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BACKGROUND: The COVID-19 pandemic disproportionately affected people from structurally vulnerable communities. There was a need to improve COVID-19 testing in these communities to reduce viral spread and connect to treatment. OBJECTIVE: We created a partnership between an academic medical center and three community-based organizations (CBOs) to offer low-barrier COVID-19 walk-up testing clinics in Portland, Maine. Our objective was to examine whether the co-created testing clinics reached structurally vulnerable populations. DESIGN: The clinics offered COVID-19 rapid antigen tests three times a week outside CBO sites from January 2022 to May 2023. Clinic staff administered a brief survey on reason for testing and then instructed participants on how to self-swab. While staff processed the test, participants were invited to complete an additional survey about their demographics and testing perceptions. PARTICIPANTS: Adults seeking COVID-19 testing with specific outreach to people who are unhoused, immigrants, and low-income and/or uninsured. MAIN MEASURES: Number of tests conducted and result, reasons for testing, and testing perceptions. KEY RESULTS: Of 246 completed tests, 18 were positive for COVID-19 (7%). Participants sought testing for a variety of reasons, including symptoms (60%), close contact exposure (29%), and/or need for a negative test result to access services or an activity (33%). Overall, people primarily tested due to symptoms with only 7% testing due to close contact exposure alone. The clinics reached vulnerable populations. Among the 130 people completing the participant survey, 39% were unhoused, 22% spoke a language other than English at home, 23% were uninsured, and 46% earned less than $20,000 in 2019. Qualitative field notes captured key elements of clinics that influenced reach, and how this collaboration with CBOs helped build trust with our target populations. CONCLUSIONS: Providing low-barrier walk-up clinics partnering with trusted CBOs was observed to be helpful in reaching structurally vulnerable populations for COVID-19 testing.
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In response to racial inequities in systemic lupus erythematosus (SLE), we aimed to identify practical recommendations for increasing engagement and inclusion of Black adults in SLE research. We used a qualitative, interpretive description approach and recruited 30 Black adults diagnosed with SLE in Michigan to participate in semi-structured interviews. Theme development focused on what factors influenced research perceptions and how research did not meet participant needs and expectations. We developed five main themes: (1) Ethical and equitable research. Participants shared how the impacts of past and present-day racism impacted their willingness to participate in research. (2) Trusting researchers to conduct studies and translate findings to health care. Participants had concerns related to researcher intentions and expressed the importance of communicating research outcomes to participants and translating findings to health care. (3) Drug trial beneficence. When considering drug trials, several people did not consider the potential benefits worth the risk of side effects, and some said they would need to consult with their doctor before agreeing to participate. (4) Altruism. Participants explained how the desire to help others was a motivating factor for participating in research and donating biological samples. (5) Research priorities. Participants described a need for better treatments that value their overall health and well-being. Findings indicate that researchers can center the perspectives of Black people with SLE across the research life cycle-beyond a focus on adequate racial diversity among study participants.
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Lúpus Eritematoso Sistêmico , Adulto , Humanos , Lúpus Eritematoso Sistêmico/diagnóstico , Pesquisa Qualitativa , População Negra , Atenção à Saúde , ConfiançaRESUMO
BACKGROUND: Spanish-speakers with non-English language preference and complex medical needs suffer disparities in quality of care, safety, and health outcomes. Communication challenges during prolonged hospitalizations for complex illnesses negatively influence how this group engages in their care and decision-making while hospitalized. Limited literature capturing the perspectives of Spanish-speaking patients in this context exists. Given the impact of language barriers on care and medical decision-making, this study documents the experiences of Spanish-speaking patients with NELP and hospitalized with complex care needs as well as caregivers and community leaders. METHODS: Using community-engaged recruitment strategies and semi-structured interviews and a focus group, we gathered insights from Spanish-speaking patients hospitalized for prolonged periods, caregivers, and community leaders from three geographic regions. Data were deidentified, transcribed, translated, coded in duplicate, and analyzed guided by grounded theory using NVivo. RESULTS: We interviewed 40 participants: 27 patients, 10 caregivers and 3 community leaders. We identified four major themes: (1) Disconnected experiences impeding interactions, communication, and decision-making (2) Inadequate interpreter services (3) Benefits and consequences of family at the bedside (4) Community -informed recommendations. CONCLUSION: The study showed that in-person interpreters were preferred to virtual interpreters; yet interpreter access was suboptimal. This resulted in ad hoc family interpretation. Participants noted language negatively impacted patient's hospital experience, including decreasing confidence in medical decision-making. Recommendations from patients, caregivers, and community leaders included expanding interpreter access, bolstering interpreter quality and accuracy, and increasing resources for patient education.
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Cuidadores , Barreiras de Comunicação , Hispânico ou Latino , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Hispânico ou Latino/psicologia , Idoso , Adulto , Tomada de Decisões , Grupos Focais , Hospitalização , Idioma , Entrevistas como Assunto , Idoso de 80 Anos ou maisRESUMO
OBJECTIVE: Food insecurity is associated with eating disorder psychopathology. This Spotlight describes why food pantries could be promising partners for disseminating and implementing eating disorder interventions. METHOD: Researchers are increasingly collaborating with community-based organizations to improve access to health interventions, because community-based organizations overcome structural barriers to traditional healthcare by being embedded physically in the communities they serve, convenient to visit, regularly frequented, and led by trusted community members. RESULTS: We describe strategies we have identified with our partner to disseminate and implement our digital intervention for binge eating; we also discuss ways we support the pantry's needs to improve the mutuality of the partnership. DISCUSSION: The potential benefits of partnerships with food pantries make this an area to explore further. Future research directions include deeply engaging with food pantries to determine how pantries benefit from disseminating and implementing eating disorder interventions and how to intervene in non-stigmatizing ways, what resources they need to sustainably support these efforts, what eating disorder intervention modalities guests are willing and able to engage with, what intervention adaptations are needed so individuals with food insecurity can meaningfully engage in eating disorder intervention, and what implementation strategies facilitate uptake to intervention sustainably over time.
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BACKGROUND: Uterine fibroids are non-cancerous neoplasms that arise from the uterus affecting over 75% of women. However, there is a disparity with Black women having an increased prevalence of nearly 80%. Black women also experience increased symptom burden, including younger age at the time of diagnosis and increased number and volume of fibroids. Less is known about other ethnoracially diverse women such as Latinas and the potential cultural impacts on fibroid burden and treatment. METHODS: Community engagement studios were conducted to facilitate discussions with stakeholders on their uterine fibroid and menstruation experience. We recruited Black women (n = 6) diagnosed with uterine fibroids and Latinas (n = 7) without uterine fibroids. We held two virtual community engagement studios split by uterine fibroid diagnosis. The studios were not audio recorded and notes were taken by four notetakers. The notes were thematically analyzed in Atlas.ti using content analysis. RESULTS: Participants felt there was a lack of discussion around menstruation overall, whether in the home or school settings. This lack of menstruation education was pronounced when participants had their first menstruation experience, with many unaware of what to expect. This silence around menstruation led to a normalization of painful menstruation symptoms. When it came to different treatment options for uterine fibroids, some women wanted to explore alternative treatments but were dismissed by their healthcare providers. Many participants advocated for having discussions with their healthcare provider about life goals to discuss different treatment options for their uterine fibroids. CONCLUSION: Despite uterine fibroid diagnosis, there is silence around menstruation. Menstruation is a normal biological occurrence and needs to be discussed to help prevent delayed diagnosis of uterine fibroids and possibly other gynecological disorders. Along with increased discussions around menstruation, further discussion is needed between healthcare providers and uterine fibroid patients to explore appropriate treatment options.
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Leiomioma , Menstruação , Feminino , Humanos , População Negra , Dismenorreia , Hispânico ou Latino , Leiomioma/complicações , Negro ou Afro-AmericanoRESUMO
BACKGROUND: The engagement of community partners in equitable partnerships with academic teams is necessary to achieve health equity. However, there is no standardized approach to support bidirectional engagement among research stakeholders in the context of partnership equity at each phase of the research process. OBJECTIVE: We describe the development of a systematic framework along with competencies and tools promoting bidirectional engagement and equity within community-academic partnerships at each phase of the research process. DESIGN: We conducted a four-step research process between November 2020 and December 2023 for framework development: (1) a narrative literature review; (2) expansion of existing bidirectional, equitable framework; (3) a scientific review with two groups of cognitive interviews (five community engagement researchers and five community leaders and members); and (4) three community-based organization leader focus groups. Thematic analysis was used to analyse focus group data. RESULTS: Using results of each step, the framework was iteratively developed, yielding four phases of the bidirectional engagement and equity (BEE) research framework: Relationship building and assessment of goals and resources (Phase I); form a community-academic partnership based on shared research interests (may include multilevel stakeholders) (Phase II); develop a research team comprising members from each partnering organization (Phase III); and implement the six-step equitable research process (Phase IV). Bidirectional learning and partnership principles are at the core of the partnership, particularly in Phases II-IV. Competencies and tools for conducting an equitable, engaged research process were provided. DISCUSSION: This conceptual framework offers a novel, stepwise approach and competencies for community-academic partners to successfully partner and conduct the research process equitably. CONCLUSION: The BEE research framework can be implemented to standardize the conduct of an equitable, engaged research process within a community-academic partnership, while improving knowledge and trust across partners and, ultimately, an increased return on investment and sustainability to benefit both partners in the area of health outcomes and ultimately health equity. PATIENT OR PUBLIC CONTRIBUTION: The development of this framework was co-led with a community organization in which two leaders in the organization were equitably involved in each phase of the research process, including grant development, study design, participant recruitment, protocol development for focus groups and community and researcher review, framework design and content and dissemination of this manuscript as a co-author. For grant development, the community leader completed the give-get grid components for them as a partner. They also wrote up their lived experience in the research process for the progress report. For the focus groups, one community leader co-led the focus group with the academic partner. For the narrative review, the community leaders did not actively conduct the narrative review but observed the process through the academic partners. One community leader wrote the section 'relationship building' and 'bidirectional learning' sections with the assistance of the academic partner, while they both equally provided input on other sections of the manuscript alongside academic partners. The community leaders have extensive experience in leading programmes, along with partnering with researchers to address health equity issues and improve health outcomes.
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Relações Comunidade-Instituição , Grupos Focais , Equidade em Saúde , Participação dos Interessados , Humanos , Pesquisa Participativa Baseada na Comunidade/organização & administração , Comportamento Cooperativo , Participação da Comunidade/métodosRESUMO
BACKGROUND: HIV prevention remains a global priority, especially in sub-Saharan Africa. Our research team previously developed an evidence-based peer group program for HIV prevention called Mzake ndi Mzake (Friend to Friend). A community-engaged collaboration adapted the program for community ownership and implementation. Here we report whether this HIV prevention program, implemented by community volunteers, increased condom use among sexually active individuals in rural Malawi. METHODS: Three communities sequentially rolled out the program. Effectiveness was evaluated using a stepped wedge design. Repeated surveys 11-13 months apart were conducted between 2016 and 2019. At Time 1, no community had offered the intervention. At Time 2, the first community had offered the intervention and two had not (control group). At Time 3, two communities had offered the intervention and one had not (control group). We used two condom use indicators; condom use frequency in the last 2 months (N = 771) and condom use at last sex (N = 880). The analytical sample included all sexually active persons answering that question at one or more time points. Mixed-effects cumulative logit and Generalized Estimating Equation (GEE) models were used to model the two condom indicators over time, controlling for demographic factors, UNAIDS HIV knowledge, safer sex self-efficacy and partner communication. RESULTS: This peer group intervention implemented by trained community volunteers increased both condom use indicators at Times 2 and 3. In the final adjusted models with non-significant factors removed, condom use in the last two months increased for the intervention group vs. control group [Time 2: Adjusted Odds Ratio (AOR) = 1.59 (1.15, 2.21); Time 3: AOR 2.01 (1.23, 3.30)]. Similarly, condom use at last sex increased for the intervention group vs. control group [Time 2: AOR = 1.48 (1.08, 2.03); Time 3: AOR 1.81 (1.13, 2.90)]. Other significant predictors of greater condom use were also described. Although the intervention increased UNAIDS HIV knowledge, knowledge did not predict condom use. CONCLUSIONS: In this community-engaged implementation study, an evidence-based peer group program for HIV prevention increased condom use when delivered by trained community volunteers. Community ownership and program delivery by trained volunteers offer an innovative and cost-effective strategy to address ongoing HIV prevention needs without overburdening healthcare systems in sub-Saharan Africa. TRIAL REGISTRATION: Clinical Trials.gov NCT02765659 Registered May 6, 2016.
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Preservativos , Infecções por HIV , Grupo Associado , Sexo Seguro , Voluntários , Adolescente , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem , Preservativos/estatística & dados numéricos , Promoção da Saúde/métodos , Infecções por HIV/prevenção & controle , Malaui , Avaliação de Programas e Projetos de Saúde , População Rural , Voluntários/psicologiaRESUMO
Genetic counseling research requires a comprehensive approach since it frequently serves as the foundation for clinical care practice. Genetic counseling students play a pivotal role in advancing the profession, as they contribute a significant proportion of the research conducted within the genetic counseling community. However, a prevailing trend of convenience sampling of genetic counselors has limited the diversity of perspectives in student research projects. This article promotes a strategy for greater inclusivity and equity in research by emphasizing community-engaged and empowered research through the perspective of restorative justice. Reflecting on the shadow of the harmful ideologies of eugenics in our profession underscores the need to amplify patients' voices and diverse experiences. Community-engaged research-in collaboration with individuals, families, and communities directly impacted by genetic counseling-transcends traditional research paradigms, empowering patients and addressing systemic inequities. Incorporating community-engaged research into genetic counseling student projects aims to empower future professionals to better understand patient perspectives and needs while working toward addressing historical injustices. This article explores the potential benefits and pathways of incorporating community-engaged research and restorative justice principles into genetic counseling scholarly work, promoting empathy, cultural responsiveness, and ultimately, a more patient-centered approach to research and clinical care. By embracing this collective journey toward authentic partnership in the production of high-quality evidence in genetic counseling student research and more broadly, genetic counseling can become a more just and inclusive practice.
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PURPOSE: In an effort to address persistent inequities in maternal and infant health, policymakers and advocates have pushed to expand access to doula care. Several states, including California, now cover doula services through Medicaid. As coverage expands, research on the impact of doula care will likely increase. To develop best practices for research, it is critical to engage community doulas, clients, and other key stakeholders. DESCRIPTION: Our overarching goal was to build capacity for future doula- and client-centered research on community doula care. First, we established a Steering Committee with members from seven relevant stakeholder groups: community doulas, former or potential doula clients, clinicians, payers, advocates, researchers, and public health professionals. Second, we conducted a needs assessment to identify and understand stakeholders' needs and values for research on community doula care. Findings from the needs assessment informed our third step, conducting a research prioritization to develop a shared research agenda related to community doula care with the Steering Committee. We adapted the Research Prioritization by Affected Communities protocol to guide this process, which resulted in a final list of 21 priority research questions. Lastly, we offered a training to increase capacity among community doulas to engage in research on community doula care. ASSESSMENT: Our findings provide direction for those interested in conducting research on doula care, as well as policymakers and funders. CONCLUSION: The findings of our stakeholder-engaged process provide a roadmap that will lead to equity-oriented research centering clients, doulas, and their communities.
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Doulas , Humanos , Fortalecimento Institucional , California , MotivaçãoRESUMO
In Nepal, menstrual practices, and particularly chhaupadi, impose restrictive norms affecting women's daily lives. Chhaupadi is a tradition that involves isolating women and girls during menstruation and after childbirth, along with following other restrictions, which have physical and mental health implications. To date, interventions have yet to fully and sustainably address harms associated with chhaupadi across the country. This two-phase study conducted in Dailekh, Nepal facilitated the development of community-created solutions to mitigate chhaupadi's adverse impacts on women's health. Using Human Centred Design and a community-engaged approach, the discovery phase identified key stakeholders and contextualised chhaupadi, while the subsequent design phase facilitated the development of five community-created interventions. These included leveraging female community health volunteers (FCHVs) for counselling and awareness, targeting mothers to drive behavioural change, engaging the wider community in behaviour change efforts, empowering fathers to catalyse change at home, and training youth for advocacy. The FCHV intervention concept was selected as the most promising intervention by the women co-design team, warranting broader exploration and testing. Additionally, while it is imperative for interventions to prioritise tackling deleterious aspects of chhaupadi, interventions must also acknowledge its deep-rooted cultural significance and history and recognise the positive aspects that some women may wish to preserve.
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BACKGROUND: While a major goal of community-based participatory research (CBPR) is to improve community health; it is unclear how to measure longstanding success of CBPR. OBJECTIVE: We sought to determine the impact of ongoing CBPR on cardiometabolic health of participating communities, including in people not directly participating in research. METHODS: We used linear mixed-effects modelling with electronic medical records from 2002 to 2012 from the Yukon-Kuskokwim Health Corporation, which provides health care to all Alaska Native people in southwestern Alaska, to compare rates of change in cardiometabolic risk factors between communities that did and did not participate in ongoing CBPR beginning in 2003. RESULTS: We analysed 1,262,035 medical records from 12,402 individuals from 10 study and 38 control communities. Blood pressure declined faster in study than in control communities: systolic blood pressure (0.04 mmHg/year; 95% confidence interval [CI]: 0.01, 0.08); diastolic blood pressure (DBP) (0.07 mmHg/year; 95% CI: 0.04, 0.09). Body mass index increased 0.04 units/year faster in study communities than in control communities (95% CI: 0.03, 0.05). More study visits were associated with faster reduction of DBP and triglyceride levels in study communities. CONCLUSIONS: Ongoing CBPR may improve overall cardiometabolic health in communities, perhaps by increasing engagement in health and advocacy.
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Pesquisa Participativa Baseada na Comunidade , Registros Eletrônicos de Saúde , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Registros Eletrônicos de Saúde/estatística & dados numéricos , Alaska/epidemiologia , Pressão Sanguínea , Fatores de Risco Cardiometabólico , Nativos do Alasca/estatística & dados numéricos , Índice de Massa Corporal , Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/prevenção & controle , Idoso , Adulto JovemRESUMO
BACKGROUND: The present commentary highlights the pressing need for systematic research to assess the implementation and effectiveness of medications for opioid use disorder, used in conjunction with peer recovery support services, to improve treatment outcomes for individuals with opioid use disorder in Central Appalachia. This region, encompassing West Virginia, Eastern Kentucky, Southwest Virginia, East Tennessee, and Western North Carolina, has long grappled with a disproportionate burden of the opioid crisis. Due to a complex interplay of cultural, socioeconomic, medical, and geographic factors, individuals in Central Appalachia face challenges in maintaining treatment and recovery efforts, leading to lower success rates. APPROACH: To address the issue, we apply an exploratory approach, looking at the intersection of unique regional factors with the utilization of medications for opioid use disorder, in conjunction with peer recovery support services. This combined treatment strategy shows promise in addressing crucial needs in opioid use disorder treatment and enhancing the recovery journey. However, there are significant evidence gaps that need to be addressed to validate the expected value of incorporating peer support into this treatment strategy. CONCLUSION: We identify nine obstacles and offer recommendations to address the gaps and advance peer recovery support services research. These recommendations include the establishment of specific partnerships and infrastructure for community-engaged, peer recovery support research; improved allocation of funding and resources to implement evidence-based practices such as peer support and medication-assisted treatment; developing a more precise definition of peer roles and their integration across the treatment and recovery spectrum; and proactive efforts to combat stigma through outreach and education.
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Transtornos Relacionados ao Uso de Opioides , Grupo Associado , Humanos , Região dos Apalaches , Epidemia de Opioides , Tratamento de Substituição de Opiáceos/métodos , Apoio SocialRESUMO
BACKGROUND: Medical school curricula strive to train community-engaged and culturally competent physicians, and many use service learning to instill these values in students. The current standards for medical service learning frameworks have opportunities for improvement, such as encouraging students to have more sustainable and reciprocal impact and to ingrain service learning as a value to carry throughout their careers rather than a one-time experience. PEDS 220: A COVID-19 Elective is a Stanford University course on the frontlines of this shift; it provides timely education on the COVID-19 pandemic, integrating community-oriented public health work to help mitigate its impact. METHODS: To analyze our medical service learning curriculum, we combined qualitative and quantitative methods to understand our students' experiences. Participants completed the Course Experience Questionnaire via Qualtrics, and were invited to complete an additional interview via Zoom. Interview transcripts were analyzed using an interactive, inductive, and team-based codebook development process, where recurring themes were identified across participant interviews. RESULTS: We demonstrate through self-determination theory that our novel curriculum gives students valuable leadership and project management experience, awards strong academic and community-based connections, and motivates them to pursue future community-engaged work. CONCLUSIONS: This educational framework, revolving around students, communities, and diversity, can be used beyond the COVID-19 pandemic at other educational institutions to teach students how to solve other emergent global health problems. Using proven strategies that empower future physicians to view interdisciplinary, community-engaged work as a core pillar of their responsibility to their patients and communities ensures long-term, sustainable positive impact. TRIAL REGISTRATION: N/A.
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COVID-19 , Currículo , Humanos , COVID-19/epidemiologia , SARS-CoV-2 , Estudantes de Medicina/psicologia , Educação de Graduação em Medicina/métodos , Pandemias , Competência Cultural/educação , Feminino , MasculinoRESUMO
Black women are sorely underrepresented in studies of Alzheimer's disease and related dementias (ADRD) despite higher rates of ADRD diagnoses than in non-Hispanic White women. There are many reasons for underrepresentation, including medical mistrust, limited access to clinical studies, and restrictive study inclusion criteria. These pervasive barriers to research participation are often not considered during study development and, if eventually thought of tend to be after the fact. Community-engaged research (CER) approaches are an effective method for reducing participation barriers. This article describes how CER approaches were used to develop the Black Women Inflammation and Tau Study (BWITS), a prospective study to identify biopsychosocial risk factors for ADRD in Black women. Guidelines discussed here for future ADRD research in diverse populations are informed by Community-Based Participatory Research (CBPR), the National Institute on Minority Health and Health Disparities (NIMHD), and the Patient-Centered Outcomes Research Institute (PCORI). HIGHLIGHTS: Understand the historical tragedies related to medical practices and research designs that may contribute to the underrepresentation of Black Americans in research studies today. Highlight community-engaged research approaches that effectively reduce participation barriers in minoritized groups. Review Community-Based Participatory Research, National Institute of Minority Health and Health Disparities, and the Patient-Centered Outcomes Research Institute guidelines for conducting research with minoritized communities. Describe using the three frameworks to inform the study development protocol for the Black Women Inflammation and Tau Study. Conclude by offering study design considerations that we hope can be a helpful starting point for others conducting research with minoritized communities.
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BACKGROUND: Black cis-gender women are disparately affected by HIV and require prioritization in prevention efforts, including pre-exposure prophylaxis (PrEP). Preparing trusted community leaders such as salon stylists as health-based opinion leaders may be promising to increasing awareness, knowledge, and uptake of PrEP among Black women. We sought to develop training and better understand stylists who may participate in a salon-based PrEP intervention for Black women. METHODS: A community-research partnership designed a stylist training workshop for stylists with a majority Black women clientele. A two-session workshop focused on HIV knowledge, HIV prevention including PrEP, and the role of an opinion leader to influence community social and health norms. An exploratory research design and analysis was conducted to examine stylists and provide training feedback. CONCLUSIONS: Stylists showed a high level of knowledge and willingness to serve as an opinion leader in their salons and with their communities. Stylists also verified medical mistrust in the healthcare system that makes community-based interventions attractive. This article discusses how the training was piloted and accepted by stylists.
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Infecções por HIV , Profilaxia Pré-Exposição , Humanos , Feminino , Confiança , Promoção da Saúde , Infecções por HIV/prevenção & controleRESUMO
BACKGROUND: Effective dissemination of information about evidence-based programs (EBPs) is essential for promoting health equity. Faith-based and other community organizations have difficulty locating EBPs for implementation in their settings. A research team engaged in a systematic search to identify a menu of EBPs that could be offered to African American FBOs as part of a community-engaged implementation study. Methods. A four-stage process was developed to search for EBPs meeting seven inclusion criteria for dissemination in faith-based organizations (FBOs). Criteria included relevance to identified health disparity topics, endorsement on a federal website, free access to downloadable program materials, facilitator guidance, no requirements for health care providers, and culturally relevant materials for African American communities. RESULTS: Nineteen government websites were searched. Sixty-six potential EBPs were identified. Six EBPs met all inclusion criteria. DISCUSSION: The search for EBPs that met seven criteria for implementation in African American FBOs demonstrated challenges that have been described in the literature. Researchers encountered a lack of standardized terminology for identifying EBPs on federal websites, frequent requirement for health care providers or clinics and/or fees for training and materials. FBOs are supportive and safe places to offer EBPs to promote health, and EBPs need to be designed and disseminated to meet the needs and preferences of FBOs. Including members of FBOs and others in the community in EBP development, design, and dissemination, such as searchable health promotion EBP registries, can increase the likelihood that effective programs intended to address health disparities are readily accessible to FBOs for implementation.
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The National Commission to Address Racism in Nursing (2022) cites structural and systemic racism in nursing education as significant factors contributing to retention disparities among minoritized students. Establishing a culture of belonging was outlined in the Commission's report as essential to addressing these disparities. At the University of California, Irvine, the Centering Youth & Families for Empowerment and Resilience (CYFER) Lab embraces belonging and collectivity as core principles. The CYFER Lab supports the well-being and professional development of minoritized and/or marginalized health sciences students through community-engaged research and self-care practices. Our commentary examines three core Lab practices-Buen Vivir, prioritizing well-being, and nonhierarchical structures-through the lens of decolonization, an approach we posit can enhance inclusivity and belonging in nursing education. The achievements and growth of our Lab members, along with our expanding body of community-based research, demonstrate that such practices provide an effective alternative model for success in research and education.
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The current study is part of a community engaged planning phase and aimed to identify perceptions related to the prevalence of violent crime, crime contributors, the relationship between the community and law enforcement, and potential interventions and solutions. In March 2021, semistructured interviews were conducted with individuals from five groups who resided or worked in Bessemer, Alabama: (1) Law Enforcement, (2) Residents, (3) Civic Leaders, (4) Community Leaders, and (5) Victims of Crime. Interviews lasted approximately 60 min and were audio recorded, transcribed, and analyzed according to the guidelines of thematic analysis using NVivo 12. Emerging themes were examined in accordance with the CDC Social-Ecological Model: A Framework for Prevention. Participants (N = 18) were 50.0% female and 77.8% African American with an age range of 25-59 (mean = 43.4 years). Themes that emerged related to crime were: (1) impact, (2) contributors, and (3) solutions. Results indicate that impacts of violent crime at the individual level focused on fear, which led to widespread mental health issues. Relationship level impacts included a lack of trust of law enforcement and neighbors, and community level impacts were decreased neighborhood social cohesion as well as decreased safety. At the societal level, the poor reputation of the city was consistently highlighted. For contributors of crime, being a youth under age 30, drugs, and money were discussed as factors at the individual level. At the relationship level, participants mentioned poor parenting and gangs as crime contributing factors to violent crime. Furthermore, contributing issues related to underresourced schools as well as a poor relationship with law enforcement were brought up at the community level. Similarly, poverty was the overarching contributing issue at the societal level. Solutions that emerged included: education and training in life skills, focusing on young people, family/parenting, conflict resolution programs, programs within schools, improved relationships with law enforcement, and inclusive economic opportunities. Intervention plans are discussed that can merge these stakeholder findings with other data sources.
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Crime , Violência , Adolescente , Humanos , Feminino , Adulto , Pessoa de Meia-Idade , Masculino , Pesquisa Qualitativa , Meio Social , Características de ResidênciaRESUMO
This article describes the development of a distance-delivered social skills training program for adults with Williams syndrome (SSTP-WS) through a community engaged approach. Throughout six phases of development, the research team received input from adults with Williams syndrome, caregivers, service providers, educators, and researchers on (a) the need for a training program and topics to be addressed (Phase 1), (b) an initial draft of the SSTP-WS (Phase 3), (c) the intervention pilot study (Phase 5), and (d) feedback to provide context for the results of the study (Phase 6). The development of the SSTP-WS resulted in an intervention aligned with the Williams syndrome community's values and needs that supports the unique cognitive and behavioral phenotypes and social characteristics of this low incidence disability population.
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INTRODUCTION: The Achieving Cancer Equity through Identification, Testing, and Screening (ACE-ITS) program is a community-engaged framework to improve mammography maintenance and rates of genetic risk assessment, counseling, and testing using a multilevel approach that enhances patient navigation through mobile health and community education. METHODS: The ACE-ITS program is based on the National Institute of Minority Health and Health Disparities research framework focused on the individual (genetic testing, screening navigation) and community (community-based breast health education) levels and targeted to the biological- (genetic risk), behavioral- (mammography screening), sociocultural- (underserved Black and Hispanic women), and the health care system (patient navigation, automated text messages)-related domains. We further integrate the Practical Robust Implementation and Sustainability Model to describe our program implementation. RESULTS: In collaboration with genetic counselors and community partners, we created educational modules on mammography maintenance and genetic counseling/testing that have been incorporated into the navigator-led community education sessions. We also implemented a universal genetic risk assessment tool and automated text message reminders for repeat mammograms into our mammography navigation workflow. Through the ACE-ITS program implementation, we have collaboratively conducted 22 educational sessions and navigated 585 women to mammography screening over the 2020-2021 calendar years. From January to December 2021, we have also conducted genetic risk assessment on 292 women, of whom 7 have received genetic counseling/testing. CONCLUSIONS: We describe a multilevel, community-engaged quality improvement program designed to reduce screening-related disparities in Black and Hispanic women in our catchment area.