BACKGROUND:Community-based exercise programs can help cancer survivors increase physical activity (PA) but sustaining this behavior is challenging. OBJECTIVE:Utilize a research-practice partnership framework to explore perceptions of implementing evidence-informed intervention strategies to support PA maintenance and engaging in the partnership. METHODS:Professionals (n = 7) who were involved with the delivery of one of four community-based exercise programs for cancer survivors participated in semi-structured interviews. Audio recordings were transcribed, data were coded using an inductive approach and thematically analyzed. RESULTS:Themes were the perceived value of maintaining PA for cancer survivors, a need for program adaptations and funding to sustain intervention strategies, and the importance of clear communication to foster a respectful collaboration. CONCLUSIONS:Findings will contribute to a study an adaptive PA maintenance intervention and can be applied to future research-practice partnerships in exercise oncology to help advance our understanding of how to implement and provide support for PA maintenance.
BACKGROUND:Western and biomedically oriented mental health interventions are often influenced by colonial frameworks, emphasizing individual deficits and overlooking cultural and community dimensions of care. OBJECTIVE:The NunatuKavut Community Council partnered with community-based researchers to strengthen culturally grounded wellness services and programs. METHODS:The NunatuKavut Mental Wellness Initiative, a community-based participatory research project, explored and promoted mental wellness among NunatuKavut Inuit. Guided by Inuit storytelling, we conducted sharing circles and, during the COVID-19 pandemic, an electronic survey. LESSONS LEARNED:A grassroots community-based participatory research approach allowed adaptation during COVID-19 while maintaining storytelling as a central method. Three key lessons emerged: 1) flexibility is essential in response to unexpected events, 2) adapting methods ensures engagement without overburdening participants, and 3) meaningful community involvement is central to program relevance. CONCLUSIONS:Despite challenges, Inuit-led, culturally grounded methods supported wellness promotion. These reflections may serve as a guide for others in adapting community-based participatory research projects to changing contexts.
This report examines the application of the data placemat method for disseminating research results, drawing on insights from two case studies working with immigrant and refugee groups. Additionally, it provides practical recommendations for researchers considering adopting this approach. This method can help researchers organize data in a coherent and accessible manner, providing participants with a succinct summary of results. It provides a means to validate research findings by incorporating perspectives from study participants and addressing potential ambiguities that may arise during initial data analysis. Most important, it could foster robust, lasting relationships with immigrant and minority groups.
Indigenous Community Research Partnerships is an open-access online training resource. It supports researchers and others in academic and institutional research settings to engage in learning about ethical and equitable research partnerships that respect and honor Indigenous priorities and benefits in research. Our interdisciplinary team of Indigenous and non-Indigenous researchers, with the support and encouragement of community partners, have developed the training resource to promote community-centered and -driven research approaches through all aspects of the research lifecycle. A survey of learners who have used the training resource perceive it as a positive and helpful resource. We are working to obtain support to engage in a fulsome evaluation of the training resource by and with Indigenous partners. We propose the training resource has potential to complement initiatives that advance Indigenous self-determination and research sovereignty.
BACKGROUND:Massachusetts General Hospital and the Federation for Children with Special Needs staff partnered to conduct the Supporting Parents Raising Kids trial. Supporting Parents Raising Kids compares a mind body intervention, stress management and relaxation training (SMART) learning and attentional disabilities (LAD), and a comparison health promotion intervention, Health Enhancement Program, for parents of children with LAD. OBJECTIVES:We describe how the partnership collaboratively adapted the proposed trial and treatments. METHODS:Massachusetts General Hospital and the Federation for Children with Special Needs staff contributed professional and lived experience expertise of families of children with LAD. This was done through collaborative leadership, shared learning about institutional differences, listening sessions, treatment manual review sessions, and a shared decisions process. RESULTS:Bridging cultural differences and engaging in a shared decision-making process resulted in trial design and treatment adaptations that resulted in a successful collaboration. CONCLUSIONS:Co-creation of a study requires commitment and partnership. Collaboratively developed trial improvements will strengthen community-based implementation of an open pilot trial and subsequent full trial.
BACKGROUND:Developing a Dementia Friendly city involves cultivating a dynamic, cooperative community where individuals with dementia and their caregivers are valued and fully supported. In Flagstaff, Arizona, a culturally diverse mountain college town, this initiative seeks to address inequities in dementia care for underserved populations. OBJECTIVES:The primary goal was to establish the Northern Arizona Dementia Friendly Community Council as a community-driven response to the rising public health challenges posed by dementia. METHODS:Guided by community-based participatory research principles and the Dementia Friendly America framework, we employed an iterative approach to assess community needs, engage diverse sectors, and drive the Dementia Friendly America application. LESSONS LEARNED:Key lessons include the importance of shared leadership, inclusive engagement, and distributed decision-making, along with navigating limited funding, careful resource allocation, and steady volunteer participation. CONCLUSIONS:Flagstaff's experience demonstrates that collaborative partnerships are essential for creating inclusive environments that support individuals with dementia and their caregivers.
BACKGROUND:The growing body of evidence showing type 2 diabetes (T2D) as a potential risk factor for certain cancers supports the need to make cancer education a component of diabetes care efforts. This need is especially important for Indigenous populations who experience disproportionate high rates of T2D. PURPOSE AND OBJECTIVE:The purpose of this article is to describe the development process of the health education curriculum and methods used to pilot the curriculum. The primary objective of the Ööqalat' Qa'tsit Yesni (Living a Strong Life) Curriculum is to increase participant knowledge of cancer and T2D, including recommended prevention, management, and early-\ detection practices. METHODS:Guided by community-based participatory research principles and the Community Health Workers Praxis and Patient Health Behavior Framework, a tribal-university workgroup steered each stage of the project, including curriculum development, recruitment, evaluation strategies and dissemination plans. A purposeful sampling strategy will be used to recruit participants. Inclusion criteria include: having diagnosed T2D or pre-diabetes, and males and females between the ages of 18 to 75 years. A traditional pretest-post-test design will be used to assess participant knowledge. Results will be described in a future publication. CONCLUSIONS:The Ööqalat' Qa'tsit Yesni project is driven by a community-based participatory research tribal-university partnership. This collaborative design process resulted in a health education curriculum, which could contribute to community-engaged health promotion efforts in Indigenous communities.
Asthma is a leading cause of chronic illness and school absenteeism in the United States and asthma-related health inequities persist. Innovative cross-sector interventions are needed to address inequities in pediatric asthma, yet few exist. This article describes a regional pediatric asthma program that uses an integrated case management model of care. The program is innovative in that it provides cost effective outreach, integration across providers and systems, and access to care. We explore the unique history, successes, and experiences in addressing equity and a reduction of pediatric asthma hospitalizations and deaths in eastern North Carolina.
BACKGROUND:Academic Health Departments (AHDs) are the mutually beneficial relationship between the study and practice of public health. Few studies have evaluated both the necessary infrastructure and how to best implement an AHD. OBJECTIVE:This study evaluated the St. Louis AHD in its first 3 years of development, using both the using the Coalition Effectiveness Inventory (CEI: infrastructure) and Collaboration Factors Inventory (CFI: implementation). METHODS:This was a prospective cross-sectional study evaluating the formal initiation of an AHD between two local health departments and an accredited school of public health. Surveys were electronically distributed to staff, faculty and students at each of the three sites. The main outcome measures included Level of Engagement, CFI and CEI. RESULTS:There was significantly more collaboration after implementation of the AHD (30% vs. 16%; P = 0.01). The 63 participants who completed the CEI Time 1 (M = 2.01) were compared to the 53 participants who completed the CEI Time 2 (M = 2.15) and there was no significant difference in composite CEI scores, t (113.988) = -1.10, p = 0.28. One CEI subscale, broad-based-involvement, was found to be significantly higher in Time 2, t(113.654) = -2.22, p = 0.05. The 63 participants who completed the CFI Time 1 (M = 3.57) were compared to the 53 participants who completed the CFI Time 2 (M = 3.27). There was a significant decrease in the composite CFI score, t (113.766) = 2.79, p = 0.05. CONCLUSIONS:AHD development is strengthened through leadership and formalized organizational infrastructure.
BACKGROUND:Participatory action research (PAR) shifts power to communities as decision-makers in research. Community health workers (CHWs) are valuable partners for implementing PAR. OBJECTIVES:Using the community engagement continuum, this paper describes the PAR approach used by a team to conduct a study with CHWs in California. We present lessons learned for meaningfully including CHWs in interdisciplinary research teams. METHODS:A collective of CHW and university researchers attended reflection sessions to describe the four phases of the research project, classify steps across the community engagement continuum, and identify lessons learned for elevating CHW voices through research. LESSONS LEARNED:To enhance CHW participation, research training can promote interprofessional reciprocity. Teams can identify deliverables that create value for academic and community stakeholders. CONCLUSIONS:This partnership demonstrated a strengths-based approach, where CHWs shared expertise in hosting community conversations, while academics added methodological rigor. The process can guide future CHW-university teams.
BACKGROUND:Air pollution regulations have historically treated odors as a public nuisance. Participatory, or citizen science, can provide important data through systematic, mobile application-assisted odor reporting. OBJECTIVES:This study leverages participatory public health science using the Smell MyCity app to investigate resident-reported odors and their association with census tract health outcomes in Louisville, Kentucky. METHODS:We analyzed 6,868 odor reports from 2018 to 2024 to identify census tracts where industrial and chemical odor reports cluster. Disease prevalences from the Centers for Disease Control and Prevention's PLACES data were compared between these tracts and the entire county. RESULTS:Results suggest associations between frequent odor reporting areas and increased health risks, highlighting the public health significance of environmental odors needing further investigation, and the importance of community-driven data collection in this field of study. CONCLUSIONS:This community-driven reporting initiative may be a useful addition to health research in areas with high industrial emission odor.
BACKGROUND:Oral health disparities disproportionately affect low-income populations, contributing to systemic health issues. Limited access to affordable dental care often results in untreated dental conditions, which can impair overall health and economic stability. OBJECTIVES:This study explored the feasibility of conducting dental screenings in community settings and supporting individuals in establishing a dental home. METHODS:The study was implemented across two sites, a food pantry (n = 64) and a free medical clinic (n = 63), serving socioeconomically disadvantaged populations. Participants were randomized into intervention (n = 59) and control groups (n = 67). Follow-up assessments were conducted one month post-intervention to evaluate dental appointment adherence and identify barriers to care. RESULTS:Screening in a food pantry or a free medical clinic is feasible. However, no significant difference was found in dental appointment follow-through at the one-month time-frame, χ2(1) = 0.43, p = 0.512, 1 - β = 0.07, likely due to systemic delays in accessing Medicaid-accepting providers. CONCLUSIONS:While community-based dental screenings are viable, systemic challenges hinder timely access to care. Future outreach efforts should account for the extended time required to establish a dental home and consider multimonth follow-ups. Innovative, community-engaged strategies-such as mobile dental units and streamlined referral systems-may enhance access and continuity of care for underserved populations.
BACKGROUND:Culturally adapting evidence-based programs may increase effectiveness, but decreases in fidelity to the original intervention are possible. OBJECTIVE:We describe the process and lessons learned from the adaptation of an evidence-based intervention, the Savvy Caregiver Program with a Native Hawaiian Community Action Board. RESULTS:We present three examples: retaining an existing activity, revising a core concept as a hybrid with a Hawaiian value/English term, and adapting a component of the curriculum with cultural foods. CONCLUSIONS:We suggest researchers work with community to: articulate core components in evidence-based interventions, explicitly; adapt activities and content to include cultural practices and norms; engage in iterative adaptation processes to support cohort differences; emphasize the importance of an inclusive approach to cultural identity; consider potential benefits of culturally grounded interventions; and describe and report the processes used in cultural adaptation.
BACKGROUND:While research advisory boards are common in community-based research, there are challenges with forming a board on sensitive topics and among communities who are less often engaged in research such as youth football organizations. OBJECTIVES:We share our processes for forming a national board, challenges associated with engaging some football community members, and feedback from our board members. METHODS:Board members were recruited with a multidisciplinary team of youth football organization employees. Researchers compared demographic characteristics of interested individuals who joined the board to those who did not. LESSONS LEARNED:Board members were different in several ways to those who did not participate. Additionally, board members experienced minimal harm from participating in discussions on sensitive topics. CONCLUSIONS:Although several interested individuals joined the board, more than one-half of the interested individuals did not. It is important for researchers to make intentional efforts to engage underrepresented individuals and ensure the research is beneficial to all community members.
Background: An estimated 1.7% to 4% of people in the United States are born intersex, or with congenital variations that transcend binary sex. Historically, Western medical protocols have advocated for the 'correction' of intersex variations through early surgical intervention, a practice opposed by the majority of intersex-led organizations. Stakeholder voices remain under-represented in research. Objectives: This study aimed to explore the experiences of intersex young adults participating in health research, with the goal of gathering recommendations to improve intersexaffirming research practices. Methods: In collaboration with interACT: Advocates for Intersex Youth, a leading intersex rights organization, we conducted four focus groups between January and May 2022 with 11 intersex young adults. Participants were recruited via convenience sampling through interACT's mail listservs and purposively sampled for diversity in age, geographic location, race and ethnicity, and gender identity. Thematic analysis was used to analyze focus group transcripts. Results: Three central subthemes emerged regarding participants' problems with intersex health research: dehumanization and objectification, stigmatizing language, and under-representation in research. Four subthemes emerged in terms of recommendations for intersex-affirming research: using community-based research approaches; focusing on strengths rather than pathology; conducting translational research that improves health care services; and prioritizing respondent experiences in study design. Conclusions: This study emphasizes the negative experiences of intersex individuals with non-affirming research practices and underscores the need for more ethical, participatory, and humanizing research approaches. By centering intersex stakeholders, future research can better support the autonomy, wellbeing, and health equity of intersex communities.
BACKGROUND:Americans in a mental health or substance abuse crisis who call 911 for assistance are at increased risk for police violence. With the growing recognition that police are not trained behavioral health (BH) workers, cities across the country are searching for alternatives models of response to these 911 calls. OBJECTIVES:To 1) describe community perceptions of 911 response to BH crisis calls, 2) explore community preferences for non-police models of response, and 3) engage a community advisory board in all study activities. METHODS:Using a community-based participatory research approach, during 2023 in Columbus, Ohio we conducted 30 semi-structured interviews that were audio recorded, transcribed, and analyzed via qualitative methods. RESULTS:Four key themes emerged: 1) variation in responding officer demeanor across calls within the same neighborhood and even to the same address: "a different cop can make all the difference"; 2) a pervasive reluctance to call the police during BH crises; 3) need for increased training in BH disorders and de-escalation; and 4) strong support for a non-police response program-"medics for mental health." CONCLUSIONS:As one of the first studies to explore community member perspectives on this issue, interviewees shared a preference for a non-police response program and made specific recommendations for its structure. Although non-police response models have proliferated across the country, there is a need to engage the community in model development and impact studies using the methods of community-based participatory research.
BACKGROUND:New York City (NYC) Cancer Outreach Network in Neighborhoods for Equity and Community Translation (CONNECT) aims to address determinants of cancer screening and access disparities in low-income NYC neighborhoods with high cancer burden. OBJECTIVES:NYC CONNECT community partners formed neighborhood action councils (NACs) and engaged in mixed-method formative research and an iterative consensus-building process to co-identify structural and social determinants of cancer screening. The NACs co-developed with health and academic partners community-level strategies to address structural determinants of health. The objective of this manuscript is to describe participatory processes to engage and support community partners in low-income and high poverty communities and the evaluation of their functioning within the context of a community-academic research partnership. METHODS:NYC CONNECT partnership development is informed by trauma-informed community building and community-based participatory research principles. Our mixed-methods partnership evaluation included surveys, qualitative interviews, and speaking time in meetings as a proxy for engagement. LESSONS LEARNED:Trauma-informed community building and community-based participatory research informed co-learning and consensus-building activities among the NACs. Identifying and prioritizing structural and social determinants of health strategies was a non-linear, iterative process that required multiple interactive activities (e.g., asset mapping, impact to effort matrix, and voting). CONCLUSION:Community engagement is a dynamic process that requires adapting to community partners' goals and sharing decision-making power.
