Community-based Participatory Research

基于社区的参与式研究
  • 文章类型: Journal Article
    背景:参与调查可以塑造与研究主题相关的参与者的感知。管理疫苗犹豫问卷可能会对参与者的疫苗信心产生负面影响。对于在线和跨文化数据收集尤其如此,因为在管理电子调查之后通常不提供文化安全的健康教育以纠正错误信息。
    目标:为了创建一个文化上安全的,在线,针对土著青年的COVID-19疫苗信心调查旨在收集地道,他们的疫苗经验的文化相关数据,参与者之间导致进一步疫苗混淆的风险较低。
    方法:使用原住民远程健康知识圈共识方法,一个学者团队,卫生保健提供者,政策制定者,社区合作伙伴审查了公共卫生研究中使用的COVID-19疫苗犹豫调查,分析了潜在风险,并为电子土著疫苗信心调查和调查项目创建了一个框架。
    结果:更安全的在线调查项目的框架基于2个原则,第一种不伤害的方法,并应用基于优势的镜头。过程中确定的相关调查领域包括社会人口统计信息,参与者与他们的社区的联系,健康信息的首选来源,家庭成员和同龄人之间的疫苗接种吸收,以及个人对疫苗的态度。共制定了44项调查项目,包括5个开放式项目,以提高数据的真实性和对土著青年经验的分析。
    结论:使用土著共识方法,我们开展了一项涉及文化相关领域的在线COVID-19疫苗信心调查,并降低了土著参与者中错误信息放大的风险和对疫苗信心的负面影响.我们的方法可以与土著社区合作,适应其他在线调查开发。
    BACKGROUND:  Participating in surveys can shape the perception of participants related to the study topic. Administering a vaccine hesitancy questionnaire can have negative impacts on participants\' vaccine confidence. This is particularly true for online and cross-cultural data collection because culturally safe health education to correct misinformation is typically not provided after the administration of an electronic survey.
    OBJECTIVE:  To create a culturally safe, online, COVID-19 vaccine confidence survey for Indigenous youth designed to collect authentic, culturally relevant data of their vaccine experiences, with a low risk of contributing to further vaccine confusion among participants.
    METHODS:  Using the Aboriginal Telehealth Knowledge Circle consensus method, a team of academics, health care providers, policy makers, and community partners reviewed COVID-19 vaccine hesitancy surveys used in public health research, analyzed potential risks, and created a framework for electronic Indigenous vaccine confidence surveys as well as survey items.
    RESULTS:  The framework for safer online survey items is based on 2 principles, a first do-no-harm approach and applying a strengths-based lens. Relevant survey domains identified in the process include sociodemographic information, participants\' connection to their community, preferred sources for health information, vaccination uptake among family members and peers, as well as personal attitudes toward vaccines. A total of 44 survey items were developed, including 5 open-ended items to improve the authenticity of the data and the analysis of the experiences of Indigenous youth.
    CONCLUSIONS:  Using an Indigenous consensus method, we have developed an online COVID-19 vaccine confidence survey with culturally relevant domains and reduced the risk of amplifying misinformation and negative impacts on vaccine confidence among Indigenous participants. Our approach can be adapted to other online survey development in collaboration with Indigenous communities.
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  • 文章类型: Journal Article
    认识到伦理和哲学审议对环境流行病学的重要性,1996年,建立了该行业的道德准则。1999年,国际环境流行病学学会通过了这些准则。2012年和2023年对准则进行了修订,以确保继续与该领域面临的主要问题相关。包括专业行为的规范标准,该准则分为四个小节:(1)对参与研究的个人和社区的义务;(2)对社会的义务;(3)有关资助者/赞助者和雇主的义务;(4)对同事的义务。通过2023年《道德准则》的修订,国际环境流行病学学会寻求确保从事研究和公共卫生实践的环境流行病学家的道德行为达到最高的透明度和问责制标准。
    Recognition of the importance to environmental epidemiology of ethical and philosophical deliberation led, in 1996, to the establishment of Ethics Guidelines for the profession. In 1999, these guidelines were adopted by the International Society for Environmental Epidemiology. The guidelines were revised in 2012 and again in 2023 to ensure continued relevance to the major issues facing the field. Comprising normative standards of professional conduct, the guidelines are structured into four subsections: (1) obligations to individuals and communities who participate in research; (2) obligations to society; (3) obligations regarding funders/sponsors and employers; and (4) obligations to colleagues. Through the 2023 revision of the Ethics Guidelines, the International Society for Environmental Epidemiology seeks to ensure the highest possible standards of transparency and accountability for the ethical conduct of environmental epidemiologists engaged in research and public health practice.
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  • 文章类型: Journal Article
    化脓性汗腺炎(HS)是一种慢性皮肤病。它的复杂性和对患者的影响凸显了对多学科护理的需求,心理,和社会方面。卓越中心可以理想地提供必要的基础设施,资源,以及有效治疗HS的专业知识。然而,仍然没有统一的HS卓越中心模型,建立他们的基础是一个复杂的研究挑战。故意,作为创新技术的设计和共同创造是这类研究的有用方法。
    在这项研究中,在HS专家达成共识的情况下,我们共同创建了一项在巴西建立HS门诊卓越中心的标准和要求.我们遵循6个阶段的混合方法的线性过程。
    该过程导致建立门诊中心的10个类别,包括他们各自的要求,理由,和分类。类别包括入职和欢迎;基础设施和程序;输液治疗;流动和转诊;人员配备;疾病管理;诊断期间的指标;治疗期间的指标;意识和宣传;研究和教育。
    理想化的门诊中心可以在HS的完整多学科治疗中发挥作用,并通过提供研究重点来推进医疗保健服务的科学,培训,并将发现转化为实践。
    UNASSIGNED: Hidradenitis suppurativa (HS) is a chronic skin condition. Its complexity and impact on patients highlight the need for multidisciplinary care that can address the physical, psychological, and social aspects. Centers of excellence can ideally provide the necessary infrastructure, resources, and expertise to effectively treat HS. However, there are still no consolidated models of centers of excellence in HS, and establishing their foundations is an intricate research challenge. Purposely, design and co-creation as innovation techniques are helpful approaches to this type of research.
    UNASSIGNED: In this study, we conducted a co-creation with consensus among HS specialists to propose the criteria and requirements to establish outpatient centers of excellence of HS in Brazil. We followed a linear process with mixed methods in 6 stages.
    UNASSIGNED: The process resulted in 10 categories for establishing outpatient centers, including their respective requirements, rationale, and classification. The categories include onboarding and welcoming; infrastructure and procedures; infusion therapy; flows and referrals; staffing; disease management; metrics during diagnosis; metrics during treatment; awareness and advocacy; research and education.
    UNASSIGNED: The idealized outpatient centers can play a role in the complete multidisciplinary treatment for HS and advancing the science of healthcare services by providing a focus for research, training, and translation of findings into practice.
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  • 文章类型: Review
    Conducting participatory research (PR) aimed at improving health implies considering inequitable power relations, including those related to sex/gender (S/G). This necessitates specific skills and methods and may be challenging especially since guidelines are scarce. Our objective was to perform a scoping review to provide a typology of existing guidelines for researchers on how to take account of S/G in the context of PR in public health, with a focus on occupational and environmental health.
    All steps of the research were conducted with the collaboration of an advisory committee, following PR principles. Nineteen documents were retained from 513 references identified in nine scientific databases and grey literature between 2000 and 2020. Data on recommendations were extracted and coded qualitatively. Cluster analysis based on similarities in recommendations proposed in the documents identified four types: (1) empowerment-centered; (2) concrete action-centered; (3) macrosystem-centered; and (4) stakeholder-centered.
    Many sources gave pointers on how to include S/G during data collection and analysis or during the dissemination of findings, but there was a dearth of suggestions for building partnerships with stakeholders and producing sustainable S/G sociopolitical transformations. Occupational health PR showed less similarities with other public health subfields including environmental health PR. Power relationships with workplace stakeholders generated specific obstacles related to S/G integration that require further attention. Intersectionality and reflexive practices emerged as overarching themes.
    This review provides helpful guidelines to researchers at different stages of planning PR, ranging from familiarizing themselves with S/G approaches to anticipating difficulties in their ongoing S/G-transformative PR.
    RéSUMé: OBJECTIF: Les recherches participatives (RP) visant l’amélioration de la santé doivent tenir compte de rapports de pouvoir inéquitables, incluant ceux liés au sexe/genre (S/G). Cela peut s’avérer difficile vu les compétences requises et la rareté de recommandations. Notre objectif consistait à réaliser une revue de portée menant à une typologie des recommandations existantes pour les chercheurs.euses sur l’intégration du S/G en contexte de RP en santé publique, particulièrement en santé environnementale ou au travail. MéTHODOLOGIE: Un comité d’encadrement a participé à chaque étape de l’étude. Nous avons retenu 19 documents parmi 513 références identifiées dans neuf bases de données scientifiques et la littérature grise (2000–2020). L’extraction et le codage qualitatif des recommandations a mené à une analyse de clusters basée sur les similitudes identifiant quatre types centrés sur : 1) pouvoir d’agir; 2) actions concrètes; 3) macro-système; et 4) parties prenantes. SYNTHèSE: Plusieurs sources indiquaient comment intégrer le S/G pendant la collecte/analyse des données ou la diffusion des résultats. Peu de recommandations touchaient l’aspect S/G au niveau des partenariats avec des parties prenantes ou des transformations sociopolitiques durables. Les recommandations en santé au travail étaient moins similaires aux autres sous-domaines de santé publique. Les relations de pouvoir en milieu de travail engendrent des obstacles spécifiques liés à l’intégration du S/G et nécessitent une attention particulière. L’intersectionnalité et les pratiques réflexives sont apparues comme des thèmes primordiaux. CONCLUSION: Les recommandations repérées aideront des chercheurs.euses à différents stades de leur parcours d’intégration du S/G dans une RP en cours, allant de la familiarisation à l’anticipation de difficultés.
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  • 文章类型: Journal Article
    基于证据的干预措施通常在特定的测试,结构化设置,但可能需要修改,以满足现实世界中弱势青年的复杂需求。尽管如此,过去的研究没有提供实用的指南来帮助社区合作伙伴就如何使循证干预适应其环境做出决定.
    我们确定了在复杂社区环境中对青年实施心理健康促进和暴力预防干预措施的障碍,以提供该计划如何适应不同挑战的实践示例。这些适应决定是在以更广泛的证据为基础的指南中制定的。
    指南强调了创伤知情实践的重要性,强调保密性,定制内容以满足个体青年的临床风险和反应性因素,调整剂量和含量,以满足集团的需要,使编程与案例规划保持一致,灵活的格式,并关注上下文因素。
    需要调整循证干预措施,以满足个体参与者和群体的需求。此处提供的指南和案例示例说明了在基于社区的研究伙伴关系的背景下,如何在一个机构中以有意和证据驱动的方式进行这种适应。
    Evidence-based interventions are often tested in specific, structured settings, but may need modification to meet the complex needs of vulnerable youth in real-world settings. Nonetheless, past research has not provided practical guidelines to help community partners make decisions about how to adapt evidence-based interventions to their settings.
    We identify barriers in implementing a mental health promotion and violence prevention intervention with youth in a complex community setting to provide practice examples of how the program was adapted to address different challenges. These adaptation decisions are framed within guidelines that are grounded in a wider evidence base.
    The guidelines underscore the importance of trauma-informed practice, emphasizing confidentiality, tailoring content to meet individual youth\'s clinical risk and responsivity factors, adjusting dosage and content to meet the group\'s needs, aligning programming with case planning, being flexible with format, and attending to contextual factors.
    Evidence-based interventions need to be adapted to meet the needs of both individual participants and groups. The guidelines and case examples presented here demonstrate how this adaptation was undertaken in an intentional and evidence-driven way in one agency in the context of a community-based research partnership.
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  • 文章类型: Journal Article
    背景:运动和教育的循证干预措施已被强烈建议作为髋关节和膝关节骨关节炎(OA)的重要临床指南的一部分已有十多年了。尽管存在大量强有力的证据,在实践中的实施是次优的。本文介绍了协同设计中使用的关键方法,剪裁,以及IMPACT项目实施策略的评估,为了跨多个层面(微观,meso,宏)在爱尔兰的公共和私人医疗保健环境中。
    方法:使用III型混合实施-有效性设计,一个参与性的,将使用动态和迭代过程来定制和评估使用以下阶段的多层次实施策略:1)使用最佳证据与关键利益相关者共同设计实施策略,理论驱动的实施框架(实施研究综合框架),当地背景和专家共识;2)通过培训物理治疗师,利用实施策略来提供基于证据的健康生活与骨关节炎丹麦(GLA:D®)教育和锻炼计划,指导和评估实施策略,并进行混合方法过程评估;3)从第二阶段开始,根据实施过程评估指标调整实施策略。调整后的战略将用于后续GLA:D®爱尔兰培训计划的扩大规模和可持续性,这些培训计划将在全国范围内推广。对患者和成本结果的有效性评估将在方案交付后12个月内继续进行,使用在线患者注册表和pre-post设计。
    结论:该实施科学项目旨在利用参与式健康研究来解决公共和私人医疗机构在OA管理方面的差距。这项研究有可能改变实践,并促进慢性肌肉骨骼疾病的运动和体力活动转诊政策,有效利用社区参与并制定“一起改变”,在研究人员的参与下,决策者,临床医生和患者。
    BACKGROUND: The evidence-based interventions of exercise and education have been strongly recommended as part of prominent clinical guidelines for hip and knee osteoarthritis (OA) for more than ten years. Despite the wealth of strong evidence that exists, implementation in practice is sub-optimal. This paper describes the key methodologies used in the co-design, tailoring, and evaluation of the IMPACT project implementation strategies, to confront this problem across multiple levels (micro, meso, macro) in public and private healthcare settings in Ireland.
    METHODS: Using a type III hybrid implementation-effectiveness design, a participatory, dynamic and iterative process will be used to tailor and evaluate multi-level implementation strategies using the following stages: 1) Co-design the implementation strategies with key stakeholders using best evidence, a theory-driven implementation framework (Consolidated Framework for Implementation Research), local context and expert consensus; 2) Pilot and evaluate the implementation strategies by training physiotherapists to deliver the evidence-based Good Life with osteoArthritis Denmark (GLA:D®) education and exercise programme using the implementation strategies, and conduct a mixed-methods process evaluation; 3) Adapt the implementation strategies based on implementation process evaluation indicators from stage two. The adapted strategies will be used for scale-up and sustainability in subsequent GLA:D® Ireland training programmes that will be rolled out nationally. Evaluation of effectiveness on patient and cost outcomes will continue up to 12 months post-programme delivery, using an online patient registry and pre-post design.
    CONCLUSIONS: This implementation science project aims to use participatory health research to address a gap in management of OA across public and private healthcare settings. This research has the potential to change practice and promote a policy of exercise and physical activity referral for chronic musculoskeletal disease that utilises community engagement effectively and enacts change \'together\', with involvement of researchers, decision-makers, clinicians and patients.
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  • 文章类型: Journal Article
    社区咨询委员会(CAB)是一种常见的社区参与策略。用于开发学术团体合作伙伴关系的CAB的工具有限。本文介绍了与霍皮部落制定CAB指南的过程和合作伙伴关系,该指南是由土著环境卫生研究中心(CIEHR)和非附属项目资助的研究工具。
    CAB指南包括三个部分:编队,操作,可持续性和评估。每个部分包括最佳实践和交互式工作表。CAB指南与霍皮部落一起试行,以确定可行性和相关性。
    部落部落的CAB很受欢迎。有些工作表很难完成,因为它们没有代表他们的观点,也没有在CAB互动中引入潜在的张力。进行了相应的修订。
    CAB指南的未来评估和广泛传播将促进CAB在健康研究中的使用和有效性。
    Community advisory boards (CABs) are a common community engagement strategy. Tools for developing CABs that are accessible to academic-community partnerships are limited. This article describes the process and partnership with the Hopi Tribe to develop CAB guidelines as a tool for research funded by the Center for Indigenous Environmental Health Research (CIEHR) and nonaffiliated projects.
    The CAB guidelines consist of three sections: formation, operation, and sustainability and evaluation. Each section includes best practices and interactive worksheets. The CAB guidelines were piloted with the Hopi Tribe to determine feasibility and relevance.
    The CAB guidelines were well-received by the tribal CAB. Some of the worksheets were difficult to complete because they did not represent their perspectives or introduced potential tension in CAB interactions. Revisions were made accordingly.
    Future evaluation and broad dissemination of the CAB guidelines will promote the use and effectiveness of CABs in health research.
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  • 文章类型: Journal Article
    在健康差异研究中,研究往往达不到他们的招聘目标。进行招募的试点可行性研究,其中系统地收集有关招募过程的数据,可以帮助调查人员完善更大研究的方法。然而,进行试点可行性研究的指导方针很少,招聘方法很少是重点。可行性指标与传统的征聘结果报告不同,侧重于实现征聘目标的程度。
    我们提出了一个评估招聘可行性的组织框架,包括八个步骤,简要说明:1)规定招聘目标;2)规定招聘流程;3)为每个人建立跟踪系统;4)建立跟踪数据库,监测过程和结果;5)实施招聘并跟踪每个人的进展;6)总结招聘结果;7)计算和解释可行性措施--是否达到了目标;8)如果没有达到目标,利用跟踪数据修改较大研究的方法。我们描述了每个步骤中的方法,添加了步骤2-5(具体过程)的详细信息。该框架来自有关招募可行性的小型文献,重点是健康差异人群。该准则将众所周知的招聘方法与计算可行性指标的其他信息结合在一起。
    这些指导方针为系统地思考招聘可行性提供了第一步,推进测量领域的可行性。可行性指标也可用于跟踪创新招聘策略的有效性,作为构建招聘科学的一部分,尤其是在差异人群中。
    In health disparities research, studies often fall short of their recruitment goals. Conducting a pilot feasibility study of recruitment in which data are collected systematically on recruitment processes can help investigators refine methods for the larger study. However, there are few guidelines for conducting pilot feasibility studies, and recruitment methods are seldom the focus. Feasibility indicators differ from traditional reports of recruitment results by focusing on the extent to which recruitment goals are met.
    We present an organizing framework for assessing the feasibility of recruitment that includes eight steps, briefly: 1) specify recruitment goals; 2) specify recruitment processes; 3) establish a tracking system for each individual; 4) establish a tracking database for monitoring processes and results; 5) implement recruitment and track each individual\'s progress; 6) summarize recruitment results; 7) calculate and interpret feasibility measures - were goals met; and 8) if goals were not met, utilize tracking data to modify methods for the larger study. We describe methods within each step, with added details for steps 2-5 (the specific processes). The framework draws from a small literature on recruitment feasibility with a focus on health disparities populations. The guidelines blend well-known methods of recruitment with additional information on calculating feasibility indicators.
    These guidelines provide a first step in thinking systematically about recruitment feasibility, to advance the field of measuring feasibility. Feasibility indicators also can be used to track the effectiveness of innovative recruitment strategies as part of building the science of recruitment, especially in disparities populations.
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  • 文章类型: Journal Article
    This study examined the effects of the first family health history (FHH)-based colorectal cancer (CRC) prevention education on 1) FHH of CRC communication with family members and primary care physicians (PCPs), 2) fecal occult blood test (FOBT) uptake, and 3) CRC preventive lifestyle modifications among 50- to 75-year-old Chinese Americans non-adherent to CRC screening guidelines.
    Using a community-based participatory research approach, we developed and implemented 62 culturally and linguistically appropriate, theory-driven, FHH-based CRC prevention educational workshops across Texas for 344 Chinese Americans (mostly with low education/income) aged 50-75 years who were non-adherent to CRC screening guidelines.
    Linear mixed modeling analyses showed that participants\' FHH of CRC communication with PCPs and family members significantly increased two-week post-workshop compared to pre-workshop data (ps<0.001). Moreover, at two-weeks post-workshop, 91.9 % of participants underwent FOBT. Nevertheless, no significant changes were found in participants\' lifestyles.
    Our educational workshops successfully increased Chinese Americans\' FHH of CRC communication and FOBT uptake. Personalized education with longer follow-ups may be needed in future studies to promote lifestyle changes among Chinese Americans.
    Health and public health professionals may adopt our workshop educational materials to provide patient and public CRC prevention education for Chinese Americans.
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  • 文章类型: Journal Article
    The objective of this study was to assess the impact of a 2010 community-based participatory research (CBPR) reporting guideline on the quality of reporting a CBPR on smoking cessation. We searched the MEDLINE, Embase, the Cochrane Central Register for Controlled Trials (CENTRAL), PsycINFO, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases and included articles published up to December 2019 (PROSPERO: CRD42019111668). We assessed reporting quality using the 13-item checklist. Of the 80 articles identified, 42 (53%) were published after 2010. The overall reporting quality before and after 2010 was poor and did not differ significantly (mean difference: 0.66, 95% confidence interval [CI]: -0.21 to 1.53). The total reporting scores of the studies did not differ significantly according to the effect size of the intervention (beta coefficient: -2.86, 95% CI: -5.77 to 0.04). This study demonstrates the need to improve the quality of reporting CBPRs. We recommend that journal editors endorse the CBPR reporting guideline to encourage its use by more researchers.
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