how dialogue can elucidate local values for CES, while strengthening support across stakeholders for improved conservation actions. We propose that this methodology is applicable in various contexts for improved CES assessment across diverse stakeholders. [ABSTRACT FROM AUTHOR]

Abstract Background To address an urgent need to advance the field of community engaged research, faculty at Vanderbilt University Medical Center and Meharry Medical College organized the national meeting "Advancing the Science of Community Engaged Research (CEnR): Innovative & Effective Methods of Stakeholder Engagement in Translational Research, Washington, DC September 14-15, 2017 (See Additional file 1). These meetings brought together a diverse group of stakeholders to share community engaged research evidence and practical knowledge for implementing new and enhancing existing research programs. The conference series’ goals were: 1) to expand the scientific basis for the community engaged research field by convening researchers, community partners, patient advocacy organizations, and others to share innovative methods and strategies; 2) to engage community representatives and patient advocates in the development of new approaches in community engaged research by meaningfully involving them in the planning, as speakers and presenters, and as conference participants; and 3) to catalyze innovative community engaged research using interactive meeting methods that promote learning, support collective problem solving, and encourage new conceptual frameworks. These conferences have advanced community engagement across the translational research spectrum in biomedical research. For the 2017 meeting, described here, the overarching theme was Innovative and Effective Methods of Stakeholder Engagement in Translational Research. Methods The forum was attended by over 210 participants. This conference used novel approaches to fulfill its objectives of participant diversity, meaningful stakeholder engagement, and eliciting varied distinct perspectives to advance the science of community engaged research. Innovative strategies for the conference included: Think Tanks focused on emerging community engaged research topics or topics in need of urgent attention. These dynamic group sessions provided for freely sharing ideas with the purpose of creating change and facilitating new research collaborations. Learning Labs offered unique opportunities to gain practical knowledge regarding innovative methods in community engaged research. Learning Labs also facilitated the wide broadcast of locally successful engagement methods with the goal of speeding the uptake and implementation of community engaged methods. Travel Scholarships were provided for twenty community and patient representatives to participate in the conference. The lack of travel funds was a significant barrier to stakeholder participation in prior community engaged research meetings. The scholarships expanded the role of community and patient representatives in setting research priorities and promoting methods development. Meaningful Engagement meant that community members and patients participated in decision making on all aspects of the conference planning, including the selection of themes, topics, and speakers, and were fully integrated into the conference as speakers, panelists, and moderators. Conclusions Community and stakeholder engagement can directly impact research by enhancing clinical trial design, increasing relevance, and increasing recruitment, accrual and retention (Staley K.: Exploring Impact: Public 53 Involvement in NHS, Public Health and Social Care Research – INVOLVE.; 2009, Johnson et al Clin Transl Sci 8:388-54 390, 2015, Joosten et al Acad Med 90:1646-1650, 2015). The 2017 Advancing the Science of Community Engaged Research meeting, Innovative and Effective Methods of Stakeholder Engagement in Translational Research facilitated meaningful engagement of diverse stakeholder groups including racial and ethnic minorities, community and patient representatives, and junior investigators. Of 210 attendees, 72 completed the evaluation, and, of those, 36% self-affiliated as community members, and 21% as patient/caregiver advocacy, faith-based, or tribal organization members. This conference 1) represented a step toward expanding the scientific basis for the community engaged research (CEnR) field; 2) catalyzed innovative community engaged research; and 3) enhanced the reach and impact of the scientific developments emerging from pioneering work in community engagement.

Background: Community engagement may make research more relevant, translatable, and sustainable, hence improving the possibility of reducing health disparities. The purpose of this study was to explore strategies for community engagement adopted by research teams and identify areas for enhancing engagement in future community engaged research. Methods: The Community Engagement Program of the Johns Hopkins Institute for Clinical and Translational Research hosted a forum to engage researchers and community partners in group discussion to reflect on their diverse past and current experiences in planning, implementing, and evaluating community engagement in health research. A total of 50 researchers, research staff, and community partners participated in five concurrent semi-structured group interviews and a whole group wrap-up session. Group interviews were audiotaped, transcribed verbatim, and analyzed using content analysis. Results: Four themes with eight subthemes were identified. Main themes included: Community engagement is an ongoing and iterative process; Community partner roles must be well-defined and clearly communicated; Mutual trust and transparency are central to community engagement; and Measuring community outcomes is an evolving area. Relevant subthemes were: engaging community partners in various stages of research; mission-driven vs. "checking the box"; breadth and depth of engagement; roles of community partner; recruitment and selection of community partners; building trust; clear communication for transparency; and conflict in community engaged research. Conclusion: The findings highlight the benefits and challenges of community engaged research. Enhanced capacity building for community engagement, including training and communication tools for both community and researcher partners, are needed. [ABSTRACT FROM AUTHOR]

Abstract Introduction: Clinical and Translational Award (CTSA) programs are developing relevant training for researchers and community stakeholders participating in community-engaged research (CEnR). However, there is limited research exploring the ways community stakeholders and partners with key CEnR experiences can inform and shape training priorities for prospective CEnR scholars to build meaningful and equitable partnerships. Methods: This study conducted and analyzed online individual semi-structured in-depth interviews with community stakeholders (n = 13) engaged in CEnR to identify training priorities for graduate students and emerging scholars. Findings: Thematic analysis of 13 interview transcripts revealed four major training priorities for prospective scholars interested in engaging in CEnR: 1) researcher’s positionality, 2) equitable power sharing, 3) funding, and 4) ethics. Conclusion: Building equitable research partnerships was a central theme woven across all four training priorities. Further research should focus on examining the development, implementation, and evaluation of CEnR training in partnership with community stakeholders and partners with relevant CEnR experience. Adopting a collaborative approach to incorporate both community stakeholders and researchers’ priorities can align training competencies to better prepare scholars to engage in building research partnerships.

This article describes the development of a distance-delivered social skills training program for adults with Williams syndrome (SSTP-WS) through a community engaged approach. Throughout six phases of development, the research team received input from adults with Williams syndrome, caregivers, service providers, educators, and researchers on (a) the need for a training program and topics to be addressed (Phase 1), (b) an initial draft of the SSTP-WS (Phase 3), (c) the intervention pilot study (Phase 5), and (d) feedback to provide context for the results of the study (Phase 6). The development of the SSTP-WS resulted in an intervention aligned with the Williams syndrome community's values and needs that supports the unique cognitive and behavioral phenotypes and social characteristics of this low incidence disability population., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.