Using an Equity in Research Framework to Develop a Community-Engaged Intervention to Improve Preexposure Uptake Among Black Women Living in the United States South.

ABSTRACT: In the U.S. South, over half of new HIV diagnoses occur among Black Americans with research lagging for women who face increased HIV rates and low PrEP uptake, among other health inequities. Community engaged research is a promising method for reversing these trends with established best practices for building infrastructure, implementing research, and translating evidence-based interventions into clinical and community settings. Using the 5Ws of Racial Equity in Research Framework (5Ws) as a racial equity lens, the following paper models a review of a salon-based intervention to improve PrEP awareness and uptake among Black women that was co-developed with beauty salons, stylists, and Black women through an established community advisory council. In this paper we demonstrate how the 5Ws framework was applied to review processes, practices, and outcomes from a community-engaged research approach. The benefits of and challenges to successful collaboration are discussed with insights for future research and community impact.

Mulch Madness: A Community-Academic Partnership for Lead Poisoning Prevention.

BACKGROUND: Soil constitutes a major source of childhood lead exposure, disproportionately affecting communities of color. Mulching offers a low-cost interim control. OBJECTIVES: A community-academic partnership was established for lead poisoning prevention, with a three-fold aim: (1) control soil lead hazards by applying mulch, (2) identify home lead hazards with screening kits, and (3) connect residents to resources to address lead hazards. METHODS: Student volunteers canvassed neighborhoods one month prior to the annual event. They requested consent for mulching, distributed lead screening kits, and screened residents for grant eligibility. Soil samples were collected from each home before mulching. According to principles of community-based participatory research, materials and plans were iterative, guided and adjusted by neighborhood association feedback, and detailed reports about home lead results were shared with each participating resident. Composite neighborhood data and survey results were shared with volunteers and community partners. RESULTS: The project was evaluated in the third (41 homes) and fourth (48 homes) years of implementation. Before mulching, the median soil lead level was over 400 ppm, and after mulching, it was less than 20 ppm. Lead screening kits identified widespread lead hazards in paint, soil, and dust, but not water. Challenges remain in (a) increasing child blood lead testing and (b) increasing submissions for city grant funding for lead abatement. Evaluation surveys indicate a sense of ownership in the project among community partners and high levels of engagement among students. CONCLUSIONS: Community-academic partnerships are an effective tool for lead poisoning prevention, generating evidence for public health action.

A Qualitative Program Evaluation of a Digital Peer Support Group for Formerly Incarcerated People.

OBJECTIVES: A qualitative program evaluation of the Formerly Incarcerated Peer Support (FIPS) group, a peer-led mutual support group for formerly incarcerated people, was conducted to understand participant perceptions of (1) digital delivery via Zoom, (2) curriculum content, (3) roles of group participants, and (4) therapeutic value of FIPS group as it relates to traumatic experiences in prison and ongoing challenges after release. METHODS: Using a community-based participatory action research approach, a qualitative evaluation was conducted with participants in either the 2020 or 2021 curriculum. Semi-structured interviews were conducted via Zoom, transcribed, de-identified, coded, and analyzed via applied thematic analysis and results reviewed with participants. RESULTS: Of 75 formerly incarcerated participants, 20 interviews were conducted and recorded (n = 20). All participants were male, 85% were Black, and the average age was 54.8 years old. Zoom delivery was not preferred, but feasible. Most appreciated the comprehensive and holistic curriculum that enabled peers to gain practical and emotional social support in different areas of life after release. The facilitator's experience with prison programs and relationships within peer networks was essential for recruitment and retention. Participants described (1) feelings of acceptance, (2) examples of teaching and learning from peers' improved insight, trigger management, response modification to stressors, and (3) improved understanding within relationships with those who have not been incarcerated. CONCLUSIONS: Digital delivery of peer-led psychosocial support groups for formerly incarcerated people is feasible and impactful. Future research can further characterize the lingering impacts of institutional traumas and quantify changes.

Interrogation, Negotiation, and Subversion of Power Differentials in Community-Based Participatory Research: A Scoping Review.

OBJECTIVES: To review empirical and peer-reviewed scholarly articles incorporating community-based participatory research approaches and examining discourses of how power differentials are interrogated, negotiated, and redressed within the partnerships using scoping review methodology following The Joanna Briggs Institute framework and Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). DATA SOURCES: Articles were identified across five online databases: Embase, ERIC, PsycINFO, PubMed, and Web of Science. REVIEW METHODS: Keywords used in the search strategy were ("Community-Based Participatory Research" OR "Participa-tory Action Research"). Peer-reviewed scholarly articles discussing in-depth power differentials within the partnership published in English between 2010 and 2020 were included. RESULTS: Findings indicate scholars use critical reflexive qualitative methodologies to recognize and raise relevant questions of power issues between researchers and community stakeholders. Examination of individual biases, assumptions, and exertion of hierarchical top-down power is identified extensively. There is limited analysis on institutional and interdependent power. As a result of raising questions regarding power issues, individual actions to address emerging tensions and conflicts were reported. However, discussions on researchers' efforts to effect institutional and structural changes to redress power imbalances were limited. CONCLUSIONS: Building strong and equitable participatory action research collaborations between researchers and community stakeholders remains an arena of continuous struggle. This review offers some insights and relevant implications to better address power issues within participatory action research partnerships and inform the work of professionals engaged in the development, implementation, and evaluation of health promotion initiatives and policies.

The Impact of Community Engagement in the Design and Implementation of the Flint Registry.

BACKGROUND: The Flint water crisis (FWC) was a public health tragedy caused by crumbling infrastructure, subverted democracy, and indifference toward a predominantly poor and Black community that resulted in lead-in-water exposure, Legionnaires' disease, and emotional and health-related trauma. Through the cooperation of community partners, the Flint Registry (FR) was conceived to track long-term health and improve public health via service connections. OBJECTIVES: This study sought to share the FR's community-partnered, multi-tiered engagement strategy and determine the efficacy of this strategy to engage the community and reach Flint residents. METHODS: Community engagement and impact were measured by collecting and describing feedback from the community engagement strategies and by comparing the demographics of the enrollees recruited through community-engaged recruitment (CER) and non-CER methods. Enroll-ees indicated how they heard about the FR; CER involved direct interaction with a community member. RESULTS: Community engagement strategies incorporated approximately 1,200 people and 7 funded organizations, impacting 22 key areas of FR design and implementation. More than 50% of enrollees heard about the FR through CER methods. They were, on average, more likely to be younger, female, Black/African American, and living outside of Flint during the FWC. CONCLUSIONS: Community engagement elevated voices of those impacted by the FWC. CER methods were as effective as non-CER methods. Although there were no differences in screened measures of social vulnerability, there were in age, gender, and race. CER methods may increase participation and build trust in populations which historically are hesitant to participate in public health efforts.

Combating Chronic Disease with Barbershop Health Interventions: A Review of Current Knowledge and Potential for Big Data.

Community-based participatory research (CBPR) using barbershop interventions is an emerging approach to address health disparities and promote health equity. Barbershops serve as trusted community settings for health education, screening services, and referrals. This narrative mini-review provides an overview of the current state of knowledge regarding CBPR employing barbershop interventions and explores the potential for big data involvement to enhance the impact and reach of this approach in combating chronic disease. CBPR using barbershop interventions has shown promising results in reducing blood pressure among Black men and improving diabetes awareness and self-management. By increasing testing rates and promoting preventive behaviors, barbershop interventions have been successful in addressing infectious diseases, including HIV and COVID-19. Barbershops have also played roles in promoting cancer screening and increasing awareness of cancer risks, namely prostate cancer and colorectal cancer. Further, leveraging the trusted relationships between barbers and their clients, mental health promotion and prevention efforts have been successful in barbershops. The potential for big data involvement in barbershop interventions for chronic disease management offers new opportunities for targeted programs, real-time monitoring, and personalized approaches. However, ethical considerations regarding privacy, confidentiality, and data ownership need to be carefully addressed. To maximize the impact of barbershop interventions, challenges such as training and resource provision for barbers, cultural appropriateness of interventions, sustainability, and scalability must be addressed. Further research is needed to evaluate long-term impact, cost-effectiveness, and best practices for implementation. Overall, barbershops have the potential to serve as key partners in addressing chronic health disparities and promoting health equity.

Using community-based participatory research methods to build the foundation for an equitable integrated health data system within a Canadian urban context.

Health inequalities amplified by the COVID-19 pandemic have disproportionately affected racialized and equity-deserving communities across Canada. In the Municipality of Peel, existing data, while limited, illustrates that individuals from racialized and equity-deserving communities continue to suffer, receive delayed care, and die prematurely. In response to these troubling statistics, grassroots community advocacy has called on health systems leaders in Peel to work with community and non-profit organizations to address the critical data and infrastructure gaps that hinder addressing the social determinants of health in the region. To support these advocacy efforts, we used a community-based participatory research approach to understand how we might build a data collection ecosystem across sectors, alongside community residents and service providers, to accurately capture the data about the social determinants of health. This approach involved developing a community engagement council, defining the problem with the community, mapping what data is actively collected and what is excluded, and understanding experiences of sociodemographic data collection from community members and service providers. Guided by community voices, our study focused on sociodemographic data collection in the primary care context and identified which service providers use and collect these data, how data are used in their work, the facilitators and barriers to data use and collection. Additionally, we gained insight into how sociodemographic data collection could be respectful, safe, and properly governed from the perspectives of community members. From this study, we identify a set of eight recommendations for sociodemographic data collection and highlight limitations. This foundational community-based work will inform future research in establishing data governance in partnership with diverse and equity-deserving communities.

Successes and challenges of partnership working to tackle health inequalities using collaborative approaches to community-based research: mixed methods analysis of focus group evidence.

BACKGROUND: The concept of collaborative approaches involves community residents in joint decision-making processes to maintain or enhance their material and social conditions. During COVID-19, public services saw the benefits of actively collaborating with communities and involving residents in decision-making processes. As communities have resources and assets, they are well-placed to contribute to developing local health and wellbeing initiatives. An interdisciplinary and nationally funded three-phase research programme, "Mobilising community assets to tackle health inequalities", was established with the objective of utilising local, cultural, and natural assets to support health and wellbeing. The current study aimed to synthesise evidence collected by research teams awarded funding in phase one of the programme, comprising academic and non-academic, health and social care, voluntary and community partners. METHODS: Ten online focus groups were conducted with research teams from across the UK exploring the successes and challenges of partnership working to tackle health inequalities using collaborative approaches to community-based research. Eight focus group questions were split between partnership working and health inequalities. RESULTS: Thematic and content analysis produced 185 subthemes from which 12 themes were identified. Major themes representing an above average number of coded responses were research evidence; funding; relationships with partners; health inequalities and deprivation; community involvement; and health service and integrated care systems. Minor themes were link workers and social prescribing; training and support; place-based factors; longevity of programmes; setting up and scaling up programmes; and mental health. CONCLUSIONS: Successes included employing practice-based and arts-based methods, being part of a research project for those not normally involved in research, sharing funding democratically, building on established relationships, and the vital role that local assets play in involving communities. Challenges involved a lack of sustainable financial support, the short-term nature of funding, inconsistencies in reaching the poorest people, obtaining the right sort of research evidence, making sufficient research progress, building relationships with already over-burdened health care staff, and redressing the balance of power in favour of communities. Despite the challenges, participants were mainly optimistic that collective approaches and meaningful co-production would create opportunities for future research partnerships with communities.

Development of a sexual consent intervention for adolescents with intellectual and developmental disabilities.

BACKGROUND: Tailored sexuality education for adolescents with intellectual and developmental disabilities is a crucial, yet unmet, need as this population is particularly at risk for sexual abuse and victimisation. However, there are no evidence-based interventions to specifically address this need. This paper presents the development of an intervention framework to address equity in sexuality education and support adolescents with intellectual and developmental disabilities to understand and provide sexual consent, a foundational aspect of sexuality education and sexual health. METHODS: The Sexual Health Equity Project team used a Community-Based Participatory Research approach to develop a four-module sexual consent intervention for adolescents with intellectual and developmental disabilities. We leveraged a diverse, interdisciplinary team in a suburban Midwestern school district, and used Backward Design to create objectives and assessments which were rooted in findings from qualitative data by special education teachers. RESULTS: The resulting sexual consent intervention, Ask Me First-Choices, is comprised of four modules covering topics including definition of sexual consent; decision-making strategies and practice; communicating consent and refusal, identifying situations of consent and non-consent; and legal issues surrounding consent. Each module is divided into five components for content delivery: (1) introduction, (2) lecture, (3) supplemental activity, (4) assessment, and (5) conclusion. We detail the intervention's unique aspects, emphasising areas where we used Universal Design for Learning principles to support teachers' instruction and students' learning. CONCLUSION: Our efforts to create a sexual consent intervention directly address sexuality education equity issues. We offer commentary on our design process and decisions, as well as recommendations for future groups who want to develop sexual health interventions in similar contexts for students with intellectual and developmental disabilities. Next steps include further testing and validation of the sexual consent intervention to build the evidence-base of sexuality education for adolescents with intellectual and developmental disabilities.

Ngulluk Moort, Ngulluk Boodja, Ngulluk Wirin (our family, our country, our spirit): An Aboriginal Participatory Action Research study protocol.

Globally, Indigenous children have historical and contemporary connections with government child protection services that have caused significant harm to their long-term health and wellbeing. Innovative, culturally secure and recovery focussed service provision is required. This paper describes a research protocol that has been designed by Indigenous researchers led by Indigenous Elders, to explore culturally secure care planning and service delivery in out-of-home care agencies in Australia. Using participatory action research methods, we will collect data using a variety of forums, including focus groups and semi-structured interviews. These data will explore the challenges for out-of-home care agencies in providing culturally secure care-planning, cultural activity and resources, and explore solutions to address factors that influence health and can assist to redress social inequities for Indigenous children. We aim to recruit approximately 100 participants for the qualitative study and 40 participants for the quantitative survey. Study participants will initially be recruited using purposive sampling, and as the study progresses will be recruited using a mixture of purposive and convenience sampling techniques. The rich data that this study is expected to yield, will inform ways to collect cultural information about Indigenous children and ways to provide cultural connections and activities that will have benefit to Indigenous children and families, and a broad range of social services.

Community-Academic Partnerships for Health Research: An Iterative and Transparent Process of Patient Engagement Before the Research Begins.

Background: The root causes of coronavirus disease 2019 (COVID-19) disparities include longstanding systemic racial bias in economic advancement and care delivery, discrimination, lack of access, and social determinants of health. To address these causes, research institutions and health care systems must shift their lens from one that focuses solely on changing behaviors among underserved and vulnerable populations to one that is inward facing. Methods: We worked with a community advisory board and an African American church that has partnered on research for more than a decade to identify community norms, needs, and key resources needed for establishing community-academic partnerships for COVID-19 testing. Participants were purposefully sampled with equal representation from 3 groups: (1) church members and leaders, (2) academic or organization researchers with experience in community-engaged research, and (3) community members with experience participating in community-engaged research. Participants engaged in a hands-on exercise in the church basement as part of a town hall-style meeting. Results: Active discussion led to the identification of business model components salient to COVID-19 testing in an underserved Baltimore community, predominantly made up of African Americans. Our discussion identified key partners, activities, resources, costs, value propositions, community relationships, community groups, communication channels, and outputs for community buy-in. Conclusion: Developing the business case for mutual trustworthiness to be better prepared for future pandemics and public health crises may foster more sustainable community-academic partnerships. Using a Business Model Canvas, we delineate the major components, activities, and value propositions that are needed to achieve authentic community-academic partnerships to advance health equity.

Conducting Community-Based Research in An African Immigrant Population: Lessons Learned.

Background: Although small, the African immigrant population is one of the fastest growing immigrant populations in the United States. Emerging research indicates a high prevalence of noncommunicable preventable chronic conditions in this population. Like other African Americans, African immigrants are mistrustful of the health care system, hampering efforts for prevention and intervention research. Purpose: To describe our experiences conducting 2 studies in an African immigrant community, discuss the lessons learned, and provide advice to researchers interested in conducting research in similar populations. Design: The 2 published studies for which we derive lessons learned for this paper were a cross-sectional study and a qualitative study using focus group interviews. Participants included Zimbabwean immigrants in the Eastern United States recruited at religious festivals and community events. The 2 studies enrolled a total of 135 participants. Results: Of our recruitment goal of 120 in the first study, we enrolled only 98 despite numerous efforts. However, after strategically partnering with a community advisory board (CAB), in the second study, we met our recruitment goal within 4 months. With the CAB, we recruited a larger proportion of men (38% versus 24%). Without the CAB, 350 individuals agreed to participate, but only 98 (28%) returned the questionnaire, whereas with the CAB, 40 agreed to participate, and 37 (93%) successfully completed the study. Conclusion: Conducting health-related research in immigrants requires strategic partnerships with the community to build strong relationships between the research team and the target community. By nurturing these relationships, research teams can effectively access this hard-to-reach population and achieve high participation.

Mental health priorities and cultural-responsiveness of the Mental Health First Aid (MHFA) training for Asian immigrant populations in Greater Boston, Massachusetts.

BACKGROUND: Asians and Asian Americans have the lowest rate of mental health service utilization (25%) in the US compared to other racial/ethnic groups (39 - 52%), despite high rates of depression, anxiety, and suicidal ideation. The lack of culturally-responsive mental health trainings hinders access to mental health services for these populations. We assessed the mental health priorities of Asian communities in Greater Boston and evaluated cultural responsiveness of the Mental Health First Aid (MHFA), a first-responder training teaching participants skills to recognize signs of mental health and substance use challenges, and how to appropriately respond. METHODS: This is community-based participatory research with the Boston Chinatown Neighborhood Center (BCNC), Asian Women For Health (AWFH), and the Addressing Disparities in Asian Populations through Translational Research (ADAPT) Coalition. We conducted focus groups with community-based organization staff and community members to assess mental health priorities of Asian populations in Boston, MA. We then evaluated the utility and cultural-responsiveness of the English-language MHFA for Asian populations through pre- and post-training questionnaires and focus groups with community participants. Paired t-tests were used to evaluate questionnaire responses. Thematic analysis was used to analyze interviews. RESULTS: In total, ten staff and eight community members participated in focus groups, and 24 community members completed the MHFA and pre- and post-training questionnaires. Common mental health challenges in the Asian communities reported by participants were loneliness, high stigma around mental illnesses, academic pressure, and acculturation stress. Compared to pre-training, MHFA participants demonstrated lower personal mental health stigma (p < 0.001) and higher mental health literacy (p = 0.04) post-training. Participants also noted the lack of data statistics and case studies relevant to Asian populations in the training, and desired the training be offered in languages spoken by Asian ethnic subgroups (e.g., Chinese, Vietnamese). CONCLUSION: Cultural-responsiveness of the MHFA for Asian populations could be improved with the inclusion of data and case studies that capture common mental health challenges in the Asian communities and with translation of the MHFA to non-English languages predominant in Asian communities. Increasing the cultural relevance and language accessibility of the MHFA could facilitate wider adoption of these trainings across communities and help to reduce mental health stigma and gaps in literacy and service utilization.

Keeping young researchers out of harm's way: conducting youth participatory action research with young people experiencing homelessness.

Introduction: Youth Participatory Action Research (YPAR) is an approach to conducting research with youth populations in order to effectively engage youth in research that impacts their lives. Young people experiencing homelessness (YEH) are vulnerable to power and social environments in ways that call attention to their experiences in research. Methods: The context for this paper was a qualitative YPAR project to incorporate youth voice into the operations of a larger research study that hired youth as researchers. Participant-researchers provided feedback and consultation with senior staff in order to improve their access to resources, safety, and stability. Results: Themes that emerged from thematic analysis of reflections, discussions, and meetings showed the need for consistent access to food, the risk of environmental violence targeting youth researchers, the structural and experiential barriers to professional engagement, and the benefits that young researchers experienced as part of their work in the study. Discussion: Recommendations and lessons learned are described, notably to ensure that youth are paid and provided food, to construct effective safety plans during fieldwork, and to provide a flexible, inclusive, trauma-responsive approach to supervision of project tasks.

Exploring power and power sharing in participatory health research partnerships: A scoping review protocol.

INTRODUCTION: Participatory health research (PHR) as a research paradigm, guides the research process and strives to achieve positive change in society in the interest of people's health. In this scoping review, PHR will be used as an umbrella term considering a wide range of collaborative research approaches in the health context. PHR is conducted 'with' or 'by' those it intends to benefit, as opposed to 'on' and 'for' them. Their involvement throughout the research process seeks to shift power and decision-making from where they traditionally lay within academia toward community, patient and public end-users. Research cannot be truly participatory without concurrently addressing power dynamics within the partnership and power imbalances in decision making. Therefore, power sharing can be defined as a major factor in building effective academic-community collaborations. This scoping review aims to identify, clarify, and map existing literature on power and power sharing in PHR from both theoretical and practical perspectives. Specifically, we will explore how power is conceptualised throughout the literature, and how power and power sharing are applied and addressed in real-life PHR partnerships. MATERIALS AND METHODS: This scoping review will be conducted in accordance with the guidelines outlined in the Joanna Briggs Institute (JBI) Reviewer's Manual. This scoping review will consider both empirical and non-empirical research that report on understanding power and power sharing in participatory health research partnerships. All appropriate studies will be retrieved from the following five electronic databases: PubMed, Scopus, Embase, PsycINFO, SocIndex. This review will be limited to articles published in English and from January 1998 to March 2024. As the scoping review aims to capture more than peer-reviewed and published literature, it will also include grey literature such as theses and dissertations, reports, conference proceedings, and editorials. Data from the included literature will be extracted based on the data extraction tool, defined in advance. ETHICS AND DISSEMINATION: As primary data will not be collected, ethical approval is not required to conduct the scoping review. The findings of this study will be disseminated through peer-reviewed publications.

Lessons Learned in Forming an Academic-Community Partnership with Families Affected by the Juvenile Justice System.

BACKGROUND: Families of youth involved in the juvenile justice system (YJJ) are integral to YJJ well-being, so it is important to consider the direct input of YJJ families as well as YJJ themselves in justice system reform efforts aiming to improve YJJ health outcomes. OBJECTIVE: Our university research team partnered with one Midwest county's juvenile court, as well as YJJ family members, to form an advisory council to the juvenile court. We report lessons learned through a case study of this council. METHODS: Researchers reviewed and analyzed council records, meeting minutes, and interviews of varied stakeholders, including system representatives, leaders of similar advisory councils, and individuals with lived experience of the juvenile justice system. LESSONS LEARNED: Council sustainability required addressing participation barriers, valuing authentic experiences, seeking out system-based champions, and identifying concrete opportunities for members to be heard. CONCLUSIONS: Investments in community health partnerships with YJJ families could improve system efforts to meet YJJ needs.