Community-based Participatory Research Study Research Articles

Development of a multidimensional culturally and socially inclusive measure of factors that support resilience: Child Resilience Questionnaire-Child report (CRQ-C)—a community-based participatory research and psychometric testing study in Australia

ObjectiveDevelopment and testing of a comprehensive and social and culturally inclusive child-report measure of resilience factors supporting positive outcomes in the face of adversity.DesignThe measure is based on a socioecological...

Nishtam Niwiipitan (My First Teeth): Oral Health Digital Stories from Urban Indigenous Parents.

To develop oral health-related digital story videos through interviews with Indigenous parents who shared their experiences in dealing with early childhood caries (ECC) in their children. Indigenous parents in Winnipeg, Manitoba, Canada, were recruited from community programs from October to December 2019 as part of the Nishtam Niwiipitan (My First Teeth), a community-based participatory research study that builds on an ECC intervention. A twofold qualitative narrative approach to data collection was used: 1) interviewing participants and creating digital stories and 2) taking part in the postfilming feedback interviews. Participants were interviewed via video in a semistructured format sharing their experiences and attitudes about caring for children with ECC and the challenges faced seeking dental care for the disease. The stories were drawn from parents in 3 predetermined groups: those with 1) children who had undergone dental surgery under general anesthesia, 2) children who had received silver diamine fluoride as an alternative to surgery to manage ECC, and 3) caries-free children. Prior to editing, the narrated stories were transcribed verbatim and analyzed thematically. The postfilming interview transcripts were also analyzed and coded for key themes. Six parents and 1 grandparent, all of whom self-identified as Indigenous (First Nations or Métis) and cared for children aged <6 y, created the digital stories. Three key themes emerged from the postfilming interviews: ability to share, ability to help, and ability to change. Participants felt important, optimistic, and motivated throughout the process of making their digital stories. Digital storytelling offered First Nations and Métis parents a unique opportunity to share their experiences caring for children with ECC with the wider public. These videos can be incorporated into oral health promotion and ECC intervention programs as a culturally appropriate method for reaching Indigenous families. The use and development of digital storytelling for oral health promotion have great potential for spreading awareness and sharing knowledge with Indigenous parents/caregivers about their children's oral health and care practices. This health promotion tool is congruent with Indigenous ways of knowing, as Indigenous communities have a long tradition of oral history. The videos produced for this study will assist with oral health promotion efforts to address the high rates of early childhood caries in Indigenous communities in Canada.

Structural Racism and Its Influence On Sexual and Reproductive Health Inequities Among Immigrant Youth.

This community-based participatory research study explores the influence of structural racism on sexual and reproductive health (SRH) inequities among immigrant, including refugee, youth. We conducted interviews with emerging youth and youth service providers living in two communities in Massachusetts. Our results detail three major themes illustrating how structural racism influences SRH inequities among immigrant youth: (1) lack of culture-centered SRH supports for recently immigrated youth; (2) immigration enforcement and fear impacting access to adolescent SRH (ASRH) education and services; and (3) perceived ineligibility related to tenuous legal status as a barrier to accessing ASRH services. Conclusions: Findings illustrate the importance of rooting sexuality education curricula in a culture centered framework that recognizes local cultural understandings, acknowledges structural constraints faced by young people, and prioritizes youth agency and voice when engaging in this work. Raising awareness of SRH resources available to immigrant youth may expand access for this underserved population.

Assessing LGBTQ+ stigma among healthcare professionals: An application of the health stigma and discrimination framework in a qualitative, community-based participatory research study.

This qualitative, community-based participatory research (CBPR) study examines the occurrence of LGBTQ+ stigma in healthcare guided by the Health Stigma and Discrimination Framework. We conducted focus groups with healthcare professionals, analyzed using a thematic analysis approach. Stigma drivers included knowledge deficits and transphobia. Facilitators were the binary organization of medical education and training, cisnormative system procedures, a lack of enforceable policy to reduce stigma, and workplace culture and norms. Stigma practices, such as prejudicial attitudes, gossip, and misgendering, primarily focused on transgender individuals. This study reinforces the need to reduce LGBTQ+ stigma in healthcare settings, with implications for multi-level interventions.

“COVID knocked me straight into the dirt”: perspectives from people experiencing homelessness on the impacts of the COVID-19 pandemic

BackgroundPeople experiencing homelessness are uniquely susceptible and disproportionately affected by the impacts of the COVID-19 pandemic. Understanding context-specific challenges, responses, and perspectives of people experiencing homelessness is essential to improving pandemic response and mitigating the long-term consequences of the pandemic on this vulnerable population.MethodsAs part of an ongoing community-based participatory research study in partnership with a homeless service organization in Indiana, semi-structured interviews were conducted with a total of 34 individuals experiencing homelessness between January and July 2021. Guided by the NIMHD Health Disparities Research Framework, which builds on the socio-ecological model, data was thematically coded using Nvivo12 qualitative coding software and themes were organized by levels of influence (individual, interpersonal, community, societal) and domains of influence (biological, behavioral, physical/built environment, sociocultural environment, health care system).ResultsNarratives revealed numerous and compounding factors affecting COVID-19 risks and health outcomes among people experiencing homelessness across all levels and domains of influence. At the individual level, people experiencing homelessness face unique challenges that heightened their susceptibility to COVID-19, including pre-existing physical and mental health conditions, substance use and behavioral health risks, socioeconomic precarity, and low health literacy and COVID-related knowledge. At the interpersonal level, poor communication between people experiencing homelessness and service providers led to limited understanding of and poor compliance with COVID safety measures. At the community level, closures and service disruptions restricted access to usual spaces and resources to meet basic needs. At a policy level, people experiencing homelessness were disregarded in ways that made pandemic relief resources largely inaccessible to them.ConclusionsOur findings reveal important and mitigable issues with ongoing pandemic response efforts in homeless populations through direct, first-hand accounts of their experiences during COVID-19. These insights offer opportunities for multilevel interventions to improve outreach, communication, and impact mitigation strategies for people experiencing homelessness. This study highlights the importance of centering the voices of vulnerable communities to inform future pandemic response for homeless and other underserved and marginalized populations.

“Es Muy Tranquilo Aquí”: Perceptions of Safety and Calm among Binationally Mobile Mexican Immigrants in a Rural Border Community

Perceptions of community can play an important role in determining health and well-being. We know little, however, about residents’ perceptions of community safety in the Southwestern borderlands, an area frequently portrayed as plagued by disorder. The qualitative aim of this community-based participatory research study was to explore the perceptions of Mexican-origin border residents about their communities in southern Yuma County, Arizona. Our team of University of Arizona researchers and staff from Campesinos Sin Fronteras, a grassroots farmworker support agency in Yuma County, Arizona, developed a bilingual interview guide and recruited participants through radio adds, flyers, and cold calls among existing agency clientele. Thirty individual interviews with participants of Mexican origin who live in and/or work in rural Yuma County were conducted remotely in 2021. Participants overwhelmingly perceived their communities as both calm and safe. While some participants mentioned safety concerns, the vast majority described high levels of personal security and credited both neighbors and police for ensuring local safety. These perceptions were stated in direct contrast to those across the border, where participants had positive familial and cultural ties but negative perceptions regarding widespread violence. In conclusion, we argue that to understand environmental factors affecting health and well-being in Mexican immigrant populations, it is critical to examine the role of binational external referents that color community perceptions.

Somali, Latino, and Hmong Youth Perceptions of School Connectedness.

Purpose:School connectedness positively influences adolescent health outcomes and is a key social determinant of health, yet, contributors to school connectedness for youth from immigrant communities remain poorly defined.Methods:This community-based participatory research study uses thematic analysis to identify contributors to Somali, Latino, and Hmong (SLH) adolescents' school connectedness. We conducted nine focus groups with 71 SLH male and female adolescents, the majority aged 13–18 years, in a United States Midwestern metropolitan area.Results:SLH students described contributors to their school connectedness that fit within three broad themes: (1) SLH students desire to be known and supported by their teachers as individuals, (2) specific teacher instructional approaches reinforce or undermine SLH student–school connections, and (3) transparency and fairness in school disciplinary practices are especially important for promoting Latino student–school connectedness.Conclusion:SLH youth perspectives offer ways for educators to foster increased school connectedness to improve academic and health outcomes among increasingly diverse student populations.

Relationships at Work: Integrating the Perspectives of Disability Partners to Enhance a Peer Navigation Intervention.

ObjectiveThe Our Peers-Empowerment and Navigational Support (OP-ENS) community-based participatory research study developed, implemented, and evaluated a peer navigator intervention aimed at improving health and healthcare access among Medicaid beneficiaries with disabilities. Peer navigators are community partners with physical disabilities trained to deliver structured peer support interventions that can address barriers to care. The purpose of this paper is two-fold. First, it explicates the relational work the peer navigators do with peers in delivering the intervention. Second, it illustrates how our community-based participatory approach empowered peer navigators to share their knowledge to refine the intervention.MethodsClinical coordinator team meeting notes, critical incident documentation reports, peer navigator reflections (n = 20) were analyzed thematically to understand the peer navigators' relational work and intervention refinements. Following Labov's 6-stage approach to personal narratives and a collaborative writing process academic, clinical, and disability partners co-wrote descriptive exemplars to showcase these processes.FindingsThrough the manualized OP-ENS intervention process, peer navigators helped peers achieve incremental successes. Peer navigators used their training and personal experiences to engage with peers and forge deep connections and relationships of trust. As a result, peers identified a wide-range of social health concerns, including poverty, social isolation, and racial and disability related discrimination that might otherwise go unaddressed. True to the principles of community-based participatory research, by fostering an equity-focused collaboration and listening to peer navigators, the project team implemented subtle but salient refinements to the intervention. Refinements included an explicit focus on social determinants of health affecting peers' health and wellbeing and supplemental trainings to help peer navigators support peers with significant mental health needs.ConclusionThe peer navigators were intentional and skilled at relationship building, thus complex elements which impact peers' health were addressed. Peer navigators were empowered to communicate their perspectives with the study team, who worked together to strengthen the intervention processes and infrastructure. This atmosphere of trust and collaboration amongst diverse stakeholders was instrumental to OP-ENS' successful implementation. Healthcare systems should consider implementing peer support interventions that are responsive to consumer input to address social determinants of health for persons with disabilities.

Community Perspectives and Environmental Justice Issues in an Unincorporated Black Township.

Through each era, the southeastern United States was and continues to be an epicenter for industrial companies to establish factories and plants. Though this development attracts economic gain for the companies and surrounding areas, low-income and predominantly Black communities bear the brunt of the environmental consequences while frequently remaining stagnant economically. This qualitative, community-based participatory research study grew out of a larger study designed to recruit lay community advisors from communities labeled as hard to reach in research. We focus on Holt, Alabama, an unincorporated community in the southeastern United States region. The primary goal of this research inquiry is to thematically analyze community interviews stemming from a topic of research, practice, and policy interest to community members: the effects of industrial pollution on Holt citizens’ daily lives. Content analysis of focus-group transcripts revealed four emergent themes, including: (1) how the pollution affects their water, soil, and air quality; (2) illness related to pollution; (3) community engagement and empowerment; and (4) suggestions regarding what government officials could do to address this area of need. Building upon the prior research regarding environmental justice, human flourishing, and the definition of nurturing environments, suggestions are made regarding the creation, implementation, and maintenance of project advisory councils focused on issues of environmental justice. Community advocacy and empowerment as well as community and scientific partnerships are imperative to alleviate problems associated with environmental justice.

Development and validation of a multidimensional, culturally and socially inclusive Child Resilience Questionnaire (parent/caregiver report) to measure factors that support resilience: a community-based participatory research and psychometric testing study in Australia

ObjectiveDevelop a comprehensive socially inclusive measure to assess child resilience factors.DesignA socioecological model of resilience, community-based participatory research methods and two rounds of psychometric testing created the Child Resilience Questionnaire...

Design and Implementation of a Nutrition and Breastfeeding Education Program for Black Expecting Mothers and Fathers

ObjectiveTo describe the intervention and research methods of Project Dads in Nutrition Education, an intervention that adds nutrition and breastfeeding education to the existing Healthy Start program in Georgia for Black expecting mothers and fathers to improve nutrition literacy, health outcomes, and breastfeeding rates. DesignThis 2-year community-based participatory research study employs a cluster randomization factorial design. SettingSix Healthy Start program sites (3 intervention and 3 control sites) in Georgia counties with high infant and maternal mortality rates. ParticipantsApproximately 480 Black, expecting, Healthy Start program participants (20 couples [mother and father] and 40 single mothers from each site) will be enrolled over the study period. Intervention(s)Project Dads in Nutrition Education will strengthen the capacity of the Georgia Healthy Start program to integrate an evidence-based nutrition education program, breastfeeding education, and father engagement into its routine services. Main Outcome Measure(s)Changes in prepost survey assessment of participants’ nutrition literacy and eating behaviors; changes in prepost survey assessment of participants’ breastfeeding knowledge, attitudes, intent, initiation, and duration; and health and food diary collected 3 times (ie, at baseline, 3 months, and 6 months after enrollment). AnalysisProcess evaluation throughout the study to document implementation. Generalized linear mixed modeling will be used to determine the impact of the intervention.

COVID-19 vaccination readiness among multiple racial and ethnic groups in the San Francisco Bay Area: A qualitative analysis.

BackgroundCOVID-19 vaccination rates are lower among historically marginalized populations, including Black/African American and Latinx populations, threatening to contribute to already high COVID-19 morbidity and mortality disparities for these groups. We conducted a community-based participatory research study using qualitative methods to explore knowledge and beliefs about COVID-19 vaccination among Black/African American, Latinx, and Chinese American residents of the San Francisco Bay Area and assess their views on vaccination outreach and delivery strategies.Methods and findingsData were collected from January 14, 2021, to February 24, 2021, with adult residents (N = 109 [Female: N = 76; 70%]) in San Francisco. Focus groups (N = 10) and in-depth interviews (N = 25) were conducted among Black/African Americans (N = 35), Latinx (N = 40), and Chinese Americans (n = 34) in English, Spanish, Cantonese, or Mandarin. Themes were identified using grounded field theory, and included misinformation, mistrust of government and health institutions, and linguistic and other barriers to vaccine access. All three racial/ethnic groups had experiences with vaccine misinformation and information overload. Many African American and Latinx participants cited structural and interpersonal racism, and anti-immigrant discrimination, as factors reducing their trust in government and public health disseminated information and their willingness to be vaccinated. Participants expressed trust in community-based organizations, including faith-based organizations and community-run clinics. Participants often experienced barriers to vaccine access, such as transportation to drive-in sites, with Latinx and Chinese American groups also frequently citing language barriers.ConclusionsVaccine outreach strategies must acknowledge how longstanding systemic, institutional, and structural racism contributes to mistrust in government and health institutions and engage with and support trusted messengers from the community to eliminate cultural, linguistic, and other barriers to vaccine access.

Applying the Health Stigma and Discrimination Framework to Assess HIV Stigma among Health Care Professionals: A Mixed Methods, Community-Based Participatory Research Study.

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

Building a space to dream: Supporting indigenous children's survivance through community-engaged social and emotional learning.

Indigenous communities practice survivance and challenge social and political systems to support their children's identity and well‐being. Grounded in transformative social‐emotional learning (SEL) and tribal critical race theory, this 3‐year community‐based participatory research study (2019–2021) examined how a SEL program co‐created with an Indigenous community in Flathead Nation in Montana supports anti‐racism and anti‐colonialism among Indigenous children. Critical reflexivity and thematic analyses of Community Advisory Board meetings and journals written by 60 students (M age = 10.3, SD = 1.45; 47% girls; 60% Native American) during the SEL program revealed themes on Indigenous identity, belonging, wellness, and colonialism. These results shed light on challenging the racist and colonial roots of education to support Indigenous children's survivance and social‐emotional well‐being.

Perceived Discrimination During Prenatal Care at a Community Health Center.

IntroductionDiscrimination in healthcare is associated with fetal growth restriction, preterm birth, and postpartum depression. A community-based participatory research study was designed to measure perceived discrimination and healthcare quality during prenatal care and delivery by a community health center, where the majority of patients served belong to historically marginalized ethnic and racial groups.MethodsA 34-question phone survey was administered to women 18 years and older who received prenatal care at the study site during 2020–2021. The primary outcome was perceived discrimination during obstetric care, measured by the 7-question Discrimination in the Medical Setting (DMS) survey. Secondary outcomes included the association of race with perceived discrimination, quality of care, trust of healthcare providers, and perceived control over medical choices.ResultsNinety-seven women completed the survey, 95 of whom were women of color. The sample was dichotomized into Black (n = 49) and non-Black (n = 46). Perceived discrimination for all participants was 21% (20/95), with 31% (15/49) of Black women reporting any discrimination during prenatal care and delivery. Compared to other women of color, Black women reported higher rates of perceived discrimination (31% vs 11%, aOR 3.9 [1.2–12.1], p < 0.05), lower control over health choices (84% vs 98%, aOR 0.1 [0.0–0.8], p < 0.05), and were more likely to perceive lack of respect (12% vs 2%, p = 0.045).ConclusionAlthough perceived discrimination at this community health center was low compared to prior studies, Black women experienced higher rates of discrimination than other women of color.Supplementary InformationThe online version contains supplementary material available at 10.1007/s40615-022-01315-5.

Understanding Lived Experiences of Stigma for People Living with HIV: A Community Based Participatory Research Study

The goal of this project was to better understand the experiences and impacts of HIV stigma and discrimination on people living with HIV and to co-create knowledge that has the potential to challenge existing stigma within the healthcare, social services, and public policy sectors in the province of Alberta, Canada. We employed community-based participatory research and a mixed methods design (survey methods and qualitative interviews) to address these questions. An online survey was completed by 148 people living with HIV and semi-structured interviews were conducted with an additional 20 participants. The research findings have been conceptualized within a social ecological model. The four main categories that emerged from the data included personal level factors attributed to HIV stigma, interpersonal factors related to HIV stigma, community factors related to HIV stigma, and HIV stigma in systems and institutions. Within each ecological domain we highlight the strengths and coping strategies people living with HIV identified in the study. Results will be of interest to health researchers and HIV service providers.

Determinants of immunisation dropout among children under the age of 2 in Zambézia province, Mozambique: a community-based participatory research study using Photovoice

ObjectiveImmunisations are highly impactful, cost-effective public health interventions. However, substantial gaps in complete vaccination coverage persist. We aimed to describe caregivers’ immunisation experiences and identify determinants of vaccine dropout.DesignWe used...

Historical trauma and oppression: Associations with internalizing outcomes among American Indian adults with type 2 diabetes.

American Indian (AI) people experience disproportionate exposure to stressors and health inequities, including type 2 diabetes (T2D) and mental health problems. There is increasing interest in how historical trauma and ongoing experiences of discrimination and marginalization (i.e., historical oppression) interact to influence AI health. The purpose of this study is to examine the relationships between historically traumatic experiences (i.e., boarding schools, relocation programs, and foster care), current reports of historical cultural loss, microaggressions, and their relationship to internalizing symptoms among AI adults living with T2D. This community-based participatory research study with five AI tribal communities includes data from 192 AI adults with T2D recruited from tribal clinics. Results from structural equation modeling revealed that personal experiences in foster care and ancestral experiences in boarding schools and/or relocation were associated with increased reports of historical loss, and indirectly associated with internalizing symptoms through racial microaggressions and historical losses. The findings highlight the importance of considering multiple dimensions of historical trauma and oppression in empirical and practice-based assessments of mental health problems.

Mapping for Engagement: Setting up a Community Based Participatory Research Project to Reach Underserved Communities at Risk for Hepatitis C in Ho Chi Minh City, Vietnam.

BackgroundApproximately 1. 07 million people in Vietnam are infected with hepatitis C virus (HCV). To address this epidemic, the South East Asian Research Collaborative in Hepatitis (SEARCH) launched a 600-patient cohort study and two clinical trials, both investigating shortened treatment strategies for chronic HCV infection with direct-acting antiviral drugs. We conducted ethnographic research with a subset of trial participants and found that the majority were aware of HCV infection and its implications and were motivated to seek treatment. However, people who inject drugs (PWID), and other groups at risk for HCV were under-represented, although injecting drug use is associated with high rates of HCV.Material and MethodsWe designed a community-based participatory research (CBPR) study to engage in dialogues surrounding HCV and other community-prioritized health issues with underserved groups at risk for HCV in Ho Chi Minh City. The project consists of three phases: situation analysis, CBPR implementation, and dissemination. In this paper, we describe the results of the first phase (i.e., the situation analysis) in which we conducted desk research and organized stakeholder mapping meetings with representatives from local non-government and community-based organizations where we used participatory research methods to identify and analyze key stakeholders working with underserved populations.ResultsTwenty six institutions or groups working with the key underserved populations were identified. Insights about the challenges and dynamics of underserved communities were also gathered. Two working groups made up of representatives from the NGO and CBO level were formed.DiscussionUsing the information provided by local key stakeholders to shape the project has helped us to build solid relationships, give the groups a sense of ownership from the early stages, and made the project more context specific. These steps are not only important preliminary steps for participatory studies but also for other research that takes place within the communities.

Crafting Community-Based Participatory Research Stroke Interventions.

Stroke exerts a tremendous burden on individuals, families, communities, and health systems globally. Even more troublesome are the striking disparities faced across diverse populations. These disparities are further exacerbated by the COVID-19 pandemic. Despite efforts to advance stroke research, substantial gaps remain in understanding factors that contribute to stroke disparities, including the Social Determinants of Health. Strategically designed studies and tailored interventions are needed to bridge the inequities high-risk populations face and to meet their specific needs. Community-based participatory research offers an approach to equitably partner with community members to understand and work collaboratively to address community-specific health priorities. In this focused update, we highlight the main processes of community-based participatory research studies and share exemplars from our team's work in stroke research and from the literature. As we continue to face an increasing prevalence of stroke, compounded by the COVID-19 pandemic and ongoing implications of the Social Determinants of Health, partnering with communities to address community-driven health priorities can inform interventions targeted to overcome the disparities faced by certain populations.