Community-based Research Project Research Articles

Teaching Research Methods through a Community-Based Research Project: Connecting Theory and Practice to Make it “Real” for Students

This paper describes the experience of teaching an undergraduate research methods course through a qualitative community-based research project and the impact of that approach on student learning. Course composition and design are outlined, followed by the community-based research project’s impetus, focal research questions, and implementation protocol. Evidence of the impact on learning for the fifteen students in the course is drawn from three sources: reflection papers, student comments on formal course evaluations, and pre and post-test (survey) self-assessments of student knowledge. Collectively, the data suggest student learning was supported in several ways: by enhancing their ability to connect theory with practice, increasing appreciation of the scope and rigor of social science research procedures, viewing research as a vehicle to develop empathy, and recognizing the utility of research skills to job-readiness. Challenges and critiques related to implementing this type of project are also discussed.

Validity and reliability of the Persian version of food preferences questionnaire (Persian-FPQ) in Iranian adolescents

The assessment of dietary intakes and habits using reliable and youth-specific measurement tools during adolescence is essential. The aim of the present study was to culturally adapt and investigate the psychometric properties of the Persian version of the food preferences questionnaire (Persian-FPQ) among Iranian adolescents. This methodological cross-sectional study was conducted among 452 Persian-speaking adolescents, living in Isfahan, Iran. Translation of the FPQ was performed using forward–backward method. Intra Class Correlation (ICC) and Cronbach’s α were used to assess test–retest reliability and internal consistency, respectively. Construct validity was investigated by using exploratory factor analysis (EFA). Divergent validity was determined using correlation analysis with Kessler Psychological Distress Scale (K-10). Known-group validity was assessed based on differences in mean food preference score between boys and girls and different categories of body mass index (BMI). The internal and external reliabilities for the Persian-FPQ were in the range of good to excellent in all domains (Cronbach’s α: 0.76–0.96 and ICCs: 0.982–0.998). Boys had higher scores of food preferences than girls, indicating good known-group validity. Construct validity evaluated by EFA led to extraction of seven factors (“Vegetables”, “Fruit”, “Dairy”, “Snacks”, “Meat/Fish”, “Starches” and “Miscellaneous foods”), explaining 37.8% of the variance. Divergent validity revealed significant negative correlations between five sub-scales of the Persian-FPQ and psychological distress. The Persian version of the FPQ is a reliable and valid instrument with applicability in a broad range of the population of Persian-speaking adolescents for assessing food preferences in community-based research projects.

Aftermath of a Storm: Women and Reparations for Residential School Abuses

This article is an effort to explain how a gender-specific (women only) community-based research project, working in partnership with an Indigenous women’s organization, made visible issues of gender, sexuality, and race in the Indian residential school (IRS) compensation claims process. The study focused on the Independent Assessment Process (IAP), which involved an out-of-court adjudication whereby IRS Survivors gave oral testimony to an adjudicator about serious physical and sexual abuses they experienced at IRS and the consequential harms. The IAP was a key part of the IRS Settlement Agreement. The article discusses the IAP in the context of Canada’s colonial history, and then it provides, through results of a community-based study, insights from Survivors, support workers, and adjudicators. The study demonstrated how the absence of a gender lens in legal policy and practices can create unfair bias and, conversely, how attention to gender, sexuality, and race can assist in mitigating colonial or settler bias. The article was inspired by a 2014 Queen’s University Faculty of Law conference in honour of the late Dr. Patricia Monture.

Navigating Everyday Multiculturalism in the Culture Chats Writing Program

Taking a grounded approach to multiculturalism and the lens of informal learning and community of practice, this study reports findings from a community-based collaborative research project that explored a group of immigrant women writers’ perceptions of and experiences with multiculturalism in a community writing workshop in Metro Vancouver, a highly multicultural and multilingual regional district in the Province of British Columbia. Drawing on observation, interviews, and written artifacts created by women writers regarding their experiences with and reflection on everyday multicultural encounters, we illustrate how learning possibilities and multilayered dimensions of multiculturalism unfolded within the quotidian intercultural setting of the writing workshop, and how the shared practices of writing and intercultural communication contributed to the construction of an ephemeral community of “hybrid knowing and knowledge.”

Investigating Health Literacy in Thalassemia: Founding a Patient-Led Research Approach

Background: Thalassemia is a hereditary hemolytic anemia (HHA) with a variable phenotype and clinical severity, and constantly changing demographic profile. Despite advances in management, there are many unmet needs in this diverse population, with needs varying among different groups. The Thalassemia Advocacy Advisory Council (Thal AAC) was founded to define and better understand the unmet needs of the thalassemia patient community. This ten-person group consists of patients, caregivers, advocates, and healthcare professionals (HCPs) from six countries (USA N=5, Cyprus N=1, Italy N=1, Greece N=1, Taiwan N=1, Brazil N=1). We describe how the Thal AAC sought to better define the global community's unmet needs following a multi-step process of collecting, reviewing, and prioritizing the unmet needs experienced by patients with thalassemia (Figure). The process was coordinated, moderated, and supported by Agios Pharmaceuticals. Method: Thal AAC members shared their personal perspective on community unmet needs through a qualitative survey, which included open-ended questions aiming to collect each member's perspective on the top three unmet needs for patients and HCPs in their region and globally. Results were consolidated and reviewed by the AAC in a series of workshops. Two key unmet needs were highlighted: Among patients, there is a lack of understanding of the disease and both long- and short-term complications, which can lead to poor adherence to standard of careAmongst HCPs, improved education and advocacy are needed to support patient access to care, including innovative therapy options and research Based on these findings, the group aligned on the need for better education and understanding of the disease from a patient and HCP perspective, with health literacy (HL) being the central theme that tied these points together. With the goal of broadening understanding of patient HL, the Thal AAC defined four key sub-topics to investigate further: Patients' knowledge of the diseaseChallenges faced by patients in improving their HLPossible motivators for improving HLChannels and formats through which patients seek disease information. A non-exhaustive evidence audit of English-language literature published in the last 10 years on HL in thalassemia was conducted within PubMed and Cochrane databases using key search terms targeting thalassemia, similar hereditary hemolytic diseases, and HL. The published literature, was supplemented with patient advocacy group knowledge and data from other community-based research. Results: The audit showed that there is limited published literature or evidence for HL in the context of thalassemia and related hemolytic anemias (N=58). The format and delivery of information emerged as an important research topic in the context of rare diseases generally, but not thalassemia specifically. Although barriers and challenges to improving HL were studied in the literature (N=9), thalassemia-related items make up only ~10% (N=1), and there is relatively no research into the motivators for improving HL related to disease and outcomes. Thus, patients and their HCPs share unmet informational and educational needs, particularly regarding the long-term implications of inadequate treatment and care. Conclusion: The findings of the audit indicate a clear gap in thalassemia HL research. This gap may create scenarios in which not every patient with thalassemia accesses optimal care, which may have consequences for their long-term health. This provided the impetus for the AAC to launch a community-based, multi-national patient advocacy research initiative, comprising of a global survey and follow-up qualitative interviews, to better understand the community's perspective on HL in thalassemia. Insights from this survey will be used to share learnings and calls to action with community stakeholders, with an aim of contributing to the improvement of thalassemia patient outcomes and care. Thus, the AAC's findings have led to new insights which, in turn, have formed the foundation of a community-based research project.

Estimation of prevalence of risk factor of hypertension among population of Wardha district between age group of 35-60 years: a study protocol.

A serious medical condition known as hypertension or elevated blood pressure significantly rises the risk of brain, heart, kidney, and other medical conditions. It is the most common cardiovascular disease globally and is now recognized as a major health issue that needs to be addressed. It serves as a warning sign for serious illnesses including myocardial infarction, stroke and renal failure. An estimated 46% of the population with hypertension are not aware of the condition they have. Only 42% of those diagnosed with hypertension receive a diagnosis and treatment. 21% (1/5) of the population who have hypertension have it under control. Around the world, high blood pressure (HBP) is a main cause of early death. Knowledge on the prevalence of risk factors for hypertension is needed because there are relatively few community-based research projects on the condition. The objective of this study is to assess the prevalence of hypertension risk factor in the Wardha district in the state of Maharashtra in western India. A cross-sectional study will be performed. The study’s strength lies in the use of a standardized risk factor check list, which will ensure consistency in data collection and minimize bias. The use of a large sample size (165 patients) will also improve the precision of study and increase the generalization of the result.

Community-Based Teacher Education: The Experiences of Teacher Candidates Learning Alongside Grassroots Youth Organizers

This community-based action research (CBAR) project acknowledges and disrupts existing systemic barriers to bring teacher candidates and grassroots youth organizers together through dialogue and reflection for transformative action. The practice of community-based pedagogy is described and utilized to demonstrate how critical understandings of community may imagine new ways of learning in conventional teacher education programs. This process enhances teacher candidates’ understanding and use of community-based pedagogy while supporting youth organizers in social justice initiatives within schools and communities. The findings, which draw from the CBAR project of a white, cis-gender woman who is a teacher educator-scholar-community organizer, provide implications for teacher educators aiming to foster collaborative partnerships with youth-centered grassroots community organizations and intergenerational community members. Teacher educators are invited to engage in paradigm shifts to curate community-based teacher education programs that are stimulated by and benefit local schools and communities.

Healthy Housing in Richardsville: A Photovoice Project on Community Livability for Aging Adults

Aging in place refers to staying in one’s home well into older age. When gentrification occurs, older adults face financial challenges in sustaining affordable housing. Resident displacement results when moderate to high-income home buyers stream into neighborhoods and drive property values to prohibitive levels. Richardsville (pseudonym) is one of many communities in Atlanta’s inner city that has transformed from a blighted, long-derelict area to a hotbed of high rent apartment units, mixed with quarter-million-dollar-plus homes. Richardsville Senior Residences, an affordable rental unit, was built to provide housing for a mix of incomes and ages and retain longtime residents in Atlanta’s neighborhoods. In this community-based research project, we explore the lived experiences of eight older adults in a series of focus groups to discuss photographic images and give meaning to understand how they described aging in place. Common narratives among participants include access to outdoor spaces, smoke-free facilities, health and wellness, access to services, and social connections.

Community-Engaged Research for Economic Justice: Reflections on Concepts and Practices

The growing practice of community-engaged research (CER) creates new opportunities for practitioners, both to affirm the importance of critical approaches to CER and to strengthen our work by reflecting on the concepts and practices of our research. We offer reflections on the meanings of “community,” “engagement,” and “research” in the context of on-the-ground community–university collaborations conducted by the Blum Center on Poverty, Social Enterprise, and Participatory Governance, a campus-based research center at the University of California, Santa Cruz. This account is provided in the spirit of sharing observations, insights, and lessons learned about CER, generated through its practice in a range of community-based research projects.

Institutionalizing Community-Based Research

Institutionalizing Community-Based Research

Estimation of prevalence of risk factor of hypertension among population of Wardha district between age group of 35-60 years: a study protocol.

A serious medical condition known as hypertension or elevated blood pressure significantly rises the risk of brain, heart, kidney, and other medical conditions. It is the most common cardiovascular disease globally and is now recognized as a major health issue that needs to be addressed. It serves as a warning sign for serious illnesses including myocardial infarction, stroke and renal failure. An estimated 46% of the population with hypertension are not aware of the condition they have. Only 42% of those diagnosed with hypertension receive a diagnosis and treatment. 21% (1/5) of the population who have hypertension have it under control. Around the world, high blood pressure (HBP) is a main cause of early death. Knowledge on the prevalence of risk factors for hypertension is needed because there are relatively few community-based research projects on the condition. The objective of this study is to assess the prevalence of hypertension risk factor in the Wardha district in the state of Maharashtra in western India. A cross-sectional study will be performed. The study’s strength lies in the use of a standardized risk factor check list, which will ensure consistency in data collection and minimize bias. The use of a large sample size (165 patients) will also improve the precision of study and increase the generalization of the result.

Medical student intentions to practice internal medicine in underserved areas associated with debt, identity and extracurricular participation

BackgroundCurrently, Internal Medicine (IM) physicians do not reflect the ethno-racial diversity of the US population. Moreover, there is a shortage of IM physicians in Medically Underserved Areas (MUAs) in the US. The purpose of this study was to determine factors that influence medical students’ intent to practice IM in MUAs. We hypothesized students with intentions to pursue a career in IM and work in MUAs were more likely than their peers to identify as underrepresented in medicine (URiM), report greater student debt loads, and report medical school experiences in cultural competencies.MethodsWe analyzed de-identified data of 67,050 graduating allopathic medical students who completed the Association of American Medical Colleges’ (AAMC) Medical School annual Graduation Questionnaire (GQ) between 2012–2017 by multivariate logistic regression models, examining intent to practice IM in MUAs based on respondent characteristics.ResultsOf 8,363 students indicating an intent to pursue IM, 1,969 (23.54%) students also expressed an intent to practice in MUAs. Students awarded scholarships, (aOR: 1.23, [1.03–1.46]), with debt greater than $300,000 (aOR: 1.54, [1.21–1.95], and self-identified non-Hispanic Black/African American (aOR: 3.79 [2.95–4.87]) or Hispanic (aOR: 2.53, [2.05–3.11]) students were more likely than non-Hispanic White students to indicate intent to practice in MUAs. This pattern also existed for students who participated in a community-based research project (aOR: 1.55, [1.19–2.01]), had experiences related to health disparities (aOR: 2.13, [1.44–3.15]), or had experiences related to global health (aOR: 1.75, [1.34–2.28]).ConclusionsWe identified experiences and characteristics that associate with intention to practice IM in MUAs, which can aid future curricular redesign by medical schools to expand and deepen comprehension of health disparities, access to community-based research, and global health experiences. Loan forgiveness programs and other initiatives to increase recruitment and retention of future physicians should also be developed.

Squeezed in and pushed out: dual and contradictory displacements in Santa Ana, CA

This research examines housing insecurity and displacement within a gentrifying context. Through an interpretive analysis of four years of survey data produced through a community-based research (CBR) project on households in the Lacy neighborhood within the City of Santa Ana, California, we find that the neighborhood is simultaneously a site of eviction-based displacement and extreme overcrowding. The results complicate assumptions in the literature regarding the quantification of gentrification and suggest that in addition to direct spatial dislocation and the outward movement of households, highly localized micro-gentrification and regional exclusion may together produce forms of extreme spatial concentration within neighborhoods that make estimating gentrification-induced displacement difficult. Ultimately, by drawing attention to the combination of contrary displacement forms and observable housing deprivation, we argue that the special conditions that have emerged in the Lacy neighborhood are representative of a housing submarket that combines exclusion and insecurity with unequal exchange for renters.

Perspectives on COVID-19 Vaccination and Vaccine Passports in a Diverse Urban Adolescent Population: A Youth Participatory Mixed Methods Study

PurposeDisparities in youth COVID-19 vaccine acceptance and uptake have been documented in several countries, yet few studies have explored the attitudes and perceptions underlying vaccine-related decision-making among adolescent populations with unique sociocultural, environmental, and/or structural contexts that may influence vaccine uptake. MethodsThis study used data from surveys and semistructured interviews collected between January and March 2022 as part of an ongoing community-based research project in two ethnoculturally diverse, lower income neighborhoods of Montreal, Canada. Youth researchers designed and conducted interviews with unvaccinated adolescents, and thematic analysis was employed to explore attitudes and perceptions underlying vaccine-related decisions and opinions about vaccine passports. Survey data were used to describe sociodemographic and psychological determinants of COVID-19 vaccination. ResultsAmong 315 survey participants aged 14–17 years, most (74%) were fully vaccinated against COVID-19. Prevalence ranged from 57% among Black adolescents to 91% among South and/or Southeast Asian adolescents (34% difference, 95% confidence interval: 20–49). Qualitative and quantitative findings highlighted several misconceptions about the safety, effectiveness, and necessity of COVID-19 vaccines and adolescents' desire for trusted sources of information to address their concerns. Vaccine passports likely increased uptake, yet adolescents were strongly resistant to the policy, and for some, it may have fueled distrust of government and scientific institutions. DiscussionStrategies that increase the trustworthiness of institutions and foster genuine partnership with underserved youth may improve vaccine confidence and help ensure an effective, proequity recovery from COVID-19.

Research Responsibility Agreement: a tool to support ethical research

When engaging in community-based research, it is important to consider ethical research practices throughout the project. While current research practices require many investigators to obtain approval from an ethics review board before starting a project, more is required to ensure that ethical principles are applied once the investigations begin and after the investigations are complete. In response to this concern, as expressed by workers at a feminist non-profit during a community placement, we developed a tool to foster both greater ethical and feminist research practice in community-based research. Using feminist theories, methodologies, and concepts such as epistemic justice, epistemic trust, and coauthorship, a tool was developed to support researchers and other collaborators in building relationships of reciprocity. This tool, called the Research Responsibility Agreement (RRA) invites all members of a research project to explicitly reflect on their role in the research, their relationships with other collaborators, their responsibility to contributing meaningfully in the project, and their plans to remain accountable to one another. In doing so, the RRA adds to existing tools that support ethical research by sharing explicit reflections from all collaborators on how to prevent harm and by asking them to reflect on ethical practices beyond the initial stages of the project. The RRA also encourages greater engagement from researchers and collaborators toward building meaningful relationships with each other, and with participants, to work together in advancing social change. As a practical tool that promotes reflection, that builds relationships, and that holds all parties accountable to ethical and feminist research practices, the RRA has the potential to generate impactful change in community-based research projects and beyond. While the RRA is tailored to community-based research, it can be applied widely to any research project and has the potential to revolutionize how research relationships are built across disciplines.

Addressing COVID-19 vaccine hesitancy in rural communities: A case study in engaging trusted messengers to pivot and plan.

The pandemic declaration of COVID-19 in 2020 presented unique challenges, lessons, and opportunities for public health practice in the United States. Despite clear evidence of COVID-19 vaccine effectiveness, vaccine uptake and vaccine confidence remained low in many regions. Vaccine holdouts, or those who are vaccine hesitant, have been an increasingly difficult population to reach. Several factors influence vaccine hesitancy and behavior in rural areas, including health care access challenges, misinformation, political loyalties, and concerns regarding the perceived lack of trustworthy evidence and knowledge of long-term effects. In March 2021, the Finger Lakes Rural Immunization Initiative (FLRII) engaged stakeholders to address vaccine hesitancy in a nine-county region of rural New York known as the Finger Lakes. Driven by data collected from community partners, physicians, and local health departments regarding their biggest barriers and greatest needs, the FLRII team created an interactive program for trusted messengers (TMs) including a stakeholder panel, called the Trusted Messenger Forum (TMF). The TMF met every 2 weeks from August 2021- August 2022 to engage local TMs and disseminate up-to-date knowledge in real time. During forum sessions, TMs shared detailed accounts of their experiences combating vaccine hesitancy in their communities and supported one another in their efforts through positive interaction and reaffirming conversations. Collaborations between community stakeholders can form a scaffolding to support a rapid response to a variety of public health problems and result in impactful change. For researchers implementing community-based research projects, modeling stakeholder panels after trusted messenger forums can be effective for diversifying the scope of the project and reacting to emergent problems in real-time.

Working from the Ground Up and Participatory Action Research: An old urban neighbourhood in Hong Kong

ABSTRACT This article presents a community-based action research project in a low-income neighborhood in Hong Kong that adopted the Working from the Ground Up (WFGU) model. In the context of the neoliberal turn, the WFGU approach reminds researchers and practitioners to begin with the disadvantaged groups’ perceptions of the neighborhood and priorities for changes. The WFGU and action research process involved four phases: observation, reflection, planning, and actions. The four-year action research project indicates the potential of promoting the participation of tenants of sub-divided units (SDUs), a type of sub-standard housing in Hong Kong. The SDU tenants used Photovoice in community assessment. They critically assessed the causes of neighborhood issues and were committed to making changes collectively.

Demographic Factors and Medical School Experiences Associated with Students' Intention to Pursue Orthopaedic Surgery and Practice in Underserved Areas.

We analyzed deidentified data of AAMC Graduation Questionnaire respondents who matriculated between 2007 to 2008 and 2011 to 2012. Forty-eight thousand ninety-six (83.91%) had complete demographic, financial, and medical school elective data and were included in the study cohort. Multivariable logistic regression was performed to determine the correlation between student characteristics and intention to pursue orthopaedic surgery and IPUAs. Of the 48,096 students with complete information, 2,517 (5.2%) intended to pursue a career in orthopaedic surgery. Among the orthopaedic students, men were less likely than women to report IPUAs (adjusted odds ratio [aOR], 0.6; 95% CI, 0.4-0.8). Students who identified as Black/African American (aOR, 5.0; 95% CI, 3.0-8.2) or Hispanic (aOR, 2.0; 95% CI, 1.1-3.5) were more likely than White students to report IPUAs. Medical students who intend to pursue orthopaedics and received a scholarship (aOR, 1.5; 95% CI, 1.1-2.0), participated in community research (aOR, 1.8; 95% CI, 1.4-2.3), or had a global health experience (aOR, 1.9; 95% CI, 1.5-2.5) were more likely to report IPUAs. If orthopaedic surgeons who reported as medical students who reported IPUAs actually do so, recruiting and retaining more sex and race/ethnically diverse orthopaedic surgeons could reduce the impact of the impending shortage of orthopaedic surgeons in underserved areas. IPUA is correlated to medical school experiences related to cultural competency including global health experiences and community-based research projects.

Community-Based Participatory Gender and Sexualities Research With LGBTQ+ People With Intellectual and/or Developmental Disabilities

In this article, we discuss practical lessons for promoting meaningful collaboration in inclusive and community-based participatory gender and sexualities research with LGBTQ+ people with intellectual and/or developmental disabilities. First, we describe the historical and ongoing exclusion from research engagement of people with intellectual and/or developmental disabilities and the importance of including LGBTQ+ people with intellectual and/or developmental disabilities in inclusive and community-based research projects that address gender and sexuality. Then, we provide reflections on how we are striving to embrace core principles of community-based participatory research in our current gender and sexualities research projects. Finally, we end with a call to action for future meaningful and collaborative research that addresses gender and sexuality in the lives of people with intellectual and/or developmental disabilities.

HOW NOT TO DO COMMUNITY-BASED PARTICIPATORY RESEARCH: MEDIA CAMPAIGN FOR SOCIAL CHANGE IN PAKISTAN’S TRIBAL DISTRICTS

This paper analyzes “Pakhto Voices” project run by Public Engagement Policy Lab., a U.K.-based non-governmental organization, in the light of Community Based Participatory Research (CBPR) principles and approaches. The main purpose of the project is to reduce health disparities among the people of the then Federally Administered Tribal Areas (FATA—now called Tribal Districts or Merged Districts) of Pakistan through a “community-based research project.” According to World Health Organization (WHO), Pakistan is one of the three remaining polio-endemic countries in the world, along with Afghanistan and Nigeria. More than half of the polio cases emerged from the Tribal Districts where people from Pakhtun ethnic group reside. The formative research design of the project employed a fusion of unobtrusive and obtrusive quantitative, qualitative and ethnographic methods. The formative research design had three components: Content Analysis; Citizen Consultation, and SMS data gathering program. In this paper, we argue that the “Pakhto Voices” project does not adhere to the principles of CBPR. The authors challenge the concept of “cultural competence” used during the creation of messages and interaction with the community in this program and argue that showing “cultural humility” could have improved the outcomes of the project. The paper is divided into 6 sections: 1) Introduction to the problem; 2) Health Disparities in TRIBAL AREAS; 3) Pakhto Voices Project 4) CBPR Approaches 5) Discussion 6) Conclusion.