Are We the Problem? A Call to Action for Addressing Institutional Challenges to Engaging Community Partners in Research.

Community-engaged research (CEnR) is a potent tool for addressing health inequities and fostering equitable relationships among communities, researchers, and institutions. CEnR involves collaboration throughout the research process, demonstrating improvements in study recruitment and retention, intervention efficacy, program sustainability, capacity building among partners, and enhanced cultural relevance. Despite the increasing demand for CEnR, institutional policies, particularly human participation protection training (HPP), lag behind, creating institutional barriers to community partnerships. Here, we highlight challenges encountered in our ongoing study, Fostering Opportunities in Research through Messaging and Education (FOR ME), focused on promoting shared decision-making around clinical trial participation among Black women diagnosed with breast cancer. Grounded in CEnR methods, FOR ME has a partnership with a community-based organization (CBO) that addresses the needs of Black women with breast cancer. Our CBO partner attempted to obtain HPP training, which was administratively burdensome and time-consuming. As CEnR becomes more prevalent, academic and research institutions, along with researchers, are faced with a call to action to become more responsive to community partner needs. Accordingly, we present a guide to HPP training for community partners, addressing institutional barriers to community partner participation in research. This guide outlines multiple HPP training pathways for community partners, aiming to minimize institutional barriers and enhance their engagement in research with academic partners.

Co-construire un projet de recherche en oncologie avec les personnes concernées : retour d'expérience et leçons apprises.

Citizen participation in cancer research is growing intensively. In this context, the IMPAQT research project aims to promote the participation of (former) cancer patients in all stages of research. It was in response to the needs of the patient-researchers of the IMPAQT research group that the Perce-Neige project was developed. Based on the principles of community participation and collaboration, this project has a dual objective: methodological, aimed at understanding collaboration and characterizing the community approach, and empirical, which concerns caregivers’ perceptions of cognitive disorders related to cancer treatments. All the methodological tools aimed at meeting these objectives were co-constructed by the entire IMPAQT group. The research participation of the people concerned enables a novel way of linking expert and experiential knowledge and necessitates specific modes of organization. Also, the co-construction of research and methodological tools requires a regular updating of knowledge, as well as a capacity for reflection and an openness to reconsidering the approach. It also appears that the mobilization of the people concerned, who possess experiential knowledge, raises emotional issues. In conclusion, the participation of the people concerned in research constitutes an essential lever in the identification, elaboration, and social and psychosocial contextualization of health issues in cancerology.

[Participation in primary care research - From the idea to the constitution of a citizens advisory board]. / Partizipation in der allgemeinmedizinischen Forschung ­ Von der Idee bis zur Gründung eines Bürger*innenbeirats.

INTRODUCTION: Public participation in research processes is becoming increasingly important and is justified with positive effects for research. The first successful initiatives can also be found in general practice and health services research. The transparent presentation of these projects is essential to the discussion about participation. The aim of this article is to present and discuss the conception and implementation of the initiative at the Institute of General Practice and Health Services Research at the Technical University of Munich and the kick-off event for the participation of patients, citizens and patient representatives. METHODS: This article reports the planning, recruitment, implementation, and evaluation of the kick-off event. Frameworks for future events are described. RESULTS: In total, twelve persons were recruited through various recruitment channels to participate in the kick-off event. The participants showed a diverse structure of motives with regard to participation in research. All participants shared the essential goal of improving research and care by adding their perspectives to research processes. However, the specific opportunities for participation and the role of patients and citizens in research processes were unclear. During the event, future workshops were planned to address these challenges. The focus was on strengthening relationships and communicating the basics of primary care research in order to enable sustainable participation. DISCUSSION: The participants' different motivations resulted in the need to explore the concrete possibilities of participation. One of the specific requirements was to focus on role identification and the structure of the initiative. The question of self-description and -identification as a patient and/or citizen seemed crucial. Furthermore, a concise introduction to the topic of participation in research processes, as well as patient and citizen qualifications, is considered necessary. CONCLUSION: Establishing an advisory board for patients and citizens in primary care research is associated with specific requirements. In addition to fundamental necessities such as the joint clarification of the possibilities of participation, defining the role and establishing the identity of the initiative should be promoted.

Community-based actions in consulates: a new paradigm for opportunities for systematic integration in Chagas disease detection.

Research has shown that multidimensional approaches to Chagas disease (CD), integrating its biomedical and psycho-socio-cultural components, are successful in enhancing early access to diagnosis, treatment and sustainable follow-up.For the first time, a consulate was selected for a community-based CD detection campaign. Two different strategies were designed, implemented and compared between 2021 and 2022 at the Consulate General of Bolivia and a reference health facility in Barcelona open to all Bolivians in Catalonia.Strategy 1 consisted in CD awareness-raising activities before referring those interested to the reference facility for infectious disease screening. Strategy 2 offered additional in-situ serological CD screening. Most of the 307 participants were Bolivian women residents in Barcelona. In strategy 1, 73 people (35.8% of those who were offered the test) were screened and 19.2% of them were diagnosed with CD. Additionally, 53,4% completed their vaccination schedules and 28.8% were treated for other parasitic infections (strongyloidiasis, giardiasis, eosinophilia, syphilis). In strategy 2, 103 people were screened in-situ (100% of those who were offered the test) and 13.5% received a CD diagnosis. 21,4% completed their vaccination schedule at the reference health facility and 2,9% were referred for iron deficiency anemia, strongyloidiasis or chronic hepatitis C.The fact that the screening took place in an official workplace of representatives of their own country, together with the presence of community-based participants fueled trust and increased CD understanding. Each of the strategies assessed had different benefits. Opportunities for systematic integration for CD based on community action in consulates may enhance early access to diagnosis, care and disease prevention.

O Real da Violência: Relato de Experiência com um Coletivo de Mulheres / The Real of Violence: Experience Report with a Women's Collective / Lo Real de la Violencia: Informe de Experiencia con un Colectivo de Mujeres

Este trabalho tem como objetivo, a partir da experiência e do testemunho de um Coletivo de Mulheres, propor uma leitura do que nomeamos como o Real da violência por meio do ensino de Lacan e comentadores. Diferente do Real enquanto fundamento ausente ou falta-a-ser, o Real da violência se insere historicamente no dia a dia e na vida de determinados corpos brasileiros, precisamente os corpos negros, femininos e periféricos. Em vista do cenário de impasses socio-políticos do Brasil, mas também de potentes vozes e ações que têm surgido das comunidades atravessadas por estruturas de violência, a experiência do Coletivo ilustra o presente trabalho, a fim de demonstrar caminhos possíveis para um saber-fazer com esse Real ao qual seus filhos e a comunidade estão mais expostos. À luz de conceitos da Teoria Feminista, como, por exemplo, a noção de interseccionalidade e a categoria corpo-território, endossamos essa discussão que demanda à Psicanálise conversar com outros campos do saber. Empreitada que exige engajamento ético e político dos psicanalistas, em especial dos que exercem a práxis analítica no Brasil.

This work aims, through the experience and testimony of a Women's Collective, to propose a reading of what we call the Real of violence through the teaching of Lacan and commentators. Different from the Real as a foundation that is absent or lack-of-being, the Real of violence is historically inserted in the daily life and in the life of certain Brazilian bodies, precisely black, female and peripheral bodies. In view of the scenario of socio-political impasses in Brazil, but also of powerful voices and actions that have emerged from communities crossed by structures of violence, the Collective's experience illustrates the present work, in order to demonstrate possible paths for a know-how to deal with this Real to which their children and the community are more exposed. In the light of concepts from Feminist Theory, such as, for example, the notion of intersectionality and the body-territory category, we endorse this discussion that demands Psychoanalysis to converse with other fields of knowledge. An undertaking that demands ethical and political engagement from psychoanalysts, especially those who practice analytical praxis in Brazil.

Este trabajo pretende, a partir de la experiencia y testimonio de un Colectivo de Mujeres, proponer una lectura de lo que llamamos lo Real de la violencia a través del magisterio de Lacan y comentaristas. A diferencia de lo Real como fundamento ausente o falta-de-ser, lo Real de la violencia se inserta históricamente en el cotidiano y en la vida de ciertos cuerpos brasileños, precisamente negros, femeninos y los barrios marginales. Ante el escenario de impasses sociopolíticos en Brasil, pero también de voces y acciones poderosas que han emergido de comunidades atravesadas por estructuras de violencia, la experiencia del Colectivo ilustra el presente trabajo, con el fin de evidenciar posibles caminos para un saber hacer con este Real al que están más expuestos sus niños y la comunidad. A la luz de conceptos de la Teoría Feminista, como, por ejemplo, la noción de interseccionalidad y la categoría cuerpo-territorio, avalamos esta discusión que exige al Psicoanálisis hablar con otros campos del saber. Un emprendimiento que exige compromiso ético y político de los psicoanalistas, especialmente de aquellos que ejercen la práctica analítica en Brasil.

Facilitating increased participation in clinical trials: what do consumers expect of clinical trial matching websites?

Clinical trials offer access to novel therapies and potential major benefits for patients, but identifying and accessing suitable trials remains a significant challenge for consumers. A burgeoning range of online services aims to meet this need; however, there is a paucity of data on whether these services are addressing the requirements and concerns of consumers. Here, we report our findings from a survey of cancer consumers, with results we believe are relevant to the broader research community.

Turning the Page on Breast Cancer in Ohio: Lessons learned from implementing a multilevel intervention to reduce breast cancer mortality among Black women.

BACKGROUND: Turning the Page on Breast Cancer (TPBC) uses a multilevel approach to reduce breast cancer (BC) mortality among Black women. TPBC intervenes by (1) improving health care facilities' ability to conduct effective BC screening, follow-up, and treatment; (2) involving community-based organizations; and (3) providing education and personal risk information through a culturally relevant website. Ohio has among the worst BC mortality rates in the United States for Black women. TPBC is in its third year of providing targeted interventions in 12 Ohio counties with particularly high BC rates among Black women. METHODS: TPBC enrolls health care facilities, collects organizational and patient data, and conducts key informant interviews to inform the provision of appropriate evidence-based interventions. TPBC engages Black communities through community-based organizations and social media advertising. The TPBC website offers BC information, connects Black women to community BC resources, and provides access to a risk-assessment tool. RESULTS: TPBC has provided tailored information packets, evidence-based interventions, and systematic support for improving the tracking and follow-up of breast health care among patients in 10 clinical partnerships. The project has provided education at community events monthly since mid-2021. The TPBC website (http://endbreastcancerohio.org) is promoted through social media (primarily Facebook) and community events to reach Black women aged 25-70 years. To date, 4108 unique users have visited the website, of whom 15.9% completed the risk assessment. CONCLUSIONS: Novel strategies are needed to address persistent disparities in BC outcomes among Black women. TPBC demonstrates the potential effectiveness of multiple methods of community-based, clinic-based, and web-based engagement. PLAIN LANGUAGE SUMMARY: Turning the Page on Breast Cancer (TPBC) aims to reduce breast cancer mortality among Black women in Ohio by conducting multilevel, community-engaged interventions in 12 counties. Women are provided risk information and education at virtual and in-person community events and through a community-friendly website that was launched in November 2020. Almost 4000 women have visited the website, which offers community-targeted information, urges screening for individuals at elevated risk, and offers access to patient navigation services; 655 users have used a breast cancer risk-assessment tool on the site. Community-based organizations conduct educational efforts. TPBC partners with health care facilities, which are taught to improve their ability to conduct effective breast cancer screening, follow-up, and treatment. So far, TPBC has provided educational information, evidence-based intervention lists, tailored information packets, and ongoing quarterly support to partners in 10 counties. Evaluation will focus on aggregated data for screening and genetic testing referral at the clinic level.

Impact of information and deliberation on the consistency of preferences for prioritization in health care - evidence from discrete choice experiments undertaken alongside citizens' juries.

BACKGROUND: Public preferences are an important consideration for priority-setting. Critics suggest preferences of the public who are potentially naïve to the issue under consideration may lead to sub-optimal decisions. We assessed the impact of information and deliberation via a Citizens' Jury (CJ) or preference elicitation methods (Discrete Choice Experiment, DCE) on preferences for prioritizing access to bariatric surgery. METHODS: Preferences for seven prioritization criteria (e.g. obesity level, obesity-related comorbidities) were elicited from three groups who completed a DCE: (i) participants from two CJs (n = 28); (ii) controls who did not participate in the jury (n = 21); (iii) population sample (n = 1,994). Participants in the jury and control groups completed the DCE pre- and post-jury. DCE data were analyzed using multinomial logit models to derive "priority weights" for criteria for access to surgery. The rank order of criteria was compared across groups, time points and CJ recommendations. RESULTS: The extent to which the criteria were considered important were broadly consistent across groups and were similar to jury recommendations but with variation in the rank order. Preferences of jurors but not controls were more differentiated (that is, criteria were assigned a greater range of priority weights) after than before the jury. Juror preferences pre-jury were similar to that of the public but appeared to change during the course of the jury with greater priority given to a person with comorbidity. Conversely, controls appeared to give a lower priority to those with comorbidity and higher priority to treating very severe obesity after than before the jury. CONCLUSION: Being informed and undertaking deliberation had little impact on the criteria that were considered to be relevant for prioritizing access to bariatric surgery but may have a small impact on the relative importance of criteria. CJs may clarify underlying rationale but may not provide substantially different prioritization recommendations compared to a DCE.

Public preferences are an important consideration for priority-setting. However, some people worry that if the public doesn't know much about the issues, their opinions might not lead to the best decisions. To make these decisions, we used two different methods to get people's opinions: Deliberative methods and preference elicitation methods. Deliberative methods gather a small group of people and have them discuss an issue in detail, whereas preference elicitation methods seek opinions through surveying a large group of people.In this paper, we assessed the impact of information and deliberation via a deliberative method (Citizens' Jury, CJ) or a preference elicitation method (Discrete Choice Experiment, DCE) on preferences for prioritising access to bariatric surgery. We used data from two CJs and a DCE focussed on prioritising access to the surgery, to find out if the opinions of those in the CJs changed or stayed the same after they heard information from experts and discussed the topic.The results showed that the important criteria were rather similar across the groups, but the order of importance was a bit different. The people in CJs had more varied opinions after discussing it, while those who didn't discuss it had less varied opinions. The participants in CJs also prioritized those with other health problems more than they did at the beginning.This study helps us understand how different methods can be used to get the public's opinions on healthcare decisions.

Manual de identidad gráfica del agente comunitario de salud / Graphic identity manual for community health agents

La presente publicación describe las pautas para la gestión de la comunicación, la imagen y el uso correcto del logo del agente comunitario de salud, a través de lineamientos para homogeneizar y unificar la imagen pública e institucional del Minsa en los diversos elementos gráficos, en las diferentes plataformas de comunicación (impresas o digitales) y en especial en la comunidad. asimismo, los estándares para mostrar a la población, imágenes y mensajes representadas en diversas actividades que buscan generar un cambio de comportamiento en los hábitos saludables de la ciudadanía. Además de posicionar al Minsa como ente rector en el sector salud y la labor con los Agentes Comunitarios de Salud como parte fundamental de la comunidad

Acceptability of interventional materials: public participation in public health interventional research / Acceptabilité d'une intervention : exemple de participation des publics en recherche interventionnelle en santé publique

Introduction: The uptake rate of colorectal cancer screening remains insufficient in France and decreases as the level of deprivation increases. Participants' health literacy appears to be an important determinant of screening uptake. Aim of the study: The aim of this study, nested in our multicenter-randomized controlled trial, was to present the development and acceptability of interventional material (training and a pictorial brochure) for general practitioners and healthcare users in disadvantaged geographical areas using a participatory involvement approach. Methods: The development of the brochure and the training was carried out in three stages, two for the development, usability, and acceptability testing and a third for its evaluation with the target audience. We used a qualitative approach based on focus groups and cognitive interviews. The qualitative analysis was based on Morville's "Honeycomb" conceptual model and the COREQ checklist. Results: The development and test of the acceptability of the material enabled us to adjust the content of the training by proposing examples that were more rooted in professional reality, and to produce a brochure that was easy to read, understand, acceptable and adapted to the intervention's targeted audience. Conclusions: This experience illustrates in a concrete way the feasibility of public participation and its value in the context of interventional research, and more generally in the creation of interventional material.

Introduction: Le taux de participation au dépistage du cancer colorectal reste insuffisant en France et diminue à mesure que le niveau de précarité augmente. La littératie en santé est un déterminant important du recours au dépistage. But de l'étude: Cette étude, nichée dans notre essai randomisé multicentrique, a pour but de présenter la procédure d'élaboration (procédé itératif de test d'utilisabilité et d'acceptabilité) et de vérification de l'acceptabilité de l'intervention (formation et brochure imagée) ciblant les médecins généralistes et usagers du soin dans des zones géographiques défavorisées, selon une approche participative. Méthodes: Le développement de la brochure et de la formation a été réalisé en trois étapes : deux pour l'élaboration et tests itératifs d'utilisabilité et acceptabilité et une troisième pour vérifier l'acceptabilité auprès des publics cibles. Nous avons utilisé une approche qualitative par focus group et entretiens individuels cognitifs dont l'analyse repose sur le « nid d'abeille ¼ de Morville et la grille COREQ. Résultats: Le développement itératif et la vérification de l'acceptabilité du matériel nous ont permis, d'une part, de réaliser des ajustements quant au contenu de la formation, en proposant des exemples plus ancrés dans la réalité professionnelle et, d'autre part, de produire une brochure imagée facile à lire et à comprendre, acceptable et adaptée au public ciblé par l'intervention. Conclusions: Cette expérience illustre, de manière concrète, la faisabilité de cette modalité de participation des publics concernés et son intérêt dans le cadre de la recherche interventionnelle et, plus généralement, dans le matériel interventionnel.

Rural research capacity: a co-created model for research success.

PURPOSE: The United States' National Institutes of Health (NIH) have long challenged academia to improve clinical trial enrollment, especially in underrepresented populations; inclusive of geography, age, disability status, racial and ethnic minorities. It has been shown that rural and urban residents enrolled in clinical trials have similar outcomes, yet, rural healthcare systems struggle to provide opportunities to rural residents to participate in clinical trials when infrastructure is limited or unsupportive of research programs and/or research staffing levels are insufficient. To fully address the barriers to clinical trial access in rural areas, it is not adequate to simply open more trials. Community receptivity of research as well as organizational and community capacity must be considered. This project was determined by the Oregon Health and Science University's Institutional Review Board to be generalizable research across the chosen counties and was approved to operate under a waiver of written consent. Participants received a cash incentive in appreciation for their time and verbally agreed to participate after reviewing a project information sheet. METHODS: The research team co-created a community-responsive approach to the receipt, review, and acceptance of clinical trials in a rural community setting. An adapted 5 step Implementation Mapping approach was used to develop a systematic strategy intended to increase the success, and therefore, the number of clinical trials offered in a rural community. RESULTS: The research team and participating rural community members pilot-tested the implementation of a co-designed research review strategy, inclusive of a Regional Cultural Landscape and three co-created project submission and feasibility review forms, with a cancer early detection clinical trial. The proposed clinical trial required engagement from primary care and oncology. Utilizing the research review strategy demonstrated strong researcher-community stakeholder communication and negotiation, which resulted in early identification and resolution of potential barriers, hiring a local clinical research coordinator, and timely trial opening. CONCLUSION: To the knowledge of the research team, the work described is the first to use a community-engaged approach for creating a clinical trial implementation strategy directly supportive of rural-sitting community stakeholders in receiving, reviewing, and approving cancer-related clinical trials in their community. Participating community members and leaders had the chance to negotiate research protocol changes or considerations directly with researchers interested in conducting a cancer clinical trial in their rural setting.

The role of knowledge, primary care and community engagement to improve breast-screening access for Pakistani women in the United Kingdom: A secondary analysis of a qualitative study.

OBJECTIVE: Breast cancer incidence is rising among Pakistani women in the United Kingdom. However, uptake of breast screening remains low. This study aimed to improve access to breast screening for British-Pakistani women by exploring their knowledge of breast cancer and the role of primary care and community networks to support screening access amongst British-Pakistani women. METHODS: We undertook a secondary qualitative analysis of 18 semi-structured interviews with British-Pakistani women from East Lancashire in the United Kingdom. Anonymized transcripts of the interviews were used for a thematic analysis. RESULTS: Three themes were identified in the interviewees' responses: (i) 'Women's knowledge of breasts and breast cancer', which described how a cultural taboo exists around Pakistani women's bodies and around breast cancer; (ii) 'Role of primary care', which detailed how General Practitioners can support informed decisions and offer a trusted and valued information source; (iii) 'Community engagement', which described the potential to disseminate breast-screening information through the whole community, including primary care providers, all family members and mosques. CONCLUSIONS: Our analysis suggested three main targets for future interventions to improve access to breast screening for British-Pakistani women: (i) co-produced strategies to increase knowledge of breasts and breast screening; (ii) greater collaboration with local General Practitioners to support women to make informed choices about screening; and (iii) community engagement involving General Practitioners and community leaders, to inform everyone - not just screening-age women - about breast cancer and screening.

Represent: A community engagement roadmap to improve participant representation in cancer early detection research: An Oregon case study.

Introduction: While authentic and sustained community involvement in the research process is critically important to making new technologies and interventions effective and socially acceptable, there is uneven participation across sociodemographic, racial, and ethnic communities in many research areas, including cancer early detection research. Currently, 18% of cancer in the United States impacts Hispanics and Latinos, this population accounts for < 10% of research participants. Understanding barriers and facilitators to cancer early detection research is imperative to the ultimate success of this research. Therefore, the objectives of this study were to: understand Hispanic and Latino community perspectives in participation in cancer early detection research; and identify sustainable and mutually beneficial approaches to community engagement and involvement. Methods: The Oregon Case Study, led by Oregon Health & Science University's Community Outreach, Research and Engagement (CORE) in partnership with colleagues at Vocal, a partnership between Manchester University NHS Foundation Trust and the University of Manchester and Cambridge University, adopted a participatory research approach to better understand participation in cancer early detection research from the perspectives of Oregon's Hispanic and Latino community members. We implemented two evidence-based community engagement models, the Community Engagement Studio and the Community Readiness Assessment Model. Using a facilitated format prescribed by each community engagement model, community members helped us to answer two research questions: (1) What methods help us increase participation of underrepresented communities in cancer early detection research?; and (2) How can we build trust between researchers and underrepresented communities within cancer early detection research? Quantitative (i.e., descriptive statistic) and qualitative (i.e., thematic analysis) analytic methods were used to measure and assess community knowledge, leadership, beliefs, and resources regarding participation in cancer early detection research. Results: A total of 36 Hispanic and Latino community members participated in the two community engagement models. We identified three emergent themes pertaining to participation in cancer early detection research that include: low-level awareness of cancer early detection research and opportunities for research participation, structural barriers to research participation, and uncertainty of the benefits of research participation. Conclusion: Our approach, using two evidence-based community engagement models, yielded valuable insights about perceptions of research participation for Hispanic and Latino community members. These findings, synthesized into three key themes, led to actionable recommendations to increase research participation.

The delivery of healthy lifestyle interventions for people with disability living in supported accommodation: a scoping review of intervention efficacy and consumer involvement.

BACKGROUND: People with disability living in supported accommodation experience health disparities that may be partly attributed to sedentary lifestyle behaviors and poor dietary quality. Healthy lifestyle interventions have been suggested as a method of health promotion for this population; however, a synthesis of their efficacy has not yet been conducted. OBJECTIVE: The primary aims were to (1) identify healthy lifestyle interventions delivered to people with disability living in supported accommodation and (2) examine their efficacy in supporting health and well-being. A secondary aim was to explore whether people with disability have been involved in the codesign of these interventions. METHODS: A scoping review was conducted following the Joanna Briggs Institute's guidance for conducting scoping reviews, and six databases were searched from January 2011 to November 2021. RESULTS: Thirty-two studies were included. Identified intervention types included training and education, exercise programs, and multicomponent interventions. A broad range of outcomes were examined; however, findings regarding efficacy were overall mixed and limited due to significant heterogeneity and the underreporting of consistently measured outcomes. The codesign of interventions in consultation with people with disability was underexplored. CONCLUSIONS: Health promotion training for staff and tailored education for people with disability hold promise in creating a care environment that supports a healthy lifestyle. The paucity of interventions developed in consultation with people with disability is concerning and highlights the importance of meaningful co-design. The development of a theoretically informed intervention that is codesigned and addresses the broader social determinants that influence health behavior is recommended.

A Community-Engaged Process for Adapting a Proven Community Health Worker Model to Integrate Precision Cancer Care Delivery for Low-income Latinx Adults With Cancer.

INTRODUCTION: Disparities in precision cancer care delivery among low-income Latinx adults are well described. In prior work, we developed a community health worker-led goals of care and cancer symptom assessment intervention. The objective of this study was to adapt this intervention for a community setting, incorporating precision cancer care delivery. METHODS: We used a two-phased systematic approach to adapt an evidence-based intervention for our community. Specifically, we used the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework to identify barriers and facilitators to precision cancer care delivery via 1-hr interviews with Latinx adults with cancer, Latinx caregivers, community leaders, primary care and oncology clinicians, and community health workers. Interviews were recorded, transcribed, and analyzed using the constant comparative method and grounded theory analysis. Phase 2 involved interviews with key community advisors using the Expert Panels Method to decide on final adaptations. RESULTS: Using this community-engaged approach, we identified specific intervention adaptations to ensure precision cancer care delivery in a community setting, which included: (a) expansion of the intervention inclusion criteria and mode of delivery; (b) integration of low-literacy precision cancer care intervention activities in Spanish in collaboration with community-based organizations; (c) ensuring goals reflective of patient and community priorities. CONCLUSIONS: This systematic and community-engaged approach to adapt an intervention for use in delivering precision cancer care strengthened an evidence-based approach to promote the needs and preferences of patients and key community stakeholders.

PEARL: A Guide for Developing Community-Engaging and Culturally-Sensitive Education Materials.

Community outreach and engagement has been a regular activity of the National Cancer Institute at its designated Cancer Centers. However, in 2016, community outreach and engagement became a required activity for all cancer centers. Yet there is a gap in the literature that provides guidelines for developing materials that resonate with communities. We developed the PEARL rubric to fulfill that gap from our work developing culturally sensitive breast cancer education materials for African American and Immigrant African women. We conducted a targeted literature review to understand the approaches that have been used for developing education materials for communities. We reviewed the literature and distilled key elements into our PEARL guide for creating culturally appropriate education materials. PEARL consists of five elements: Plain language and understandability, Explicit data, statistics, and graphs, Affirmative framing, Representative content, and Local connection. PEARL is a modern comprehensive guide that researchers can use for creating culturally sensitive materials. It is designed to guide researchers develop educational materials who have little to no experience in community engagement.

A qualitative study of stakeholder and researcher perspectives of community engagement practices for HIV vaccine clinical trials in South Africa.

Community engagement increases community trust of research and improves trial participation. However, there is limited documented appraisal of community engagement practices. Several HIV vaccine efficacy trials have been conducted in South Africa, the country most affected by HIV, predominantly in collaboration with the HIV Vaccine Trials Network (HVTN). We explored stakeholder and researcher perspectives of the HVTN community engagement practices used in the Gauteng province of South Africa. In 2017, we conducted a qualitative study. Using semi-structured interview guides, we facilitated two group discussions with Community Advisory Board (CAB) members (n = 13), and 14 in-depth interviews with HVTN-affiliated employees (n = 8 in South Africa and n = 6 in the USA). Group discussions and in-depth interviews were audio-recorded, transcribed verbatim, translated into English, and coded using NVIVO 12 Plus software for thematic data analysis. Overall, median age of study participants was 22 (interquartile range 32-54) years, and 74% (n = 20) were female. Three main themes about community engagement emerged: (i) community engagement as an ongoing iterative relationship between researchers and community; (ii) methods of community engagement, encompassing community education by linking with external stakeholders and through awareness campaigns by pamphlet distribution and mass events, working with communities to develop recruitment messages, and working with CAB as a link to communities; and (iii) strategies to improve community engagement, for example, using simple language, linking with religious leaders and traditional healers, and communicating via conventional (newspapers, television, and radio) and social (videos and listicles) media. Our data indicate ways for researchers to improve relationships with community by understanding local needs, strengthening collaborations, and tailoring communication strategies. In this regard, CABs signify critical linkages between researchers and communities. CABs can relay relevant health research needs, advise on the creation of suitable materials, and link researchers more effectively with community leaders and media.

Psicólogas(os) no sistema educacional de Boa Vista/Roraima: concepções, práticas e desafios / Psychologists in the educational system of Boa Vista/Roraima: conceptions, practices and challenges / Psicólogas(os) en el sistema educativo de Boa Vista/Roraima: concepciones, prácticas y retos

O objeto de estudo deste trabalho é a atuação de psicólogas(os) no campo da educação básica. Tivemos como objetivo investigar as práticas de atuação e os desafios enfrentados pelas(os) psicólogas(os) que trabalham na educação em Boa Vista (RR), com intuito de conhecer a inserção desses profissionais no sistema educacional. Trata-se de pesquisa qualitativa, orientada pelo referencial teórico-metodológico da Psicologia Escolar Crítica. Realizamos o processo de levantamento dos dados entre os meses de março e abril de 2018, por meio de entrevistas semiestruturadas, audiogravadas e transcritas. Encontramos 21 psicólogas e um psicólogo trabalhando em instituições educacionais e de ensino na cidade; a maioria atuava na educação básica; metade dos entrevistados ingressou por concurso público e a outra metade era contratada e comissionada; poucos(as) foram contratados(as) como psicólogos(as) escolares. Para a análise, selecionamos dez psicólogas(os) com mais tempo no cargo. Quanto às práticas de atuação, identificamos que 60% atuavam na modalidade clínica e 40% na modalidade clínica e institucional. Como desafios, encontramos melhoria das condições de trabalho; estabelecimento de relações hierárquicas e a dificuldade de fazer compreender as especificidades desse campo de trabalho; necessidade na melhoria das condições para formação continuada; atuação da(o) psicóloga(o) escolar enquanto ação institucional. Diante do exposto, compreendemos ser necessária uma mudança de paradigma na atuação das(os) psicólogas(os) que trabalham na educação na região, e a apropriação das discussões da área, principalmente, aquelas apresentadas pela Psicologia Escolar Crítica, vez que esta contribui para uma atuação que leve em conta os determinantes sociais, políticos, culturais e pedagógicos que constituem o processo de escolarização.(AU)

This work has as object of study the role of psychologists in the field of Basic Education. We aimed to investigate practices and challenges faced by psychologists who work in education in Boa Vista/RR, to know the insertion of these professionals in the educational system. This is a qualitative research, guided by the theoretical-methodological framework of Critical School Psychology. The data collection process was carried out between March and April 2018, with semi-structured, audio-recorded, and transcribed interviews. We found 21 female psychologists and one male psychologist working in educational institutions in the municipality; most worked in Basic Education; half of the interviewees had applied to work as government employee and the other half were hired and commissioned; few were hired as school psychologists. To carry out the analysis, we selected ten psychologists with more time in the position. Regarding the practices, we have identified that 60% worked in the clinical modality and 40% in the clinical and institutional modality. As challenges, we find the improvement in working conditions; the establishment of hierarchical relationships and the difficulty of making the specificities of this field of work understood; the need to improve conditions for continuing education; the practice of the school psychologist as institutional action. In view of the above, we understand that a paradigm shift in the performance of psychologists working in education in that region is necessary, and the appropriation of discussions in the area, especially those presented by Critical School Psychology, contributes to an action that considers social, political, cultural, and pedagogical determinants that constitute the schooling process.(AU)

Este trabajo tiene como objeto de estudio la actuación profesional de las(os) psicólogas(os) en la educación básica. Su objetivo es investigar las prácticas y retos que enfrentan las(os) psicólogas(os) que trabajan en la educación en Boa Vista, en Roraima (Brasil), con la intención de conocer la inserción de estos profesionales en el sistema educativo. Esta es una investigación cualitativa que se guía por el marco teórico-metodológico de la Psicología Escolar Crítica. Se recopilaron los datos entre los meses de marzo y abril de 2018, mediante entrevistas semiestructuradas, grabadas en audio y después transcritas. Las 21 psicólogas y un psicólogo trabajan en instituciones educativas de la ciudad; la mayoría trabajaba en la educación básica; la mitad de los entrevistados ingresaron mediante concurso público y la otra mitad era contratada y de puesto comisionado; pocos fueron contratados como psicólogos escolares. Para el análisis, se seleccionaron diez psicólogas(os) con más tiempo en el cargo. Con respecto a las prácticas, el 60% trabajaba en la modalidad clínica; y el 40%, en la modalidad clínica e institucional. Los retos son mejora de las condiciones laborales; establecimiento de relaciones jerárquicas y dificultad para comprender las especificidades de este campo de trabajo; necesidad de mejorar las condiciones para la educación continua; y actuación dela (del) psicóloga(o) escolar como acción institucional. En vista de lo anterior, es necesario el cambio de paradigma en la práctica profesional de las(os) psicólogas(os) que trabajan en la educación de la región y la apropiación de las discusiones del área, especialmente las presentadas por la Psicología Escolar Crítica, que contribuye a una acción que tiene en cuenta los determinantes sociales, políticos, culturales y pedagógicos que constituyen el proceso de escolarización.(AU)

(In)tolerância como política: os discursos de direita e de esquerda no facebook / (In)tolerance as policy: the rightist and leftist discourses on facebook / (In)tolerancia como política: los discursos de la derecha y la izquierda en facebook

Este estudo tem como objetivo analisar traços da mentalidade potencialmente autoritária a partir do discurso de usuários do Facebook vinculados a páginas de cunho político autodeclarado de direita e de esquerda no Brasil. A Netnografia é utilizada como aporte metodológico para imersão on-line nas páginas "Eu era Direita e não sabia" e "Jovens de Esquerda", selecionadas por meio do Facebook Audience Insights, ferramenta disponibilizada pelo Facebook. Delas, foram extraídas oito postagens com maior engajamento (número de comentários, curtidas e compartilhamentos), identificadas pelo Netvizz. Foram coletados 3.489 comentários, os quais foram organizados em um corpus textual submetido ao software IRAMUTEQ e analisados sob a perspectiva da análise crítica imanente da teoria crítica. Como resultado, apresenta-se a forma como o pensamento autoritário se manifesta na racionalização da sociedade contemporânea e nas práticas discursivas em redes sociais on-line, enraizada no âmbito sociopolítico brasileiro, ameaçando o processo democrático e a construção de uma sociedade plural e liberta.(AU)

This study aims to analyze traits of the potentially authoritarian mentality from the speech of Facebook users linked to political pages self-declared as rightist and leftist in Brazil. Netnography is used as a methodological contribution for online immersion in the pages "Eu era Direita e não sabia" and "Jovens de Esquerda" selected via Facebook Audience Insights, a tool provided by Facebook. From these, eight posts with greater engagement (number of comments, likes and shares), identified by Netvizz, were extracted. We collected 3,489 comments, which were organized in a textual corpus submitted to IRAMUTEQ software and analyzed from the perspective of immanent critical analysis of Critical Theory. As a result, we present the way in which authoritarian thinking manifests itself in the rationalization of contemporary society and in discursive practices in online social networks, rooted in the Brazilian socio-political sphere, threatening the democratic process and the construction of a plural and free society.(AU)

Este estudio tiene como objetivo analizar las huellas de la mentalidad potencialmente autoritaria a partir de los discursos de usuarios en Facebook vinculados a páginas políticas autodeclaradas de derecha y de izquierda en Brasil. La netnografía se utiliza como marco metodológico para la inmersión en línea en las páginas "Eu era Direita e não sabia" y "Jovens de Esquerda", seleccionadas por Facebook Audience Insights, herramienta proporcionada por Facebook. Se extrajeron las ocho publicaciones con mayor compromiso (número de comentarios, gustos y compartidas), identificadas por Netvizz. Se recogieron 3.489 comentarios, los cuales fueron organizados en un corpus textual sometido al software IRAMUTEQ y analizado bajo la perspectiva del análisis crítico inmanente de la teoría crítica. Los resultados presentan la forma en que el pensamiento autoritario se manifiesta en la racionalización de la sociedad contemporánea y en prácticas discursivas en redes sociales en línea, arraigada en el ámbito sociopolítico brasileño, que amenazan el proceso democrático y la construcción de una sociedad plural y liberada.(AU)