Solidarity, citizenship and social justice: perceptions of social actors about public responses to COVID-19. / Solidariedade, cidadania e justiça social: percepções de atores sociais sobre as respostas públicas à COVID-19.

This qualitative study aimed to analyze the social actors' perceptions of public responses during the COVID-19 pandemic. We conducted semi-structured interviews with eleven civil society representatives and social movement leaders. We also performed triangulation based on the systematization of opinion papers authored by humanitarian organizations and civil society leaders and published in large-circulation newspapers. Our analysis was inspired by the ethical principles of social justice, solidarity, and citizenship. Two main themes emerged from the thematic analysis: 1) disproportionately affected populations remain invisible to care and protection; 2) there is an intentional project to annihilate "undesirable" populations. Community movements must be incorporated as an essential part of the responses to provide care and protection and mitigate the effects during health emergencies. Care, solidarity, and social participation are central to building health protection responses within the framework of social justice. The responses to transforming the future in the aftermath of the pandemic will occur through the initiatives of civil society and community leaders within the territories.

Trata-se de uma análise qualitativa das percepções de atores sociais sobre as respostas públicas durante a pandemia de COVID-19. Foram conduzidas entrevistas semiestruturadas com 11 representantes da sociedade civil indicados por lideranças de movimentos sociais. Para garantir a análise de uma diversidade de vozes, também realizamos a sistematização de artigos de opinião de autoria de organizações humanitárias e lideranças da sociedade civil, publicados em jornais de grande circulação. Nossa análise se inspirou nos princípios éticos da justiça social, solidariedade e cidadania. Utilizamos da análise temática, na qual dois temas principais emergiram: 1) as populações desproporcionalmente afetadas seguem invisibilizadas para cuidados e proteções; 2) há um projeto intencional de aniquilamento das populações consideradas indesejáveis. Para cuidados e mitigação dos efeitos durante emergências sanitárias, os movimentos comunitários devem ser incorporados como parte essencial das respostas. Cuidado, solidariedade e participação cidadã são centrais para a construção de respostas para proteção em saúde dentro do marco da justiça social. As respostas para transformação do futuro pós-pandêmico se localizam nas iniciativas da sociedade civil e de lideranças comunitárias dentro dos territórios.

Realising radical potential: building community power in primary health care through Participatory Action Research.

BACKGROUND: While community participation is an established pro-equity approach in Primary Health Care (PHC), it can take many forms, and the central category of power is under-theorised. The objectives were to (a) conduct theory-informed analysis of community power-building in PHC in a setting of structural deprivation and (b) develop practical guidance to support participation as a sustainable PHC component. METHODS: Stakeholders representing rural communities, government departments and non-governmental organisations engaged through a participatory action research (PAR) process in a rural sub-district in South Africa. Three reiterative cycles of evidence generation, analysis, action, and reflection were progressed. Local health concerns were raised and framed by community stakeholders, who generated new data and evidence with researchers. Dialogue was then initiated between communities and the authorities, with local action plans coproduced, implemented, and monitored. Throughout, efforts were made to shift and share power, and to adapt the process to improve practical, local relevance. We analysed participant and researcher reflections, project documents, and other project data using power-building and power-limiting frameworks. RESULTS: Co-constructing evidence among community stakeholders in safe spaces for dialogue and cooperative action-learning built collective capabilities. The authorities embraced the platform as a space to safely engage with communities and the process was taken up in the district health system. Responding to COVID-19, the process was collectively re-designed to include a training package for community health workers (CHWs) in rapid PAR. New skills and competencies, new community and facility-based alliances and explicit recognition of CHW roles, value, and contribution at higher levels of the system were reported following the adaptations. The process was subsequently scaled across the sub-district. CONCLUSIONS: Community power-building in rural PHC was multidimensional, non-linear, and deeply relational. Collective mindsets and capabilities for joint action and learning were built through a pragmatic, cooperative, adaptive process, creating spaces where people could produce and use evidence to make decisions. Impacts were seen in demand for implementation outside the study setting. We offer a practice framework to expand community power in PHC: (1) prioritising community capability-building, (2) navigating social and institutional contexts, and (3) developing and sustaining authentic learning spaces.

Policy actors' perceptions of public participation to tackle health inequalities in Scotland: a paradox?

BACKGROUND: Health inequalities are persistent and widening with transformative policy change needed. Radically shifting policy to tackle upstream causes of inequalities is likely to require public participation to provide a mandate, evidence and to address questions of co-design, implementation and acceptability. The aim of this paper is to explore perceptions among policy actors on why and how the public should be involved in policymaking for health inequalities. METHODS: In 2019-2020, we conducted exploratory, in-depth, semi-structured interviews with 21 Scottish policy actors from a range of public sector bodies and agencies and third sector organisations that work in, or across, health and non-health sectors. Data were analysed thematically and used to examine implications for the development of participatory policymaking. RESULTS: Policy actors viewed public participation in policymaking as intrinsically valuable for democratic reasons, but the main, and more challenging, concern was with how it could affect positive policy change. Participation was seen as instrumental in two overlapping ways: as evidence to improve policies to tackle health inequalities and to achieve public acceptance for implementing more transformative policies. However, our analysis suggests a paradox: whilst policy actors place importance on the instrumental value of public participation, they simultaneously believe the public hold views about health inequalities that would prevent transformative change. Finally, despite broad agreement on the need to improve public participation in policy development, policy actors were uncertain about how to make the necessary changes due to conceptual, methodological and practical challenges. CONCLUSIONS: Policy actors believe in the importance of public participation in policy to address health inequalities for intrinsic and instrumental reasons. Yet, there is an evident tension between seeing public participation as a route to upstream policies and a belief that public views might be misinformed, individualistic, short-term or self-interested and doubts about how to make public participation meaningful. We lack good insight into what the public think about policy solutions to health inequalities. We propose that research needs to shift from describing the problem to focusing more on potential solutions and outline a potential way forward to undertake effective public participation to tackle health inequalities.

Engaging diverse populations in aging research during the COVID-19 pandemic: Lessons learned from four National Institutes of Health funded-Centers.

Background: The COVID-19 pandemic's impact on our personal and professional lives required a rapid adaptation to the evolving health crisis and accumulating social stresses. Established measures to reduce the spread of infection and potential death had a direct effect on ongoing research that involved older adults and underrepresented racial/ethnic groups. Although important to preserve public health, these measures risk further isolation of vulnerable research participant populations and threatened established community partnerships. To address the social and research challenges evolving from the COVID-19 pandemic, four National Institutes of Health funded-Centers that engage with community members to enhance research and advance the science of aging came together to learn from each other's efforts, approaches, and communication with community partners. Methods: Monthly meetings served as a venue to discuss the challenges of engagement with research participants and support community partners during the pandemic. The developed learning community also contributed to recognize and address research staff stress and isolation. We describe how these conversations led our Centers to address unprecedented challenges and sustain community engagement within diverse populations, especially Black/African Americans, Latinos, Middle Eastern/Arab Americans and the oldest-old. Results: The exchange of information resulted in maintaining long standing community relationships and partnerships in the face of the uncertainties generated by the pandemic. The strategies included adapting education programs to reduce risk of infection, recognizing symptoms, promoting vaccination and understanding of the effect of COVID-19 to the brain. Different strategies were used to address the effects of isolation and maintain community engagement. Although new research participant enrollment was a challenge, telephone and virtual visits allowed research participants to remain active in research. Community members participation in virtual learning events was variable, ranging from a dozen to hundreds of participants. Invitations to organize panels about newly developed topics indicated the need for information from trusted sources. Conclusion: In sum, the COVID-19 pandemic re - directed all four Centers' commitment to community service led to developing strategies for social support, which will potentially contribute to transforming public perceptions about research and researchers.

In the name of COVID-19: legitimizing the exclusion of community participation in Ecuador's health policy.

Global shifts toward a disease-oriented, vertical approach to health has involved limiting the right for communities to participate in decision-making. Ecuador's authoritarian legacy has forced civil society and social organizations to adopt 'coping strategies', while large protests recently derived into violent struggles. The country has been severely hit by the COVID-19 pandemic amid corruption scandals involving hospital and food purchases by government during the response. This study critically examines how Ecuador's government took into consideration 'community participation' as a value and tenet of health promotion. Our systematic textual analysis focuses on 53 consecutive resolutions by the National Emergency Operations Committee (EOC) leading the decision-making processes, which, explicitly requires community participation. Results show that the 'lifecycle' of the central government's evolving policy framing centered on law enforcement and the private sector, followed by the social sector. Further, there is no evidence of stakeholders from civil society or organizations taking part in decision-making. Having legitimized the exclusion of community participation in Ecuador's response to the COVID-19 pandemic, it is possible that the government will fail to consider the wider social implications of its impact. In particular, the limits to local governments becoming informed and making decisions without mediation by the National EOC will further impede community participation in health decision-making in the future. This implies that local knowledge and experiences will also not inform health policy.

Exploring the benefits and challenges of being a consumer educator in nursing education: A scoping review.

WHAT IS KNOWN ON THE SUBJECT?: The mental health needs of individuals are increasing following the COVID-19 pandemic, with a need to focus on the education of nurses to be equipped to respond. Stigma around mental health still exists for nursing students, with the implementation of mental health education by an individual with lived experience having a known positive effect on stigmatizing attitudes. Research on consumer involvement in nursing education identifies that the consumer role is often varied and casual, with no existing review on the consumer experience. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: The study emphasizes the importance of consumer involvement in nursing education. Alongside the literature focussing on the student benefits, this review highlights both the benefits of being an educator, and the challenges of being an educator from the consumer's perspective. WHAT ARE THE IMPLICATIONS FOR PRACTICE: The knowledge around the consumer perspective mapped in this review has the potential to impact and transform education protocols for consumer involvement in education. This can maximize on the meaningful contribution that lived experience has within mental health nursing education. This review enforces the need for an awareness of the challenges consumers face in their role as an educator, and highlights the need for further understanding of how to overcome these challenges. There is also an opportunity to capitalize on the benefits identified by consumers in their role within nursing education and sharing their lived experience. ABSTRACT: Introduction While the mental health needs of populations are increasing, the targeted training of mental health professionals, specifically nurses, is required. Stigma surrounding mental health from nursing students exists, highlighting educational gaps. To address this, the involvement of consumers in undergraduate education has resulted in a positive effect on the stigmatizing attitudes of nursing students. There is still a limited understanding, however, of the consumers experience in this process. Aim To explore the experiences of individuals living with mental illness in educating nursing students. Methods The Joanna Brigg's Institute's (JBI) methodology for scoping reviews was used to search CINAHL, Medline, PsychInfo, Web of Science and Scopus including grey literature. The eligibility criteria for participants included individuals (a) diagnosed with a mental illness; (b) over 18 years of age; and (c) who participated in the educating of nursing students surrounding mental health in any context. Articles were only considered that were in the English language, and no time constraint was enforced during the search strategy for article selection. The search yielded 2640 results, of which 26 articles were included. Results Results found two prominent categories, including both benefits and challenges of being the educator from the consumer perspective. The benefits included: (a) the person behind the diagnosis; (b) reciprocal relationships; (c) positive effects on well-being; (d) unique contribution; and (e) purpose in storytelling. Challenges identified included: (a) vulnerability; (b) voyeuristic; (c) lack of preparation; (d) negative effects on well-being; (e) support; (f) not a real consumer; (g) variation of involvement; and (h) acknowledging consumer perspective. Discussion As consumer-led education for mental health nursing curriculum becomes mandated, amplifying the voice of the consumer in nursing education is crucial. While the benefits and challenges voiced by consumers in their involvement in mental health nursing education have been outlined here, further knowledge focussed on the consumer's experience as an educator outside the classroom setting, and in clinical practicum, alongside consumer involvement in specialized mental health education sessions, could aid in transforming consumer involvement. Implications for practice This review offers an incentive for nurse educators to capitalize on the benefits of educating for consumers to promote a meaningful contribution, while also practicing with an awareness of voiced challenges.

A Call to Action to Address the Social Determinants of Health.

Rapid growth in metropolitan areas is associated with urban development and revitalization. However, neighborhood gentrification has negatively affected low income and communities of color by displacement and compounding structural and systemic inequities. Black/African American, Hispanic/Latino, and immigrants/refugee communities are burdened with negative health outcomes from adverse circumstances illustrated by disparities in the social determinants of health and health indicators, that is, chronic disease and COVID-19. To remediate the situation and restore health, the multisector response needs to be reframed and emphasize systemic, integrated, and aligned efforts. These include policy, systems and environmental change approaches, community involvement, improvement of data systems, and workforce development.

Reaching late adopters: factors influencing COVID-19 vaccination of Marshallese and Hispanic adults.

BACKGROUND: Marshallese and Hispanic communities in the United States have been disproportionately affected by COVID-19. Identifying strategies to reach late vaccine adopters is critical for ongoing and future vaccination efforts. We utilized a community-engaged approach that leveraged an existing community-based participatory research collaborative of an academic healthcare organization and Marshallese and Hispanic faith-based organizations (FBO) to host vaccination events. METHODS: Bilingual Marshallese and Hispanic study staff conducted informal interviews with 55 participants during the 15-minute post-vaccination observation period and formal semi-structured interviews with Marshallese (n = 5) and Hispanic (n = 4) adults post-event to assess the implementation of community vaccine events at FBOs, with a focus on factors associated with the decision to attend and be vaccinated. Formal interview transcripts were analyzed using thematic template coding categorized with the socio-ecological model (SEM). Informal interview notes were coded via rapid content analysis and used for data triangulation. RESULTS: Participants discussed similar factors influencing attitudes and behaviors toward receiving the COVID-19 vaccine. Themes included: (1) intrapersonal - myths and misconceptions, (2) interpersonal - protecting family and family decision-making, (3) community - trust of community location of events and influence of FBO members and leaders, (4) institutional - trust in a healthcare organization and bilingual staff, and (5) policy. Participants noted the advantages of vaccination delivery at FBOs, contributing to their decision to attend and get vaccinated. CONCLUSIONS: The following strategies may improve vaccine-related attitudes and behaviors of Marshallese and Hispanic communities not only for the COVID-19 vaccine but also for other preventive vaccinations: 1) interpersonal-level - develop culturally-focused vaccine campaigns targeting the family units, 2) community-level - host vaccination events at convenient and/or trusted locations, such as FBOs, and engage community and/or FBO formal or lay leaders as vaccine ambassadors or champions, and 3) institutional-level - foster trust and a long-term relationship with the healthcare organization and provide bilingual staff at vaccination events. Future research would be beneficial to investigate the effects of replicating these strategies to support vaccine uptake among Marshallese and Hispanic communities.

Link for Equity, a community-engaged waitlist randomized controlled trial of a culturally responsive trauma-informed care program for BIPOC students: Design features and characteristics of baseline sample.

BACKGROUND: Link for Equity is a multi-tiered, school-based program of trauma-informed care and cultural humility designed to reduce the impact of Adverse Child Experiences among Black Indigenous and other children of color (BIPOC). This report describes the program, its trial design, and the study participants' baseline characteristics. METHODS: We designed a nested waitlist-controlled trial to evaluate Link for Equity's effectiveness in reducing school violence among BIPOC students. Three pairs of school districts, matched on suspension rates and enrollment of Black/African American, Hispanic/Latinx, and American Indian/Alaska Native children, were randomized into either an intervention or delayed intervention (waitlist control) group. A community-engaged approach guided the development of protocols. Within intervention sites, BIPOC students who screened positive for ACEs or posttraumatic stress were also randomized into an immediate and waitlist control group to receive additional one-on-one support from trained school staff. RESULTS: The trial was implemented from 2019 to 2021, which overlapped with the pandemic and civil unrest in Minnesota. At baseline, 444 staff and 188 students enrolled in the study. Over a quarter of American Indian/Alaska Native students, 18% of multiple race, 12% of Black/African American, 14% of Hispanic/Latinx students reported 4+ ACEs. Between 44 and 53% of all the BIPOC students in the study were symptomatic for PTSD. Of the enrolled students, 78.7% qualified for one-on-one Link support. CONCLUSION: We implemented a multilevel waitlist-controlled trial of Link for Equity using community-engaged methods. Despite school closures during the pandemic, the study persisted with its methods now being employed in an expanded cohort of middle schools. TRIAL REGISTRATION: ClinicalTrials.gov (NCT04026477, NCT04026490).

Working with Data in Adult English Classrooms: Lessons Learned about Communicative Justice during the COVID-19 Pandemic.

Throughout COVID-19, health officials have relied on data visualizations to communicate urgent messages about the spread of the virus and preventative measures. Relatively few efforts have employed participatory engagement with communities who have experienced a disproportionate burden of COVID-19 illness to shape these communications. Sociologist W.E.B. Du Bois viewed data visualization as an approach to changing the way people think about themselves. This paper describes a community-engaged approach to data literacy skill-building with bilingual Latina learners in an adult English program in Northern California, Bay Area. The curriculum combines data visualization activities with language instruction and preventive health themes. Early work on COVID-19 in 2020-21 emphasized improving health knowledge and message interpretation but later shifted to a critical data literacy perspective, focusing on myth-busting, improving risk messaging in their own social networks, and supporting learners to see the power of their own experiences in data story-telling processes. This pedagogical approach, guided by Charles Brigg's idea of communicative justice priorities, locates adult learners' data visualization work as part of a broader effort to be included in the perspectives that shape knowledge production in today's healthcare system. This approach can be used to examine disparities in information access in linguistically minoritized communities and guide future education interventions.

Older adults' community participation, physical activity, and social interactions during and following COVID-19 restrictions in Australia: a mixed methods approach.

BACKGROUND: With the increasing age of the global population, key components of healthy ageing including community, physical, and social participation continue to gain traction. However, management of the COVID-19 pandemic aimed to protect older adults and reduce the spread of the virus, this restricted community participation and reduced the opportunities for social interaction. METHODS: This mixed methods study investigates community dwelling older adults' community participation; physical activity and social interaction prior to, during, and following the COVID-19 lockdown in Adelaide, Australia. Twenty-six community dwelling older adults were monitored over three time-points between November 2018 and October 2020, with Global Positioning Systems, accelerometry and self-reported diaries. In addition, nineteen participants completed semi-structured interviews. RESULTS: Community participation varied across the three time points, with significant reduction in the number of trips taken out-of-home (p = 0.021), social interactions (p = 0.001) and sleep quality (p = 0.008) during restrictions. Five themes were identified to explain personal experiences of community participation during restrictions: (1) Reframing of meaning, (2) Redefining to maintain activities, (3) Revision of risk, (4) Reflection and renewal and (5) Future planning. CONCLUSION: During COVID-19 the physical and social activities of community dwelling older adults changed. Services that support older adults to adapt their activities   , considering their capacities and preferences, to facilitate community participation are required.

Community engagement and involvement in managing the COVID-19 pandemic among urban poor in low-and middle-income countries: a systematic scoping review and stakeholders mapping.

BACKGROUND: Community engagement and involvement (CEI) was crucial for the COVID-19 pandemic response, particularly among the urban poor in low-and middle-income countries (LMICs). However, no evidence synthesis explores how CEI can benefit public health emergencies. OBJECTIVE: We conducted a systematic scoping review of the CEI with an emphasis on stakeholder identification, accountability mapping, the support system, and the engagement process among urban poor populations in LMICs during the COVID-19 pandemic. METHODS: We searched eleven databases, including PubMed, Embase, Web of Science, and CINAHL, following the PRISMA-2020 guidelines to find articles published between November 2019 and August 2021. PROSPERO registration No: CRD42021283599. We performed the quality assessment using a mixed-method appraisal tool. We synthesized the findings using thematic framework analysis. RESULTS: We identified 6490 records. After the title and abstract screening, 133 studies were selected for full-text review, and finally, we included 30 articles. Many stakeholders were involved in COVID-19 support, particularly for health care, livelihoods, and WASH infrastructure, and their accountability mapping by adopting an interest - influence matrix. This review emphasizes the significance of meaningful CEI in designing and implementing public health efforts for pandemic management among urban slum populations. The interest - influence matrix findings revealed that specific community volunteers, community-based organizations, and civil society organizations had high interest but less influence, indicating that it is necessary to recognize and engage them. CONCLUSION: Motivation is crucial for those with high influence but less interest, such as corporate responsibility/conscience and private food supply agencies, for the health system's preparedness plan among urban populations.

Exploration of inter-jurisdictional TB programming and mobility in a Canadian First Nation community.

BACKGROUND: Colonially imposed jurisdictional boundaries that have little meaning to Indigenous peoples in Canada may confound tuberculosis (TB) prevention and care activities. This study explores how inter-jurisdictional mobility and the current accommodation of mobility through policies and programming sustain a regional TB epidemic in northwestern Saskatchewan, and northeastern Alberta. METHODS: A qualitative instrumental case study was performed using a community based participatory approach. Semi-structured interviews were conducted with First Nations peoples from a high-incidence community in Canada including community-based healthcare workers. These interview data are presented in the context of a multi-level document analysis of TB program guidelines. RESULTS: The location of the community, and related lack of access to employment, services and care, necessitates mobility across jurisdictional boundaries. There are currently no formal federal or provincial guidelines in place to accommodate highly mobile patients and clients within and across provincial TB prevention and care programs. As a result, locally developed community-based protocols, and related ad-hoc strategies ensure continuity of care. CONCLUSION: Indigenous peoples living in remote communities face unique push/pull factors that motivate mobility. When these motivations exist in communities with increased risk of contagion by communicable infectious diseases such as TB, public health risks extend into increasingly large areas with competing jurisdictional authority. Such mobility poses several threats to TB elimination. We have identified a gap in TB services to systematically accommodate mobility, with specific implications for Indigenous peoples and reconciliation. We recommend clearly defined communication paths and inter-jurisdictional coordination to ensure maintenance of care for mobile populations.

Risk Communication and Community Engagement in Action During Ukraine's War.

In the light of recent emergencies in Europe and around the globe-including COVID-19 and the war in Ukraine-the spotlight has shifted towards the scarcity of Risk Communication and Community Engagement (RCCE) research applied to health emergencies. RCCE nurtures the sense of empowerment among communities since it ensures that individuals and communities are part of the solution creation, thus they take informed decisions to protect their health and in turn, contribute to emergency control. Therefore, RCCE can play an important role as core public health intervention across health emergency preparedness and response. However, its tremendous impact, is still underestimated and not widely common. This viewpoint showcases the RCCE measures applied to the Ukrainian emergency to ensure that Ukrainian refugees access health services in host countries, based on their needs and concerns.

Rapid Community Engagement in Response to SARS-CoV-2 Funding Opportunities: New York City, 2020‒2021.

In response to fast-turnaround funding opportunities, collaborations have been forming across the country to address severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) disparities. Here we describe the process, notes from the field, and evaluation results from a new collaboration involving multiple partners, formed in October 2020 in New York City as part of the Rapid Acceleration of Diagnostics initiative. We used the validated Research Engagement Survey Tool to evaluate the partnership. Results can inform future research and improve engagement efforts aimed at reducing SARS-CoV-2 disparities. (Am J Public Health. 2022;112(S9):S904-S908. https://doi.org/10.2105/AJPH.2022.307072).