Challenges and Lessons from Conducting a Community-Engaged Evaluation of a Community Advisory Board-A Case Study from Flint.

Community-engaged research often poses challenges due to exactly those qualities that make it desirable: it provides a new model of research that differs in many ways from top-down, university-led, prospectively designed approaches. While many have discussed the challenges to conducting community-engaged research, few have provided precise and generalizable lessons for how to surmount these challenges. Here we discuss the challenges experienced in a project that was community-engaged at three levels: 1) a research team consisting of an academic and a community partner as well as a community and academic research assistant, 2) the research team engaged with a Community Advisory Board called the CBOP-CERB (Community Based Organization Partners-Community Ethics Research Board) throughout the project, and 3) the research involved recruiting community participants from an area with a historical distrust of researchers and research: Flint Michigan. We also discuss administrative challenges that this multilevel community-engagement posed. Most important, we provide practical lessons in order for future community-engaged research to avoid or mitigate many of these challenges.

Engaging with Rural Communities for Colorectal Cancer Screening Outreach Using Modified Boot Camp Translation.

BACKGROUND: Colorectal cancer (CRC) incidence and mortality are disproportionately high among rural residents and Medicaid enrollees. OBJECTIVES: To address disparities, we used a modified community engagement approach, Boot Camp Translation (BCT). Research partners, an advisory board, and the rural community informed messaging about CRC outreach and a mailed fecal immunochemical test program. METHODS: Eligible rural patients (English-speaking and ages 50-74) and clinic staff involved in patient outreach participated in a BCT conducted virtually over two months. We applied qualitative analysis to BCT transcripts and field notes. RESULTS: Key themes included: the importance of directly communicating about the seriousness of cancer, leveraging close clinic-patient relationships, and communicating the test safety, ease, and low cost. CONCLUSIONS: Using a modified version of BCT delivered in a virtual format, we were able to successfully capture community input to adapt a CRC outreach program for use in rural settings. Program materials will be tested during a pragmatic trial to address rural CRC screening disparities.

Strategies for Recruiting Older Black Men into Aging and Alzheimer's Research.

BACKGROUND: Despite their high risks for Alzheimer's disease, older Black men are minimally represented in Alzheimer's research and clinical trials. The absence of older Black men in Alzheimer's research limits our ability to characterize the changes associated with cognitive impairments in older Black men-a key health disparity concern. METHODS: Drawing on lessons we learned from years of community-based participatory research in Newark, NJ, we highlight recruitment strategies developed alongside community partners to guide our enrollment and retention efforts for Black men. RESULTS: We identified seven recruitment strategies: provide indirect health education through social programming, target older men through the younger men in their lives, go beyond Black churches, use older Black men as trained community ambassadors, enlist the women in Black men's lives, frame research participation as a legacy to leave their sons, and use past and current Black men participants as role models. CONCLUSIONS: These recruitment strategies help us address many barriers to recruiting older Black men. They can be easily implemented by researchers conducting aging and brain health research or interested in working with older Black men and under-represented populations.

Infectious Disease Preparedness for Homeless Populations: Recommendations from a Community-Academic Partnership.

BACKGROUND: People experiencing homelessness are at increased risk of infectious disease transmission due to congregate living conditions, barriers to healthcare, and excess burden of underlying chronic disease. OBJECTIVES: We are a multisectoral community-academic partnership working to address the intersecting crises of homelessness and health disparities in Tippecanoe County, Indiana. We offer key recommendations for infectious disease preparedness and risk mitigation for homeless populations based on our ongoing community-based participatory research and lessons learned through COVID-19 response and Monkeypox preparations. LESSONS LEARNED: Infectious disease preparedness and response in homeless populations requires strong local partnerships; ongoing training and support for staff and volunteers of homeless shelters and service agencies; tailored outreach, education, and communication with people experiencing homelessness; and standardized processes for creating, disseminating, enforcing, and evaluating public health policies in homeless shelters. Consistency and open communication are key to a successful community-academic partnership. CONCLUSIONS: Community-academic partnerships are critical to effective infectious disease preparedness in homeless populations. The lessons learned from community-based participatory research with homeless communities and multisectoral partners on the frontline can improve future outbreak and pandemic response for people experiencing homelessness and other vulnerable communities in the United States.

Implementing a Community Engagement Model to Develop a Community-Driven Oral Health Intervention.

BACKGROUND: Using community-engaged research may result in interventions that reduce infant oral health disparities in underserved populations. OBJECTIVE: Develop community partnerships to create a sustainable infant oral health program that meets specific community-identified needs and provides an interprofessional education experience. METHODS: Partnering with the Homewood Community Engagement Center, researchers engaged and surveyed key community partners to assess the need for an infant oral health invention. LESSONS LEARNED: Community-identified organizing principles and barriers became the framework for, "Healthy Teeth, Healthy Me," a community-driven infant oral health program. Barriers, like access to care, were addressed with community-specific solutions like agreements with local dental clinical for referrals. CONCLUSIONS: Community partnerships can be leveraged to develop oral health programs that fit specific community needs and provide resources to families at greatest risk for child dental caries. Community engagement can be used to modify the intervention to meet oral health needs of other vulnerable communities.

Promoting COVID-19 Vaccine Confidence and Access among Youth Experiencing Homelessness: Community-Engaged Public Health Practice.

BACKGROUND: Youth experiencing homelessness (YEH) face a wide range of complex barriers to COVID-19 vaccine confidence and access. OBJECTIVES: Describe our process for engaging a cross-sector team centering equity and youth voice; outline our intervention strategies to enhance COVID-19 vaccine confidence and access among YEH; and discuss lessons learned through this community-engaged process. METHODS: We engaged partners from across sectors, including youth-serving agencies, healthcare organizations, public health organizations, and YEH. We used focus groups, key informant interviews, and other community engagement strategies to develop and implement a series of interventions aimed to increase COVID-19 vaccine confidence and access among YEH. RESULTS: We identified youths' key concerns about vaccine confidence and access. To address these concerns, we implemented four community-driven interventions: youth-friendly messaging, health events, vaccine aftercare kits, and staff training. CONCLUSIONS: This community-engaged project highlighted the value of cross-sector partnership and consistent youth engagement in addressing vaccine confidence among YEH.

A Community-Based Participatory Approach in Applying the Sociocultural Resilience Model in U.S-Mexico Border Communities.

BACKGROUND: Behavioral models play a key role in identifying pathways to better health and provide a foundation for health promotion interventions. However, behavioral models based in epidemiological research may be limited in relevance and utility in practice. OBJECTIVES: We describe a participatory approach within a community-based participatory research partnership for integrating epidemiological and community perspectives into the application of the sociocultural resilience model (SRM). The SRM posits that cultural processes have a symbiotic relationship with health-promoting social processes, which contribute to the health advantages among Mexicanorigin and other Latinx populations. METHODS: Community action board members engaged with academic partners to interpret and apply the SRM to a community-clinical linkages intervention implemented in the context of three U.S.-Mexico border communities. In a two-day workshop, partners engaged in a series of iterative discussions to reach common definitions and measures for SRM constructs. RESULTS: Partners described daily cultural processes as the food they eat, how they communicate, and a collectivist approach to getting things done. For intervention activities, the partners opted for intergenerational storytelling, sharing of food, and artistic forms of expression. Partners included measures of cultural nuances such as border identity and the complexities that often arise from navigating bicultural norms. CONCLUSIONS: Collaborative approaches within community-based participatory research partnerships can facilitate the adaptation and measurement of conceptual health behavior models in community practice.

Community Health Workers Deliver Mental Health Intervention to Uninsured Latinx in Baltimore: Evaluation and Lessons Learned in a Pilot Program.

BACKGROUND: Implementation of evidence-based interventions to reduce depression among uninsured Latinx patients who are at high risk of depression are rare. OBJECTIVES: Our goal was to evaluate Strong Minds, a language and culturally tailored, evidence-based intervention adapted from cognitive behavioral therapy (CBT) for mild-moderate depression and anxiety, delivered by community health workers (CHWs) in Spanish to uninsured Latinx immigrants. METHODS: As part of the pilot, 35 participants, recruited from a free community primary care clinic, completed Strong Minds. Assessments and poststudy interviews were conducted. Paired t-tests were used to assess change of depressive symptoms at 3 and 6 months. LESSONS LEARNED: CHW delivery of depression care to this population was feasible and among those who completed the program, preliminary evidence of depression outcomes suggests potential benefit. CHWs had specific training and support needs related to mental health care delivery. CONCLUSIONS: Further implementation studies of depression care interventions using CHWs for underserved Latinx is needed.

A Model of Community Health Worker Integration into Schools: Community-based Participatory Research in Action.

BACKGROUND: Schools are rich sites for collaborations between health and educational sectors. OBJECTIVES: To identify lessons learned from formation of a community-academic partnership and application of community-based participatory research (CBPR) to develop a model that integrates community health workers into schools. METHODS: Individuals from an academic medical center, a large public school district, and a community-based research institute applied CBPR principles to reimagine schools as a place for improving the health of children. LESSONS LEARNED: Three lessons emerged. Leveraging each team member's expertise centered the partnership on community strengths, co-learning, and stakeholder engagement. Adherence to CBPR's principles of power sharing and equity helped navigate the challenges of collaboration between large institutions. Early focus on sustainability helped address unexpected issues, build capacity, and boost advocacy. CONCLUSIONS: This partnership demonstrates how CBPR fosters conditions in which equitable partnerships between research institutions and public schools can thrive to promote childhood health.

Developing the Feast for the Future Program through a Community Visioning Process.

BACKGROUND: Three tribal communities in the Southwestern United States have a long-standing partnership with the Johns Hopkins Center for Indigenous Health (JHCIH). OBJECTIVES: In response to community concerns about obesity, three tribal communities and Johns Hopkins Center for Indigenous Health partnered to develop culturally relevant plans for a new program. METHODS: Using a "community visioning" process, a community advisory board (CAB) from each community identified opportunities, challenges, goals, and visions for their communities. The CABs consulted with experts in pediatrics, nutrition, food distribution, agricultural restoration, and community and school gardening. RESULTS: The CABs developed seven components for Feast for the Future: 1) Edible School Gardens; 2) Traditional Food-ways Education Program; 3) Community Gardens, Orchards, and Greenhouses; 4) Farmers Markets; 5) Farmers Workshops; 6) Family Gardens; and 7) a Mobile Grocery Store. CONCLUSIONS: A community-based participatory action research (CBPAR) process was critical to developing a culturally appropriate program that built on community strengths.

Lessons from Two Latino Communities Working with Academic Partners to Increase Access to COVID-19 Testing.

OBJECTIVE: We sought to examine the experiences of community partners in a community-academic partnership to promote COVID-19 testing in two majority Latino communities. METHODS: We conducted semistructured, in-depth interviews in English and Spanish with community-based organization leaders and community health workers/promotoras (n = 10) from June to July 2021. Interviews focused on identifying partner roles in planning and testing implementation and evaluating communication among partners. Interviews were transcribed and analyzed in ATLAS.ti version 8.4.5. Analyses involved deductive and inductive approaches to identify key themes. RESULTS: Participants described both strengths and challenges to the collaborative approach within each of three core themes: building relationships in the time of COVID-19; uplifting existing community leadership; and commitment of the academic partners and community-based organizations to conduct partnership activities in Spanish. CONCLUSION: Community-academic partnerships that invest in strong relationships, community leadership, and a commitment to the community's preferred language offer a promising approach to addressing COVID-19 testing barriers. Findings provide direction for future research on how community members and academic partners can come together to inform strategies to continue addressing the COVID-19 pandemic.

Bridging the Gap: Addressing Immigrant Health Through Community-initiated Screening Events.

BACKGROUND: In areas of new-immigrant population growth, medical and social infrastructure may be lagging behind the needs of those who do not identify with the majority culture or language. Subsequently, information regarding this population's health status and access to care is limited. Montana's Hispanic population is one such group. Despite its low total population, the state has experienced unprecedented growth in the number of Spanish-speaking individuals and families over the last decade. OBJECTIVES: We utilized a community based participatory research framework to emphasize equal partnership between lay community members and researchers to ensure adherence to community priorities and strengthen trust between the two parties allowing for future collaboration. Based on community request, we designed four health screening events to provide needed health prevention services to the Hispanic community. METHODS: Through collaboration with a Community Advisory Board, we created four health screening events to provide basic primary care services, including height and weight, blood pressure, diabetes, and mental health screenings. We partnered with a team of dental hygienists to provide oral preventive health. We conducted a cost-effectiveness analysis, comparing our approach to traditional health services. Study variables were analyzed using analysis of variance to examine differences in health outcomes between health screening events. RESULTS: We screened 140 persons and found that 85.7% lacked health insurance and 80.7% lacked a usual source of care. We also found overweight and obesity in 47.1% and 27.1%, respectively, and hypertension in 63.6%. Services provided by the health screening events were up to $239 less expensive than comparable services provided at local health centers. CONCLUSIONS: Working directly with the community, we designed and implemented health prevention events which served to meet a growing need and to identify and address health concerns among the Hispanic immigrant community.

Evaluating the Impact and Effectiveness of Flint's Community Ethics Review Board (CBOP-CERB): A Pilot Study.

In recognition of the importance of evaluation for funding, research, and quality improvement, a longstanding Community Advisory Board in Flint Michigan embarked on a process to evaluate their impact. The Community-Based Organization Partners (CBOP)-Community Ethics Review Board (CERB) engaged a research team composed of an academic researcher (Solomon Cargill) and a community partner (Spencer) to obtain funding, design and implement an evaluation of the CBOP-CERB. This evaluation study yielded two evaluations of the CBOP-CERB, one with researchers who had engaged with the CBOP-CERB and the other with Flint area community residents. The results of these two evaluations can serve to show other Community Advisory Boards how to establish and expand their impact, establish their worth for future funding, and how to articulate, evaluate, and achieve their goals.

Weaving community-based participatory research and co-design to improve opioid use treatments and services for youth, caregivers, and service providers.

Integrating the voices of service users and providers in the design and delivery of health services increases the acceptability, relevance, and effectiveness of services. Such efforts are particularly important for youth opioid use treatments and services, which have failed to consider the unique needs of youth and families. Applying community-based participatory research (CBPR) and co-design can facilitate this process by contextualizing service user experiences at individual and community levels and supporting the collaborative design of innovative solutions for improving care. However, few studies demonstrate how to effectively integrate these methods and engage underserved populations in co-design. As such, this manuscript describes how our team wove CBPR and co-design methods to develop solutions for improving youth opioid use treatments and services in Canada. As per CBPR methods, national, provincial, and community partnerships were established to inform and support the project's activities. These partnerships were integral for recruiting service users (i.e., youth and caregivers) and service providers to co-design prototypes and support local testing and implementation. Co-design methods enabled understanding of the needs and experiences of youth, caregivers, and service providers, resulting in meaningful community-specific innovations. We used several engagement methods during the co-design process, including regular working group meetings, small group discussions, individual interviews and consultations, and feedback grids. Challenges involved the time commitment and resources needed for co-design, which were exacerbated by the COVID-19 pandemic and limited our ability to engage a diverse sample of youth and caregivers in the process. Strengths of the study included youth and caregiver involvement in the co-design process, which centered around their lived experiences; the therapeutic aspect of the process for participants; and the development of innovations that were accepted by design partners.

Perceptions of abused Chinese women on community-based participatory approach programme in addressing their needs.

BACKGROUND: The community-based participatory approach (CBPA) has gained increasing recognition worldwide for enhancing the effectiveness of intervention. It is relatively new in Chinese societies and participants' perceptions are underexplored. This study aims to explore abused Chinese women's perceptions on the CBPA programme in addressing their needs. METHODS: A total of 11 abused Chinese women were recruited for a focus group and individual interviews. A semi-structured interview guide was used. All interviews were audio-recorded and data were transcribed verbatim. Conventional content analysis was used for analysis. RESULTS: Four themes were identified regarding the women's perceptions and experiences of the community-based participatory approach programme: (1) Women's perceived acceptability of the CBPA programme; (2) Women's perceived usefulness of the CBPA programme; (3) Women's perceived feasibility of the CBPA programme; and (4) Empowering the women through participating in CBPA. CONCLUSIONS: Abused Chinese women had high perceived acceptance and positive experiences towards the community-based participatory approach. Women benefited from their robust participation throughout the process. The findings confirm the potential of using the community-based participatory approach in designing interventions for future programme planning and intervention to address the needs of abused Chinese women.

Exploring community behaviours and stakeholder challenges in engaging communities with dengue prevention behaviour in Malaysia: implementation research for a qualitative study with a community-based participatory research design.

OBJECTIVES: To use a community-based participatory research (CBPR) design to explore local community behaviours and stakeholders' challenges in engaging communities in dengue prevention behaviours in Hulu Langat, Selangor, Malaysia. DESIGN: This CBPR design in implementation comprised in-depth interviews (IDIs) and focus group discussions (FGDs). Themes were identified from the data with inductive and deductive thematic analysis. SETTING: FGDs were conducted in local community areas and IDIs were conducted in the local authority (LA) office and the Hulu Langat district health office. PARTICIPANTS: All FGD and IDI participants consented to the study, and included health authorities (n=4), LAs (n=7), community leader (n=1), faith leader (n=1), patients diagnosed with dengue (IDIs, n=2) and permanent residents of Hulu Langat who had been exposed to dengue infectious disease (FGDs, n=27). RESULTS: The main themes were categorised into community behaviour and stakeholder challenges. The community behaviour-related themes were awareness of dengue disease and Aedes mosquitoes, perception of risk and severity, and involvement of authorities. The themes related to stakeholder challenges were resource constraints and capacity issues, jurisdictional constraints and coordination, and educational dissemination and vandalism. CONCLUSIONS: The actions of the authorities shape community and stakeholder behaviours. Effective communication, including clear and aesthetically pleasing messages, motivates individuals to take appropriate actions. It is crucial for the authorities to engage in inclusive communication and consider diverse perspectives, such as those of residents and individuals exposed to dengue infection. Authorities that provide accurate and unbiased information foster transparency and enable informed decision-making by all stakeholders.

"I Think Peer Support Helps to Demystify People Who Have Mental Health Issues and Helps to Remove That Stigma": Exploring the Defining Characteristics and Related Challenges of Youth Peer Support Through Participatory Research.

Despite the emerging body of literature on the benefits of youth peer support, there is also evidence that peer support can have unintended negative impacts on peers themselves. It is important to explore what aspects of the peer role contribute to these difficulties in order to mitigate risks. This paper uses a participatory approach to examine the unique attributes of youth peer practice and the related challenges. We conducted semi-structured interviews and focus groups with both peer and non-peer staff from a community-based youth mental health program that provides peer support services (N = 29). Thematic analyses were completed using QSR NVivo. Analyses capture the defining features and related challenges of the peer support role (self-disclosure, boundaries, role confusion and dynamic recovery), and risk factors that affect peers (stigma, exposure to harm and burnout). This paper contributes to the literature on peer support as well as youth participatory evaluation. The findings will be useful to support the development of improved organizational contexts for peer practice and more effective peer support programming.

The Báa nnilah Program: Results of a Chronic-Illness Self-Management Cluster Randomized Trial with the Apsáalooke Nation.

Indigenous people in Montana are disproportionately affected by chronic illness (CI), a legacy of settler colonialism. Existing programs addressing CI self-management are not appropriate because they are not consonant with Indigenous cultures in general and the Apsáalooke culture specifically. A research partnership between the Apsáalooke (Crow Nation) non-profit organization Messengers for Health and Montana State University co-developed, implemented, and evaluated a CI self-management program for community members. This article examines qualitative and quantitative program impacts using a pragmatic cluster randomized clinical trial design with intervention and waitlist control arms. The quantitative and qualitative data resulted in different stories on the impact of the Báa nnilah program. Neither of the quantitative hypotheses were supported with one exception. The qualitative data showed substantial positive outcomes across multiple areas. We examine why the data sets led to two very different stories, and provide study strengths and limitations, recommendations, and future directions.

The Chickahominy T.R.U.T.H. (Trust, Research, Understand, Teach, and Heal) Project-A Tribal Community-Academic Partnership for Understanding the Impact of Structural Factors on Perceived Cancer Risk in Rural Virginia.

In 2022, the Virginia Chickahominy Indian Tribe partnered with Virginia Commonwealth University Massey Comprehensive Cancer Center to investigate concerns about a potential cancer cluster near a local landfill. While investigating cancer clusters is complex due to long latency and multifactorial causes, the community's concerns about structural factors driving cancer risk warrant exploration. Thus, the Chickahominy T.R.U.T.H. (Trust, Research, Understand, Teach, and Heal) Project was created as a community-academic partnership to (1) identify structural factors and barriers associated with perceived cancer risk and care; (2) assess cancer knowledge, care access gaps, and perceived risks, including testing private and community water sources; (3) develop and deploy culturally tailored cancer education and resource navigation, including groundwater safety education, policies, and remediation. We will conduct 150 in-person interviews and water tests among residents within a four-mile radius of the landfill, and deploy 1000 structured questionnaires among Charles City County residents. In this paper, we provide an overview of the ongoing project design, development, and progress in support of the project's objectives. This collaborative investigation aims to address cancer health disparities, enhance research and health policy advocacy, and honor the sacred knowledge of an underserved community, laying the groundwork for a long-term partnership to guide future research questions.