Search

Background: Healthcare quality measurements in the United States illustrate disparities by racial/ethnic group, socio-economic class, and geographic location. Redressing healthcare inequities, including measurement of and reimbursement for healthcare quality, requires partnering with communities historically excluded from decision-making. Quality healthcare is measured according to insurers, professional organizations and government agencies, with little input from diverse communities. This community-based participatory research study aimed to amplify the voices of community leaders from seven diverse urban communities in Minneapolis-Saint Paul Minnesota, view quality healthcare and financial reimbursement based on quality metric scores., Methods: A Community Engagement Team consisting of one community member from each of seven urban communities -Black/African American, Lesbian-Gay-Bisexual-Transgender-Queer-Two Spirit, Hmong, Latino/a/x, Native American, Somali, and White-and two community-based researchers conducted listening sessions with 20 community leaders about quality primary healthcare. Transcripts were inductively analyzed and major themes were identified., Results: Listening sessions produced three major themes, with recommended actions for primary care clinics. #1: Quality Clinics Utilize Structures and Processes that Support Healthcare Equity. #2: Quality Clinics Offer Effective Relationships, Education, and Health Promotion. #3: Funding Based on Current Quality Measures Perpetuates Health Inequities., Conclusion: Community leaders identified ideal characteristics of quality primary healthcare, most of which are not currently measured. They expressed concern that linking clinic payment with quality metrics without considering social and structural determinants of health perpetuates social injustice in healthcare., (© 2021. The Author(s).)

Background: In the context of mental health research, co-production involves people with lived expertise, those with professional or academic expertise, and people with both of these perspectives collaborating to design and actualize research initiatives. In the literature, two dominant perspectives on co-production emerge. The first is in support of co-production, pointing to the transformative value of co-production for those involved, the quality of services developed through this process, as well as to broader system-level impacts (e.g. influencing changes in health system decision making, care practices, government policies, etc.). The second stance expresses scepticism about the capacity of co-production to engender genuine collaboration given the deeply ingrained power imbalances in the systems in which we operate. While some scholars have explored the intersections of these two perspectives, this body of literature remains limited. Main text: This paper contributes to the literature base by exploring the nuances of co-production in health research. Using our mental health participatory action research project as a case example, we explore the nuances of co-production through four key values that we embraced: Navigating power relations together Multi-directional learning Slow and steady wins the race Connecting through vulnerability Conclusions: By sharing these values and associated principles and practices, we invite readers to consider the complexities of co-production and explore how our experiences may inform their practice of co-production. Despite the inherent complexity of co-production, we contend that pursuing authentic and equitable collaborations is integral to shaping a more just and inclusive future in mental health research and the mental health system at large. Plain Language Summary: Background: In the context of mental health research, co-production is a process where people with lived experiences, those with academic or professional experience, and people with both of these perspectives collaborate to design and actualize research initiatives. In the literature, there are two main opinions about co-production. The first opinion is that co-production is beneficial for those involved, improves the quality of services, and can also have impacts at higher system levels (e.g. influencing changes in health system decision making, care practices, government policies, etc.). The second opinion is doubtful that co-production has the ability to foster authentic collaboration because of the differences in power between academic and health systems. Even though some scholars have looked at both opinions, there is not a lot of research on this. Main Text: This paper contributes to the literature base exploring the nuances of co-production in health research. Using our mental health participatory action research project as a case example, we explore the nuances of co-production through four key values that we embraced: Navigating power relations together Multi-directional learning Slow and steady wins the race Connecting through vulnerability Conclusions: By sharing these values and associated principles and practices, we invite readers to consider the complexities of co-production and explore how our process may inform their engagement with co-production. We argue that pursuing authentic collaborations is key to shaping a more just and inclusive future in mental health research and the mental health system at large. [ABSTRACT FROM AUTHOR]

Traditional alcoholic-beverages have been used by the tribes since ages. Bonda is one of the 62 Schedule Tribes and 13 Particularly Vulnerable Tribal Groups of Odisha, who reside in the southern part of the state. Historically, a number of traditional alcohols have been produced by the Bonda which is consumed widely and used in the socio-economic and cultural events. Current times evidence the production and use of traditional alcohols gradually giving way to modern alcoholic drinks. In this context this paper tries to document different types of traditional alcohols produced, consumed and used by the Bonda along with its various impacts on the individual drinker and the society. The data were collected through community-based research in four villages under Khairaput block of Malkangiri, Odisha. The study found that 23 types of traditional alcohols are produced by the Bonda households, who derive economic security there from. However, the production, consumption and use of traditional alcohols are on the decline with the gradual increase of foreign liquor and this paper suggests institutional support for the clean production and marketing of traditional alcohols of the Bonda tribe. [ABSTRACT FROM AUTHOR]

Background: This paper describes a study protocol for co-producing and co-assessing a new sustainable and scalable service solution that enhances health and social integration by involving providers and volunteers delivering services for elderly people in the province of Cremona (Italy), where the elderly population will reach 27% in 2023., Methods: This upcoming study involves mixed-method participatory research and is structured in three study phases and related objectives. First, it will co-produce a new, accessible and sustainable service solution using an iterative design and management method, Plan-Do-Check-Act by involving professionals and volunteers of a heterogeneous group of health, social and third sector organizations located in the city of Cremona (Italy). Second, the study protocol will co-assess the outcomes of the new service solution using a mixed-method approach for measuring the outcomes on: professionals and volunteers (micro level) and their health, social and third sector organizations (meso level). Third, this study will co-investigate the scalability of the new solution promoting health and social integration in other similar urban areas of the Province of Cremona via the Intervention Scalability Assessment Tool (macro level). The data will be collected through the analysis of official documents, websites, policies and participatory workshops., Discussion: This protocol proposes an innovative intervention, a novel participatory approach, and an unexplored scalability assessment tool in the context of health and social care integration. This study aims to support professionals from health and social care service providers and volunteers from third-sector organizations to collaborate and integrate each other's resources. In doing so, the participatory approach will facilitate the co-creation of an effective response to the need of health and social integration, and the development of trustful relationships between health and social care service providers. Moreover, the adoption of Plan-Do-Check-Act and Intervention Scalability Assessment Tool will ensure the quality, scalability and sustainability of the new service solution in other settings., (© 2024. The Author(s).)

Background: Peru is facing a double burden of malnutrition (DBM), characterized by the co-existence of undernutrition and overnutrition. Double-duty actions that concurrently target common drivers of undernutrition and overnutrition, while ensuring no unintended side effects, are recommended to effectively address the DBM. To understand these complex common mechanisms and design context-specific double-duty actions, there is a need for participatory systems approaches. This paper provides a case study of applying a community-based system dynamics approach to capture stakeholder perspectives of food system drivers of the DBM in two regions in Peru. Methods: We implemented a multi-stage community-based system dynamics approach, which included processes for research capacity building for systems approaches, and the designing, piloting, and implementation of stakeholder workshops. A total of 36 stakeholders, representing diverse perspectives, participated in five group model building workshops. Stakeholder views are presented in a causal loop diagram that showcases the feedback mechanisms between key food system drivers of overweight and stunting in Peru. Results: The causal loop diagram highlights that prioritization of undernutrition over overnutrition in the policymaking process, due to Peru's historically high levels of undernutrition, may undermine action against the DBM. It also describes potential mechanisms of unintended impacts of undernutrition policies on the DBM in Peru, including impacts related to within-family distribution and quality of food provided through food assistance programs, and unintended impacts due to regional dynamics. Conclusions: This paper highlights the importance of a participatory approach to understand local needs and priorities when recommending double-duty actions in Peru and shares practical methodological guidance on applying participatory systems approaches in public health. [ABSTRACT FROM AUTHOR]

Background: The assessment of primary care organizations is considered to be essential for improving care. However, the assessments' acceptability to professionals poses a challenge. Developing assessment programmes in collaboration with the end-users is a strategy that is widely encouraged to make interventions better targeted. By doing so, it can help to prevent resistance and encourage adherence to the assessment. This process, however, is rarely reported. This paper aims to fill this gap by describing the process of the co-production of an assessment programme for community health centres (CHCs) affiliated to the Federation of Community Health Centres (FCHC) in French-speaking Belgium. Methods: We conducted a documentary study on the co-production of the assessment programme before carrying out semi-structured interviews with the stakeholders involved in its development. Results: CHCs in French-speaking Belgium are increasing in number and are becoming more diverse. For the FCHC, this growth and diversification pose challenges for the meaning of CHC (an identity challenge) and what beneficiaries can expect in terms of the quality of organizations declaring themselves CHC (a quality challenge). Faced with this double challenge, the FCHC decided to develop an assessment programme, initially called Label, using participatory action research. During the co-production process, this initial programme version was abandoned in favour of a new name "DEQuaP". This new name embodies new objectives and new design regarding the assessment programme. When studying the co-production process, we attributed these changes to two controversies. The first concerns how much and which type of variety is desired among CHCs part of the FCHC. The second concerns the organization of the FCHC in its capacity as a federation. It shed light on tensions between two professional segments that, in this paper, we called "political professionalism" and "pragmatic professionalism". Conclusions: These controversies show the importance of underlying challenges behind the development of an assessment programme for CHCs. This provided information about the evolution of the identity of multidisciplinary organizations in primary care. Issues raised in the development of this assessment programme also show the importance of considering assessment methods that reflect and embody the current realities of these organizations and the way of developing these assessment methods. [ABSTRACT FROM AUTHOR]

There is increasing research and public policy investment in the development of technologies to support healthy aging and age-friendly services in Canada. Yet adoption and use of technologies by older adults is limited and rates of abandonment remain high. In response to this, there is growing interest within the field of gerotechnology in fostering greater participation of older adults in research and design. The nature of participation ranges from passive information gathering to more active involvement in research activities, such as those informed by participatory design or participatory action research (PAR). However, participatory approaches are rare with identified barriers including ageism and ableism. This stigma contributes to the limited involvement of older adults in gerotechnology research and design, which in turn reinforces negative stereotypes, such as lack of ability and interest in technology. While the full involvement of older adults in gerotechnology remains rare, the Older Adults' Active Involvement in Ageing & Technology Research and Development (OA-INVOLVE) project aims to develop models of best practice for engaging older adults in these research projects. In this comment paper, we employ an unconventional, conversational-style format between academic researchers and older adult research contributors to provide new perspectives, understandings, and insights into: (i) motivations to engage in participatory research; (ii) understandings of roles and expectations as research contributors; (iii) challenges encountered in contributing to gerotechnology research; (iv) perceived benefits of participation; and (v) advice for academic researchers. Plain English summary: More investments are being made to develop technologies that support healthy aging and age-friendly services in Canada. However, not many older adults use these technologies and those who do tend to stop using them after some time. Gerotechnology is a field of study that combines an interest in gerontology and technology. Within gerotechnology, researchers are learning more about how to encourage older adults to participate in research and the design of new technologies. There are different ways that older adults participate in gerotechnology research, with some approaches being more passive than others. In participatory design and participatory action research projects older adults are encouraged to engage more actively as co-researchers. However, researchers have found that there are some limitations to engaging older adults actively in research, including ageism and ableism, meaning that older adults are perceived to be capable of contributing based on their age and cognitive or physical abilities. These stereotypes have limited how often and how much older adults actually contribute to technology research and design. The Older Adults' Active Involvement in Aging & Technology Research and Development (OA-INVOLVE) project aims to address these gaps. In this comment paper, we present a conversation between academic and older adult researchers who have contributed to OA-INVOLVE. The goal of this conversation is to explore together: (i) motivations to engage in participatory research; (ii) understandings of roles and expectations as research contributors; (iii) challenges encountered in contributing to gerotechnology research; (iv) perceived benefits of participation; and (v) advice for academic researchers. [ABSTRACT FROM AUTHOR]

Background: Hepatitis B is endemic amongst the Australian Aboriginal population in the Northern Territory. A participatory action research project identified the lack of culturally appropriate education tools and led to the development of the "Hep B Story" app in the Aboriginal language Yolŋu Matha. This paper describes a formal evaluation of the app's first version, which informed improvements and translation into a further ten Aboriginal languages., Methods: The evaluation employed Participatory Action Research (PAR) principles to work within Indigenous research methodologies and prioritise Indigenous knowledge to improve the app iteratively. Semi-structured interviews and focus groups were conducted across the Northern Territory with 11 different language groups. Local Community Based Researchers and Aboriginal Research team members coordinated sessions. The recorded, translated conversations were transcribed verbatim and thematically analysed using an inductive and deductive approach., Results: Between November 2018 and September 2020, 94 individuals from 11 language groups participated in 25 semi-structured interviews and 10 focus groups. All participants identified as Aboriginal. Most participants felt the app would be culturally appropriate for Aboriginal communities in the Northern Territory and improve knowledge surrounding hepatitis B. The information gathered from these interviews allowed for identifying five main themes: support for app, relationships, concept versus language, shame, and perceptions of images, along with errors that required modification., Conclusions: A "real-life" evaluation of the app was comprehensively completed using a PAR approach blended with Indigenous research methods. This evaluation allowed us to develop an updated and enhanced version of the app before creating the additional ten language versions. An iterative approach alongside strong community engagement was pivotal in ensuring the app's cultural safety and appropriateness. We recommend avoiding the use of knowledge-based evaluations in an Aboriginal setting to ensure relevant and culturally appropriate feedback is obtained., (© 2024. The Author(s).)

In an era of escalating and intersectional crises, the toxic drug poisoning crisis stands out as a devastating and persistent phenomenon. Where we write from in British Columbia (BC), Canada, over 13,000 deaths have occurred in the eight years since the toxic drug poisoning crisis was declared a provincial health emergency. While many of these deaths have occurred in large urban centres, smaller rural communities in British Columbia are also grappling with the profound impacts of the toxic drug poisoning crisis and are struggling to provide adequate support for their vulnerable populations. In response to these challenges, the Walk With Me research project has emerged in the Comox Valley of Vancouver Island, BC, employing community-engaged methodologies grounded in pluralist knowledge production. Walk With Me seeks to understand the unique manifestations of the toxic drug poisoning crisis in small communities, identifying local harm reduction interventions that can foster community resilience, and aiming to catalyze sustainable change by amplifying the voices of those directly affected by the crisis to advocate for policy changes. This paper outlines the conceptual and methodological underpinnings of the Walk With Me project as a harm reduction initiative, which holds community partnerships and diverse ways of knowing at its heart. It presents the community-engaged research framework used by the project to address overlapping health and social crises, offering practical examples of its application in various research projects across sites and organizations. The paper concludes with a reflection on the impacts of Walk With Me to date, highlighting the lessons learned, challenges encountered, and opportunities for future research and action. Overall, this article captures the urgent need for community-engaged approaches to address the toxic drug poisoning crisis and other multidimensional crises facing society, particularly in smaller and rural communities, underscoring the potential for meaningful change through collaborative, grassroots efforts., (© 2024. The Author(s).)

Background: Nowhere is optimising healthcare staff retention more important than in primary health care (PHC) settings in remote Australia, where there are unacceptably high rates of staff burnout and turnover. Ensuing consequences for the remote health services and the community are acute – staffing shortfalls in clinics; organisational instability; excessive costs associated with frequent staff recruitment and orientation; diminished access to PHC for patients in need; and lack of continuity of patient care; all of which further entrench poor health outcomes for the community. Optimising remote healthcare staff retention is critical in order to provide high quality and continued PHC. Currently, however, there is paucity of knowledge to inform targeted and effective retention strategies in remote health services. This research program seeks to develop a stronger evidence base to understand (i) what retention strategies are effective in improving morale, job satisfaction, intention to remain in the job, and consequent length of service for remote healthcare staff; (ii) how best to 'bundle' these strategies for different health workforce groups; and (iii) how these 'bundles' work in different service contexts. Methods: This paper describes a five-year implementation research program in partnership with twelve remote Aboriginal and Torres Strait Islander Community Controlled Health Services (ATSICCHS) in the Northern Territory and Queensland, Australia. Overall methodology follows a participatory action research approach which incorporates co-design and realist elements. The program comprises two broad phases involving evidence consolidation and synthesis (Phase 1), and co-design, implementation, and prospective evaluation of 'bundles' of retention strategies (Phase 2) to improve retention of healthcare staff in participating ATSICCHSs. Discussion: This innovative research program has the potential to develop a comprehensive evidence base required to optimise health workforce retention in remote health services. This new evidence will strengthen understanding of what 'bundles' of retention strategies are effective, for which groups of employees, and how they work to improve staff retention. [ABSTRACT FROM AUTHOR]

Background: Identifying locally relevant and agreed-upon priorities for improving young people's mental health, aligned with social and environmental factors, is essential for benefiting target communities. This paper describes a participatory approach to engage young people and professionals in identifying such priorities, whilst considering the social determinants related to them. Methods: We utilised a community-based participatory approach to support young people and professionals in identifying, reviewing, refining, and prioritising, locally relevant opportunity areas that are crucial for understanding and addressing social determinants of young people's mental health. We adopted a flexible five-stage process, which enabled greater reflection and adaptation in response to young people's and professionals' feedback and reflections. Results: Over seven months, we engaged with young people and professionals in Northern Devon, (a rural area in southwest England), involving over 290 individuals to identify locally relevant priorities for supporting young people's mental health. Three priorities were identified for subsequent exploration using co-design approaches: (1) identity and belonging; (2) mental health awareness and literacy; and (3) diverse opportunities (for education, employment and leisure). The engagements suggested that designing initiatives and strategies in these areas could contribute to improvements in young people's mental health. Conclusion: Young people in Northern Devon prioritised three themes for the next phase of the Kailo Programme—mental health literacy, access to diverse careers and employment opportunities, and identity and belonging within their communities. Rural communities face unique barriers associated with these issues, related to less diverse populations, lack of access to reliable and affordable transport and local industries, and seasonal working. The perceived neglect by authorities towards rural young people has resulted in a lack of activities and opportunities catering to their specific needs, compared to urban areas. Although the government has recognised the need to address these disparities, community members suggest that there is still more work to be done. Plain English summary: The Kailo project aims to help young people and their communities find local solutions for better mental health in the UK. This paper discusses our findings in Northern Devon, England. Through various conversations and workshops with young people and professionals, we identified three key themes: (1) identity and belonging; (2) mental health knowledge and awareness; and (3) a variety of career, education, and leisure opportunities. These themes will be of focus for Kailo's next phase where ideas and initiatives will be designed and developed with young people and community professionals with the aim to help address important mental health challenges young people are experiencing within Northern Devon. [ABSTRACT FROM AUTHOR]

Background: Female genital mutilation (FGM) is a practice that involves the removal of external female genitalia and is widely known as a violation of human rights. The custom is illegal in the United Kingdom (UK) and carries a sentence of up to 14 years in prison. This prohibition, along with the secretive nature of the practice, has led to limited research on the awareness of FGM on young people in the UK. Little is known about the process of involving young people in research about the topic. Methods: This paper is based on the findings of a Ph.D. project that used a community-based participatory research approach (CBPR). The research took a two-stage approach: stage one aimed to recruit nine young people aged 15–18, from the Southwest of England, who attended a 10-day training workshop to prepare them for stage two—data collection with young people aged 13–15. This paper focuses on the 10-day creative, collaborative workshops. The data collected from the collaborative workshops were analysed using thematic analysis. Results: Undertaking CBPR enhanced the quality and relevance of this research. Engaging young people as co-researchers was vital for the success of this project. By developing a collaborative learning environment, young people were able to build trusting relationships which flourished beyond the research project. In addition, the creative workshops enabled peer learning about FGM and inspired young people to learn new skills that was useful in their daily lives. Conclusion: The collaborative environment created in this project enabled an insightful learning experience for young people and researchers alike. Participants and facilitators formed relationships; participants learned new marketable skills and researchers gained new insights about FGM, from a young person's perspective. Plain English summary: Making sure that young people are involved in research is important. It can sometimes be hard for young people to get involved with research involving a sensitive topic, such as female genital mutilation. This may be due to several reasons, one of which is the hidden nature of the practice, which may make it harder for researchers to engage and involve the youth. This project involved a group of second-generation youth from FGM-affected communities as co-researchers in a community based participatory research (CBPR) approach, which examined how second-generation youth, living in the United Kingdom (UK)—whether directly or indirectly affected by FGM—interpreted and understood the practice. We followed a two-stage process. Stage one involved recruiting and training young people to become co-researchers, and stage two involved the co-researchers conducting focus groups and interviews with their peers. The focus of this paper is stage one. Nine young people aged 15–18, attended a 10-day creative workshop training programme [7] and worked with the researcher to develop participatory methods that would be used with young people aged 13–15 at stage two of the project. The workshops employed team-building approaches and interactive learning techniques, including drawing and writing. Participants and facilitators formed relationships; participants learned new marketable skills and researchers gained new insights about FGM, from a young person's perspective. There were some difficult parts of running the sessions, such as, the time needed to make sure the sessions run smoothly. [ABSTRACT FROM AUTHOR]

Background: Much evidence-based physical activity (PA) interventions have been tested and implemented in urban contexts. However, studies that adapt, implement, and evaluate the effectiveness of these interventions in micropolitan rural contexts are needed. The study aimed to evaluate the effectiveness of the Active Ottumwa intervention to promote PA in a micropolitan community. Methods: Between 2013 – 2019, we implemented Active Ottumwa in a micropolitan setting, and subsequently implemented and evaluated its effectiveness using a Hybrid Type I design. In this paper, we describe the intervention's effectiveness in promoting PA. We collected PA data over 24 months from a cohort of community residents using accelerometers and PA data from two cross-sectional community surveys administered in 2013 and 2018, using the Global Physical Activity Questionnaire. Results: From the cohort, we found significant change in PA over 24 months (P = 0.03) corresponding to a 45-min daily decrease in sedentary activity, a daily increase of 35-min in light PA and 9 min in moderate-to-vigorous PA. There was a statistically significant (P = 0.01) increasing trend at the population-level in the moderate-to-vigorous composition of 7 min between the two cross-sectional assessments (95% CI: 0.1%—1.34%). Conclusions: The study demonstrates that the adapted evidence-based PA interventions in a micropolitan context is effective. [ABSTRACT FROM AUTHOR]

System dynamics approaches are increasingly addressing the complexity of public health problems such as childhood overweight and obesity. These approaches often use system mapping methods, such as the construction of causal loop diagrams, to gain an understanding of the system of interest. However, there is limited practical guidance on how such a system understanding can inform the development of an action programme that can facilitate systems changes. The Lifestyle Innovations Based on Youth Knowledge and Experience (LIKE) programme combines system dynamics and participatory action research to improve obesity-related behaviours, including diet, physical activity, sleep and sedentary behaviour, in 10–14-year-old adolescents in Amsterdam, the Netherlands. This paper illustrates how we used a previously obtained understanding of the system of obesity-related behaviours in adolescents to develop an action programme to facilitate systems changes. A team of evaluation researchers guided interdisciplinary action-groups throughout the process of identifying mechanisms, applying the Intervention Level Framework to identify leverage points and arriving at action ideas with aligning theories of change. The LIKE action programme consisted of 8 mechanisms, 9 leverage points and 14 action ideas which targeted the system's structure and function within multiple subsystems. This illustrates the feasibility of developing actions targeting higher system levels within the confines of a research project timeframe when sufficient and dedicated effort in this process is invested. Furthermore, the system dynamics action programme presented in this study contributes towards the development and implementation of public health programmes that aim to facilitate systems changes in practice. [ABSTRACT FROM AUTHOR]

Background: Health research partnership approaches have grown in popularity over the past decade, but the systematic evaluation of their outcomes and impacts has not kept equal pace. Identifying partnership assessment tools and key partnership characteristics is needed to advance partnerships, partnership measurement, and the assessment of their outcomes and impacts through systematic study. Objective: To locate and identify globally available tools for assessing the outcomes and impacts of health research partnerships. Methods: We searched four electronic databases (Ovid MEDLINE, Embase, CINAHL + , PsychINFO) with an a priori strategy from inception to June 2021, without limits. We screened studies independently and in duplicate, keeping only those involving a health research partnership and the development, use and/or assessment of tools to evaluate partnership outcomes and impacts. Reviewer disagreements were resolved by consensus. Study, tool and partnership characteristics, and emerging research questions, gaps and key recommendations were synthesized using descriptive statistics and thematic analysis. Results: We screened 36 027 de-duplicated citations, reviewed 2784 papers in full text, and kept 166 studies and three companion reports. Most studies originated in North America and were published in English after 2015. Most of the 205 tools we identified were questionnaires and surveys targeting researchers, patients and public/community members. While tools were comprehensive and usable, most were designed for single use and lacked validity or reliability evidence. Challenges associated with the interchange and definition of terms (i.e., outcomes, impacts, tool type) were common and may obscure partnership measurement and comparison. Very few of the tools identified in this study overlapped with tools identified by other, similar reviews. Partnership tool development, refinement and evaluation, including tool measurement and optimization, are key areas for future tools-related research. Conclusion: This large scoping review identified numerous, single-use tools that require further development and testing to improve their psychometric and scientific qualities. The review also confirmed that the health partnership research domain and its measurement tools are still nascent and actively evolving. Dedicated efforts and resources are required to better understand health research partnerships, partnership optimization and partnership measurement and evaluation using valid, reliable and practical tools that meet partners' needs. [ABSTRACT FROM AUTHOR]

Purpose: This study evaluated adolescents' mental health their knowledge, attitudes, and beliefs about mental health conditions, and their access to critical mental health services in Lira District, northern Uganda. The political history of the region, the epicenter of the decades-long conflict between the Lord's Resistance Army and the Ugandan government, makes for an interesting case study of the political and social determinants of mental health of those directly impacted by conflict, and on subsequent generations growing up in post-conflict communities. Methods: This paper presents the results of a community-based participatory research study carried out by youth public health ambassadors in Lira District, Uganda. The study consisted of a mixed methods cross-sectional survey of households, schools, and healthcare facilities. Results: The study found 66% of adolescents indicated poor well-being and possible symptoms of depression and 41% of adolescents reported at least 4 childhood trauma events. Over 35% reported feeling extremely sad and 60% reported feeling socially isolated during the COVID lockdowns that lasted from 2020 to 2021. Nearly half of the adolescents aged 14–17 surveyed (N = 306) believed that witchcraft caused mental health problems, while less than 20% believed that traumatic experiences could be a cause. Forty percent of respondents had no idea of where to seek mental health care, and few facilities had mental health services available. Discussion: These findings illustrate the need to study the political and social determinants of mental health, especially on those directly impacted by armed conflict and for the generations growing up in post-conflict communities as they seek to rebuild. [ABSTRACT FROM AUTHOR]

Meaningful engagement and partnerships with people who use drugs are essential to conducting research that is relevant and impactful in supporting desired outcomes of drug consumption as well as reducing drug-related harms of overdose and COVID-19. Community-based participatory research is a key strategy for engaging communities in research that directly affects their lives. While there are growing descriptions of community-based participatory research with people who use drugs and identification of key principles for conducting research, there is a gap in relation to models and frameworks to guide research partnerships with people who use drugs. The purpose of this paper is to provide a framework for research partnerships between people who use drugs and academic researchers, collaboratively developed and implemented as part of an evaluation of a provincial prescribed safer supply initiative introduced during dual public health emergencies (overdose and COVID-19) in British Columbia, Canada. The framework shifts from having researchers choose among multiple models (advisory, partnership and employment) to incorporating multiple roles within an overall community-based participatory research approach. Advocacy by and for drug users was identified as a key role and reason for engaging in research. Overall, both academic researchers and Peer Research Associates benefited within this collaborative partnerships approach. Each offered their expertise, creating opportunities for omni-directional learning and enhancing the research. The shift from fixed models to flexible roles allows for a range of involvement that accommodates varying time, energy and resources. Facilitators of involvement include development of trust and partnering with networks of people who use drugs, equitable pay, a graduate-level research assistant dedicated to ongoing orientation and communication, technical supports as well as fluidity in roles and opportunities. Key challenges included working in geographically dispersed locations, maintaining contact and connection over the course of the project and ensuring ongoing sustainable but flexible employment. [ABSTRACT FROM AUTHOR]

Background: Im/migrants (immigrants and migrants, including refugees, asylum seekers, and individuals without legal documentation) experience unique assets and needs in relation to coronavirus disease 2019 (COVID-19). Community-based participatory research (CBPR) is one way to engage im/migrant communities. Rochester Healthy Community Partnership (RHCP) is a CBPR partnership in Rochester, Minnesota. RHCP partners noted that credible COVID-19 information was not available to their communities. In response, RHCP formed a COVID-19 Task Force and adapted the Centers for Disease Control and Prevention's Crisis and Emergency Risk Communication (CERC) framework to create an intervention that prioritized im/migrant groups experiencing health disparities. In the CERC intervention, communication leaders delivered COVID-19 health messages to their social networks and documented related concerns. RHCP relayed these concerns to regional leaders to ensure that im/migrant experiences were included in decision making. Once vaccines were available, RHCP continued to deploy the CERC intervention to promote vaccination equity. The aims of this paper are to (1) describe the implementation of a bidirectional CERC intervention for vaccination equity, and (2) describe a community-engaged and community-based vaccine clinic intervention. Methods: First, we surveyed participants (n = 37) to assess COVID-19 experiences, acceptability of the CERC intervention, and motivation to receive a COVID-19 vaccination. Second, we collaborated with community partners to hold vaccine clinics. We report descriptive statistics from each intervention. Results: When asked about the acceptability of the CERC intervention for vaccine equity, most participants either reported that they 'really liked it' or 'thought it was just ok'. Most participants stated that they would recommend the program to family or friends who have not yet received the COVID-19 vaccine. Almost all participants reported that they felt 'much more' or 'somewhat more' motivated to receive a COVID-19 vaccine after the intervention. We administered 1158 vaccines at the vaccination clinics. Conclusions: We found that participants viewed the CERC intervention for vaccination equity as an acceptable way to disseminate COVID-19-related information. Nearly all participants reported that the intervention convinced them to receive a COVID-19 vaccine. In our experience, community-engaged and community-based clinics are a successful way to administer vaccines to im/migrant communities during a pandemic. [ABSTRACT FROM AUTHOR]

Background: Systems science approaches like simulation modeling can offer an opportunity for community voice to shape policies. In the episteme of many communities there are elders, leaders, and researchers who are seen as bearers of historic knowledge and can contextualize and interpret contemporary research using knowledge systems of the community. There is a need for a systematic methodology to collaborate with community Knowledge Bearers and Knowledge Interpreters. In this paper we report the results of piloting a systematic methodology for collaborating with a community Knowledge-Bearer and Knowledge-Interpreter to develop a conceptual model revealing the local-level influences and architecture of systems shaping community realities. The use case for this pilot is 'persistent poverty' in the United States, specifically within the inner-city African American community in Baltimore City., Methods: This pilot of a participatory modeling approach was conducted over a span of 7 sessions and included the following steps, each with an associated script: Step 1: Knowledge-Bearer and Knowledge-Interpreter recruitment Step 2: Relationship building Step 3: Session introduction, Vignette development & enrichment Step 4: Vignette analysis & constructing architecture of systems map Step 5: Augmenting architecture of systems map RESULTS: Each step of the participatory modeling approach resulted in artifacts that were valuable for both the communities and the research effort. Vignette construction resulted in narratives representing a spectrum of lived experiences, trajectories, and outcomes within a community. The collaborative analysis of vignettes yielded the Architecture of Systemic Factors map, that revealed how factors inter-relate to form a system in which lived experience of poverty occurs. A literature search provided an opportunity for the community to contextualize existing research about them using realities of lived experience., Conclusion: This methodology showed that a community Knowledge Bearer can function as communicators and interpreters of their community's knowledge base, can develop coherent narratives of lived experiences within which research and knowledge is contextualized, and can collaboratively construct conceptual mappings necessary for simulation modeling. This participatory modeling approach showed that even if there already exists a vast body of research about a community, collaborating with community gives context to that research and brings together disparate findings within narratives of lived experience., (© 2023. The Author(s).)

This qualitative investigation explores the cuisine of the Tai Lue people, an ethnic minority group in Northern Thailand. Through documentary analysis, field study and participatory action research, four traditional Tai Lue dishes were transformed for presentation to visitors. Community members developed these products in cooperation with a trained chef. The final products were marketed through a university podcast project and at a cultural fair. The results of the investigation were disrupted by the Covid pandemic, but the initial impact of the project indicates a prospective place in the wider post-pandemic environment for the indigenous cuisine of the Tai Lue. The following paper discusses this potential through the lens of the foodscape, regional development and authenticity. [ABSTRACT FROM AUTHOR]

Background: Participatory approaches to developing health interventions with end-users are recommended to improve uptake and use. We aimed to explore the experiences of co-designing an online-delivered pain management programme (iSelf-help) for people with persistent pain. Methods: A modified participatory action research (PAR) framework was used to co-design contents and delivery of iSelf-help. The PAR team included: (1) a patient advisory group consisting of people living with persistent pain (n = 8), (2) pain management service clinicians (n = 2), (3) health researchers (n = 3), (4) digital health experts (n = 2), (5) a health literacy expert, and (6) two Māori health researchers and our community partner who led the cultural appropriateness of iSelf-help for Māori (the Indigenous population of New Zealand). The iSelf-help co-design processes and activities of the 'PAR' team is reported in another paper. In this paper, all PAR team members were invited to share their experiences of the co-design process. Individual interviews were held with 12 PAR team members. Interview transcripts were analysed using the General Inductive Approach. Results: Five common themes were identified from the interviews: (1) Shared understanding and values of the co-design process, (2) Mismatched expectations with content creation, (3) Flexibility to share power and decision making, (4) Common thread of knowledge, and (5) Shared determination. Sustaining these themes was an overarching theme of "A coalition of the willing". Conclusions: PAR team members valued the shared determination and responsibility to co-design iSelf-help. They also acknowledged the complexities and challenges during the process related to mismatched expectations, power sharing and establishing a common thread of knowledge. Successful co-design requires a shared commitment and responsibility as a coalition to meet the aspirations of end-users, within the boundaries of time and budget. Plain English summary: Persistent non-cancer pain affects one in five people globally. Māori (the Indigenous population of New Zealand) experience a higher persistent pain prevalence than non-Māori. People living with persistent pain in New Zealand experience significant challenges in accessing specialised pain services, such as long-waiting times for referral, delays in getting a persistent pain diagnosis, lack of specialised health professionals in pain management and services that do not provide culturally responsive care. In an increasingly digital world, one way of addressing such access barriers is to provide pain services remotely. Using a participatory action research (PAR) framework, we co-designed an online version of an existing hospital-based pain management programme. The PAR 'team' included patients living with persistent pain, who have previously completed the pain management programme and other stakeholders including pain management clinicians, health researchers, technology design experts, and a health literacy expert. The PAR 'team' also included two Māori researchers, and our Māori community partner who led the cultural adaptation process of the online programme with Māori community members living with persistent pain. We invited all the PAR team members asking their experiences of co-designing an online pain management programme (iSelf-help) that is culturally adapted for Māori. Our results from interviewing 12 PAR team members suggest the shared values and determination to co-design the online programme enabled team members' journey as a coalition to be successful, however, along the way, the process was complex and challenging at times both within and between the various teams. The key factors that caused such complexity were the mismatched expectations and understandings of the project, negotiating power sharing between the various teams and establishing a common thread of knowledge. We conclude that successful co-design requires a shared commitment and responsibility as a coalition to meet the aspirations of end-users, within the limits of time and budget. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic has been pervasive in its impact on all aspects of Canadian society. Along with its pervasiveness, the disease provided unprecedented complexity to the Canadian healthcare infrastructure, eliciting varying responses from the afflicted healthcare systems in Canada. However, insights into the various parameters and complexities endured by Canadian rural physicians and rural healthcare institutions during the pandemic have been scarce. Objective: This paper explores the conditions and complexity of living and working of Rural Family Physicians (RFPs) in rural healthcare in Canada during the pandemic. Methods: Community-based participatory research was utilized as a collaborative and partnership approach, equitably engaged community members in all aspects of research, ranging from designing the research question to analyzing data. Participants of this study include RFPs with at least one year of experience working in rural Canada. Data were collected through telephone interviews and analyzed according to the six-phase guide for the data's inductive thematic analysis. Data collection halted upon saturation. Results: Five significant compiled categories reflect the lived experiences of Rural Family Physicians. 1- virtual care as a challenge or forward progress; 2- canceling in-person visits and interrupting the routine; 3- shortage of health care providers and supporting staff; 4-ongoing coping process with the pandemic guidelines; 5-COVID-19 combat fatigue. Discussion: The inception of COVID-19 has significantly impacted rural physicians across several interconnected issues. This study illuminates the lesser-known effects of the COVID-19 pandemic, which heavily impacts rural healthcare. [ABSTRACT FROM AUTHOR]

Background: Identifying mechanisms to maintain CBPR studies during an infectious disease pandemic is vital. The current paper describes the changes in methods and processes conducted within a CBPR mixed-methods study to a virtual setting during the novel coronavirus (COVID-19) pandemic. Method: The DC Community Organizing for Optimal Culinary Knowledge study with Heart (DC COOKS with Heart) was designed to assess the feasibility of a dietary behavior intervention among African-American adults that are at risk for cardiovascular disease (CVD). The study is under the umbrella of an ongoing CBPR study and community advisory board that facilitates community involvement in study design and promotes ongoing engagement with community members and leaders. The study population for D.C. COOKS with Heart consists of adult African-American individuals who live in two low-resource neighborhoods in Washington, D.C., which were impacted disproportionately by COVID. Eligible study participants who previously participated in the DC CHOC community-based studies were contacted to participate in Phase 1. The quantitative part of the mixed-methods included survey data collection. Results: Due to the pandemic, the mode of data collection for surveys changed from self-administered face-to-face to internet-based. All virtual study procedures were conducted between March and April, 2021. Anticipated benefits of the virtual setting included participant safety during the pandemic, ease of logistics for participants. Anticipated challenges included administration of electronic devices to participants, research team training, and potential threats to established trust related to the privacy and confidentiality of participants. Conclusion: The transition to a virtual setting for study procedures in a mixed-methods study was conducted successfully in terms of recruitment, retention of participants, and training of research team members. The virtual transition required established and ongoing engagement through the community advisory board and CBPR practices, institutional support through virtual research policies, collaborations with information technology-based teams, and equipment administration for the study. Trials registration: NCT04305431. Registered on March 12, 2020. [ABSTRACT FROM AUTHOR]

Background: Many community-based HIV research studies incorporate principles of greater involvement and meaningful engagement of people living with HIV (GIPA/MEPA) by training people with HIV as peer researchers. Unfortunately, there are still some aspects of research (e.g., quantitative data analysis and interpretation) where many projects fall short in realizing GIPA/MEPA principles. To address these gaps, we developed an eight-week training course that aimed to build the capacity of peer researchers around the understanding and interpretation of quantitative data and incorporating lived experience to increase the impact of the knowledge transfer and exchange phase of a study. Methods: Peer researchers (n = 8) participated from British Columbia, Alberta, and Ontario and lessons learned from the training were implemented throughout the dissemination of research findings from the People Living with HIV Stigma Index study. This paper presents the curriculum and main training components, course evaluation results, and challenges and lessons learned. The manuscript was created in collaboration with and includes the perspectives of both the peer researchers involved in the training, as well the course facilitators. Results: Throughout the course, peer researchers' self-assessed knowledge and understanding of quantitative research and data storytelling improved and, through interactive activities and practice, they gained the confidence to deliver a full research presentation. This improved their understanding of research findings, which was beneficial for discussing results with community partners and study participants. The peer researchers also agreed that learning about integrating lived experience with quantitative data has helped them to make research findings more relatable and convey key messages in a more meaningful way. Conclusions: Our training curriculum provides a template for research teams to build capacity in areas of research where peer researchers and community members are less often engaged. In doing so, we continue to uphold the principles of GIPA/MEPA and enhance the translation of research knowledge in communities most greatly affected. Plain English Summary: Engaging patient groups or community members is commonplace in HIV research where people living with HIV are trained as peer researchers. There are still however some gaps where community members are less engaged, especially in quantitative data analysis. This presents a barrier preventing them from being meaningfully engaged in research about them. To build capacity in these areas, we designed an eight-week online course that taught peer researchers about quantitative data analysis and interpretation with a focus on concepts that would be important for talking about key messages from research findings. This was used to enhance the knowledge translation and dissemination initiatives for the People Living with HIV Stigma Index study—a survey tool containing quantitative measures examining stigma and related health factors. Peer researchers agreed that their knowledge and understanding of the key quantitative data concepts improved significantly throughout the course. This increased understanding helped them discuss quantitative data with community members and study participants, which was important to ensure that research findings reach the affected communities. Peer researchers also agreed that incorporating their new data analysis knowledge with existing lived experience helped them to make findings more relatable and understandable which is critical for translating knowledge to other researchers and policy makers. Overall, our training curriculum gave peer researchers the confidence to talk about quantitative data and improve their capacity to disseminate research. This work also provides guidelines for training peer researchers and ensuring that they are meaningfully engaged in research studies they are a part of. [ABSTRACT FROM AUTHOR]

Community-based participatory research (CBPR) is increasingly standard practice for critical qualitative health research with young people who use(d) drugs in Vancouver, Canada. One aim of CBPR in this context is to redress the essentialization, erasure, and exploitation of people who use(d) drugs in health research. In this paper, we reflect on a partnership that began in 2018 between three university researchers and roughly ten young people (ages 17-28) who have current or past experience with drug use and homelessness in Greater Vancouver. We focus on moments when our guiding principles of shared leadership, safety, and inclusion became fraught in practice, forcing us in some cases to re-imagine these principles, and in others to accept that certain ethical dilemmas in research can never be fully resolved. We argue that this messiness can be traced to the complex and diverse positionalities of each person on our team, including young people. As such, creating space for mess was ethically necessary and empirically valuable for our CBPR project., (© 2022. The Author(s).)

Background: Youth violence is a global public health issue and the highest rates are reported in Low and Middle-Income Countries (LMICs). Higher rates of youth violence are reported in Sri Lanka as well. Students who fail to continue higher studies in schools or enter the universities in Sri Lanka, enroll in technical colleges and are associated with a higher number of risk factors of violence. This study aims to empower youth (15–29 years old) of a technical college in Matale district, Sri Lanka, to carry out activities among themselves to improve their knowledge, change perceptions, and violence-related behaviours. Methods: The Participatory Action Research (PAR) approach will be used. The study participants will be eighty students in a technical college in Matale district, Sri Lanka. The study period will be three years. Study participants will also be collaborators and they will involve actively in all stages of the study. A health promotion intervention will be implemented to identify determinants of youth violence and to design and implement actions while monitoring the changes. The data will be collected mainly through focus group discussions and key informant interviews both before and after the health promotion intervention. Additionally, a self-administered questionnaire will be used and the principal investigator will maintain a reflective diary. The qualitative data will be analysed thematically whereas quantitative data will be analysed using descriptive statistics. Data will be triangulated to increase the rigour of the study. Discussion: According to literature, PAR is not widely used in health promotion. The enabling and empowerment goals of health promotion are fulfilled in PAR. Thus, this will be a novel experience for researchers and this will stimulate discussion on the combination of PAR and health promotion. This study design itself promotes active participant involvement and it may generate effective youth-led, culturally appropriate actions to address youth violence. The findings will describe what works and why it works and will help Sri Lanka and similar LMICs to create safe environments for youth in educational institutes or training colleges. Plain English Summary: In this protocol paper, we propose a participatory action research based on the health promotion approach to address youth violence in Sri Lanka which has hitherto not been addressed effectively. We selected this topic in the context where youth violence has become a major public health issue in low and middle-income countries. Since, empowering young people in preventing violence is vital, this study aims to empower the youth of a technical college in Matale district, Sri Lanka to carry out activities among themselves to address youth violence. Thus, we will select eighty students from a Sri Lankan technical college for the study. The students will involve themselves in all stages of the study as research collaborators. We will collectively identify the risk factors of youth violence, design and implement actions to address those risk factors with active youth involvement. The data will be mainly collected before and after the actions to identify the changes in knowledge, perceptions and behaviours that have been taken following the actions. The students who participate in the study will ultimately gain knowledge and skills to address violence in their college and other settings. Further, it will reduce their risk of becoming an offender or a victim of violence. This study is expected to generate effective youth-led, culturally appropriate actions to address youth violence in a selected setting. The findings will be helpful for Sri Lanka and similar low and middle-income countries to create safe environments for youth in educational institutes. [ABSTRACT FROM AUTHOR]

Background: There are concerns about the representation of vulnerable and underrepresented racial-ethnic minorities in biomedical and public health research, particularly when the research requires the collection of biospecimens. The current paper reports on the acceptability, feasibility, and ethics of saliva collection in a study examining the relationship between chronic stressors among mostly mixed-status, Latinx families (N = 30) during high immigration enforcement.Methods: Data for this study included anthropometric measures and salivary biospecimens from each family member (N = 110) and a household survey. Data for this analysis are from ethnographic field notes, which were analyzed using a bricolage of critical ethnography and case study analysis techniques.Results: We discuss the feasibility, aversions, acceptability, and ethical implications of integrating salivary biomarkers with Mexican-origin mixed-status families living in an area with restrictive immigration enforcement policies. We present the recruitment and data collection strategies used by the research team to gain participants' trust, retain families, and maintain confidentiality.Conclusion: We recommend that researchers who obtain biospecimens from Latinx, Mexican-origin, and/or immigrant populations answer the participants' questions honestly and without fear that they will not understand the science to obtain voluntary assent and consent. We recommend that researchers be knowledgeable of the sociopolitical context that the Latinx, immigrant, and in particular, mixed-status families inhabit so that they are prepared to provide informational resources. Finally, we think it is imperative that the study team in the field be bilingual, multicultural Latinx persons who identify with the community. [ABSTRACT FROM AUTHOR]

Background: Process evaluation can illuminate barriers and facilitators to intervention implementation as well as the drivers of intervention outcomes. However, few obesity intervention studies have documented process evaluation methods and results. Community-based participatory research (CBPR) requires that process evaluation methods be developed to (a) prioritize community members' power to adapt the program to local needs over strict adherence to intervention protocols, (b) share process evaluation data with implementers to maximize benefit to participants, and (c) ensure partner organizations are not overburdened. Co-designed with low-income parents using CBPR, Communities for Healthy Living (CHL) is a family-centered intervention implemented within Head Start to prevent childhood obesity and promote family well-being. We are currently undertaking a randomized controlled trial to test the effectiveness of CHL in 23 Head Start centers in the greater Boston area. In this protocol paper, we outline an embedded process evaluation designed to monitor intervention adherence and adaptation, support ongoing quality improvement, and examine contextual factors that may moderate intervention implementation and/or effectiveness.Methods: This mixed methods process evaluation was developed using the Pérez et al. framework for evaluating adaptive interventions and is reported following guidelines outlined by Grant et al. Trained research assistants will conduct structured observations of intervention sessions. Intervention facilitators and recipients, along with Head Start staff, will complete surveys and semi-structured interviews. De-identified data for all eligible children and families will be extracted from Head Start administrative records. Qualitative data will be analyzed thematically. Quantitative and qualitative data will be integrated using triangulation methods to assess intervention adherence, monitor adaptations, and identify moderators of intervention implementation and effectiveness.Discussion: A diverse set of quantitative and qualitative data sources are employed to fully characterize CHL implementation. Simultaneously, CHL's process evaluation will provide a case study on strategies to address the challenges of process evaluation for CBPR interventions. Results from this process evaluation will help to explain variation in intervention implementation and outcomes across Head Start programs, support CHL sustainability and future scale-up, and provide guidance for future complex interventions developed using CBPR.Trial Registration: ClinicalTrials.gov, NCT03334669 . Registered on October 10, 2017. [ABSTRACT FROM AUTHOR]

Background: Knowledge translation (KT) is a dynamic and iterative process that includes synthesis, dissemination, exchange and ethically sound application of knowledge to yield beneficial outcomes for society. Effective KT requires researchers to play an active role in promoting evidence uptake. This paper presents a systematised review of evidence on low- and middle-income country (LMIC) researchers' KT capacity, practice and interventions for enhancing their KT practice (support) with the aim of identifying gaps and informing future research and interventions.Methods: An electronic search for peer-reviewed publications focusing on LMIC researchers' KT capacity, practice and support across all academic fields, authored in English and from the earliest records available to February 2019, was conducted using PubMed and Scopus. Selected studies were appraised using the Mixed Methods Appraisal Tool, data pertaining to publication characteristics and study design extracted, and an a priori thematic analysis of reported research findings completed.Results: The search resulted in 334 screened articles, of which 66 met the inclusion criteria. Most (n = 43) of the articles presented original research findings, 22 were commentaries and 1 was a structured review; 47 articles reported on researchers' KT practice, 12 assessed the KT capacity of researchers or academic/research institutions and 9 reported on KT support for researchers. More than half (59%) of the articles focused on sub-Saharan Africa and the majority (91%) on health research. Most of the primary studies used the case study design (41%). The findings suggest that LMIC researchers rarely conduct KT and face a range of barriers at individual and institutional levels that limit their KT practice, including inadequate KT knowledge and skills, particularly for communicating research and interacting with research end-users, insufficient funding, and inadequate institutional guidelines, structures and incentives promoting KT practice. Furthermore, the evidence-base on effective interventions for enhancing LMIC researchers' KT practice is insufficient and largely of weak quality.Conclusions: More high-quality research on researchers' KT capacity, practice and effective KT capacity strengthening interventions is needed. Study designs that extend beyond case studies and descriptive studies are recommended, including better designed evaluation studies, e.g. use of realist approaches, pragmatic trials, impact evaluations, implementation research and participatory action research. [ABSTRACT FROM AUTHOR]

Background: Arkansas has the largest population of Marshallese Pacific Islanders residing in the continental United States. Marshallese are disproportionately burdened by poorer maternal and infant health outcomes. Exclusive breastfeeding can prevent or help mitigate maternal and infant health disparities. However, exclusive breastfeeding among United States Marshallese communities remains disproportionately low, and the reasons are not well documented. This paper describes the protocol of a mixed-methods concurrent triangulation longitudinal study designed to explore the beliefs and experiences that serve as barriers and/or facilitators to exclusive breastfeeding intention, initiation, and duration among Marshallese mothers in northwest Arkansas., Methods: The mixed-methods design collects qualitative and quantitative data during simultaneous data collection events, at third trimester, six weeks postpartum, and six months postpartum. Quantitative and qualitative data will be analyzed separately and then synthesized during the interpretation phase. The research team will disseminate results to study participants, research stakeholders, the broader Marshallese community, and fellow researchers., Discussion: Findings and results will be presented in subsequent manuscripts upon completion of the study. This study will be an important first step to better understand beliefs and experiences to exclusive breastfeeding intention, initiation, and duration in this community and will inform tools and interventions to help improve health outcomes. The study will also aid in filling the gap in research and providing essential information on the infant feeding beliefs and barriers among a Marshallese community in Arkansas., (© 2021. The Author(s).)

Background: Adolescence and young adulthood is an important period for substance use initiation and related harms. In the context of the ongoing opioid crisis, the risks for youth (ages 16–29) who use opioids are particularly heightened. Despite recommendations to adopt a developmentally appropriate and comprehensive approach to reduce opioid-related harms among youth, data continue to show that youth are not adequately engaged in opioid treatments and encounter many barriers. The aim of this study is to identify youth-centered opportunities for improving opioid treatment services. Methods: This paper reports multi-site qualitative findings from youth participating in the 'Improving Treatment Together' project, a community-based participatory project being conducted in British Columbia and Alberta, two western Canadian provinces that have been dramatically impacted by the opioid crisis. Qualitative data were collected during three workshops with youth who used opioids and accessed opioid treatment services in the prior 12 months. These workshops were conducted in three communities following the core elements of human-centered co-design. A multi-site qualitative analysis was conducted to identify within- and between-site themes surrounding youths' needs for improving opioid treatment service experiences and outcomes. Results: Three overarching needs themes were identified from across the communities. The first reflected youths' difficulties finding and staying connected to opioid treatment services, with the overarching need theme suggesting opportunities to reduce organizational and systems-related barriers to care, such as waiting times and wider information about service availability. The second area of need was rooted in youths' feelings of judgment when accessing services. Consequently, opportunities to increase respectful and empathic interactions were the overarching need. The final theme was more nuanced across communities and reflected opportunities for an individualized approach to opioid treatment services that consider youths' unique basic safety, social, and health needs. Conclusions: This study identifies fundamental directions for the operationalization and implementation of youth-centered opioid treatment services. These directions are contextualized in youths' lived experiences accessing services in their local communities, with overarching themes from across sites strengthening their transferability to other settings. [ABSTRACT FROM AUTHOR]

Background: Homelessness is becoming an international public health issue in most developed countries, including Canada. Homelessness is regarded as both political and socioeconomic problems warranting broad and consistent result-oriented approaches.Methods: This paper represents the qualitative findings of a project that explored risk factors associated with family homelessness and strategies that could mitigate and prevent homelessness among families using a focused ethnographic study guided by the principles of participatory action research (PAR). The sample includes 36 family members residing at a family shelter who participated in focus groups over two years (between April 2016 and December 2017). Most of the participants were single-parent women.Results: The analysis yielded five major themes including, life challenges, lack of understanding of the system, existing power differentials, escaping from hardship, and a theme of proposed solutions for reducing family homelessness in the community.Conclusion: The findings illustrated the complex nature of family homelessness in Ontario; that the interaction of multiple systems can put families at risk of homelessness. Findings from this study underscore the need for urgent housing protocols aimed at educating homeless families on how to navigate and understand the system, enhance their conflict resolution skills, and develop strategies beyond relocation to help them to cope with difficulties with housing. [ABSTRACT FROM AUTHOR]

Introduction: This paper details a subset of the findings from a participatory action research project exploring a palliative intervention in long-term care sites across Canada. The findings presented in this paper relate to understanding compassion within the context of a palliative approach to long-term care.Methods: Findings presented are drawn from qualitative interviews and focus groups with residents, family members, healthcare providers, and managers from 4 long-term care sites across 4 provinces in Canada. In total, there were 117 individuals (20 residents, 16 family members, 72 healthcare providers, and 9 managers) who participated in one of 19 focus groups. Data was analyzed by multiple members of the research team in accordance with thematic analysis. Individual concepts were organized into themes across the different focus groups and the results were used to build a conceptual understanding of compassion within Long Term Care .Findings: Two themes, each comprised of 5 sub-themes, emerged from the data. The first theme 'Conceptualizing Compassion in Long-Term Care generated a multidimensional understanding of compassion that was congruent with previous theoretical models. 'Organizational Compassion: resources and staffing', the second major theme, focused on the operationalization of compassion within the practice setting and organizational culture. Organizational Compassion subthemes focused on how compassion could support staff to enact care for the residents, the families, one another, and at times, recognizing their pain and supporting it through grief and mourning.Conclusions: Results suggest that compassion is an essential part of care and relationships within long-term care, though it is shaped by personal and professional relational aspects of care and bound by organizational and systemic issues. Findings suggest that compassion may be an under-recognised, but essential element in meeting the promise of person-centred care within long-term care environments. [ABSTRACT FROM AUTHOR]

Background: A number of studies have identified patient-, provider-, and community-level barriers to effective diabetes management among South Asian Americans, who have a high prevalence of type 2 diabetes. However, no multi-level, integrated community health worker (CHW) models leveraging health information technology (HIT) have been developed to mitigate disease among this population. This paper describes the protocol for a multi-level, community-clinical linkage intervention to improve glycemic control among South Asians with uncontrolled diabetes. Methods: The study includes three components: 1) building the capacity of primary care practices (PCPs) to utilize electronic health record (EHR) registries to identify patients with uncontrolled diabetes; 2) delivery of a culturally- and linguistically-adapted CHW intervention to improve diabetes self-management; and 3) HIT-enabled linkage to culturally-relevant community resources. The CHW intervention component includes a randomized controlled trial consisting of group education sessions on diabetes management, physical activity, and diet/nutrition. South Asian individuals with type 2 diabetes are recruited from 20 PCPs throughout NYC and randomized at the individual level within each PCP site. A total of 886 individuals will be randomized into treatment or control groups; EHR data collection occurs at screening, 6-, 12-, and 18-month. We hypothesize that individuals receiving the multi-level diabetes management intervention will be 15% more likely than the control group to achieve ≥0.5% point reduction in hemoglobin A1c (HbA1c) at 6-months. Secondary outcomes include change in weight, body mass index, and LDL cholesterol; the increased use of community and social services; and increased health self-efficacy. Additionally, a cost-effectiveness analysis will focus on implementation and healthcare utilization costs to determine the incremental cost per person achieving an HbA1c change of ≥0.5%. Discussion: Final outcomes will provide evidence regarding the effectiveness of a multi-level, integrated EHR-CHW intervention, implemented in small PCP settings to promote diabetes control among an underserved South Asian population. The study leverages multisectoral partnerships, including the local health department, a healthcare payer, and EHR vendors. Study findings will have important implications for the translation of integrated evidence-based strategies to other minority communities and in under-resourced primary care settings. Trial registration: This study was registered with clinicaltrials.gov: NCT03333044 on November 6, 2017. [ABSTRACT FROM AUTHOR]

Background: Most pregnancies among adolescent girls and young women aged 15-24 years occur in low- and middle-income countries (LMICs), and do so within marriage. The mortality rates and pregnancy-related morbidities are significantly higher among the women of younger age group in many South Asian and Sub-Saharan African countries. This paper presents a review of the available evidence on the effectiveness of community-based health interventions to improve the reproductive health status of young married couples in LMICs.Method: We carried out a systematic review of research studies and evaluation reports of different community-level initiatives in improving access to contraception, pregnancy care and safe abortion services by young married couples, where women were in the age-group of 15-24 years.Results: Of the 14 projects, which met inclusion criteria, eight met the quality criteria and were included in the review (five from India, two from Nepal and one from Malawi). Our analysis shows that community-based interventions consisting of counseling of young married women, and their husbands, family and community members, as well as capacity building of health workers were some of the effective measures in increasing contraceptive use, delaying pregnancy and improving pregnancy care. Stratifying young women in line with their specific reproductive health needs (newly married woman, pregnant woman, mother of one/more children) was found to be a successful innovative strategy. None of these projects explicitly addressed improving access to safe abortion care.Conclusion: Our review suggests that multi-layered community-based interventions, targeting young married women, their families and the health system can improve utilization of reproductive health services among young couples in resource-constrained settings. There is less focus on strategies to delay first pregnancy as compared to spacing among young women. Further, family and community level barriers in most of the project settings restricted its effective implementation. The paper emphasizes the need for further research to fill the knowledge gaps that exist about improving utilization of reproductive healthcare services, especially safe abortion care among young married women in LMICs. [ABSTRACT FROM AUTHOR]

Background: Community organisations and community members are increasingly being involved in health research projects worldwide as part of the engagement movement. Achieving deeper forms of community engagement like partnership demands that decision-making power be shared with community partners. However, how can community partners assess if meaningful engagement and shared decision-making will be possible when approached by prospective research partners? In this paper, we explore how community organisations decide to join health research projects when approached by health researchers., Methods: Case study research was undertaken on a health systems research project in Karnataka, India called Participation for Local Action, which was carried out by local researchers in partnership with the Zilla Budakattu Girijana Abhivrudhhi Sangha, a community development organisation. In-depth interviews were conducted with the researchers, Sangha leaders and field investigators from their community., Results: Thematic analysis identified two main themes - 'context' and 'deciding to engage'. The Sangha's experience offers lessons to other community organisations that can help them when deciding to engage with researchers in terms of what features to look for in research partners and in proposed research projects, what requests to make of prospective research partners, and what sorts of outcomes or partnership agreements to accept. These lessons may be especially applicable in contexts where relationships of trust already exist between partners and where they have the skills to lead data collection and analysis., Conclusions: We hope that this guidance will help empower community organisations to select good research partners and promote more equitable partnerships between community partners and academic researchers.

Background: Community engagement is increasingly seen as key to improving healthcare systems and to increasing communities' involvement in the shaping of their own communities. This paper describes how 'community engagement' (CE) is understood and being operationalised in the Dutch healthcare system by investigating the CE approaches being implemented in six different regions and by examining engaged citizens' and professionals' experiences of those CE approaches., Methods: For this realist study, interviews and focus groups were held with citizens (16) and professionals (42) involved in CE approaches in the six regions. Additionally, CE-related activities were observed to supplement interview data., Results: This study shows that citizens and professionals defined and experienced CE differently and that they differed in who they felt had ownership of CE. The CE approaches implemented in community-led initiatives and organisationally-led initiatives varied accordingly. Furthermore, both citizens and professionals were searching for meaningful ways for citizens to have more control over healthcare in their own communities., Conclusion: CE can be improved by, first of all, developing a shared and overarching vision of what CE should look like, establishing clear roles and remits for organisations and communities, and taking active measures to ensure CE is more inclusive and representative of harder-to-reach groups. At the same time, to help ensure such shared visions do not further entrench power imbalances between citizens and professionals, professionals require training in successful CE approaches.

Background: Despite numerous campaigns and interventions to end female genital mutilation (FGM), the practice persists across the world, including the European Union (EU). Previous interventions have focused mainly on awareness raising and legislation aimed at criminalizing the practice. Limited evidence exists on the effectiveness of interventions due in part to the lack of systematic evaluation of projects. This paper presents an evaluation of the REPLACE Approach, which is a new methodology for tackling FGM based on community-based behaviour change and intervention evaluation., Methods: We developed, trialed and evaluated the REPLACE Approach through extensive engagement with eight FGM affected African diaspora communities in five EU countries. We employed qualitative and quantitative tools to obtain data to inform the development, implementation and evaluation of the Approach. These included community-based participatory action research, questionnaires and community readiness assessments. The research took place between 2010 and 2016., Results: Findings suggested that the Approach has the capability for building the capacities of FGM affected communities to overturn social norms that perpetuate the practice. We observed that community-based action research is a useful methodology for collecting data in FGM intervention settings as it allows for effective community engagement to identify, educate and motivate influential community members to challenge the practice, as well as obtaining useful information on the beliefs and norms that shape the practice. We also found that community readiness assessments, pre and post intervention, were useful for tailoring interventions appropriately and for evaluating changes in attitudes and behaviour that may have resulted from the interventions., Conclusion: This evaluation has demonstrated that the REPLACE Approach has the potential, over time, to bring about changes in norms and attitudes associated with FGM. Its strengths lay in the engagement with influential community members, in building the capacity and motivation of community members to undertake change, in recognising contextual differences in the barriers and enablers of FGM practice and in tailoring interventions to local community readiness to change, and then evaluating interventions to re-inform implementation. The next steps would therefore be to implement the Approach over a longer time frame to assess if it results in measurable change in behaviour.

Background: The objectives are to: 1) describe engagement processes used to prioritize and address regional comprehensive cancer control needs among a Community-Academic Advisory Board (CAB) in the medically-underserved, rural Appalachian region, and 2) detail longitudinal CAB evaluation findings. Methods: This three-year case study (2017–2020) used a convergent parallel, mixed-methods design. The approach was guided by community-based participatory research (CBPR) principles, the Comprehensive Participatory Planning and Evaluation process, and Nine Habits of Successful Comprehensive Cancer Control Coalitions. Meeting artifacts were tracked and evaluated. CAB members completed quantitative surveys at three time points and semi-structured interviews at two time points. Quantitative data were analyzed using analysis of variance tests. Interviews were audio recorded, transcribed, and analyzed via an inductive-deductive process. Results: Through 13 meetings, Prevention and Early Detection Action Teams created causal models and prioritized four cancer control needs: human papillomavirus vaccination, tobacco control, colorectal cancer screening, and lung cancer screening. These sub-groups also began advancing into planning and intervention proposal development phases. As rated by 49 involved CAB members, all habits significantly improved from Time 1 to Time 2 (i.e., communication, priority work plans, roles/accountability, shared decision making, value-added collaboration, empowered leadership, diversified funding, trust, satisfaction; all p <.05), and most remained significantly higher at Time 3. CAB members also identified specific challenges (e.g., fully utilizing member expertise), strengths (e.g., diverse membership), and recommendations across habits. Conclusion: This project's equity-based CBPR approach used a CPPE process in conjunction with internal evaluation of cancer coalition best practices to advance CAB efforts to address cancer disparities in rural Appalachia. This approach encouraged CAB buy-in and identified key strengths, weaknesses, and opportunities that will lay the foundation for continued involvement in cancer control projects. These engagement processes may serve as a template for similar coalitions in rural, underserved areas. Plain English summary: There has been notable progress among state and local cancer coalitions in developing and implementing comprehesive cancer control plans. Yet, gaps exist in rural communities and cancer remains a leading cause of death in rural populations. This paper reports on how the involvement of a Community-Academic Advisory Board (CAB) helped to prioritize cancer control and research needs in the medically-underserved, rural Appalachian region. CAB members were asked to participate in meetings and to share their experiences through surveys and interviews. Through this three-year process, four cancer control needs were prioritized: human papillomavirus vaccination, tobacco control, colorectal cancer screening, and lung cancer screening. Also, over the course of the project, CAB members' experiences improved, including: communication, priority work plans, roles/accountability, shared decision making, value-added collaboration, empowered leadership, diversified funding, trust, satisfaction. During the interviews, CAB members identified specific challenges, strengths, and recommendations. The opportunities and barriers at building and sustaining capacity as well as advancing a community-driven research agenda to address cancer disparities in rural Appalachia is discussed. [ABSTRACT FROM AUTHOR]

Background: Men's Sheds ("Sheds") offer a unique opportunity to reach a captive audience of "hard-to-reach" men. However, attempts to engage Sheds in structured health promotion programmes must respect the ethos of Sheds as highly variable, autonomous, non-structured spaces. This paper captures the key methodologies used in "Sheds for Life' (SFL), a men's health initiative tailored to the Shed setting.Methods: A hybrid effectiveness-implementation study design is used to test effectiveness and implementation outcomes across multiple levels (participant, provider, organisational and systems levels). A dynamic, iterative and collaborative process seeks to address barriers and translation into the real world context. Using a community-based participatory research approach and guided by established implementation frameworks, Shed members ('Shedders') assume the role of key decision makers throughout the evaluation process to promote the systematic uptake of SFL across Shed settings. The protocols pertaining to the development, design and implementation of SFL and the evaluation of impact on participants' health and wellbeing outcomes up to 12 months are outlined.Conclusions: There is a dynamic interplay between the intervention characteristics of SFL and the need to assess and understand the diverse contexts of Sheds and the wider implementation environment. A pragmatic and context-specific design is therefore favoured over a tightly controlled efficacy trial. Documenting the protocols used to evaluate and implement a complex multi-level co-developed intervention such as SFL helps to inform gender-specific, community-based men's health promotion and translational research more broadly.Trial Registration: This study has been retrospectively registered with the 'International Standard Randomised Controlled Trial Number' registry ( ISRCTN79921361 ) as of the 5th of March 2021. [ABSTRACT FROM AUTHOR]

Background: Frontline managers and health service providers are constrained in many contexts from responding to community priorities due to organizational cultures focused on centrally defined outputs and targets. This paper presents an evaluation of the Verbal Autopsy with Participatory Action Research (VAPAR) programme-a collaborative learning platform embedded in the local health system in Mpumalanga, South Africa-for strengthening of rural primary healthcare (PHC) systems. The programme aims to address exclusion from access to health services by generating and acting on research evidence of practical, local relevance.Methods: Drawing on existing links in the provincial and national health systems and applying rapid, participatory evaluation techniques, we evaluated the first action-learning cycle of the VAPAR programme (2017-19). We collected data in three phases: (1) 10 individual interviews with programme stakeholders, including from government departments and parastatals, nongovernmental organizations and local communities; (2) an evaluative/exploratory workshop with provincial and district Department of Health managers; and (3) feedback and discussion of findings during an interactive workshop with national child health experts.Results: Individual programme stakeholders described early outcomes relating to effective research and stakeholder engagement, and organization and delivery of services, with potential further contributions to the establishment of an evidence base for local policy and planning, and improved health outcomes. These outcomes were verified with provincial managers. Provincial and national stakeholders identified the potential for VAPAR to support engagement between communities and health authorities for collective planning and implementation of services. Provincial stakeholders proposed that this could be achieved through a two-way integration, with VAPAR stakeholders participating in routine health planning and review activities and frontline health officials being involved in the VAPAR process. Findings were collated into a revised theory of change.Conclusions: The VAPAR learning platform was regarded as a feasible, acceptable and relevant approach to facilitate cooperative learning and community participation in health systems. The evaluation provides support for a collaborative learning platform within routine health system processes and contributes to the limited evaluative evidence base on embedded health systems research. [ABSTRACT FROM AUTHOR]

Background: Crop residue burning adversely affects air quality and consequently human health. India, being one of the largest agro-economies of the world, produces around 500 Million tonnes of crop residue annually most of which is burnt on-farm. However, integrated studies that simultaneously quantify the effects of crop residue burning while exploring the subjective determinants of the practice are lacking in India. This paper describes the protocol for a longitudinal mixed methods research study employing a community-based participatory approach to fill this gap.Methods: Both quantitative and qualitative data will be collected in a rural setting of the central Indian province of Madhya Pradesh, over 1 year. A steering committee comprising of the research team and community representatives will be formed. The proportion of cultivable land burnt in one crop burning season will be estimated. The association between crop residue burning, level of ambient air pollutants, and pulmonary function of village residents will be determined. Focus groups, interviews, and participatory rural appraisal methods will be used to explore stakeholder perspectives about crop residue burning. Potential barriers and opportunities for substituting burning with an alternative crop residue management technique will be ascertained as the basis for future interventions. Ethics approval has been obtained from the Institutional Ethics Committee of the National Institute for Research in Environmental Health (No: NIREH/BPL/IEC/2019-20/1494, dt 06/01/2020).Discussion: This manuscript describes the protocol for a novel community-based participatory study to investigate thoroughly the phenomenon of crop residue burning from the perspective of the agricultural community through their active collaboration. The lack of comprehensive evidence regarding the factors responsible for crop residue burning in India underlines the importance of implementing this study protocol to fill in this critical gap in knowledge. While acknowledging that findings of this study will be not generalizable to agricultural communities other than the one studied, it is expected that the study will generate baseline evidence that might be beneficial in developing and implementing an appropriate intervention strategy. [ABSTRACT FROM AUTHOR]

Background: In Ontario, Canada, Indigenous communities experience some of the province's worst drinking water, with issues ranging from deteriorating water quality to regulatory problems and lack of support. When water is known, or suspected, to be unsafe for human consumption, communities are placed under a Drinking Water Advisory. Between 2004 and 2013, approximately 70% of all on-reserve communities in Ontario were under at least one Drinking Water Advisory. Despite the widespread impact of Drinking Water Advisories on health and wellbeing, little is known about First Nation individuals' perceptions and experiences living with a Drinking Water Advisory. This study presents information shared by members of a community who have lived with Boil Water Advisories on and off for many years, and a long-term Boil Water Advisory since 2017. The goal of this paper is to unpack and explore the Boil Water Advisories from the perspective of community members and provide considerations for current and future Boil Water Advisory management. Methods: Methodological choices were driven by the principles of community-based participatory research. Two data collection methodologies were employed: hard copy surveys and interviews. Results: Forty-four individuals (19.5%) completed a survey. Eight Elders and 16 key informants participated in 20 interviews. Respondents expressed varying degrees of uncertainty regarding protective actions to take while under a Boil Water Advisory. Further, 79% of men but only 46% of women indicated they always adhere to the Boil Water Advisory. Knowledge gaps that could lead to risky behaviours were also identified. Finally, Boil Water Advisories were demonstrated to have physical, financial, and time impacts on the majority of respondents. Conclusions: A direct outcome was the identification of a critical need to reinforce best practices for health protection through community education and outreach. More broadly, Chief and Council were able to use the findings to successfully advocate for improved drinking water for the community. Additionally, benefits of participatory research and community ownership include enhanced local research capacity, and increased awareness of, and desire for, research to inform decisions. [ABSTRACT FROM AUTHOR]

Background: This paper explores strategies to engage community stakeholders in efforts to address the effects of traffic-related air pollution (TRAP). Communities of color and low-income communities are disproportionately impacted by environmental threats including emissions generated by major roadways.Methods: Qualitative instrumental case study design was employed to examine how community-level factors in two Massachusetts communities, the City of Somerville and Boston's Chinatown neighborhood, influence the translation of research into practice to address TRAP exposure. Guided by the Interactive Systems Framework (ISF), we drew on three data sources: key informant interviews, observations and document reviews. Thematic analysis was used.Results: Findings indicate political history plays a significant role in shaping community action. In Somerville, community organizers worked with city and state officials, and embraced community development strategies to engage residents. In contrast, Chinatown community activists focused on immediate resident concerns including housing and resident displacement resulting in more opposition to local municipal leadership.Conclusions: The ISF was helpful in informing the team's thinking related to systems and structures needed to translate research to practice. However, although municipal stakeholders are increasingly sympathetic to and aware of the health impacts of TRAP, there was not a local legislative or regulatory precedent on how to move some of the proposed TRAP-related policies into practice. As such, we found that pairing the ISF with a community organizing framework may serve as a useful approach for examining the dynamic relationship between science, community engagement and environmental research translation. Social workers and public health professionals can advance TRAP exposure mitigation by exploring the political and social context of communities and working to bridge research and community action. [ABSTRACT FROM AUTHOR]

There is limited literature about how to best "do" community involvement in research and no one model of community involvement in research that has been shown to be more effective than others. This paper presents one way to receive the input of people with experiences relevant to research with marginalised groups, including people who use and inject drugs. The UNSW Community Reference Panel is a virtual network of people from across Australia who are engaged to provide input and consultation on research design, processes, materials, and outputs. Although this panel goes some way towards community involvement and consultation in the research process, it does not take the place of other aspects of community governance and ownership, especially as informed by principles of research with Indigenous peoples. This model is an example of a means to bring the voices and perspectives of people who are generally excluded from the research and decision-making structures that affect their lives, including people who inject drugs, to influence the questions that are asked in research, how research gets done, and to what purpose research findings are put.