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Limited research has examined the mental health of individuals experiencing homelessness in Hawai'i, which bears the nation's second highest homelessness rate. Mental health, substance use, treatment need, and health data were collected from 162 unhoused individuals in Hawai'i County by visiting community locations where they congregate (e.g., beaches, vacant buildings). 77% of participants were Native Hawaiian/Pacific Islander (NH/PI) with participants demonstrating severe rates of mental and substance use disorders including 57% experiencing major depressive disorder (MDD), 56% experiencing generalized anxiety disorder (GAD), and 64%, 74%, and 12% experiencing alcohol, methamphetamine, and opioid use disorders, respectively-heightening overdose risk. Treatment need was high (62%) but health was poor (85% reporting fair/poor health), with MDD and GAD predicting reduced general health (p

Rural surveys tend to oversample easy to reach populations, which can misrepresent community health needs. To achieve baseline data reflective of the communities served by the high obesity program (HOP), an innovative evaluation plan was created to prioritize equity and reflect the whole community. Principles of Community-Based Participatory Research (CBPR) were used to guide instrument development, research protocols, and data collection. A random sample of addresses created with United States Postal Service records provided a representative list of addresses in three HOP counties in Louisiana. Local data collectors were recruited to go door to door at the selected addresses to collect in-person surveys (N = 682; response rate of 84%). Over a quarter of participants reported using the charitable food system and walking for transportation at least weekly. Collecting door to door data in rural communities presents unique challenges, including abandoned properties, inaccurate address records, loose dogs, and at times, racial tensions and houses far removed from public roads. Lessons learned include the importance of local knowledge, adapting protocols to fit local conditions, and community awareness of the survey. Health practitioners need confidence when they are making data-based decisions about interventions, and one way to provide this confidence is to collect data from a true cross-section of the community. With a plan and in partnership with community members, a probability sample is feasible to collect in rural communities.

To describe a process of meaningful Aboriginal community engagement that repositioned and valued community members' knowledge(s) and lived experiences while strengthening relationships, research processes and outcomes.Aboriginal Australians have the oldest continuous culture in the world, yet due to effects of colonisation, experience some of the world's poorest health outcomes. The AKction [Aboriginal Kidney Care Together - Improving Outcomes Now] project brought together Aboriginal people with lived experience of kidney disease, clinicians and researchers to improve kidney care.Using Aboriginal methodologies of Ganma and Dadirri within community-based participatory action research (cb-PAR), a core advisory group of Aboriginal people with lived experiences of kidney disease worked closely with clinicians and researchers.Three community consultation workshops that deeply valued Aboriginal knowledge(s) were co-created. Community members formed a reference group, established partnerships and influenced health research, policy and service provision. Non-Indigenous researchers engaged in critical self-reflection and levelling of Western-Aboriginal and clinician-consumer power imbalances.Deeply respectful community engagement is possible through co-creation and cb-PAR. It results in multiple positive impacts and beneficial relationships between community members, clinicians and academics.Meaningful consultation with Aboriginal communities guides culturally safe research processes, health policy and service delivery.

The Food Resource Equity and Sustainability for Health (“FRESH”) study is an Indigenous-led intervention to increase vegetable and fruit intake among Native American children. As part of this study, we developed a hybrid (online and in-person) food sovereignty and nutrition education curriculum for the parents of these children. This 16-week curriculum was developed to promote household- and community-level healthy eating and food sovereignty practices to parents of preschool-aged children residing in Osage Nation, Oklahoma. A total of 81 parent/caregivers participated in the curriculum component of the FRESH study, with a median age of 34 years (range: 23–54 years). Most study participants were female (88.9%) and less than half (45.7%) had an annual household income of more than US$50,000. Most were married or had a significant other (76.5%) and worked full-time (65.4%). The median total number of children in the home

Community involvement is essential for an all-of-society approach to disaster risk reduction. This requires innovative consultation methods, particularly with youth and during pandemic restrictions. This article outlines methods used for a Photovoice project where we brought together student co-researchers from multiple levels (high school, undergraduate, and graduate health sciences) to explore the topic of youth engagement in disaster risk reduction. Over a two-year period, our team used Photovoice as an arts-based participatory method to collaborate with members of our EnRiCH Youth Research Team. We adapted the protocol to continue our project during the COVID-19 pandemic and presented our work in a Photovoice exhibition using Instagram. This article was written from the perspectives of high school and university students on the project. Our hybrid Photovoice protocol facilitated participation through the pandemic, including a virtual presentation at an international conference and online consultation with the Canadian Red Cross.

Studies have highlighted common challenges and barriers to patient engagement in research, but most were based on patient partners' or academic researchers' experiences. A better understanding of how both groups differentially experience their partnership could help identify strategies to improve collaboration in patient engagement research.This study aimed to describe and compare patient partners' and academic researchers' experiences in patient engagement research.Based on a participatory approach, a descriptive qualitative study was conducted with patient partners and academic researchers who are involved in the PriCARE research programme in primary health care to examine their experience of patient engagement. Individual semi-structured interviews with patient partners (n = 7) and academic researchers (n = 15) were conducted. Academic researchers' interview verbatims, deidentified patient partners' summaries of their interviews and summaries of meetings with patient partners were analysed using inductive thematic analysis in collaboration with patient partners.Patient partners and academic researchers' experiences with patient engagement are captured within four themes: (1) evolving relationships; (2) creating an environment that fosters patient engagement; (3) striking a balance; and (4) impact and value of patient engagement. Evolving relationships refers to how partnerships grew and improved over time with an acceptance of tensions and willingness to move beyond them, two-way communication and leadership of key team members. Creating an environment that fosters patient engagement requires appropriate structural support, such as clear descriptions of patient partner roles; adequate training for all team members; institutional guidance on patient engagement; regular and appropriate translation services; and financial assistance. For patient partners and academic researchers, striking a balance referred to the challenge of reconciling patient partners' interests and established research practices. Finally, both groups recognized the value and positive impact of patient engagement in the programme in terms of improving the relevance of research and the applicability of results. While patient partners and academic researchers identified similar challenges and strategies, their experiences of patient engagement differed according to their own backgrounds, motives and expectations.Both patient partners and academic researchers highlighted the importance of finding a balance between providing structure or guidelines for patient engagement, while allowing for flexibility along the way.Patient partners from the PriCARE research programme were involved in the following aspects of the current study: (1) development of the research objectives; (2) planning of the research design; (3) development and validation of data collection tools (i.e., interview guides); (4) production of data (i.e., acted as interviewees); (5) validation of data analysis tools (code book); (6) analysis of qualitative data; and (7) drafting of the manuscript and contributing to other knowledge translation activities, such as conference presentations and the creation of a short animated video.

While implementation and dissemination of research is a rapidly growing area, critical questions remain about how, why, and under what conditions everyday people integrate and utilize research evidence. This mixed-methods study investigates how participants of Promoting Community Conversations About Research to End Suicide (PC CARES) make sense of and use research evidence about suicide prevention in their own lives. PC CARES is a health intervention addressing the need for culturally responsive suicide prevention practices in rural Alaska through a series of community Learning Circles. We analyzed PC CARES transcripts and surveys for 376 participants aged 15+ across 10 Northwest Alaska Native villages. Quantitative analysis showed significant correlations between five utilization of research evidence (URE) factors and participants' intent to use research evidence from PC CARES Learning Circles. Key qualitative themes from Learning Circle transcripts expanded upon these URE constructs and included navigating discordant information, centering relationships, and Indigenous worldviews as key to interpreting research evidence. We integrate and organize our findings to inform two domains from the Consolidated Framework for Research Implementation: (1) intervention characteristics and (2) characteristics of individuals, with emphasis on findings most relevant for community settings where self-determined, evidence-informed action is especially important for addressing health inequities.

In health promotion research, enthusiasm for patient and public involvement (PPI) is growing. However, a lack of conceptual clarity leads to ambiguities in participatory processes and purposes, and hampers efforts to achieve and evaluate PPI in research. This study provides an overview of its underlying reasons-or rationales-so as to better understand, guide and interpret PPI in research practice. We conducted a critical review to identify typologies of rationales for PPI. We re-categorized the different types of rationales from these typologies based on their content. We illustrated the resulting categories of rationales with examples from a case study on PPI in research on Lyme disease. Five categories of rationales for PPI were identified. The democratic rationale reflects the normative right of citizens to have a voice in research. The consumerist rationale refers to the economic right of stakeholders with interests to have a say. Rooted in social justice, the transformative rationale seeks to empower marginalized groups. The substantive rationale starts from epistemic considerations and aims to improve the quality of knowledge that research generates. The instrumental rationale is of pragmatic origin and refers to improved efficiency and effectiveness of the research. Our overview of categories of rationales can be used as a frame of reference for PPI in health promotion research. Exploring, stating explicitly and reflecting on the underlying reasons for PPI may help to define realistic purposes, select matching approaches and design appropriate evaluation studies. This might also contribute to the conceptualization of PPI.Enthusiasm for patient and public involvement in health promotion research is growing. However, it often remains unclear why this involvement is being organized. This lack of clarity makes it difficult to implement such participatory research and to evaluate its added value. We searched for reasons that were given for starting patient and public involvement in research. We found five different reasons. The first is the right of all citizens to have a say in research that affects them. The second is the right of individuals to demand the best research. The third is the desire to involve and empower marginalized groups. The fourth aims to improve the quality of the knowledge generated by the research. The fifth is to achieve more effective and efficient research. Together, these reasons may help researchers get more clarity about why patients or the public should be involved in their studies. This may in turn help to define realistic purposes, design a good participatory process, and conduct appropriate evaluations. All in all, using these five reasons as a frame of reference might lead to a better understanding of what good participatory research in health promotion should look like.

There is a growing emergence of Indigenous Food Sovereignty (IFS) initiatives across urban centers within many regions of Canada. Urban Indigenous communities are leading these efforts to revitalize Indigenous foods and agricultural practices while promoting food security and increasing Land-based connections within cities. However, the socio-ecological environments within these urban contexts affect IFS initiatives in unique ways which have not been previously explored. This study addresses these gaps by drawing on qualitative interviews with seven urban Indigenous people leading IFS initiatives within Grand River Territory (situated within southern Ontario, Canada). Applying community-based participatory methods, this research explored how place impacts IFS initiatives within urban environments. Thematic analysis generated two overarching thematic categories: Land access, and place-making practices, revealing a bi-directional, dynamic interaction between place and urban IFS initiatives. Relationships with landowners, control of land, and external factors determined how Land was accessed in urban environments. Place-making practices involved fostering relationships with Land, upholding responsibilities, and cultivating Land-based knowledges. Therefore, IFS initiatives are impacted by Land access, but also facilitate place-making for urban Indigenous Peoples. These findings demonstrate pathways towards Indigenous self-determination and IFS within urban contexts, which can be applicable to other urban Indigenous communities.

To address rural cancer disparities, the University of Wisconsin Carbone Cancer Center launched a rural cancer project through its Cancer Health Disparities Initiative (CHDI) in 2010. With support from the National Cancer Institute's (NCI) National Outreach Network, CHDI conducted an assessment of rural counties and partnered with Adams County to implement a collaborative cancer education project. Together CHDI and Adams County partners selected an evidence-based educational curriculum, Understanding Cancer, as a basis for local adaptation for use with rural Wisconsin communities. The new curriculum, titled Cancer Clear & Simple (CC&S), consists of three modules: (1) cancer basics, (2) cancer prevention, and (3) cancer screening. CC&S has also been culturally tailored for African American and Latino populations. The adaptation utilized community involvement throughout a multi-step process to ensure cultural appropriateness. The process included materials selection, translation, conceptual adaptation, visual adaptation, and validation with target audiences. All adaptations of the curriculum incorporate health literacy principles and is designed to build knowledge and improve health-related decision-making around lung, colorectal, skin, breast, cervical, and prostate cancer. Current efforts seek to (1) increase the evidence of CC&S's effectiveness through additional research, (2) expand its use by new audiences, and (3) adapt it into a web-based platform featuring a cancer prevention serious game.

HIV stigma in health care disrupts the care continuum and negatively affects health outcomes among people living with HIV. Few studies explore HIV stigma from the perspective of health care providers, which was the aim of this mixed-methods, community-based participatory research study. Guided by the Health Stigma Discrimination Framework, we conducted an online survey and focus group interviews with 88 and 18 participants. Data were mixed during interpretation and reporting results. Stigma was low overall and participants reported more stigma among their colleagues. The main drivers of stigma included lack of knowledge and fear. Workplace policies and culture were key stigma facilitators. Stigma manifested highest through the endorsement of stereotypes and in the use of unnecessary precautions when treating people with HIV. This study adds to our understanding of HIV stigma within health care settings, with implications for the development of multi-level interventions to reduce HIV stigma among health care professionals.

Community-based participatory research (CBPR) approaches to promoting justice focus on working from the ground up and giving a voice to marginalized communities regarding their concerns, potential solutions, and how to address social justice issues that matter to them. The pursuit of justice is often related to efforts to attain personal as well as collective well-being. In this paper, we illustrate three exemplars of community psychologists' efforts to promote justice. Within each case study, we discuss the social and community context and examine how the researchers built partnerships and solidarity, developed ways of doing, and approached challenges and solutions. First, we present an example to promote economic justice through an entrepreneurship initiative developed in collaboration with young Black youth with disabilities in the United States. The second case illustrates an effort to promote reproductive justice in collaboration with Roma women and girls in Spain. The third exemplar depicts the use of life stories as a method to raise the voices of displaced, marginalized indigenous women in Peru. Based on these three case studies, we present a synthesis model of social justice. We also discuss implications for future studies emphasizing the importance of engaging community participants in research meaningful ways, developing sustainable partnerships, and decolonizing research.

Photovoice has gained acceptance as a viable visual method to engage community members as partners in research. However, as methods associated with photovoice have developed and evolved over time, concerns have also been raised with regard to how this impacts the methodological underpinnings on which photovoice rests. The aim of this article is to explore the meaning of dialogue and action as methodologically pivotal for the relevance of photovoice as community-based participatory research; further, using an empirical case and narrative theory, we attempt to contribute to an understanding of the processes that facilitate the viability and relevance of photovoice. By unpacking the contributions of dialogue and action towards a participatory methodology, in this case photovoice, the authors illustrate and argue for aspects critical in photovoice. Drawing on these aspects provides an arena for storytelling and story making, which have not previously had an explicit part in photovoice.

Photovoice is a powerful way to generate youth reflection and social action for health promotion. While the literature offers numerous examples of photovoice studies involving youth, they are most often engaged in taking, dialoguing, and developing phototexts, but not always in the critical next stages of planning what to do with this data, in terms of analyzing and then planning change-related strategic actions. This article describes the ways in which an intergenerational environmental justice project, as part of a larger community-based participatory research program, engaged youth through all stages of a photovoice project. Latino and Asia Pacific Islander adults recruited their own and other youth to conduct a photovoice and air sample data collection, analysis, exhibition, and evaluation activity focused on addressing indoor environmental justice threats from volatile organic chemicals. We offer lessons learned and reflect on the role of intergenerational collaboration to support youth in applying a critical lens for analyzing photovoice data and advocacy for health in their communities. We conclude with implications for photovoice practice and research.

Since its introduction, photovoice has been implemented in numerous fields with a wide array of outcomes of interest, but has the method been implemented in a way that is consistent with its initial aims in mind? From Caroline Wang and Mary Ann Burris’s initial 1994 project, photovoice has demonstrated power to harness visual imagery and stories within a participatory empowerment process and established a new tool for the profession for understanding community members’ lived experience and needs, raising the critical consciousness of communities, and advocating for actions leading to social change. Based in Freirean philosophy, feminist theory, and documentary photography, photovoice engages community members to identify, represent, and change their community by means of photography, dialogue, and action. Public health can benefit when researchers and practitioners more carefully conceptualize the intended aims of each photovoice effort. The purpose of this article is to consider the varied applications of photovoice and propose a classification system that encapsulates its wide-ranging aims. Close examination of foundational literature and previous applications of photovoice suggest the following categories for framing the application of the method; specifically, photovoice for (a) photovention, (b) community assessment, (c) community capacity building, and (d) advocacy for change. Full implementations of photovoice have the capacity to illuminate complex real-world issues leading to advocacy for policy, systems, and environmental change. It is our hope that the proposed framing clarifies the language used to discuss photovoice and its outcomes, distinguishes its various uses and stated aims, and maximizes its impact in future applications.

When participants define and share their lives through photovoice, they can potentially become empowered as experts in their health needs. Images from photovoice exhibits confront gaps between what researchers and policy makers assume people need and what people show that they need. The exhibit is bridge to action across the socioecological spectrum and a way that photovoice studies have helped affect change at individual, interpersonal, community, institutional, and policy levels. However, for this nontraditional modality of research to be most effective in achieving its goals, substantial buy-in from participants, researchers, and policy makers is necessary. Despite the great potential of photovoice exhibits, difficulties in translating findings to social action, ethical quandaries related to participant privacy and representation, and not knowing the overall impact of exhibits on viewers can severely inhibit success. Consequently, we recommend four areas to consider for the future of exhibits: (1) understanding and measuring empowerment and change that happens for participants via photovoice exhibits, (2) considering innovative and new forms of exhibits and sharing information with the public, (3) documenting exhibit processes to produce lessons learned and guides for others, and (4) exploring the ethics and impact of exhibits on photovoice audiences.

Critical hope centres optimism and possibilities for change in the midst of struggles for social justice. It was a central tenet of early participatory pedagogy and HIV research. However, critical hope has been overlooked in contemporary HIV research that largely focuses on risk and biomedical interventions in ways that obscure collective agency and community strengths. We conducted a community-based study with transgender (trans) women of colour in Toronto, Canada to adapt an evidence-based HIV prevention intervention. Participants resisted a focus on HIV, instead calling researchers to centre journeys to self-love in contexts of social exclusion. In response, we piloted three arts-based, participatory methods generated with community collaborators: (i) affirmation cards sharing supportive messages with other trans women, (ii) hand-held mirrors for reflecting and sharing messages of self-acceptance and (iii) anatomical heart images to visualize coping strategies. Participants generated solidarity and community through shared stories of self-acceptance within contexts of pain, exclusion and loss. Narratives revealed locating agency and self-acceptance through community connectedness. Critical hope was a by-product of this participatory process, whereby participants shared personal and collective optimism. Participatory and arts-based methods that centre self-acceptance and solidarity can nurture resistance to pathologizing discourses in HIV research. Centring critical hope and participant-generated methodologies is a promising approach to transformative health promotion and intervention research. These methodological insights can be engaged in future participatory work with other marginalized groups facing dominant biomedical risk discourses. Critical hope holds potential as a participatory health promotion strategy for envisioning possibilities for sustainable change.Optimism and possibility for change in the midst of social justice struggles are central to critical hope and change-oriented research. The concept of critical hope guided community-based activism and research, including early in the HIV pandemic. Yet current HIV research largely focuses on individual risks and biomedical solutions, which may overlook critical hope and the important role of community connection in promoting wellbeing. Our community-based study with transgender (trans) women of colour in Toronto, Canada aimed to adapt an HIV prevention intervention. Participants challenged the HIV focus and invited the research team to instead focus on pathways to self-acceptance in larger contexts of social exclusion. In response, we developed three arts-based activities to pilot-test at three workshops: affirmation cards to write supportive messages to other trans women, hand-held mirrors to write messages of self-acceptance, and anatomical heart images to visualize coping strategies. Through these activities, participants shared stories of self-acceptance that occurred over time and through community connectedness, often in the face of exclusion and discrimination. Perspectives on personal and collective optimism, reflecting critical hope, were shared in the workshops. Participant-generated methodologies that offer opportunities to discuss critical hope can be promising approach to transformative health promotion and intervention research.

This study proposes an innovative use of a modified version of photovoice for cross‐national qualitative research that allows participants to express their ideas, experiences, and emotions about a topic through photographic language. We examine factors affecting social service providers' work on people experiencing homelessness in Europe. We highlight five advantages of using photovoice in cross‐national research: visual language, methodological flexibility, participatory data analysis, the bottom‐up process, and the promotion of social change. Moreover, we identify key stages of the process: writing a detailed protocol for the implementation and fidelity of the projects, using two levels of data analysis, and disseminating the results. This study provides lessons learned for others who may want to use photovoice in cross‐national research. info:eu-repo/semantics/publishedVersion

Objectives: This study was conducted to assess an intervention that was created by a community–academic partnership to address COVID-19 health inequities. We evaluated a community-engaged bidirectional pandemic crisis and emergency risk communication (CERC) framework with immigrant and refugee populations during the COVID-19 pandemic. Methods: A 17-year community-engaged research partnership adopted a CERC framework in March 2020 to address COVID-19 prevention, testing, and socioeconomic impacts with immigrant and refugee groups in southeast Minnesota. The partnership used bidirectional communication between communication leaders and their social networks to refine messages, leverage resources, and advise policy makers. We conducted a mixed-methods evaluation for intervention acceptability, feasibility, reach, adaptation, and sustainability through multisource data, including email communications, work group notes, semistructured interviews, and focus groups. Results: The intervention reached at least 39 000 people in 9 months. It was implemented as intended and perceived efficacy was high. Frequent communication between community and academic partners allowed the team to respond rapidly to concerns and facilitated connection of community members to resources. Framework implementation also led to systems and policy changes to meet the needs of immigrant and refugee populations. Conclusions: Community-engaged CERC is feasible and sustainable and can reduce COVID-19 disparities through shared creation and dissemination of public health messages, enhanced connection to existing resources, and incorporation of community perspectives in regional pandemic mitigation policies.

Practice-based research networks (PBRNs) have long sought to engage with communities and address questions relevant to multiple stakeholders and real-world primary care practice. Topic-generating processes that involve these stakeholders are crucial for identifying these questions. PBRNs often focus on certain populations or geographic areas. We are forming a new PBRN to address the health concerns and research interests of people in communities in Western Colorado.To engage with and determine the questions important to multiple stakeholders in communities in western Colorado, we conducted community meetings at which we used Photovoice followed by Nominal Group Technique in group discussions across the region. We then conducted a survey to develop a list of priority research topics.Multiple stakeholders were ready and eager to engage with us to form a PBRN. Across all communities, many of the topics that emerged were related to the social determinants of health. Mental health-specifically, lack of access to services and high suicide incidence-was the most important topic according to community members. This was consistent across groups of stakeholders and corroborated other community work such as Community Health Needs Assessments.Using participatory methods increased our stakeholder engagement and helped build strong community-academic partnerships for our PBRN-related research. Use of Photovoice allowed all participants to express their thoughts and ideas and led to a clear path forward for this new research network.

Resumen: Las estrategias, los programas y las acciones en salud han sido históricamente el resultado de prácticas institucionales con un componente participativo limitado. La acción institucional ha venido determinada sobre todo por el criterio de actores políticos y, en el mejor de los casos, por el criterio de profesionales de la salud. Nuevas formas de gobernanza para la equidad en salud abogan por la inclusión de la comunidad en el diseño de estrategias, programas y actividades en salud. Por ello, una preocupación creciente en el campo de la participación en salud es la medición de la calidad participativa de los nuevos diseños de prácticas institucionales. Este artículo tiene como objetivo desarrollar una propuesta operativa para diseñar, medir o describir el alcance en términos participativos de los procesos de planificación en salud. La propuesta elabora seis dimensiones para la medición y la evaluación del proceso participativo: inclusividad, flujo de información, calidad deliberativa, toma de decisiones, compromiso institucional y empoderamiento comunitario. Abstract: Health strategies, programs and activities have historically been the result of institutional practices with a limited participatory component. Traditionally, institutional action is mainly determined by the criteria of the political actors and, in the best of cases, by the criteria of healthcare professionals. New forms of governance for health equity advocate for the inclusion of the community in the design of strategies, programmes and activities in health. For this reason, a growing concern in the field of participation in health is the measurement of the participatory quality of new designs of institutional practices. This article aims to develop an operational proposal to design, measure or describe the scope in participatory terms of the health planning processes. The proposal elaborates six dimensions for the measurement and assessment of participatory process: inclusivity, information flow, deliberative quality, decision making, institutional commitment and community empowerment.

Early diagnosis and access to behavioral health services can improve the health outcomes for young children suffering from mental illness. Often, children and their families' behavioral health needs are not met due to a broken local system of care. Developing a deep understanding of the situation by exploring all stakeholders' needs across a community in conjunction with a comprehensive review of the existing scientific literature prepared one rural midwestern county to build a better local system of care. This study's unique aspects include visual mapping using art in focus groups and close collaboration between a public mental health board, academic faculty, student researchers, local behavioral health organizations, and schools. Major themes found about the existing barriers were dysfunctional patterns in families, lack of resources, reliance on the school system, and lack of access to healthcare professionals. Other communities can use this approach as a model for a local needs assessment.

There has been increasing adoption and implementation of virtual healthcare in recent years, especially with COVID-19 impacting the world. As a result, virtual care initiatives may not undergo stringent quality control processes to ensure that they are appropriate to their context and meet sector needs. The two objectives of this study were to identify virtual care initiatives for older adults currently in use in Victoria and virtual care challenges that could be prioritised for further investigation and scale-up and to understand why certain virtual care initiatives and challenges are prioritised over others for investigation and scale-up. Methods: This project used an Emerging Design approach. A survey of public health services in the state of Victoria in Australia was first carried out, followed by the co-production of research and healthcare priorities with key stakeholders in the areas of primary care, hospital care, consumer representation, research, and government. The survey was used to gather existing virtual care initiatives for older adults and any associated challenges. Co-production processes consisted of individual ratings of initiatives and group-based discussions to identify priority virtual care initiatives and challenges to be addressed for future scale-up. Stakeholders nominated their top three virtual initiatives following discussions. Results: Telehealth was nominated as the highest priority initiative type for scaling up, with virtual emergency department models of care nominated as the highest priority within this category. Remote monitoring was voted as a top priority for further investigations. The top virtual care challenge was data sharing across services and settings, and the user-friendliness of virtual care platforms was nominated as the top priority for further investigation. Conclusions: Stakeholders prioritised public health virtual care initiatives that are easy to adopt and address needs that are perceived to be more immediate (acute more so than chronic care). Virtual care initiatives that incorporate more technology and integrated elements are valued, but more information is needed to inform their potential scale-up.

At least 50% of chronic disease patients don't follow their care plans, leading to lower health outcomes and higher medical costs. Providing Patient Education Materials (PEMs) to individuals living with a disease can help to overcome these problems. PEMs are especially beneficial for people suffering from multisystemic and underrecognized diseases, such as rare diseases. Congenital disorders of glycosylation (CDG) are ultra-rare diseases, where a need was identified for PEMs in plain language that can clearly explain complex information. Community involvement in the design of PEMs is extremely important for diseases whose needs are underserved, such as rare diseases; however, attempts to involve lay and professional stakeholders are lacking. This paper presents a community-based participatory framework to co-create PEMs for CDG, that is transferable to other diseases. A literature review and questionnaire were performed, and only four articles describing the development of PEMS for rare diseases have been found, which demonstrates a lack of standardized approaches. The framework and PEMs were co-developed with CDG families and will be crucial in increasing health literacy and empowering families. We will close a gap in the creation of PEMs for CDG by delivering these resources in lay language in several languages. ispartof: Int J Environ Res Public Health vol:20 issue:2 pages:968- ispartof: location:Switzerland status: Published online

Funding Information: Dorinda da Silva acknowledge the funding from LA/P/0045/2020 (ALiCE), funded by national funds through FCT/MCTES (PIDDAC). Pedro Granjo was supported by CDG & Allies funding. Cláudia de Freitas acknowledges funding from the Foundation for Science and Technology-FCT under the Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR) (LA/P/0064/2020), the individual contract grant DL57/2016/CP1336/CT0001. Publisher Copyright: © 2023 by the authors. At least 50% of chronic disease patients don’t follow their care plans, leading to lower health outcomes and higher medical costs. Providing Patient Education Materials (PEMs) to individuals living with a disease can help to overcome these problems. PEMs are especially beneficial for people suffering from multisystemic and underrecognized diseases, such as rare diseases. Congenital disorders of glycosylation (CDG) are ultra-rare diseases, where a need was identified for PEMs in plain language that can clearly explain complex information. Community involvement in the design of PEMs is extremely important for diseases whose needs are underserved, such as rare diseases; however, attempts to involve lay and professional stakeholders are lacking. This paper presents a community-based participatory framework to co-create PEMs for CDG, that is transferable to other diseases. A literature review and questionnaire were performed, and only four articles describing the development of PEMS for rare diseases have been found, which demonstrates a lack of standardized approaches. The framework and PEMs were co-developed with CDG families and will be crucial in increasing health literacy and empowering families. We will close a gap in the creation of PEMs for CDG by delivering these resources in lay language in several languages. publishersversion published

Community-based participatory research is a growing approach, but often includes higher levels of community engagement in the research design and data collection stages than in the data interpretation stage. Involving study participants in this stage could further knowledge justice, science that aligns with and supports social justice agendas. This article reports on two community-based participatory environmental health surveys conducted between 2015 and 2019 in an industrial region near Marseille, France, and focuses specifically on our approach of organizing focus groups to directly involve residents and community stakeholders in the analysis and interpretation process. We found that, in these focus groups, residents triangulated across many different sources of information&mdash, study findings, local knowledge, and different types of expert knowledge&mdash, to reach conclusions about the health of their community and make recommendations for what should be done to improve community health outcomes. We conclude that involving residents in the data analysis and interpretation stage can promote epistemic justice and lead to final reports that are more useful to community stakeholders and decision-makers.

Refereed/Peer-reviewed Within the vast majority of qualitative health research involving Indigenous populations, Indigenous people have been marginalised from research conceptualisation and conduct. This reflects a lack of regard for Indigenous ways of knowing, being, and doing, has served to perpetuate deficit narratives of Indigenous peoples’ health and wellbeing, and contributes to failure in addressing inequities as a result of ongoing colonisation and institutionalised oppression and racism. There is a need to place Indigenous voices and ways of doing at the centre of research by working in intercultural partnership, bringing together Indigenous and Western knowledges. This paper explores how such an approach can be applied, demonstrating a reflective process of conceptualisation and conduct that brings together Indigenous ways of working with grounded theory with Aboriginal communities in Australia. Furthermore, it supported a non-Indigenous researcher to learn ways of working respectfully, guided by community protocols. A six-stage research process was developed, overseen by an Aboriginal Women’s Advisory Group. Research conceptualisation and conduct centred on three principles: bringing together Aboriginal ways of working with Western research methodology; using women’s own voices to develop a narrative of cardiovascular health and wellbeing; and ensuring that tangible outcomes were delivered to women and communities in the spirit of partnership and reciprocity. This approach, guided at all steps by Indigenous women, demonstrates a way of adapting qualitative Western methodology to ensure values and principles of ethical guidelines of conduct are upheld to unravel constructs of colonisation, redress past wrongdoing, and reverse deficit narratives.

Objective: The implications for health interventions of socioeconomic diversity among African Americans is not well-studied. Design: Our one-arm community-based participatory research study was des...

The COVID-19 pandemic required collaboration to address vaccine hesitancy in populations of color. A large not-for-profit health system collaborated with a philanthropic organization and a technology company, using principles of community-based participatory research, to develop an outreach program aimed at increasing access to COVID-19 vaccines in two geographically distinct locations.

Throughout COVID-19, health officials have relied on data visualizations to communicate urgent messages about the spread of the virus and preventative measures. Relatively few efforts have employed participatory engagement with communities who have experienced a disproportionate burden of COVID-19 illness to shape these communications. Sociologist W.E.B. Du Bois viewed data visualization as an approach to changing the way people think about themselves. This paper describes a community-engaged approach to data literacy skill-building with bilingual Latina learners in an adult English program in Northern California, Bay Area. The curriculum combines data visualization activities with language instruction and preventive health themes. Early work on COVID-19 in 2020–21 emphasized improving health knowledge and message interpretation but later shifted to a critical data literacy perspective, focusing on myth-busting, improving risk messaging in their own social networks, and supporting learners to see the power of their own experiences in data story-telling processes. This pedagogical approach, guided by Charles Brigg’s idea of communicative justice priorities, locates adult learners’ data visualization work as part of a broader effort to be included in the perspectives that shape knowledge production in today’s healthcare system. This approach can be used to examine disparities in information access in linguistically minoritized communities and guide future education interventions.

Chronic Lyme disease can manifest as a debilitating illness with symptoms that change over time. With its varied presentation, timeline variation, diagnostic difficulty, and lack of definitive treatment, clinical recognition of chronic Lyme disease remains controversial. At the same time, patients face challenges in finding a provider who is supportive and knowledgeable about diagnosing and treating Lyme. We examined the ways the medical system may have affected the lived experiences of chronic Lyme patients. In this article, we communicate the personal, health care, and community illness experiences of 14 women navigating the medical system with chronic Lyme disease through a qualitative community-based participatory research study using interviews and narrative reflection in a rural community setting. The women were interviewed by a researcher living with chronic Lyme disease and the transcripts were analyzed for themes. All participants described navigating multiple allopathic and nonallopathic care modalities to find satisfactory care. They struggled with physical and emotional burdens of chronic, nonlinear illness, as well as disbelief and discrimination by medical providers. Their lives followed patterns of illness and wellness, trust and mistrust of medical treatment, and community connection and disengagement. They learned to become their own advocates to seek affirmative care. They are aware of the controversial nature of their illness, and many have channeled their frustrations into caring for one another through their Lyme community. Women living with controversial diagnoses like chronic Lyme disease experience increased challenges navigating the medical system to find satisfactory care and thus create communities with each other for mutual aid and support. In understanding these challenges, the medical community can improve care for people living with contested chronic illnesses.

While U.S. public health education increasingly promotes community-based participatory research (CBPR) as a mode of socially-responsive research, today's intertwined health and social injustice crises demand honest reckoning with the limitations of CBPR as a framework for change. We are a team of students, fellows, and faculty reflecting on the complexities encountered over three years of collaborative work with street-based sex worker activists, in a city characterised by stark wealth disparities reinforced by policies of the university within which we operate. We centre a peer-based needs assessment survey and report on barriers to resources and services for sex workers to highlight hard choices and often unacknowledged challenges to academic partnerships. Our process intends to unsettle the too-sanguine narratives of CBPR, draw from insights arising in the discipline of law, and illuminate practices needed to honour commitments, translate knowledge to power-shifting action, and constructively engage with those most affected in determining the policies that structure their lives.We ask: Can our privileged position within the academy be usefully analysed, confronted, instrumentalised, and even subverted as we shape new practices and interventions in the name of health justice? How might we imagine principles and practices towards a movement public health?

Photovoice is a form of participatory action research and community-based participatory research and often used in social sciences to understand the needs of others and uncover the challenges and assets that may exist. Photovoice engages participants in the research process by inviting them to share their experiences through photographs and personal narratives. This act of storytelling and group discussion provides emotional connections among the participant cohort. Through the discussion of shared experience, common themes may arise. This column provides and overview of the photovoice methodology and highlights some of the benefits and limitations one might experience when leading photovoice based projects. Photovoice is a powerful tool that can prove useful for design researchers and practitioners alike as they seek to understand the challenges facing others. It is through this understanding that transformation to improve situations can occur.

The American Dreaming project, a community-based participatory research study conducted in collaboration with the nonprofit organization Define American, focuses on bolstering the mental health of immigrant rights advocates between the ages of 25 and 40 years. All participants identify as undocumented or formerly undocumented and have been public with their status since 2012. Seven people were recruited for the pilot program to participate in a digital storytelling (DST) workshop. They created digital stories (videos approximately 3 minutes in duration) from a series of general story prompts about their lives. Participants also completed pre- and posttests with measures assessing change in posttraumatic stress disorder, stress, self-esteem, depression, belonging, social support, and resilience. Follow-up, semistructured workshop evaluations were gathered, and life history interviews were conducted. The project also included a strategic communications component. In this article, I outline ethical challenges faced as the goals and parameters of the project shifted while conducting a multifaceted critical narrative intervention. The key lesson learned was to make space, prior to the DST workshop, for establishing and agreeing on project priorities with all stakeholders. I recommend creating a one-page memorandum of understanding that includes (1) a brief project description outlining the objectives, (2) goals listed in priority order, and (3) a decision tree to help stakeholders navigate competing interests. While DST is a powerful tool for supporting storyteller agency, working within structures of funding, support, and research can create challenges that critically complicate the narrative intervention.

African Americans experience a significantly greater burden of Alzheimer’s disease (AD) compared to non-Hispanic White Americans. Raising awareness and increasing knowledge of AD within African American communities is an important step towards addressing these disparities. The purpose of this study was to assess the effectiveness of two approaches to sharing AD knowledge with community residents. Using a quasi-experimental design, African American participants were recruited through community partners and local resources in two comparable neighborhoods in Duval County, Florida, which formed the intervention and the comparison groups for this study. The identical 40-min educational lecture was provided to both groups. In the intervention community, the lecture was followed by focus group sessions modeled after the Dementia Friendly America toolkit. In the comparison community, the lecture was followed by a social event where participants could interact informally with the speaker and dementia outreach staff. A brief quantitative survey assessing AD knowledge was administered to participants in both groups before the education session, immediately after the lecture, and 2 months later. Results indicate that both groups improved their knowledge scores at immediate post-test. Scores for both groups declined at 2-month follow-up, but the comparison group’s scores declined more precipitously than the intervention group’s scores (p = 0.0.21). These results suggest that conducting focus groups and interviews following a lecture on AD may help better retain AD knowledge over time.

Despite known health benefits of breastfeeding, the Navajo have low reported frequency of breastfeeding initiation and support. We evaluated breastfeeding frequencies and practices in the predominately Navajo community of rural San Juan County, Utah, to identify factors that affect breastfeeding decisions and duration. We performed retrospective chart review for 135 infants aged 0 to 12 months, and surveys of 85 mothers of infants aged 0 to 2 years, and eight primary care providers. We characterized demographic factors using counts/percentages and medians/inter-quartile ranges, and compared mothers who breastfed for 6 months or less versus greater than 6 months. In 96 infants with complete feeding documentation, 86 infants (90%) received some breast milk and 36 infants (38%) were exclusively breastfed at age 2 months. In 67 infants with complete feeding documentation at ≥ 6 months, 22 infants (33%) were exclusively breastfed 6 months. Most mothers knew about breastfeeding benefits. In 56 mothers whose infants were aged ≥ 6 months at the time of the survey, breastfeeding for more than 6 months had been planned by 44 mothers (79%) but performed by only 29 mothers (52%). Mothers who breastfed for > 6 months were more likely to have been influenced by WIC and less likely to have introduced formula at an early age. Barriers to breastfeeding included maternal pain, latch difficulties, and concerns about inadequate milk supply. Primary care providers reported limited confidence in providing breastfeeding support but would support telehealth-driven interventions. Practical, culturally sensitive interventions, including telehealth and improved provider education, may improve breastfeeding outcomes and community health in this underserved population.

International audience; Background: We conducted a community-based participatory environmental health study in three towns: two in the heart of Marseille’s industrial zone (Fos-sur-Mer and Port-Saint-Louis-du-Rhône), and one on the periphery located about 30 kilometers away (Saint-Martin-de-Crau). Methods: We first conducted a cross-sectional survey of a random sample of residents in each of the three towns. We asked study participants to self-report a wide variety of health issues. We then conducted focus groups with residents and other stakeholders to share preliminary data in order to propose areas of reflection and collaboratively produce contextually-situated knowledge of their health and environment. We directly standardized the prevalences (by age and gender) to the French metropolitan population to make our results more comparable.Results: Study participants who lived closer to the core industrial zone (residents of Fos-sur-Mer and Port-Saint-Louis-du-Rhone) had higher prevalences for respiratory diseases, eye irritation, nose and throat problems, chronic skin problems, severe fatigue for at least one month and headache than people who lived further away (residents of Saint-Martin-de-Crau). Residents also offered diverse qualitative insights about their environment and health experiences. Discussion: We observed elevated prevalences of diseases that affected residents across the industrial zone (Fos-sur-Mer and Port-Saint-Louis-du-Rhône) compared to those living outside (Saint-Martin-de-Crau), and qualitative evidence of how residents made sense of their health experiences strengthening an understanding of their own empirical observations which helps to produce knowledge about health in an industrial context. The results of the workshops show an important benefit from the co-production of local knowledge. Conclusion: We encourage future researchers to do in-depth, community-based research to comprehensively describe the health of residents in other heavily polluted zones, product local knowledge and to help identify policy solutions, engender trust among the local people, and identify opportunities for intervention.Keywords: Community-based participatory research. Environmental health. Epidemiology. Health disparities. Industrial pollution; Contexte : Nous avons réalisé une étude participative en santé environnement ancrée localement (EPSEAL) dans trois villes de la région industrielle de l’étang de Berre, à proximité de Marseille : deux localisées au cœur de la zone industrielle zone (Fos-sur-Mer and Port-Saint-Louis-du-Rhône) et une autre plus en périphérie située à environ 30 km (Saint-Martin-de-Crau).Méthodes : Dans un premier temps, une étude transversale a été réalisée sur un échantillon aléatoire de personnes résidentes dans chaque ville. Un questionnaire de santé déclarée renseignant de nombreux problèmes de santé a été passé à l’ensemble des participants. Puis, des ateliers collaboratifs ont été menés avec les habitants de la zone industrielle, professionnels de santé, membres d’associations, syndicats et élus locaux pour partager les résultats afin de proposer des pistes de réflexion et de produire de la connaissance au sujet leur environnement. Les prévalences standardisées (sur le sexe et l’âge) ont été calculées par méthode de standardisation directe en prenant comme référence la France métropolitaine.Résultats : Les habitants de la zone industrielle (Fos-sur-Mer et Port-Saint-Louis-du-Rhône) présentaient des prévalences pour les pathologies respiratoires, les irritations des yeux, problèmes nez-gorge, problèmes de peau chroniques, fatigue sévère d’au moins un mois et maux de tête plus importantes que pour ceux résidant à l’écart de la zone (Saint-Martin-de-Crau). Les citoyens ont également décrit de nombreuses expériences au sujet de leur environnement et de leur santé. Discussion : Nos résultats suggèrent un état de santé des habitants de la zone industrielle (Fos-sur-Mer et Port-Saint-Louis-du-Rhône) plus dégradé que celui des personnes résidant à l’écart de la zone (Saint-Martin-de-Crau) et témoignent d’une bonne appropriation des résultats de santé ainsi qu’un renforcement de la compréhension des déterminants et savoirs environnementaux locaux dans un contexte industriel. Les résultats issus des ateliers montrent un réel apport bénéfique dans la co-production de savoir local. Conclusion : Nous encourageons les futures recherches à approfondir l’approche participative en santé environnement ancrée localement afin de saisir de manière compréhensible et pertinente la santé des habitants dans un contexte industriel. Cette démarche, permet, en articulant aux savoirs scientifiques les savoirs locaux, de produire de la connaissance et formuler des recommandations à destination des pouvoirs publics afin de consolider la cohésion entre habitants, d’orienter les décisions politiques et proposer des opportunités d’intervention.

Background Open streets events, where roads are temporarily closed to motorized vehicles, can provide safe spaces for physical activity (PA) and become sustainable community infrastructure. Since 2016, we have collaborated with a rural community to implement an open streets event, named ciclovía. In 2019, ciclovía was adopted as a community-wide program. This paper describes the process of building and progressing a ciclovía from a research intervention to a community-adopted program and participation of a rural community in ciclovía. Methods We used community-based participatory research to foster bidirectional learning on how to optimize the content and implementation of ciclovía to be feasible and acceptable for rural communities. The community-academic partnership focused on: 1) understanding the science of ciclovía; 2) learning the implementation process; 3) creating tools to facilitate planning, implementation, and evaluation of ciclovía; and 4) developing transition steps from a research intervention to a community-adopted program. Results The progression of the research intervention to community adoption spanned 2 years. First, the partnership met quarterly to discuss the science of ciclovía, its utility, and its adaptation for rural communities. Second, the partnership studied processes that facilitated ciclovía implementation. Third, the partnership created the ciclovía planning guide and tools for communities to establish their own ciclovía. The guide included forming a planning committee, setting meeting and communication plans, marketing and promotion, and selecting evaluation tools. Fourth, the transition steps from research intervention to community adoption included creating roles and responsibilities, implementing ciclovía using the planning guide, and convening listening sessions for improvement on implementation. Community attendance at ciclovía doubled from 189 individuals (126 children and 63 adults) when it was a research intervention to 394 individuals (277 children and 117 adults) when it was a community program. Conclusions The progression from a research intervention to a community-adopted program encompasses multiple steps that involve bidirectional learning and partnership with the community. Lessons learned from this study are integrated into a disseminatable ciclovía planning guide.

Third-party disclosure by participants is inherent to much global health research. It presents ethical tensions with respecting the autonomy and privacy of non-consenting individuals whose data are disclosed but is neglected in ethics guidelines. Our aim was to describe and ethically reflect on, third party disclosure in a community-participatory demographic and health survey (DHS) implemented within participatory health research (PHR) about community-based care of children affected by AIDS in Eswatini. We collected DHS data and analysed it statistically. We studied the PHR process and outcomes ethnographically and analysed the data interpretively, using theories that conceptualise secrecy as relational and power-laden. We found that third parties' data were disclosed by DHS respondents (typically women), including data about health conditions, abuse perpetration and being a caregiving burden. Ethnographic findings suggested that some third parties may not have consented to us collecting their data. However, respecting third parties' autonomy and privacy presents ethical tensions related to silencing survey respondents and impairing knowledge creation. To minimise the ethical tensions surrounding third-party disclosure researchers can analyse risks, benefits and power dynamics and extend their ethical responsibilities to protect participants to also protect non-participants, and from data collection to also include reporting.

In the United States, Black communities face a complex mental health burden, with growing attention on addressing these disparities through the lens of holistic wellbeing. Given the dearth of research on faith-based interventions focused on mental health through the lens of holistic wellbeing, this study evaluates the impact of a spirituality-based, peer-led one-group pre-test post-test pilot intervention in a sample of Black individuals in the Bronx, New York City. The eight-session creating healthy culture curriculum, focused on improving mental health and spiritual wellbeing, was collaboratively developed through community partnerships. Post-intervention results indicated significantly reduced odds of moderate to severe depression (AOR:0.20), and increased sense of community, social support, role of religion in health, flourishing, and reduced trouble sleeping. In-depth interviews with participants further highlighted the interconnected role between psychosocial and mental health indicators. Findings support importance of holistically developing, implementing, and evaluating spirituality-based mental health interventions in Black communities.

Purpose To describe a mural-based intervention that can be implemented in partnership with community members in Latino neighborhoods in order to improve awareness of barriers to recruitment/retention of U.S. Latinos in clinical research, while augmenting researchers’ access to sensitizing concepts critical for rigorous study design. Background Latinos in the United States suffer disproportionately from several chronic illnesses but are underrepresented as researchers and participants in National Institutes of Health–funded research. This lack of representation inhibits a nuanced awareness of the health needs of U.S. Latinos and hampers efforts to address a persistent lack of health equity among U.S. Latinos and other communities of color. Art-based interventions implemented in Latino communities are increasingly being recognized for their ability to bridge this gap and positively affect the quality and quantity of research partnerships between clinical researchers and U.S. Latinos. Method This article describes a mural-based intervention piloted in two predominantly Latino neighborhoods between 2016 and 2020. The design of this method was guided by community partnered participatory research practices and involved an Assessment–Diagnosis–Planning–Implementation–Evaluation approach. Results Mural painting addressed many of the participation challenges often associated with underrepresentation of Latinos in academic research and allowed for sensitizing interviews with key community members surrounding topics of interest to the research team. Conclusion Research methods that acknowledge traditional art forms, such as mural painting, create a space for building trust and spark interest in future research participation, while augmenting researchers’ access to sensitizing concepts that may improve the cultural competence of future studies, projects, and interventions.

There has been a shift in higher education from traditional lecture-based learning to incorporating high-impact practices and experiential learning. These practices offer students an opportunity to engage in real-world settings that allow them to apply course content directly into practice. In order for high-impact practices to be effective, both program implementation and evaluation should be conducted collaboratively with community stakeholders, also known as community-based participatory research (CBPR). The Girls Empowering Movement (GEM) initiative, an out-of-school time physical activity program, is an example of CBPR in that it was developed by middle school girls, for middle school girls. The purpose of this article is to provide the framework used to recruit and train undergraduate students to collaboratively lead the GEM initiative in the southeastern United States. This article discusses how community partnerships were created, how specific content and curricular decisions were made to foster a unique learning experience, and how evaluation protocols were created to ensure undergraduate learning and community collaboration.

OBJECTIVES To explore the lived (narrative) experience of obesity and/or diabetes mellitus within focus groups consisting of individuals and community support persons residing in Genesee County, Michigan. DESIGN Qualitative study, using Community-Based Participatory Research (CBPR) methodology to design and conduct focus group interviews. SAMPLE Nineteen participants from faith-based organizations (FBOs) in Genesee County (74.5% Caucasian, 3.0% Hispanic American). MEASUREMENTS Semi-structured narrative focus group interviews, using thematic coding and qualitative analysis software (Otter.com). RESULTS Participants from diverse FBOs revealed barriers that prevent them from reaching their weight goals and preventing or controlling diabetes. A shared theme included the concern that providers do not actively inquire about patient concerns at appointments, and they fail to offer practical strategies beyond pharmaceutical interventions. CONCLUSION Focus group interviews with community residents revealed issues and barriers patients and their support persons face in health care experiences. Utilizing CBPR (methodology) is an opportunity for advanced practice nurses (health care professionals) to co-create strategies and interventions with the community that can assist them in successfully reaching their weight loss and diabetes prevention goals.

Montagnards, an indigenous multitribal refugee-origin population concentrated in North Carolina, remain an invisible, medically underserved, and socioeconomically underrepresented Asian American sub-group. Yet this group is resilient, with language diversity, rich cultural traditions and family caregiving in multigenerational households. Using community-based participatory research methods, we developed and administered a two-part survey to 144 Montagnard adults, documenting socioeconomic characteristics, health indicators and lifestyle behaviors. Forty-one percent of participants had no formal education, 76% had little/no English proficiency and 28% described having a very hard time paying their bills. Seventy-seven percent were overweight per BMI category, 79% had elevated blood pressure and 100% scored high for significant depressive symptoms. Participants reported high levels of physical inactivity and daily dietary intake of MSG. However, Montagnards reported limited tobacco and alcohol use, a diet of fresh vegetables and rice, and regular church attendance. These represent protective lifestyle behaviors and targets for culturally responsive health interventions.

Background Chagas disease is a parasitic disease endemic to Latin America, but it has become a disease of global concern due to migration flows. Asymptomatic carriers may host the parasite for years, without knowing they are infected. The aim of this study is to assess prevalence of Chagas disease and evaluate the participants’ level of knowledge between Latin American migrants attending a community-based screening campaign. Methods Three community-based campaigns were performed in Alicante (Spain) in 2016, 2017 and 2018, including educational chats and blood tests for Trypanosoma cruzi serology. Participants completed a questionnaire assessing knowledge about the mechanisms of transmission, disease presentation, diagnosis, and treatment. People seropositive for T. cruzi underwent diagnostic confirmation by two different tests. Results were analyzed by multivariable logistic regression and expressed as adjusted odds ratios (aORs), adjusting for age, sex, and time in Spain. Results A total of 596 participants were included in the study; 17% were aged under 18 years. Prevalence in adults was 11% [54/496; 95% confidence interval (CI): 8.3–14.5%] versus 0% among children. All but one case were in Bolivians. Diagnosis was independently associated with having been born in Bolivia (aOR: 102, 95% CI: 13–781) and a primary school-level education (aOR: 2.40, 95% CI: 1.14–5.06). Of 54 people diagnosed with Chagas disease (most of whom were asymptomatic), 42 (77.7%) returned to the clinic at least once, and 24 (44.4%) received treatment. Multivariable analysis showed that coming from Argentina (aOR: 13, 95% CI: 1.61–1188) or Bolivia (aOR: 1.90, 95% CI: 1.19–3.39) and having received information about Chagas disease in Spain (aOR: 4.63, 95% CI: 2.54–8.97) were associated with a good level of knowledge on the disease. Having primary level studies (aOR: 0.59, 95% CI: 0.34–0.98) and coming from Ecuador (aOR: 4.63, 95% CI: 2.52–847) were independently associated with a lower level of knowledge. Conclusions Community-based interventions are a good strategy for diagnosing neglected diseases such as Chagas disease in non-endemic countries and for identifying and treating infected, asymptomatic individuals. Graphic abstract

Community health participation is an essential tool in health research and management where community members, researchers and other relevant stakeholders contribute to the decision-making processes. Though community participation processes can be complex and challenging, evidence from previous studies have reported significant value of engaging with community in community health projects.To identify the nature and extent of community involvement in community health participatory research (CHPR) projects in Ghana and draw lessons for participatory design of a new project on diabetes intervention in Accra called the Contextual Awareness Response and Evaluation (CARE) diabetes project.A scoping review of relevant publications on CHPR projects in Ghana which had a participatory component was undertaken. PubMed, PsycINFO, African Journal Online, Health Source: Nursing/Academic Edition, Humanities International Complete and Google Scholar were searched for articles published between January 1950 and October 2021. Levac et al.'s (2010) methodological framework for scoping reviews was used to select, collate and characterise the data.Fifteen studies were included in this review of CHPR projects from multiple disciplines. Participants included community health workers, patients, caregivers, policymakers, community groups, service users and providers. Based on Pretty's participation typology, several themes were identified in relation to the involvement of participants in the identified studies. The highest levels of participation were found in two studies in the diagnosis, four in the development, five in the implementation and three in the evaluation phases of projects. Community participation across all studies was assessed as low overall.This review showed that community participation is essential in the acceptability and feasibility of research projects in Ghana and highlighted community participation's role in the diagnosis, development, implementation and evaluation stages of projects. Lessons from this review will be considered in the development, implementation, and future evaluation of the CARE diabetes project.