Community-based Participatory Research Program Research Articles

Linking affected community and academic knowledge: a community-based participatory research framework based on a Shichigahama project

Earthquakes that cause extensive damage occur frequently in Japan, the most recent being the Noto Peninsula earthquake on January 1, 2024. To facilitate such a recovery, we introduce a community-based participatory research program implemented through cooperation between universities and local communities after the 2011 Great East Japan Earthquake. In this project, the university and the town of Shichigahama, one of the affected areas, collaborated to hold annual workshops in the target area, which evolved into a climate monitoring survey. Even in Japan, where disaster prevention planning is widespread, various problems arise in the process of emergency response, recovery and reconstruction, and building back better when disasters occur. As is difficult for residents and local governments to solve these problems alone, it is helpful when experts participate in the response process. In this study, we interviewed town hall and university officials as representatives of local residents regarding this project and discussed their mutual concerns. The community-based participatory research framework developed in the Shichigahama project could be used in the recovery from the Noto Peninsula Earthquake as well as in future reconstruction and disaster management projects.

Developing a Community-Based Participatory Research Program. From Concept to Outcomes

Abstract The scope of the paper is to describe and interpret the steps and activities that led to the development and implementation of a community-based participatory research program that involved an university, local businesses and community organizations, local autorithies and an external funder. Specifically, the paper addresses the following two questions: first, how was this program designed and implemented, and second, what lessons can be learned from this experience that might be extended to the field of community-based research generally? The instrumental case study methodology was applied and the CBPR Program considered is UniverCity Romania.

A Community-Based Participatory Research Program to Train Children As Health Promoters in Mexico: Lessons Learned From a Process Evaluation

A Community-Based Participatory Research Program to Train Children As Health Promoters in Mexico: Lessons Learned From a Process Evaluation

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.

Digitalization of village based on information technology through developing BUMDes MSMEs website and logo

The development of technology has transformed the global economic landscape, including in the realm of Micro, Small, and Medium Enterprises (MSMEs). However, MSME actors in various villages and regions often still have limitations in understanding the importance of digitalization, especially in utilizing technology to promote their products. Therefore, this Community Engagement activity is initiated with the main goal of creating and disseminating understanding about the importance of implementing a profile website, financial management application, and logo in efforts to increase visibility and sales of products for MSME actors in the Serdang Tirta Kencana Village-Owned Enterprises (BUMDes) in Tangerang, Indonesia. The implementation method is based on Community-Based Participatory Research Program (CBPR) with the following stages are location survey, website and logo creation, socialization, and evaluation. Through close collaboration with local stakeholders from BUMDes Serdang Tirta Kencana, this activity has successfully empowered MSME actors with a strong visual identity and significant digital presence. The result is a 95% increase in the skills of MSME actors in BUMDes Serdang Tirta Kencana. It is hoped that through this activity, MSME actors can become competitive and have a positive impact on local economic growth and community empowerment

Increasing representation and diversity in health research: A protocol of the MYHealth research training program for high school students.

Despite decades of calls for increased diversity in the health research workforce, disparities exist for many populations, including Black, Indigenous, and People of Color individuals, those from low-income families, and first-generation college students. To increase representation of historically marginalized populations, there is a critical need to develop programs that strengthen their path toward health research careers. High school is a critically important time to catalyze interest and rebuild engagement among youth who may have previously felt excluded from science, technology, engineering, and mathematics (STEM) and health research careers. The overall objective of the MYHealth program is to engage high school students in a community-based participatory research program focused on adolescent health. Investigators will work alongside community partners to recruit 9th through 12th graders who self-identify as a member of a group underrepresented in STEM or health research careers (e.g., based on race and ethnicity, socioeconomic status, first generation college student, disability, etc.). MYHealth students are trained to be co-researchers who work alongside academic researchers, which will help them to envision themselves as scientists capable of positively impacting their communities through research. Implemented in three phases, the MYHealth program aims to foster a continuing interest in health research careers by developing: 1) researcher identities, 2) scientific literacy, 3) scientific self-efficacy, and 4) teamwork and leadership self-efficacy. In each phase, students will build knowledge and skills in research, ethics, data collection, data analysis, and dissemination. Students will directly collaborate with and be mentored by a team that includes investigators, community advisors, scientific advisors, and youth peers. Each year, a new cohort of up to 70 high school students will be enrolled in MYHealth. We anticipate the MYHealth program will increase interest and persistence in STEM and health research among groups that have been historically excluded in health research careers.

How to Conduct a Photovoice Systematic Review: Lessons Learned and Recommendations

Photovoice distinguishes itself from other qualitative research methods for its visual features and participant empowerment. As a powerful tool for community-based participatory research and health promotion programs, researchers and practitioners are paying more attention to this method in recent years. Accordingly, some photovoice systematic reviews have been published and more are underway to synthesize evidence in various research fields. However, due to the exploratory nature of the photovoice method, broad research questions for photo taking, flexible steps in photo discussion and analysis, and lack of standardized qualitative review guidelines, it could be challenging to conduct a photovoice systematic review. The purpose of this paper is to provide an overview of the photovoice method, debrief the process of a previous review, summarize lessons learned, and provide suggestions to facilitate future photovoice systematic reviews. This paper may also be of benefit to researchers who intend to apply photovoice to their research topics, or plan to conduct other types of photovoice literature reviews (e.g., scoping reviews).

Exposure to PFAS in two Alaska Native Communities

Background: Many Arctic Indigenous communities are disproportionately exposed to persistent bioaccumulative toxicants due to global distillation and traditional diets. There is relatively little known about sources of exposure to PFAS in Arctic Indigenous Communities. Aim: The aim of this study was to assess exposure to, and health effects of, PFAS in two Arctic Indigenous communities on Sivuqaq (St. Lawrence Island), Alaska. Methods: Working within an established community-based participatory research program we assessed exposure to PFAS using human serum samples, indoor dust, traditional foods, as well as sentinel fish species. Results: Community members on Sivuqaq have broadly similar PFAS exposures to the U.S. population as measured by NHANES; however, select long chain PFAS such as PFNA and PFUNA appear elevated among Sivuqaq residents. Several PFAS are associated with circulating thyroid hormone concentrations in this this population. PFAS are present in traditional food animals as well as sentinel fish species collected in Sivuqaq. Sentinel fish suggest some aspect of the built environment acts as a point source of PFAS. Fish data also suggest strong species level effects in accumulation of PFAS. Dust concentrations of PFAS are on the low end of those reported and suggest the indoor environment may be a comparatively minor contributor to serum PFAS in this population. Discussion: Alaska Native communities are exposed to PFAS through multiple routes of exposure. This may result in elevated exposure for select PFAS. Serum PFAS are associated with measures of thyroid function.

Participatory Action for Access to Clinical Trials (PAACT): Increasing participation of blacks in Southeastern Michigan in cancer clinical trails.

e18527 Background: The underrepresentation of minority populations in research violates principles of distributive justice, slows scientific progress, and exacerbates health disparities. Henry Ford Cancer Institute (HFCI) is one of 20 sites offering clinical trials in Michigan and currently participates in 1300 trials. The rate of cancer cases at HFCI is 78% in whites and 21.9% in Blacks/African Americans (B/AA). However, analysis of cancer clinical trials conducted at HFCI showed participation rates to be 2.66% in B/AA and 90.28% in whites. Diverse attempts by HFCI to improve participation of B/AA in clinical trials have yielded limited success. The Participatory Action for Access to Clinical Trials (PAACT) project is using a community-based participatory research (CBPR) approach to design/adapt, pilot, and evaluate interventions which address cancer clinical trial participation barriers among B/AA. Methods: PAACT uses a 5-step approach: 1. Establish a steering committee (SC) in partnership with the Detroit Urban Research Center, which has a strong history of implementing CBPR programs in Detroit. 2. Conduct a scoping review to evaluate evidence-based strategies and interventions used to engage B/AA communities in clinical trials. 3. Conduct qualitative and quantitative research with members of B/AA community, cancer survivors/patients, and HFCI providers. 4. Engage stakeholders in the interpretation and translation of data to inform intervention strategies. 5. Pilot the intervention(s) to assess B/AA individuals’ behavioral intentions to enroll and participate in cancer clinical trials, and health care providers’ intentions to engage in change processes. Results: We have conducted 13 SC meetings, co-facilitated by a community, academic and health system partner. The SC has been actively engaged in all aspects of the project. Through the scoping review, we identified five categories of recruitment and retention strategies. We have conducted 13 focus groups with 100 participants, 7 provider interviews, and administered 1 survey to HFCI staff. Data from the focus groups has provided information on respondents’ clinical trial knowledge and systemic, socio-cultural, and economic barriers to trial participation. Data from the provider interviews has provided information on experience with clinical trial recruitment and recommendations for improving participation among B/AA community members. Conclusions: Through CBPR, PAACT actively engages B/AA community members, survivors/patients, healthcare providers, and researchers in the process to develop/adapt, implement, and evaluate strategies to better inform communities and patients about cancer clinical trials. The long-term goal of this project is to implement changes in both the community and the health care system thereby increase levels of participation in clinical trials among B/AA.

"Is It Good or Bad for the Air?" Latino and Asian Pacific Islander Youth-Led Messaging and Action for Environmental Justice Through Photovoice.

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

Development of Youth leadership Through Community-Based Participatory Action Research During the Covid-19 Pandemic: A Case Study of Korean American Adolescents

The purpose of this study was to investigate the leadership development of Korean American youth who participated in a community-based participatory action research program designed to assist community members affected by COVID-19. Participants were drawn from a small town in the southeastern part of the U.S. Using a case study approach, multiple qualitative data (e.g., focus group conversations) and quantitative survey data were collected to explore the learning experiences of 15 Korean American adolescents. Qualitative data was analyzed following the six steps of thematic analysis, and descriptive statistics were performed to analyze quantitative data. Findings suggest that the program provided authentic learning opportunities in which participants researched the needs of community members and implemented action plans to help them. The program also helped participants improve communication skills and broaden their leadership perspectives. However, participants’ perceived leadership development differed depending on their self-identified ethnic identity, and those students who lacked Korean language abilities demonstrated difficulties in collaborating with fluent Korean-speaking peers in bilingual learning environments. This study addresses gaps in the youth development literature by describing how a community-based approach and culturally relevant practice can help Asian American youth develop leadership and inspire them to be change agents in their communities.

Living in Roma Settlements in Greece: Self-Perceived Health Status, Chronic Diseases and Associated Social Determinants of Health.

We aimed to assess the self-perceived health status and the presence of chronic diseases of adult Roma living in settlements in Greece, and to explore associated social determinants of health. Data were derived from the Hprolipsis Health Survey. Multivariable regression models were applied. In total, 534 adults, 287 women, and 247 men were recruited from twelve Roma settlements in four prefectures. Although 62% of the participants perceived their health status as good/very good, about half of them had been diagnosed with at least one chronic disease. Several structural and intermediary social determinants of health were found to be significantly associated with the health outcomes; prefecture, settlement type, sex, age group, living with a partner, presence of depression symptoms, food insecurity, and alcohol consumption were associated with self-perceived health status; settlement type, sex, age group, presence of anxiety symptoms, food insecurity and number of persons living in the house with the presence of a chronic disease. This is one of the few studies assessing the self-perceived health status and presence of chronic diseases in Roma settlements in Greece and investigating the associated social determinants of health in the world. Community-based participatory action research and health literacy programs are needed to mitigate health inequalities in Roma settlements.

Empowering communities with health promotion labs: result from a CBPR programme in Malmö, Sweden.

SummaryHealth promotion is thus not only a participatory practice, but a practice for empowerment and social justice. The study describes findings from a community-based participatory and challenge-driven research program. that aimed to improve health through health promotion platform in an ethnically diverse low-income neighbourhood of Malmö, Sweden. Local residents together with lay health promoters living in the area were actively involved in the planning phase and decided on the structure and content of the program. Academic, public sector and commercial actors were involved, as well as NGOs and residents. Empowerment was used as a lens to analyse focus group interviews with participants (n=322) in six co-creative health-promoting labs on three occasions in the period 2017-2019. The CBPR interview guide focused on the dimensions of participation, collaboration and experience of the activities. The CBPR approach driven by community member contributed to empowerment processes within the health promotion labs: Health promotors building trust in social places for integration, Participants motivate each other by social support and Participants acting for community health in wider circle. CBPR Health promotion program should be followed up longitudielly with community participants to be able to see the processes of change and empowerment on the community level.

Lead poisoning prevention: A community-based participatory research program in Mississippi

Background and objectives: Lead poisoning is a preventable environmental health hazard. Although the prevalence of lead poisoning is declining, the rates are disproportionately high in selected communities. This community-based participatory research (CBPR) program aimed to enhance people’s awareness on lead poisoning prevention through community outreach and educational interventions in Mississippi.
 Methods: Secondary data of 42,372 children obtained from the Mississippi State Department of Health were analyzed to identify the most affected communities in Mississippi. Community-based outreach and education activities were carried out in the most affected areas to increase population awareness on lead poisonig prevention.
 Results: Hands-on training was offered to 25 participants at homebuilding retail stores. Of them, 23 (92%) reported the hands-on training was very useful or useful. Among 91 home-buyers and rental home owners who attended workshops offered by the Neighborhood Association, 90% mentioned that the training was useful or very useful. An online visual training was given to 220 realtors, and 75 inspectors, contractors, and Do-It-Yourself (DIY) workers. At posttest, 59.4%, 67.9%, 65.1% of the realtors, inspectors, contractors and DIY workers (n = 295) identified soil, car batteries and paint as sources of lead in the environment, respectively. A total of 62.3%, 48.1% and 58.5%, at posttest, identified three complications - behavioral, physical and psychological, respectively. The mean posttest score was significantly higher than the pretest scores (7.47 ± 2.07 vs. 6.60 ± 1.68, p = 0.04, respectively).
 Conclusion: These outreach activities were successful in improving the knowledge of the community people on lead poisoning prevention.
 Ibrahim Med. Coll. J. 2021; 15(1): 16-25

Use of the patientMpower App With Home-Based Spirometry to Monitor the Symptoms and Impact of Fibrotic Lung Conditions: Longitudinal Observational Study.

BackgroundDaily home-based spirometry in idiopathic pulmonary fibrosis (IPF) has been shown to be feasible and clinically informative. The patientMpower app facilitates home-based spirometry along with home-based monitoring of IPF-related symptoms. The patientMpower app can be downloaded to the user’s mobile phone or tablet device, enabling the recording of objective and subjective data.ObjectiveThe aim of this paper is to report on the 1-year experience of using patientMpower with home-based spirometry by 36 participants with self-reported pulmonary fibrosis (PF) treated with usual care.MethodsSelf-selecting participants enrolled in this community-based participatory research program through a patient advocacy group in their country: Irish Lung Fibrosis Association in Ireland and PF Warriors in the United States. Disease severity was comparable with a baseline mean predicted forced vital capacity (FVC) of 64% and 62% in the Irish and US participants, respectively. Both groups of participants were allocated to identical, in-country, open-label, single-group observational studies and were provided with a Bluetooth-active Spirobank Smart spirometer integrated directly with patientMpower. Data collected via patientMpower included seated FVC (daily), breathlessness grade (modified Medical Research Council scale score), step count, medication adherence, and symptoms and impact of IPF on daily life, which were measured by a patient-reported outcome measure (PROM) scale that was specifically developed for IPF. Longitudinal patient-reported data on oximetry and oxygen consumption were also collected.ResultsA large majority of the 36 participants reported that their experience using patientMpower was positive, and they wanted to continue its use after the initial 6-week observation. Out of 36 participants, 21 (58%) recorded home-based spirometry without prompting for ≥180 days, and 9 (25%) participants continued with recording home-based spirometry for ≥360 days.ConclusionsThe patientMpower app with associated Bluetooth-connected devices (eg, spirometer and pulse oximeter) offers an acceptable and accessible approach to collecting patient-reported objective and subjective data in fibrotic lung conditions.

The Effects of Two Community-Based Participatory Action Research Programs on Violence Outside of and in School Among Adolescents and Young Adults in a Latino Community

PurposeViolence is the leading cause of death among adolescents and young adults in the Americas. Community-Based Participatory Action Research engaged youth and parents to develop and implement two interventions. A Violence Prevention Program (VPP) focused on risk factors for violence, and a Positive Youth Development Program (PYDP) focused on protective factors. Program effects on violence outside of and in school were assessed at 6 and 12 months. MethodsBoth interventions included an 8-week internet-based program and an in-person youth summit. Participants were prospectively randomized twice, first to the VPP and a no-VPP control group and again to the PYDP and a no-PYDP control group. Participants self-reported violence outside of and in school through self-administered baseline surveys with repeat assessments at 6 and 12 months. Analysis of covariance models examined VPP and PYDP effects on violence. ResultsThe analysis sample was 86% Latino, 56% female, 36% aged 10–13 years, 45% aged 14–18, and 19% aged 19–23 years. Analysis of covariance models of violence outside of school demonstrated small program interaction effects at 6 months (partial eta2 = .030; p = .007) and small VPP effects at 12 months (partial eta2 = .023; p = .025). Models of violence in school demonstrated small PYDP effects at 6 months (partial eta2 = .023; p = .018). ConclusionsCommunity-Based Participatory Action Research engaging adolescents, young adults, and parents to address locally relevant health issues can have multiple benefits. In this study, a VPP had positive effects on violence outside of school at 12 months, and a PYDP had positive effects on violence in school at 6 months.

Community-based Youth Participatory Action Research studies with a focus on youth health and well-being: A systematic review.

On the basis of the systematic literature review, we investigate the characteristics of community-based Youth Participatory Action Research (YPAR) programs with a focus on health and well-being and their recommendations for future programs. The study was based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses diagram. Most included a case study design, mixed or qualitative methodology, interview as data collection, and YPAR youth in data reporting. The sample differs between studies, and most of the work took place in the United States. The stages (raise awareness, capacitation, design, motivation, implementation, evaluation, dissemination, and replication) are evident as a fundamental strategy in these programs.

Factors Affecting HIV Testing among Youth in Kenya.

With the high prevalence of HIV among youth in sub-Saharan Africa, it is vital to better understand factors affecting HIV testing among this population; this is the first step in the HIV treatment cascade. The purpose of this study was to examine factors related to behavioral intentions regarding HIV testing using existing pre-test data from the HIV SEERs (Stigma-reduction via Education, Empowerment, and Research) Project, a community-based participatory research program targeting 13–24-year-olds in Kenya. It was hypothesized that HIV knowledge, social support, subjective well-being, and mental health (depression, anxiety, and stress) would serve as facilitators to HIV testing while projected stigma and substance use would serve as barriers to HIV testing. In partial support of our hypotheses, findings from logistic regression analyses revealed that HIV knowledge, substance use, depression, and social support were significant predictors of HIV testing intentions. However, HIV knowledge and substance use served as facilitators while depression and social support served as barriers. While projected stigma was correlated with HIV testing intentions, it was not a significant predictor in the regression analysis. Subjective well-being, anxiety, and stress were not significant predictors in the regression analysis. These findings have important implications for HIV testing initiatives designed for youth in Kenya as well as future research on HIV testing with this population.

P203 - Using Community-Based Participatory Research to Ignite Youth to Create Healthier Communities

Background (Background, Rationale, Prior Research, and/or Theory): The growing rate of childhood overweight and obesity suggests a need for more effective obesity prevention programs. Community-Based Participatory Research (CBPR) is a collaborative approach that allows participation from community members, organizational representatives and researchers to share their expertise in order to enhance knowledge and develop interventions that benefit the whole community. Objective: Ignite program is a five-year, multiple-state (Ohio, South Dakota and Kansas) project using CBPR process to address overweight and obesity among 6-8th grade youth. As part of Ignite program, a virtual focus group discussion was conducted, with the main purpose of enabling community members (community leaders, school administrators, and adolescents) to report the policy changes, successes, challenges, and sustainability of Ignite. Study Design, Setting, Participants, Intervention: At the end of Year 4 of programming, a virtual focus group of school administrators and counselors (n = 4), community leader (n = 1), Extension educators (n = 2), and youth (n = 13) from the steering committees from each of the three intervention communities was conducted. Focus group participants discussed priority issues and program implementation associated with Ignite. Outcome Measures and Analysis: Focus group discussion was recorded, transcribed, and thematically analyzed using NVivo software (QSR International Pty Ltd. Version 10, 2012). Results: The themes identified were policy changes (e.g. enhancing availability of breakfast, lunch and healthy snack programs, adding more before, after and in-school wellness programs, and increasing educational opportunities to support healthful eating behaviors and physical activity), successes (e.g. youth and community involvements, school staff engaged, and other wellness supported policy change), challenges (e.g. ecologically spread out in rural area, lack of time and money, and state laws), and new income sources (e.g. other grants, foundation support, incomes from healthy vending machines, and donations). Conclusions and Implications: CBPR program promoted healthier dietary and physical activity environment in the intervention schools and communities. Funding: USDA. The following is the supplementary data to this article: Download .pdf (.93 MB) Help with pdf files Poster

Participant Observation: Enhancing the Impact Measurement in Community Based Participatory Research

Participant observation parallels the principles of community based participatory research (CBPR), recognizing that each community should be understood in its own context. Using fieldnotes from the Métis Settlements Life Skills Journey (MSLSJ) program, the authors explore the benefits and challenges of using participant observation in CBPR program evaluation. Participant observation was incorporated in 2014 and 2015 as researchers sought a complementary perspective and context to determine the impact of the program. The authors explore relationships with a large number of stakeholders (children, facilitators, community members, and project staff) and discuss ensuring the participant observer’s perspective is not privileged above others.