Community-based Participatory Research Methodology Research Articles

Rethinking Water Governance in the Saskatchewan River Delta Through Indigenous Relational Worldviews

Abstract This study critically examines the implications of integrating Indigenous relational worldviews into the water governance framework of the Saskatchewan River Delta. Using a relational theoretical framework and community-based participatory research methodology, both Indigenous community members and non-Indigenous researchers collectively examine the negative impacts of Western water governance policies and practices on the Métis community residing in Cumberland House, located in northeast Saskatchewan, Canada. Through Indigenous traditional water story-sharing methods with Indigenous Elders and Knowledge Keepers, our focus centres on Indigenous interpretations and ways of knowing the Delta. The community highlighted the pervasive influence of power dynamics and political agendas in the governance of the Delta. As such, we emphasise the necessity of challenging settler colonial systems and structures and reinvigorating Indigenous worldviews for water governance. By doing so, we advocate for the advancement of Indigenous sovereignty and self-determination in their relationship with land and water, thereby promoting the meaningful implications of the Truth and Reconciliation Commission Calls to Action.

Abstract 1005: A three-decade-long community-based participatory research among India and Bhutan’s ethnic minorities led to the discovery of 32 unique medicinal plants having anti-cancer properties

Abstract The country of Bhutan, and India’s Northeast is an economically deprived region inhabited by diverse groups of indigenous and underserved communities. They live in mostly rural areas, where cancer disparity is very high. On the other hand, they have rich traditional knowledge systems including tantra philosophies (remnant of the Vedic age philosophy), herbal medicinal practice, and spiritual practices that can be traced back to India’s Vedic age. To harness this traditional knowledge to reduce cancer disparity, we have taken an indigenous knowledge system (IKS) based approach (1) and initiated a community-based participatory research (CBPR) program in 1998 to conduct public health research in tuberculosis and cancer (2,3). Using this CBPR program, we have unraveled a Vedic age philosophy of Vedic Jiva Upkara Cikitsha Tantra (Vedic altruism-based medicinal system) (2,3). Specially, using the CBPR program we seek to identify novel herbal medicinal agents having anti-cancer activities. Methodologies: We used the CBPR methodologies of focused group discussion (FGD), debate, and community social work with various indigenous communities living in the Sualkuchi-Hajo cultural complex of Assam, Roing of Arunachal Pradesh, and Mongar of Bhutan. Since 1994, BD has conducted CBPR through the KaviKrishna Telemedicine Care. We have retrospectively analyzed the data of FGD, and suppositional reasoning (tarka) with the community healers, various Hindu, and Buddhist ethnic spiritual organizations of the region. Thematic analysis and the grounded theory method were applied to organize the data. The resulting database of herbal medicinal plants was searched in the scientific database to find the scientific names. Out of the 36 medicinal plants, we have prepared herbal extracts of 10 medicinal plants and then tested for their anti-cancer efficacy at the KaviKrishna Laboratory. Results: We have found the names of 32 plants used by the indigenous healers practicing the Vedic Jiva Upakara Cikitsha Tantra. We also found that these healers used curd-made whey protein concentrate, special soil, and fecal extracts to treat cancer (3). Our CBPR process also led to the research capacity building in the Sualkuchi-Hajo community. Conclusion: The study unraveled a unique cancer-care-related philosophy of Vedic Altruism. Our work indicates that IKS-based CBPR can equitably involve researchers and community members to develop a partnership for the process of knowledge emergence. We found that CBPR-based research takes new meaning because of the unique perspectives that inform the ways that research studies take shape for knowledge emergence.

Community-Based Participatory Research and Fat Studies: Tensions and Alignments

Community-based participatory research (CBPR) is an overarching methodology taken up across various disciplines. Rather than a specific approach, CBPR encompasses varied action-based methodologies. While many disciplines use CBPR methodologies in their work, Fat Studies has yet to broadly create research that uses CBPR methodologies. Fat Studies counters many dominant fields that examine and pathologize the body. Rather than viewing Fat as a site of moral panic and concern, Fat Studies values the subjectivity, fluidity, and embodied experience of what it means to be Fat. As CBPR methodologies share a commitment towards critical, emancipatory, and social action research, the potential intersection with Fat Studies is noteworthy, however limited literature at this intersection exists. In this article, we highlight the alignments and tensions between CBPR and Fat Studies while offering future directions for scholars at this intersection.

A Participatory Research Workshop in Northern India—A Transnational Collaboration

In this article, we outline a transnational project shaped by Sustainable Development Goal (SDG) 10: “Reduce inequality within and among countries”. SDG 10 provides a cross-cutting approach insofar as the targets refer to income inequality, discriminatory practices and policies, migration policies, and development aid and assist researchers as well as policymakers and community leaders with implementation. The project builds on two online courses for researchers early in their careers: one that covers the research context and one that covers preparing a research question and approach. Community-based participatory research (CBPR) is an impactful method of exploring social inequalities and applying research to solve practical problems. For students to learn the basic steps of CBPR, a workshop was conducted with a rural NGO in India that included researchers from three countries, staff members, and community members. The topic, “waste management”, was chosen by the local NGO and integrated with the university program through a CBPR methodology workshop. This article describes the background, learning process, and results of the participatory research workshop and focuses on the collaboration of students, staff, and community members as well as the application of research for action.

How Societal Forces of Change Are Transforming Youth Physical Activity Promotion in North America.

Climate change, increasing recognition of institutionalized discrimination, and the COVID-19 pandemic are large-scale, societal events (ie,forces of change) that affect the timing, settings, and modes of youth physical activity. Despite the impact that forces of change have on youth physical activity and physical activity environments, few studies consider how they affect physical activity promotion. The authors use 2 established frameworks, the ecological model of physical activity and the youth physical activity timing, how, and setting framework, to highlight changes in physical activity patterns of youth in North America that have resulted from contemporary forces of change. North American countries-Canada, Mexico, and the United States-have faced similar but contextually different challenges for promoting physical activity in response to climate change, increasing recognition of institutionalized discrimination, and the COVID-19 pandemic. Innovative applications of implementation science, digital health technologies, and community-based participatory research methodologies may be practical for increasing and sustaining youth physical activity in response to these forces of change. Thoughtful synthesis of existing physical activity frameworks can help to guide the design and evaluation of new and existing physical activity initiatives. Researchers, practitioners, and policymakers are encouraged to carefully consider the intended and unintended consequences of actions designed to respond to forces of change.

Developing Human Capability to Believe in Bhutan

The Kingdom of Bhutan is an exemplar of ongoing sustainable transformation. From realising over 20% growth in literacy rates in the last 15 years to sustaining an average economic growth of 7.5% per year since 1980 to becoming the world’s first carbon-negative country with forests covering over 70% of the land, Bhutan quietly continues to lead the way with unique foresight and resilience. This tradition of leadership continued in 2020 when His Majesty, the Fifth King of Bhutan’s urgently called upon Bhutanese civil servants to ‘prepare for the future’ as a ‘self-reliant’ nation. In response, the Royal Civil Service Commission of Bhutan launched a development accelerator called the ‘Nurturing Leadership Program’ which leveraged community-based participatory research methodologies to launch 125 innovation projects and build leadership capacity among over 625 civil servants. In total, 98.6% of more than 3,000 stakeholders surveyed at the end of the program agreed that project efforts positively impacted target outcomes, demonstrating that Bhutan can continue its unique role as a human capability incubator by transforming talent, organisation, leadership and HR into a shared and sustained brand of believe.

Exploring the utility of community‐based participatory research to investigate mindfulness‐based interventions in schools

AbstractMindfulness‐based programs have become popular, empirically supported treatment modalities for increasing positive psychological outcomes for children and adolescents, with an overall effect size of 0.4. We argue for implementing community‐based participatory research (CBPR) methodology to investigate the specific effects of mindfulness‐based intervention (MBI) programs within schools. While interest in MBIs in schools has resulted in their increased application, research based on CBPR methodology can fill several gaps in the existing literature by collaborating with school personnel and viewing teachers, students, and staff members as equal research partners. A CBPR approach could help recognize individual differences and contextual factors that often inhibit MBI success, as well as address implementation issues, interventionist factors, and fill the science‐to‐practice gap. We end by providing practical information to help translate CBPR approaches into the school setting.

Through Their Eyes: Youth Perspectives on Sexual and Reproductive Health Barriers and Facilitators in Baltimore, Maryland

PurposeYouth face barriers to sexual and reproductive health (SRH). Few states require the delivery of comprehensive sex education in schools, and youth report challenges with accessing clinical care. We sought to identify youth's perceived barriers and facilitators to SRH in their communities. MethodsWe utilized photovoice, a community-based participatory research methodology. Youth were recruited from high schools in Baltimore, Maryland. Participants were given a tutorial on Photovoice methodology and photography. In groups of 5–7 participants, youth brainstormed questions relevant to their perspective of SRH. Three months were allocated to taking photographs. Participants wrote brief narratives to accompany their photographs, and group level assessment was used for participants to comment on others' photographs. Participants discussed the narratives and comments, created themes, and generated action steps to address barriers to SRH. Further thematic analysis was conducted using NVivo. ResultsThere were 30 participants aged 14–19 years with 26 self-identifying as female and four nonbinary. Self-identified race/ethnicity included 50% Black/African American, 30% Asian American, and 20% White or Hispanic/Latino. Four domains emerged: desire for societal-level change, community-level change, peer-level change, and positive examples of SRH within their communities (e.g., gender-inclusive spaces and free menstrual products). DiscussionYouth photographs shed light on a strong desire for an improved school environment, in terms of safety, cleanliness, gender-inclusivity, menstrual product access, and SRH education.

Rationale and design of the Heart-to-Heart study: A church-based intervention to reduce blood pressure in African Americans

Heart-to-Heart (H2H) is a church-based behavioral cluster randomized trial to measure the effectiveness of a lifestyle education program for reducing blood pressure (BP) in African American adults with uncontrolled BP. Design and implementation of this study were informed by our ALIVE pilot study conducted with church pastors and leaders using a community-based participatory research methodology. The current study employs a cross-over design in which all participants receive two 6-month programs in different orders: the intervention arm receives the H2H program first, followed by a financial education program, and the comparator arm receives the programs in the reverse order. Approximately 34 churches will be randomized with the aim of including at least 272 participants across churches. The H2H program consists of 24 weekly dietitian-led diet and lifestyle virtual education sessions, 12 Bible studies taught by the church pastor reinforcing positive dietary behaviors from a biblical perspective, daily self-monitoring of BP, and, as needed, one-on-one support from a community health worker to assist with medication adherence. The Money Smart program consists of 14 financial education sessions and 12 Bible studies teaching the biblical basis of good financial management over a 6-month period. The primary outcome measure is systolic BP at 6 months with a follow-up at 12 months. Secondary outcome measures include medication adherence, Dietary Approaches to Stop Hypertension (DASH) diet adherence, self-efficacy for hypertension self-care, social support for eating a healthy diet, hypertension and nutrition knowledge, beliefs about medicines, barriers to medication use, depression, and financial knowledge and behaviors.

Surgical Care for Racial and Ethnic Minorities and Interventions to Address Inequities: A Narrative Review.

Racial and ethnic inequities in surgical care in the United States are well documented. Less is understood about evidence-based interventions that improve surgical care and reduce or eliminate inequities. In this review, we discuss effective patient-, surgeon-, community-, healthcare system-, policy-and multi-level interventions to reduce inequities and identifying gaps in intervention-based research. Evidenced-based interventions to reduce racial and ethnic inequities in surgical care are key to achieving surgical equity. Surgeons, surgical trainees, researchers, and policy makers should be aware of the evidence-based interventions known to reduce racial and ethnic disparities in surgical care for prioritization of resource allocation and implementation. Future research is needed to assess interventions effectiveness in the reduction of disparities and patient reported measures. We searched PubMed database for English-language studies published from January 2012 through June 2022 to assess interventions to reduce or eliminate racial and ethnic disparities in surgical care. A narrative review of existing literature was performed identifying interventions that have been associated with reduction in racial and ethnic disparities in surgical care. Achieving surgical equity will require implementing evidenced-based interventions to improve quality for racial and ethnic minorities. Moving beyond description towards elimination of racial and ethnic inequities in surgical care will require prioritizing funding of intervention-based research, utilization of implementation science and community based-participatory research methodology, and principles of learning health systems.

“Very Similar to Having a Pimp”: Community Advisory Board Members’ Experiences in Health-Related Community-Based Participatory Research

Despite the abundance of research on the experiences of researchers with community-based participatory research (CBPR), there has been comparatively little published on CAB members’ experiences. The goal of this research was to analyze the lived experiences of a small sample of CAB members in recent health-focused CBPR in Canada, with a particular focus on areas for improvement. We found that CAB members in CBPR experienced low perceived value from researchers due to communication patterns, education differences, and inadequate compensation. These issues may be mitigated through increased CAB member engagement throughout the research process, adequate compensation, and improved emotional support. This study demonstrates that if CBPR methodologies are to live up to their promise, it is crucial that CAB members are enabled to work in true partnership with researchers, receive adequate compensation that is meaningful to them, and are supported throughout the process.

"We Need to Live off the Land": An Exploration and Conceptualization of Community-Based Indigenous Food Sovereignty Experiences and Practices.

Although Indigenous food systems are sustainable in nature, many of these systems have been forcibly altered among Indigenous communities within Canada, as a consequence of colonization. Indigenous Food Sovereignty (IFS) movements work to counteract the dismantling of Indigenous food systems as well as the negative health impacts of environmental dispossession experienced by Indigenous communities. Through community-based participatory research methodologies and the utilization of Etuaptmumk, or two-eyed seeing, this research project explored community perspectives of IFS in Western Canada. Reflexive thematic analysis of qualitative data collected during a sharing circle held with community members identified the influence of Indigenous Knowledge and community support on three main aspects of Indigenous food sovereignty, including (1) environmental concerns, (2) sustainable practices and (3) a strong relationship with the land and waters. Through the sharing of stories and memories related to traditional foods and current sovereignty projects, community members identified concerns for their local ecosystem as well as a desire to preserve its natural state for generations to come. The strengthening of IFS movements is critical to the overall wellbeing of Indigenous communities within Canada. Support is needed for movements that honour relationships with traditional foods and recognize traditional lands and waters as necessary for healing and sustaining the health of Indigenous communities.

Lessons Learned from the Colorado Project to Comprehensively Combat Human Trafficking

Countering human trafficking at a statewide level requires a combination of knowledge from lived experience, inter-sector collaborations, and evidence-based tools to measure progress. Since 2010, the nonprofit Laboratory to Combat Human Trafficking (LCHT) has collected and analyzed the data on how partners and organizations across the state work toward ending human trafficking. LCHT uses Community-Based Participatory Research (CBPR) to measure and illuminate promising paths toward ending human trafficking. Through CBPR, many collaborative working documents and activities have been created: Colorado Action Plans, Policy Recommendations, a Partnership Toolkit, and Partnership Convenings. This paper provides a single case study analysis of the Colorado Project, from 2013 through 2023, and offers a glimpse into the goals for the Colorado Project 2028. The ideas, strengths, and challenges presented here can guide other local efforts to support data-informed responses to trafficking. The CBPR methodology sheds light on the changes in Colorado’s anti-trafficking movement and the actions taken on behalf of partnerships (task forces and coalitions) across the state of Colorado. This paper offers a roadmap for collaborative design and decision-making among academic, nonprofit, and public sector partners seeking to conduct research on social movements utilizing a community-engaged process.

‘It’s a people problem, not a goat problem.’ Mitigating human–mountain goat interactions in a Canadian Provincial Park

Context Wildlife viewing is a primary reason people visit parks and protected areas. However, high rates of visitation increase the potential for interactions between humans and wildlife. This close proximity of humans and wildlife can lead to habituation to human presence and pose a threat to both animals and humans. Aims We describe human–mountain goat interactions in Cathedral Provincial Park (CPP), in British Columbia (BC), Canada, and examine management and mitigation strategies to reduce these interactions. Methods This project was a collaboration with BC Parks. We used community-based participatory research methodologies, conducting interviews and surveys from July 2020 to November 2021 with park visitors, staff, and researchers. Key results Most respondents encountered mountain goats in the park and understood the park’s messaging; however, not all respondents took the necessary steps to reduce encounters. We recommend further education efforts focused on formal staff training and improved infrastructure in the park. Conclusions Our results can be used to inform management decisions related to human–wildlife interactions, primarily in parks and protected areas. On a proximate level, we suggest further educational efforts and improved infrastructure in the park to help overcome perceived lack of action by some participants. Ultimately, there is a need to incorporate human aspects of human–wildlife interactions into management decisions aimed at addressing potential and existing problems. Implications Using a multitude of approaches to management, informed by biological, social, and cultural knowledge, can improve responses and mitigation strategies in human–wildlife interactions. Collaboration among different stakeholders allows for the exchange of ideas and innovations that can contribute to positive movement towards coexistence of humans and wildlife in parks and recreational areas.

Photovoice Lessons from a Peruvian Program in Combatting Stigma for Caregivers of Children with Disabilities.

Access to resources for children with disabilities and their caregivers are lacking worldwide, especially for low-and middle-income countries, especially those of Latin origin. Furthermore, decreased social visibility coupled with minimal support available for caregivers can negatively affect their overall mental well-being. Limited community-based participatory research has been done to understand the experiences of caregivers and identify effective measures of support. To explore the impact of childhood disabilities on caregiver well-being and to assess how interactions between caregivers and their community affect their mental well-being. This study used photovoice and community-based participatory research methodology. We recruited participants who had children enrolled in a rehabilitative program called Rehabilitation with Hope, located in Huancayo, Peru. Participants were given three photo assignments concerning their experiences as caregivers and they presented their photos at photo discussions after each assignment. We used thematic analysis to identify the main themes that arose from the discussions. Four main themes were identified: stigma, social support, self-esteem, and effects of photovoice. Caregivers often felt stigmatized by the community due to their child's disability. However, they found a stronger sense of social support and overall improved sense of self-esteem through the program and participation in photovoice. The results of this study suggest the effects of stigma on caregivers may be mitigated through enhanced social support and self-esteem. Additionally, photovoice is an effective tool to combat community stigma by allowing caregivers to share their narratives.

Creating academic-community partnerships to jointly enhance advocacy and research on violence and disability: Two case examples.

This article describes the use of community-based participatory research (CBPR) to foster bidirectional and equitable academic-community partnerships in two studies related to interpersonal violence and disability. We analyzed our methods and experiences in conducting these studies to focus on the ways in which CBPR methodology was used to jointly promote and enhance research and advocacy surrounding violence and disability in the research processes themselves and the resulting assessment and intervention products. Our use of CBPR methodology allowed us to identify and address critical issues related to violence in the disability community, such as disability-related forms and experiences of violence, concerns and barriers linked to mandated reporting laws, and inaccessible measures and interventions, and to address them in research products. Additionally, our bidirectional academic-community partnerships led us to address overall accessibility of the research process itself as a means by which to amplify advocate voices in science. Full, meaningful, and equitable participation of people with disabilities at every stage of the research process allows for the creation of partnerships that jointly advance research and advocacy around violence and disability. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

The influence of transportation and digital technologies on backcountry tourism and recreation in British Columbia, Canada

Sensitive backcountry environments are more accessible than ever due to technological innovation and a growing tourism sector in Western Canada. Current regulations and management practices must adapt as technology continues to change the way people access, travel on and experience backcountry trail networks. While existing literature discusses the ecological impacts of trail-based tourism, there are few resources available that foster comprehensive land management strategies of backcountry trails in British Columbia (BC). There are also a limited number of studies that are specific to the effects of transportation and digital technologies on backcountry tourism and recreation. A community-based participatory research methodology provided the foundation for this study. Twenty-one semi-structured interviews were completed with key industry stakeholders who currently manage trails in backcountry environments throughout the province. We examine the challenges and opportunities that new forms of transportation and digital technologies offer to the management of backcountry trails, with a specific focus on the sport of mountain biking. Participants asserted that the multiple overlapping interests that compete for control of public land in Western Canada add layers of complexity to any discussion of backcountry tourism, recreation and conflict management. There was also an emphasis that unsustainable growth of trail-based tourism in numerous regions of BC increases the potential for conflict to occur between trail users. These findings inform the development of strategies to manage people, the lands, and the relationships with other stakeholders to mitigate conflict in these tourism economies. The results provide insight into the contemporary challenges trail managers face related to transportation and digital technological innovations and they identify opportunities for further trail user education to encourage more collaborative land management strategies. The example of how these technologies impact backcountry trails in BC has applicability for diverse rural tourism economies throughout Canada and internationally.

The MI-PHOTOS Project: Understanding the Health and Wellbeing of Rural Historically Marginalized Mothers Through Photovoice.

Despite the persistent health inequities faced by rural women in the United States, few researchers have partnered with women in rural communities to co-create sustainable change. To fill this gap, Mothers Improving Pregnancy and Postpartum Health Outcomes Through stOry Sharing (MI-PHOTOS) employed a community-based participatory research (CBPR) approach by partnering with mothers, community leaders, and community-based organizations in Robeson County, North Carolina, a rural, racially diverse county. The project's aims were (a) to promote maternal health by listening to mothers' stories of having and raising children in their community and (b) to develop a shared understanding of these mothers' strengths and challenges. MI-PHOTOS utilized photovoice, an exploratory and qualitative CBPR methodology. Grounded theory guided data analysis. During photovoice discussions, conversation focused on maternal experiences and evoked strengths, facilitators, and barriers impacting maternal health. Themes focused on (a) MI-PHOTOS serving as a social support group for the community and family stressors that mothers faced and (b) the necessity of professional support programs. Three overarching findings emerged during this process: (a) MI-PHOTOS as an informal support group, (b) mental health stigmatization, and (c) the need to bridge home visiting programs with peer and confidential therapeutic services. Future work should incorporate mothers' and communities' strengths into program development by drawing on existing home visiting programs, identifying opportunities for peer-support, and creating referral networks for individual, confidential therapeutic services. Through continued community partnership, we can generate fuller understandings of mothers' experiences of having and raising children and ultimately promote health equity among rural mothers.

Inclusive Storytelling: Community Reaction to Immigrant Youth Experiences in Atlanta

From 2016 to 2018, an interdisciplinary community-engaged project incorporating community-based participatory research methodology, explored how the role of storytelling is integral for the transference of knowledge, history, and sense of purpose. The outcomes help us understand how the views of receiving communities change over time with respect to migrants through their own stories, thus impacting the work of immigrant-serving organizations, such as Georgia-based Welcoming America, a nonprofit committed to implementing a variety of initiatives to cultivate welcoming cities and welcoming regions. Our project gauges the impact of the 2018 publication, Green Card Youth Voices: Immigration Stories from an Atlanta High School.

Digging Deep: Barriers to HIV Care Among Indigenous Women

Indigenous women experience a disproportionate burden of ill health, including high rates of HIV. To reduce disparities in disease burden and health outcomes, identification of the barriers preventing access to health care is necessary. Identifying and discussing these barriers can assist service providers in the provision of care, influence policies for health and social well-being, and advance the discourse on equitable health care for Indigenous Peoples. Our research goal was to identify evidence-based, community-driven and asset-based solutions from the perspective of Indigenous women living with HIV. We also aimed to identify the role of the social determinants of health that influence the rates of HIV among Indigenous women. We used a combination of community-based participatory research methodology and Indigenous storytelling during 148 one-on-one interviews with HIV- and/or HCV-positive Indigenous women. Nine additional interviews were executed with healthcare professionals, health directors, and Knowledge Keepers and Elders. The interviews included qualitative, open-ended questions. We utilized NVivo for data analysis as well as Nanâtawihowin Âcimowina Kika-Môsahkinikêhk Papiskîci-Itascikêwin Astâcikowina (NAKPA), an Indigenous method for qualitative data analysis. Through the analysis, we identified nine barriers to care including expenses for daily living and health care-associated costs, time, access to computers and/or internet, transportation, childcare, homelessness and missed appointments, age, experiences with healthcare professionals and the health care system, and language. These barriers prevent access to and engagement in health care, leading to poor HIV related health outcomes. Healthcare providers have an essential role in identifying barriers to care, improving access to care in a patient-centered approach, and working to improve culturally safe practices.