Community-based Participatory Research Methods Research Articles

More Than Abortion: Why Reproductive Justice Matters in Cincinnati Post-Roe

ABSTRACT This study examines Reproductive Justice (RJ) for Black women in Cincinnati. While recognizing the importance of ensuring safe, legal, and affordable abortion access, RJ extends beyond this narrow focus and delves into the complex intersections of race, gender, sexuality, and social class. Employing principles from Black feminist praxis in utilizing Community-Based Participatory Research (CBPR) methods, we conducted qualitative interviews to center the voices and experiences of 24 self-identified Black women. The research uncovers three main themes: 1) Ideological violence against Black women, with subthemes: beauty and body image, strength and resilience, and stigmatized mothering; 2) Distrust in daycare services; and 3) Hurdles for low income women in accessing abortion care. These findings shed light on a post-Roe reproductive justice landscape for Black women in Cincinnati.

Weaving community-based participatory research and co-design to improve opioid use treatments and services for youth, caregivers, and service providers.

Integrating the voices of service users and providers in the design and delivery of health services increases the acceptability, relevance, and effectiveness of services. Such efforts are particularly important for youth opioid use treatments and services, which have failed to consider the unique needs of youth and families. Applying community-based participatory research (CBPR) and co-design can facilitate this process by contextualizing service user experiences at individual and community levels and supporting the collaborative design of innovative solutions for improving care. However, few studies demonstrate how to effectively integrate these methods and engage underserved populations in co-design. As such, this manuscript describes how our team wove CBPR and co-design methods to develop solutions for improving youth opioid use treatments and services in Canada. As per CBPR methods, national, provincial, and community partnerships were established to inform and support the project's activities. These partnerships were integral for recruiting service users (i.e., youth and caregivers) and service providers to co-design prototypes and support local testing and implementation. Co-design methods enabled understanding of the needs and experiences of youth, caregivers, and service providers, resulting in meaningful community-specific innovations. We used several engagement methods during the co-design process, including regular working group meetings, small group discussions, individual interviews and consultations, and feedback grids. Challenges involved the time commitment and resources needed for co-design, which were exacerbated by the COVID-19 pandemic and limited our ability to engage a diverse sample of youth and caregivers in the process. Strengths of the study included youth and caregiver involvement in the co-design process, which centered around their lived experiences; the therapeutic aspect of the process for participants; and the development of innovations that were accepted by design partners.

Assistance for Madrasah Diniyyah Teachers in Implementing Children's Al-Qur'an Literacy Learning

Eradicating Al-Qur'an illiteracy is an important agenda item that must be prioritized. It is one of the problems in madrasah diniyyah institutions that requires a broad range of teacher competencies related to meaningful and enjoyable Al-Quran learning in the aspects of planning, preparation, and use of learning media, as well as various evaluation techniques for early Al-Qur'an literacy learning for madrasah diniyyah students. As a solution, to improve competence and skills in carrying out early Al-Qur'an literacy learning, madrasah teachers must be given knowledge and skills in managing early Al-Qur'an literacy learning. The goal is that teachers can provide proper early Qur'an literacy learning for madrasah students. The Community-Based Participatory Research Method (CBPR) is used in this service. This method seeks to facilitate the community in improving academic quality. The empowerment results show that the ability of madrasah teachers to implement early Qur'an literacy learning has significantly increased through several activities that have been carried out, namely planning lesson plans, methods, and techniques of learning the Qur'an, selecting Al-Qur'an learning media, and applying Al-Qur'an learning evaluation techniques. Assistance for madrasah teachers must always be carried out to expand their pedagogical competence.

Assistance for Madrasah Diniyyah Teachers in Implementing Children's Al-Qur'an Literacy Learning

Eradicating Al-Qur'an illiteracy is an important agenda item that must be prioritized. It is one of the problems in madrasah diniyyah institutions that requires a broad range of teacher competencies related to meaningful and enjoyable Al-Quran learning in the aspects of planning, preparation, and use of learning media, as well as various evaluation techniques for early Al-Qur'an literacy learning for madrasah diniyyah students. As a solution, to improve competence and skills in carrying out early Al-Qur'an literacy learning, madrasah teachers must be given knowledge and skills in managing early Al-Qur'an literacy learning. The goal is that teachers can provide proper early Qur'an literacy learning for madrasah students. The Community-Based Participatory Research Method (CBPR) is used in this service. This method seeks to facilitate the community in improving academic quality. The empowerment results show that the ability of madrasah teachers to implement early Qur'an literacy learning has significantly increased through several activities that have been carried out, namely planning lesson plans, methods, and techniques of learning the Qur'an, selecting Al-Qur'an learning media, and applying Al-Qur'an learning evaluation techniques. Assistance for madrasah teachers must always be carried out to expand their pedagogical competence.

LEADING ADVANCE CARE CONVERSATIONS: DEVELOPMENT OF AN INTERVENTION PLATFORM

Abstract The LEAD Guide (Life-Planning in Early Alzheimer’s and Other Dementias) is an advance care planning guide designed specifically for people with dementia and their care partner. It addresses changes in cognition and goals of care, including values and preferences, for end-of-life care and support across the disease continuum. The goal of using the guide is to create a shared understanding of the care recipient’s end-of-life care preferences. We developed an interactive web-based format of the LEAD Guide, an enhanced extension of the original paper guide, for a pilot behavioral intervention. The LEAD Intervention guided community-based Alzheimer’s disease and related dementias (ADRD) dyads (N=60 dyads; persons concerned, at risk, or with a dementia diagnosis and their care partners) through advance care planning (ACP) conversations and documentation. The intervention model included the LEAD Guide, interactive instructions, and educational material about ACP in the context of dementia. We developed the LEAD Intervention using an interactive design and beta testing process (including surveys and focus groups) with our community advisory board members. The board members included professional dementia experts, community partners, and ADRD dyads. Board members were enthusiastic about the LEAD Intervention and provided suggested revisions in three areas; technology (navigation of web-based documents, webpage design), personalization (the need to personalize emails and surveys to individual participants), and evaluation (creating simple scaled and open-text questions to obtain feedback on the intervention activities). Creating a feasible, acceptable, and efficacious intervention requires a multi-faceted approach that incorporates input from end users using community-based participatory research methods.

Combining Mixed Methods and Community-Based Participatory Research Approaches to Identify Neighborhood-Level Needs During the COVID-19 Pandemic

The intersection of mixed methods and community-based participatory research (MMCBPR) provides a promising approach to address health inequities. Drawing from strengths of mixed methods (which provides multiple channels for individuals to share experiences) and community-based participatory research methods (which center and empower marginalized communities in research), MMCBPR allows for the development of impactful and relevant research. This article contributes to the field of mixed methods research by illustrating a novel application of MMCBPR to a pilot research study aimed at understanding community resources and needs during the COVID-19 pandemic. We demonstrate feasibility for MMCBPR methods assessing multilevel structural and social determinants of health during times of social, political, and economic uncertainty and highlight challenges experienced in adopting this approach.

Ethical Issues in Photovoice Studies involving Key Populations: A Scoping Review.

Photovoice, a community-based participatory research method, employs images and words to convey participants' needs, concerns, and desires. It proves particularly valuable in researching marginalized communities who face elevated health risks, disease transmission, and social and health disparities. This paper seeks to investigate the ethical considerations inherent in photovoice research projects. We conducted an extensive literature review spanning four databases to identify pertinent photovoice studies. Ethical issues from the selected articles were identified, categorized, and summarized. Our analysis of twenty-five photovoice studies uncovered various ethical concerns, which had been grouped into informed consent, participant safety and disclosure, privacy and confidentiality, misrepresentation, power dynamics, and compensation. In essence, our findings underscore the importance of addressing these ethical concerns to uphold the rights and autonomy of participants, even as photovoice research strives for authenticity, inclusivity, and empowerment.

Beyond the Body: Using Photovoice to Explore Social Determinants of Diabetes With South Asian Adolescents in the Peel Region of Ontario, Canada

ObjectivesThe higher prevalence of diabetes in the South Asian (SA) population living in Canada spans across generations and is often associated with individual risk factors while undermining the social determinants of health (SDOH). There is a scarcity of studies on the perspectives of SA adolescents with a family history of type 2 diabetes mellitus (T2DM). Learning directly from these adolescents can fill a major gap by providing insight on how the SDOH contribute to disproportionate rates of T2DM in SA immigrant communities. MethodsIn this study, we used Photovoice, which is a community-based participatory research (CBPR) method that involves the use of photography to visually capture the challenges of diabetes prevention from the perspective of those with lived experiences. A group of 15 SA youth were recruited from an adolescent diabetes education program in the Peel Region of Ontario. The youth discussed their images and accompanied written narratives during focus groups. ResultsFour themes emerged from the thematic analysis of the photographs and participant narratives that influence the manifestation of T2DM in SA communities: 1) immigration and resettlement stressors; 2) food insecurity; 3) unhealthy school environments; and 4) academic pressures. ConclusionsFindings suggest the need to address T2DM as a response to unjust conditions and environments rather than as an epidemic entrenched in genetic predisposition, culture, and poor lifestyle choices.

Why and how is photovoice used as a decolonising method for health research with Indigenous communities in the United States and Canada? A scoping review.

Globally, including in North America, Indigenous populations have poorer health than non-Indigenous populations. This health disparity results from inequality and marginalisation associated with colonialism. Photovoice is a community-based participatory research method that amplifies the voices of research participants. Why and how photovoice has been used as a decolonising method for addressing Indigenous health inequalities has not been mapped. A scoping review of the literature on photovoice for Indigenous health research in the United States and Canada was carried out. Five electronic databases and the grey literature were searched, with no time limit. A total of215titles and abstracts and 97 full texts were screened resulting in 57 included articles. Analysis incorporated Lalita Bharadwaj's Framework For Building Research Partnerships with First Nations Communities. Photovoice was selected to improve knowledge mobilisation and participant empowerment and engagement. Studies incorporated relationship building, meaningful data collection, and public dissemination but had a lesser focus on the inclusion of Indigenous peer researchers or participant involvement in analysis. For photovoice to truly realise its decolonising potential, it must be incorporated into a broader participatory and decolonising research paradigm. In addition, more resources are required to support the involvement of Indigenous people in the research process.

Continuum of Trauma: Fear and Mistrust of Institutions in Communities of Color During the COVID-19 Pandemic

Historical, cultural, and social trauma, along with social determinants of health (SDOH), shape health outcomes, attitudes toward medicine, government, and health behaviors among communities of color in the United States (U.S.). This study explores how trauma and fear influence COVID-19 testing and vaccination among Black/African American, Latinx/Indigenous Latin American, and Native American/Indigenous communities. Leveraging community-based participatory research methods, we conducted 11 virtual focus groups from January to March of 2021 with Black/African American (n = 4), Latinx/Indigenous Latin American (n = 4), and Native American/Indigenous (n = 3) identifying community members in Inland Southern California. Our team employed rapid analytic approaches (e.g., template and matrix analysis) to summarize data and identify themes across focus groups and used theories of intersectionality and trauma to meaningfully interpret study findings. Historical, cultural, and social trauma induce fear and mistrust in public health and medical institutions influencing COVID-19 testing and vaccination decisions in communities of color in Inland Southern California. This work showcases the need for culturally and structurally sensitive community-based health interventions that attend to the historical, cultural, and social traumas unique to racial/ethnic minority populations in the U.S. that underlie fear and mistrust of medical, scientific, and governmental institutions.

Using Community-Based Participatory Research to Develop Care Recommendations for People Aging With HIV.

Over 50% of New Yorkers living with human immunodeficiency virus (HIV) are 50 years old or older, and the emotional and physical consequences of being a long-term survivor are significant. This study aimed to identify the practical needs of long-term survivors and older people with HIV (consumers) in New York State and develop recommendations addressing those needs. The HIV + Aging/LTS/Perinatally Diagnosed Subcommittee of the Consumer Advisory and Quality Advisory committees in the New York State AIDS Institute used community-based participatory research (CBPR) methods to design a statewide survey about the care needs of consumers in New York State. This survey, open to consumers, clinicians, and supportive services providers, was launched in June 2021 using Qualtrics. Participants provided demographic data and chose the 3 most important barriers and recommendations from each of 10 categories of issues affecting health care and supportive services. Consumers provided information about their HIV diagnosis and other health conditions. Responses were characterized using basic descriptive statistics. Participants included 124 consumers from 26 counties, 20 clinicians, and 24 supportive service providers. Among consumers, 67% were cisgender men, 27% were African American, and 65% were both long-term survivors and older people with HIV. On average consumers had been diagnosed with HIV for 27 years. Participants were concerned with clinical care coordination, housing needs, cultural representation in mental health services, and financial support of consumers. CBPR is an effective approach to developing consumer-generated recommendations to improve HIV care for long-term survivors and older people with HIV. Town hall formats informed survey design, enabled broad coverage of topics, and ensured that focus remained on priorities most important to consumers. The first quality initiative arising from the study was a routine screening of long-term survivors of HIV to identify functional decline and enhance referral pathways and care linkages.

Using Community-Based Participatory Research Methods to Inform the Development of Medically Tailored Food Kits for Hispanic/Latine Adults with Hypertension: A Qualitative Study.

The Dietary Approaches to Stop Hypertension (DASH) eating plan is the most effective dietary intervention for cardiovascular disease (CVD), but it excludes the consideration of culture and cost. The Hispanic/Latine population is disproportionately affected by CVD, with risks increasing if persons are accustomed to a Westernized diet. This research aims to understand the cultural dietary practices aligned with a DASH eating plan and the social determinants of health impacting fruit and vegetable (F/V) consumption among immigrant Hispanic/Latine individuals at a community-based clinic in Minnesota. Utilizing community-based participatory research methods, a community survey informed the development of DASH-focused, medically tailored food kits of varying F/V modalities. Qualitative feedback was sought out regarding the kits when presented to 15 individuals during in-depth interview sessions to validate the cultural appropriateness of food kits for clinical use. Box A was the highest rated kit (66.7%) and consisted of fresh F/V. The average F/V consumption per day was 2.6 ± 1.4 servings. The food insecurity questionnaires showed high/marginal (40%), low (53.3%), and very low (6.7%) food security. The barriers to consuming F/V were money, time, and transportation. Understanding cultural dietary practices related to the DASH eating plan is necessary to mitigate CVD risk and provide inclusive medical nutrition therapy for Hispanic/Latine populations.

Social Media Literacy Assistance to Ponorogo Instagram Admins as Citizen Journalism Activities

Instagram administrators @ponorogo.update, @setenpo, @iloveponorogo, and @infoponorogo have played an active role in an organic movement of citizen journalists in Ponorogo. This Instagram admin has actively amplified Ponorogo locality-themed information that residents need, especially during the COVID-19 pandemic. Instagram in Ponorogo has been accessed with a high engagement rate. Besides that, the Instagram admin acts as a curator of information and has been able to determine the behavior patterns of netizens in Ponorogo. The social media literacy assistance service uses the Community-Based Participatory Research (CBPR) method, which consists of laying the foundation, planning research, gathering and data analysis, and acting on findings. The CBPR method is then synthesized with a theoretical framework for digital literacy levels. The result of this service program is that the Instagram Ponorogo admin and the service team succeeded in formulating a guidebook for managing Instagram as a medium for disseminating information on Ponorogo residents. This social media literacy guide booklet has been synchronized based on social media regulations and can be used applicatively. All stages of community service are practical strategic steps so that Ponorogo residents are accustomed to receiving credible and valid information (a well-informed society) and minimizing the occurrence of misinformation, disinformation, and hoaxes.

P24-035-23 Formative Intervention Using Community-Based Participatory Research Methods for Medically-Tailored Food Kits for Hispanic/Latinx Patients With Hypertension

P24-035-23 Formative Intervention Using Community-Based Participatory Research Methods for Medically-Tailored Food Kits for Hispanic/Latinx Patients With Hypertension

A culturally informed model to enhance breast, cervical, and colorectal cancer screenings: perspectives of American Indian adults and healthcare providers in rural New Mexico

PurposeAmerican Indian/Alaska Native (AI/AN) populations have some of the lowest cancer screening rates compared to other racial/ethnic populations. Using community-based participatory research methods, we sought to characterize knowledge, attitudes, beliefs, and approaches to enhance breast, colorectal, and cervical cancer screening.MethodsWe conducted 12 focus groups between October 2018 and September 2019 with 96 eligible AI adults and healthcare providers, recruited using non-probability purposive sampling methods from the Zuni Pueblo in rural New Mexico. We used the Multi-level Health Outcomes Framework (MHOF) to conduct a qualitative content analysis identifying mutable systems- and individual- level constructs important for behavior change that we crosslinked with the Community Preventive Services Task Force (CPSTF) recommended evidence-based interventions (EBIs) or approaches.ResultsSalient systems-level factors that limited uptake of cancer screenings included inflexible clinic hours, transportation barriers, no on-demand service and reminder systems, and brief doctor–patient encounters. Individual-level barriers included variable cancer-specific knowledge that translated into fatalistic beliefs, fear, and denial. Interventions to enhance community demand and access for screening should include one-on-one and group education, small media, mailed screening tests, and home visitations by public health nurses. Interventions to enhance provider delivery of screening services should include translation and case management services.ConclusionsThe MHOF constructs crosslinked with CPSTF recommended EBIs or approaches provided a unique perspective to frame barriers and promoters of screening utilization and insights for intervention development. Findings inform the development of culturally tailored, theoretically informed, multi-component interventions concordant with CPSTF recommended EBIs or approaches aimed at improving cancer screening.

Enhancing Digital Literacy for Ustadz/Ustadzah in Modern Islamic Boarding Schools at Banten Province through Sustainable Media Integration

Mastery of digital literacy is one of skills that must be possessed by modern humans in order to compete in the 21st century. However, the use of digital literacy as learning media and information acquisition has not been utilized optimally, included in the three fostered modern Islamic boarding schools (hereinafter pesantren). Therefore, this community service activity has main objective, namely to provide training for ustadz/ustadzah council in designing digital literacy programs that can be integrated in the learning process sustainably. To achieve the objective, this program used Community Based Participatory Research method by involving various parties such as residents of pesantren (kiai, ustadz/ustadzah, librarian and santri), community representatives (literacy activists), and lecturers (universities). Finally, this program has positive implications. This is reflected in: (1) the integration of digital literacy media into the learning process sustainably; (2) the development of a literacy culture; (3) the realization of a literate pesantren environment.

Trapped in housing insecurity: Socioecological barriers to housing access experienced by intimate partner violence survivors from marginalized communities.

Homelessness and intimate partner violence (IPV)do not impact all communities equally. Survivors from marginalized communities-that is communities that have been historically and structurally excluded from social, economic, and political resources-face additional challenges weathering IPV and housing crises. Understanding the housing experiences of marginalized survivors is necessary to achieve housing equity for all survivors. Community-based participatory research methods were utilized to convene 14 listening sessions (7 primary/7 validation) with Black and Latinx IPV survivors with intersectional identities (n = 92). Listening sessions were held in community-based locations including a church, health clinic, social service agency, and private residence. The last five validation sessions were conducted virtually on Zoom due to COVID pandemic protocols. All listening sessions were digitally recorded and transcribed verbatim. Latinx population listening sessions were conducted in Spanish and were implemented and translated with attention to linguistic justice principles. The research team used a modified constructivist grounded theory approach for data analysis.Four overarching themes (and seven subthemes) related to survivors' housing experiences emerged: (1) safety and healing challenges, including living in unhealthy physical environments, not being safe in their homes, and contending with community violence, sexual exploitation threats, and eviction fears; (2) formal service fragmentation/bureaucracy that hampered access to housing resource information and resources; (3) resource scarcity associated with limited affordable housing stock; and (4) systemic oppression resulting from discriminatory treatment and gentrification. Comprehensive multileveled approaches are needed to disrupt the cycle of housing insecurity for IPV survivors from marginalized communities.

Community Conceptions and Perceptions of Climate Change Mitigation and Adaptation in Ternate

The community's input on climate change issues in the city of Ternate is urgently needed. The purpose of this study is to document how the people of Ternate City understand and respond to issues of climate change mitigation and conditions. This study used a community-based participatory research method involving 30 people consisting of community members, teachers, lecturers, and students. Focus group discussions (FGD) and photovoices were conducted to obtain data on causes, impacts and solutions to climate change problems in the city of Ternate. The research results confirmed that the people in the city of Ternate feel the negative impacts of climate change in the city, such as reduced water sources, loss of plant vegetation (for example: mangroves, sago and sea grass), reduced marine habitats, floods and landslides at several points, increased sea level. The main causes of climate change in the city of Ternate are the establishment of non-environmentally friendly development policies, the lack of public knowledge and awareness of climate change adaptation, and the lack of regional regulations at the city to village levels related to environmental issues. The solutions offered by the community are very diverse but according to the community, the government and young people need to conduct education, mitigation, and adaptation to climate changes in the city of Ternate.

Utilizing Community Based Participatory Research Methods in Black/African American and Hispanic/Latinx Communities in the US: The CDC Minority HIV Research Initiative (MARI-Round 4).

The Centers for Disease Control and Prevention Minority HIV Research Initiative (MARI) funded 8 investigators in 2016 to develop HIV prevention and treatment interventions in highly affected communities. We describe MARI studies who used community-based participatory research methods to inform the development of interventions in Black/African American and Hispanic/Latinx communities focused on sexual minority men (SMM) or heterosexual populations. Each study implemented best practice strategies for engaging with communities, informing recruitment strategies, navigating through the impacts of COVID-19, and disseminating findings. Best practice strategies common to all MARI studies included establishing community advisory boards, engaging community members in all stages of HIV research, and integrating technology to sustain interventions during the COVID-19 pandemic. Implementing community-informed approaches is crucial to intervention uptake and long-term sustainability in communities of color. MARI investigators' research studies provide a framework for developing effective programs tailored to reducing HIV-related racial/ethnic disparities.

Addressing and preventing food and housing insecurity among college students: An asset-based approach

Universities have implemented a range of initiatives to address food and housing insecurity, but few studies have examined how campus communities are engaging around these issues. This article explores how North Carolina State University conducted asset-mapping workshops, a community-based participatory research (CBPR) method, to mobilize the campus community and identify solutions to address the root causes of food insecurity and other forms of basic needs insecurity among students. Workshop participants identified exemplary resources focused on addressing students’ immediate needs (e.g., campus food pantries, a student emergency fund). At the same time, they stated that basic needs insecurity is tied to longer-term, systemic issues like wage inequality and a lack of affordable housing. Participants also noted that historically marginalized students (e.g., LGBTQ+, low-income, first-generation college) often experience food and housing insecurity in complex ways requiring targeted solutions. Our results suggest that CBPR methods like asset mapping offer an approach that, when done well, can center the voices and experiences of diverse campus populations to identify and address the complex structural and systemic processes that shape students’ experiences of food and housing insecurity.