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1.
Prog Community Health Partnersh ; 18(2): 235-245, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38946568

RESUMEN

BACKGROUND: Recent data indicate rising opioid overdose deaths among African American residents of Washington, DC. OBJECTIVES: We highlight a community-informed approach to assessing attitudes toward opioid use disorder treatment among DC residents (February 2019 to March 2020). METHODS: A listening tour with trusted community leaders led to the formation of a Community Advisory Board (CAB). When the COVID-19 pandemic commenced in March 2020, community dialogues became exclusively virtual. The CAB partnered with academic leaders to co-create project mission and values and center the community's concerns related to opioid use and its causes, treatment structure, and facilitators of effective engagement. RESULTS: Interview guides were created for the engagement of community members, using values highlighted by the CAB. The CAB underscored that in addition to opioid problems, effective engagement must address community experience, collective strengths/resilience, and the role of indigenous leadership. CONCLUSIONS: Engaging community prior to project implementation and maintaining alignment with community values facilitated opioid use disorder assessments. Community-informed assessments may be critical to building community trust.


Asunto(s)
Negro o Afroamericano , COVID-19 , Investigación Participativa Basada en la Comunidad , Trastornos Relacionados con Opioides , Humanos , Negro o Afroamericano/psicología , District of Columbia/epidemiología , COVID-19/epidemiología , Femenino , Masculino , SARS-CoV-2 , Participación de la Comunidad/métodos , Adulto
2.
Prog Community Health Partnersh ; 18(2): 277-285, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38946572

RESUMEN

BACKGROUND: There are few methods that focus on engaging racial and ethnic minorities in research. The Meharry-Vanderbilt Community Engaged Research Core partnered with the University of Utah, the University of Michigan, and community/patient partners to convene a virtual summit to share the Community Engagement Studio (CE Studio) model, a structured and widely-used approach that facilitates community engagement in research. OBJECTIVES: The CE Studio Virtual Training Summit (Summit) goal was to prepare multi-stakeholder (e.g., researchers, community members) research teams to engage more racial/ethnic minorities in CE studios. METHODS: Summit planning included (1) agenda development, including CE Studio training and a live CE Studio demonstration; (2) summit advertisement across several networks, including minority-serving institutions; and (3) development of pre-and post-Summit evaluations. RESULTS: Among 50 registrants (76.7% academicians) that completed evaluations, more than 65% planned to increase engagement of racial/ethnic minorities in research and implement CE Studios as a result of the Summit. Increased confidence in all CE training areas was reported, including in conducting an effective CE Studio planning meeting (32.1% pre-Summit/90.3% post-Summit) and identifying and preparing patient/community stakeholders for engagement as CE Studio experts (46.4% pre-Summit/93.6% post-Summit). CONCLUSIONS: Virtual CE Studio training that includes multi-stakeholder planning partners can be an effective method for introducing the CE Studio model and preparing multi-stakeholder research teams to engage racial and ethnic minorities in CE Studios. This is particularly salient given that effective community engaged research methods and best practices are not currently being distributed through research programs at a pace consistent with the demands.


Asunto(s)
Investigación Participativa Basada en la Comunidad , Humanos , Investigación Participativa Basada en la Comunidad/organización & administración , Minorías Étnicas y Raciales , Participación de los Interesados , Participación de la Comunidad/métodos
4.
Prog Community Health Partnersh ; 18(2): 155-166, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38946562

RESUMEN

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


Asunto(s)
Investigación Participativa Basada en la Comunidad , Sistema de Registros , Humanos , Femenino , Masculino , Adulto , Persona de Mediana Edad , Florida , Participación de la Comunidad/métodos , Adolescente , Adulto Joven , Anciano , Relaciones Comunidad-Institución
5.
J Int AIDS Soc ; 27 Suppl 1: e26278, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38965981

RESUMEN

INTRODUCTION: Successful implementation of evidence-based practices depends on contextual factors like stakeholder engagement, the socio-political environment, resource availability, and stakeholders' felt needs and preferences. Nevertheless, inequities in implementation exist and undermine efforts to address HIV in marginalized key populations. Implementation science shows promise in addressing such inequities in the HIV response, but can be limited without meaningful engagement from citizens or communities. DISCUSSION: We define the concept of a citizen-engaged HIV implementation science as one that involves citizens and communities deeply in HIV implementation science activities. In this commentary, we discuss how citizen science approaches can be leveraged to spur equity in HIV implementation science. Drawing on three areas previously defined by Geng and colleagues that serve to drive impactful implementation science in the HIV response, we discuss how citizens can be engaged when considering "whose perspectives?", "what questions are being asked?" and "how are questions asked?". With respect to "whose perspectives?" a citizen-engaged HIV implementation science would leverage participatory methods and tools, such as co-creation, co-production and crowdsourcing approaches, to engage the public in identifying challenges, solve health problems and implement solutions. In terms of "what questions are being asked?", we discuss how efforts are being made to synthesize citizen or community-led approaches with existing implementation science frameworks and approaches. This also means that we ensure communities have a say in interrogating and deconstructing such frameworks and adapting them to local contexts through participatory approaches. Finally, when considering "how are questions asked?", we argue for the development and adoption of broad, guiding principles and frameworks that account for dynamic contexts to promote citizen-engaged research in HIV implementation science. This also means avoiding narrow definitions that limit the creativity, innovation and ground-up wisdom of local citizens. CONCLUSIONS: By involving communities and citizens in the development and growth of HIV implementation science, we can ensure that our implementation approaches remain equitable and committed to bridging divides and ending AIDS as a public health threat. Ultimately, efforts should be made to foster a citizen- and community-engaged HIV implementation science to spur equity in our global HIV response.


Asunto(s)
Infecciones por VIH , Ciencia de la Implementación , Humanos , Infecciones por VIH/prevención & control , Ciencia Ciudadana/métodos , Participación de la Comunidad/métodos
6.
Health Expect ; 27(4): e14138, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38982761

RESUMEN

INTRODUCTION: Co-design in health research involves patient and public involvement and engagement (PPIE) in intervention or service design. Traditionally, co-design is undertaken in-person; however, exploring online delivery is warranted. PPIE in co-design must be considered carefully, and assumptions that in-person approaches will transition automatically to an online environment should be avoided. Currently, there are a lack of evidence-informed approaches to facilitating co-design online. This study aimed to develop and evaluate a framework for authentically adapting health research co-design into an online environment. MATERIALS AND METHODS: The initial framework was developed through a literature review, synthesis of in-person co-design principles, and alignment of online strategies. The framework was then applied to a co-design project with 10 participants across relevant PPIE groups (end-users [n = 4], clinicians [n = 2], coaches [n = 2] and clinician-researchers [n = 2]). Participants' experiences of the online co-design process were evaluated via a mixed-methods design using surveys and semi-structured interviews. Evaluation data were analysed using descriptive statistics and reflexive thematic analysis to inform a revised framework. RESULTS: The developed framework, Partnership-focussed Principles-driven Online co-Design (P-POD) was used to design eight 90 min online co-design workshops. Evaluation data involved 46 survey responses, and eight participants were interviewed on project completion. Survey data indicated that the process was satisfying, engaging and adhered to the P-POD framework. Themes derived from interview data describe a respectful and collaborative online culture, valuing of diverse perspectives and space for healthy debate, how power was perceived as being shared but not equal and multiple definitions of success within and beyond the process. A final, refined P-POD framework is presented. CONCLUSION: With evaluation of the initial P-POD framework showing evidence of adherence to co-design principles, positive participant experiences and goal achievement for both the project and the participants, the refined P-POD framework may be used and evaluated within future intervention or service design. PATIENT OR PUBLIC CONTRIBUTION: This study involved the participants (end-users, clinicians and service providers) in the co-design process described, interpretation of the results through member-checking interview responses, assisting in development of the final framework and as co-authors for this manuscript.


Asunto(s)
Internet , Participación del Paciente , Humanos , Participación del Paciente/métodos , Participación de la Comunidad/métodos , Encuestas y Cuestionarios , Entrevistas como Asunto , Proyectos de Investigación , Investigación sobre Servicios de Salud
7.
Health Expect ; 27(4): e14130, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38962988

RESUMEN

INTRODUCTION: There is currently limited guidance for researchers on Patient and Public Involvement (PPI) for preclinical spinal cord research, leading to uncertainty about design and implementation. This study aimed to develop evidence-informed principles to support preclinical spinal cord researchers to incorporate PPI into their research. METHODS: This study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. Thirty-eight stakeholders including researchers, clinicians and people living with spinal cord injury took part in the expert panel. Participants were asked to rate their agreement with a series of statements relating to PPI in preclinical spinal cord research over two rounds. As part of Round 2, they were also asked to rate statements as essential or desirable. RESULTS: Thirty-eight statements were included in Round 1, after which five statements were amended and two additional statements were added. After Round 2, consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable. The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication. CONCLUSION: This research developed a previously unavailable set of evidence-informed principles to inform PPI in preclinical spinal cord research. These principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research and may also inform PPI in other preclinical disciplines. PATIENT AND PUBLIC INVOLVEMENT STATEMENT: This study was conducted as part of a project aiming to develop PPI in preclinical spinal cord injury research associated with an ongoing research collaboration funded by the Irish Rugby Football Union Charitable Trust (IRFU CT) and the Science Foundation Ireland Centre for Advanced Materials and BioEngineering Research (SFI AMBER), with research conducted by the Tissue Engineering Research Group (TERG) at the RCSI University of Medicine and Health Sciences. The project aims to develop an advanced biomaterials platform for spinal cord repair and includes a PPI Advisory Panel comprising researchers, clinicians and seriously injured rugby players to oversee the work of the project. PPI is included in this study through the involvement of members of the PPI Advisory Panel in the conceptualisation of this research, review of findings, identification of key points for discussion and preparation of the study manuscript as co-authors.


Asunto(s)
Técnica Delphi , Participación del Paciente , Traumatismos de la Médula Espinal , Humanos , Traumatismos de la Médula Espinal/terapia , Participación de la Comunidad/métodos , Masculino , Consenso , Femenino , Investigación Biomédica , Participación de los Interesados
8.
Health Promot Int ; 39(4)2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-38980688

RESUMEN

The COVID-19 pandemic exacerbated pre-existing social, economic and political inequalities. The evidence describes the use of community engagement approaches to support appropriate COVID-19 prevention and control measures. We aimed to delve deeper into the community response to COVID-19 in Barcelona neighbourhoods with different pre-existing levels of development of community health action (CHA). A qualitative phenomenological study was conducted in six Barcelona neighbourhoods with different types of CHAs. The sample included 37 in-depth interviews with community agents with good knowledge of the territory. The content analysis focused on three dimensions: symbolic (conceptions motivating action), substantive (the content and resources of the action) and operational (interactions between agents). Regardless of their CHA typology, all neighbourhoods responded to the needs generated by the pandemic. Symbolic: strong-CHA development, characterized by well-established participatory structures, facilitated responses to the crisis. In medium-CHA neighbourhoods, the emergency exacerbated previous tensions. In emerging-CHA neighbourhoods, previous participatory structures, although not health-specific, favoured the coordination of responses. Substantive: technology influenced the way CHA activities were conducted. Operative: in the strong-CHA neighbourhood, new participants were able to join previous participatory structures. In medium-CHA neighbourhoods, power dynamics hindered coordination. In conclusion, strong CHA can play a key role in addressing the adverse consequences of social and health crisis. Empowering citizens and communities should be a primary objective of public policy that integrates the 'health-in-all-policies' approach. This approach entails allocating public resources to strengthen the role of community action and power.


Asunto(s)
COVID-19 , Investigación Cualitativa , Características de la Residencia , Humanos , COVID-19/epidemiología , España/epidemiología , Participación de la Comunidad/métodos , SARS-CoV-2 , Pandemias , Salud Pública , Entrevistas como Asunto , Femenino , Masculino
9.
Glob Health Action ; 17(1): 2358602, 2024 Dec 31.
Artículo en Inglés | MEDLINE | ID: mdl-38860498

RESUMEN

BACKGROUND: Community engagement is recognized as a vital component of health-related research and programs, particularly during infectious disease outbreaks and epidemics. Despite the importance of engaging communities in the response to COVID-19, relatively little research has examined how this was (or was not) achieved, and even less in low- and middle-income countries. This article describes the community engagement that accompanied efforts to strengthen COVID-19 diagnosis and treatment as part of the ECO Project in Cochabamba, Bolivia and highlights lessons for future pandemic response. METHODS: Community engagement involved formative assessment, co-creation to develop a health information campaign, ongoing community listening and evaluation. Qualitative data were collected during workshops, project meetings and focus groups. Questionnaire-based surveys were conducted to assess COVID-19-related attitudes, knowledge and practices. RESULTS: The collected data highlighted the value of working closely with well-established community health committees and involving community members with social media skills in the design of COVID-19-related messages to address on- and offline misinformation. Co-creation sessions enabled the adjustment of the information campaign in terms of content and approach based on the needs and preferences of community members and health staff. The continuous listening with community and health personnel facilitated the ongoing adaptation of project activities. CONCLUSION: Through a stepped and multi-pronged approach, incorporating co-creation and community listening, the engagement could respond to emerging local challenges during the pandemic. The project created spaces for dialogue and opportunities for collaboration that strengthened links between the community and the health services.


Main findings Key elements of community engagement to improve COVID-19 diagnosis and treatment in Cochabamba, Bolivia, included working closely with well-established community health committees, involving community members with social media skills in the co-design of COVID-19-related messages, and continuous listening with community and health personnel facilitated the ongoing adaptation of project activities.Added knowledge With little research on community engagement for COVID-19 diagnosis and treatment in Latin America, this study reports the results of mixed methods research on the impact of a comprehensive approach to engagement that highlights lessons for future health emergencies.Global health impact for policy and action Lessons for engagement in health emergencies include the need for a multi-pronged approach, incorporating co-creation and community listening, to respond to emerging local challenges.


Asunto(s)
COVID-19 , Participación de la Comunidad , Humanos , Bolivia , COVID-19/epidemiología , COVID-19/diagnóstico , COVID-19/terapia , Participación de la Comunidad/métodos , SARS-CoV-2 , Conocimientos, Actitudes y Práctica en Salud , Encuestas y Cuestionarios , Masculino
10.
Am J Public Health ; 114(8): 789-793, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38870429

RESUMEN

Community engagement in research improves uptake of health interventions and health outcomes among marginalized populations. Researchers from school-based health centers serving marginalized communities in Miami, Florida fostered community engagement in COVID-19 research and health education through collaboration with school staff and student "champions" from June 2021 to June 2023. Evaluations completed by champions assessed acceptability, feasibility, and recommendations for improvements. Overall satisfaction was high among champions. We elaborate on lessons learned and future directions for this type of research collaboration. (Am J Public Health. 2024;114(8):789-793. https://doi.org/10.2105/AJPH.2024.307711).


Asunto(s)
COVID-19 , Humanos , COVID-19/prevención & control , COVID-19/epidemiología , Florida , Instituciones Académicas/organización & administración , Investigación Participativa Basada en la Comunidad , Participación de la Comunidad/métodos , SARS-CoV-2 , Servicios de Salud Escolar/organización & administración , Educación en Salud/organización & administración , Adolescente
11.
Health Promot Int ; 39(3)2024 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-38907528

RESUMEN

Community coalitions depend on their members to synergistically pool diverse resources, including knowledge and expertise, community connections and varied perspectives, to identify and implement strategies and make progress toward community health improvement. Several coalition theories suggest synergy is the key mechanism driving coalition effectiveness. The Community Coalition Action Theory (CCAT) asserts that synergy depends on how well coalitions engage their members and leverage their resources, which is influenced by coalition processes, member participation and satisfaction and benefits outweighing costs. The current study used mixed methods, including coalition member surveys (n = 83) and semi-structured interviews with leaders and members (n = 42), to examine the process of creating collaborative synergy in 14 community coalitions for smoke-free environments in Armenia and Georgia. Members, typically seven per coalition representing education, public health, health care and municipal administration sectors, spent an average of 16 hr/month on coalition-related work. Common benefits included making the community a better place to live and learning more about tobacco control. The greatest cost was attending meetings or events at inconvenient times. Members contributed various resources, including their connections and influence, skills and expertise and access to population groups and settings. Strong coalition processes, greater benefits and fewer costs of participation and satisfaction were correlated with leveraging of member resources, which in turn, was highly correlated with collaborative synergy. Consistent with CCAT, effective coalition processes created a positive climate where membership benefits outweighed costs, and members contributed their resources in a way that created collaborative synergy.


Asunto(s)
Conducta Cooperativa , Armenia , Humanos , Georgia , Política para Fumadores , Participación de la Comunidad/métodos , Promoción de la Salud/métodos , Femenino , Entrevistas como Asunto , Masculino , Redes Comunitarias , Contaminación por Humo de Tabaco/prevención & control , Encuestas y Cuestionarios
12.
PLoS One ; 19(6): e0299022, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38829836

RESUMEN

Controlled Human Infection Models (CHIS) involve administering human pathogens to healthy participants in controlled medical settings, which can elicit complex bioethical issues. Understanding how the community perceives such studies can significantly increase the participant's sense of cooperation and increases the researcher's and the participant's transparency. The current study describes the development of an educational intervention to achieve these ends as it aims to (1) analyze perceptions of the Controlled Human Infection Studies (CHIS), and (2) evaluate the participants' comprehension of the CHIS. METHODS: This is a qualitative action research that includes the development of an educational intervention with residents of a rural area in Minas Gerais, Brazil, where there is continuous natural transmission of the human pathogen Necator americanus ("hookworm"). In this area, it is intended to carry out a proposed phase 3 vaccine clinical trial in the future to test the efficacy of hookworm vaccines using controlled human infection. Two data collection strategies were used: an educational intervention and a focus group. RESULTS: The participants' perceptions showed distinct perspectives on CHIS. On one side, they recognized that the investigation is essential for the community, but on the other side, they thought that there would be resistance to its conduct by fear of infection. The idea that the study would generate a benefit for the greater good, contributing to the prevention of hookworm infection, was clearly stated. The participants perceived that the study offered concrete risks that could be reduced by constant monitoring by the researchers. They also mentioned the importance of access to information and the positive influence those who express interest in participating in the study can exert in the community. In relation to comprehension the participants memorized the information, mobilized it to explain everyday situations and created strategies to disseminate the study and engage the community in its development. By repeating and making sense of the information, the participant not only assimilates the knowledge transmitted, but also creates new knowledge. CONCLUSION: We concluded that an educational process of discussion and dialogue around participants' perceptions about the CHIS, promotes understanding and allows ways to disseminate information about the research to be collectively created.


Asunto(s)
Necator americanus , Necatoriasis , Humanos , Brasil , Animales , Necator americanus/inmunología , Femenino , Necatoriasis/prevención & control , Necatoriasis/transmisión , Necatoriasis/inmunología , Masculino , Adulto , Infecciones por Uncinaria/prevención & control , Infecciones por Uncinaria/transmisión , Vacunas/inmunología , Persona de Mediana Edad , Participación de la Comunidad/métodos , Adulto Joven , Grupos Focales
13.
BMJ Open ; 14(6): e082757, 2024 Jun 05.
Artículo en Inglés | MEDLINE | ID: mdl-38839384

RESUMEN

INTRODUCTION: The surge of public health emergencies over the past decade has disproportionately affected sub-Saharan Africa. These include outbreaks of infectious diseases such as Ebola, Monkeypox and COVID-19. Experience has shown that community participation is key to the successful implementation of infection control activities. Despite the pivotal role community engagement plays in epidemic and pandemic preparedness and response activities, strategies to engage communities have been underexplored to date, particularly in sub-Sahara Africa. Furthermore, reviews conducted have not included evidence from the latest pandemic, COVID-19. This scoping review aims to address these gaps by documenting through available literature, the strategies for community engagement for epidemic and pandemic preparedness and response in sub-Sahara Africa. METHODS AND ANALYSIS: We will use the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews and the methodological framework for scoping reviews from Arksey and O'Malley to guide the review. Two reviewers will develop a systematic search strategy to identify articles published from January 2014 to date. We will retrieve peer-reviewed research published in the English language from databases including Embase, EBSCO-host, PubMed, Global Health, CINAHL, Google Scholar and Web of Science. Additionally, we will search for relevant grey literature from the websites of specific international organisations, public health institutes and Government Ministries of Health in African countries. After the removal of duplicates, the two reviewers will independently screen all titles, abstracts and full articles to establish the relevance of each study for inclusion in the review. We will extract data from the included articles using a data extraction tool and present the findings in tabular form with an accompanying narrative to aid comprehension. ETHICS AND DISSEMINATION: Ethical approval is not required for the conduct of scoping reviews. We plan to disseminate the findings from this review through publications in a peer-reviewed journal, presentations at conferences and meetings with policy-makers.


Asunto(s)
COVID-19 , Participación de la Comunidad , Pandemias , Humanos , África del Sur del Sahara/epidemiología , COVID-19/epidemiología , COVID-19/prevención & control , Pandemias/prevención & control , Participación de la Comunidad/métodos , SARS-CoV-2 , Proyectos de Investigación , Salud Pública , Epidemias/prevención & control , Literatura de Revisión como Asunto , Preparación para una Pandemia
14.
Cien Saude Colet ; 29(6): e17132023, 2024 Jun.
Artículo en Portugués, Inglés | MEDLINE | ID: mdl-38896684

RESUMEN

This paper aims to bring reflections and notes for strengthening Brazilian structuring public policies, focusing on Popular Health Education in the Unified Health System (SUS) from the perspectives built in the Observatory of Popular Health Education and the Brazilian Reality. The Observatory is a valuable space for sharing health professionals' and popular educators' interpretations and experiences about local and Brazilian realities from the perspective of Popular Health Education. During its two years of activity, the Observatory has gathered summary interpretations of Popular Health Education for the crises that traverse the country's recent history in a dialogical and participatory way. In a panoramic view, the shared statements point to challenges for valuing the human approach to health promotion, including respecting local and community knowledge and social practices. Moreover, we underscore the importance of social participation in constructing participatory social processes in public health toward citizen autonomy and expanded democratic dynamics in the Brazilian State and its social equipment.


Este trabalho se propõe a trazer reflexões e apontamentos para o fortalecimento de políticas públicas estruturantes no Brasil, com foco na Educação Popular em Saúde no Sistema Único de Saúde (SUS), a partir das perspectivas construídas no Observatório de Educação Popular em Saúde e Realidade Brasileira. O Observatório é um espaço profícuo para o compartilhamento de interpretações e experiências de profissionais de saúde e educadores populares sobre a realidade local e realidade brasileira, a partir da ótica da Educação Popular em Saúde. De forma dialógica e participativa, ao longo de seus 2 anos de atividade, o Observatório foi capaz de reunir interpretações sintéticas da Educação Popular em Saúde para as crises que atravessam a história recente do país. De maneira panorâmica, as falas compartilhadas apontam desafios para valorização da abordagem humana na promoção da saúde, com a inclusão e o respeito aos saberes e práticas sociais locais e comunitárias. Além disso, destaca-se a importância da participação social na construção de processos sociais participativos na saúde pública, visando à autonomia do cidadão e à ampliação da dinâmica democrática no Estado brasileiro e em seus equipamentos sociais.


Asunto(s)
Educación en Salud , Política de Salud , Promoción de la Salud , Salud Pública , Brasil , Humanos , Educación en Salud/métodos , Promoción de la Salud/métodos , Salud Pública/educación , Programas Nacionales de Salud/organización & administración , Política Pública , Atención a la Salud/organización & administración , Participación Social , Participación de la Comunidad/métodos
15.
Health Expect ; 27(3): e14086, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38837509

RESUMEN

BACKGROUND: Scaling in health and social services (HSS) aims to increase the intended impact of proven effective interventions. Patient and public involvement (PPI) is critical for ensuring that scaling beneficiaries' interests are served. We aimed to identify PPI strategies and their characteristics in the science and practice of scaling in HSS. METHODS: In this scoping review, we included any scaling initiative in HSS that used PPI strategies and reported PPI methods and outcomes. We searched electronic databases (e.g., Medline) from inception to 5 February 2024, and grey literature (e.g., Google). Paired reviewers independently selected and extracted eligible reports. A narrative synthesis was performed and we used the PRISMA for Scoping Reviews and the Guidance for Reporting Involvement of Patients and the Public (GRIPP2). FINDINGS: We included 110 unique reports out of 24,579 records. In the past 5 years, the evidence on PPI in scaling has increased faster than in any previous period. We found 236 mutually nonexclusive PPI strategies among 120 scaling initiatives. Twenty-four initiatives did not target a specific country; but most of those that did so (n = 96) occurred in higher-income countries (n = 51). Community-based primary health care was the most frequent level of care (n = 103). Mostly, patients and the public were involved throughout all scaling phases (n = 46) and throughout the continuum of collaboration (n = 45); the most frequently reported ethical lens regarding the rationale for PPI was consequentialist-utilitarian (n = 96). Few papers reported PPI recruitment processes (n = 31) or incentives used (n = 18). PPI strategies occurred mostly in direct care (n = 88). Patient and public education was the PPI strategy most reported (n = 31), followed by population consultations (n = 30). CONCLUSIONS: PPI in scaling is increasing in HSS. Further investigation is needed to better document the PPI experience in scaling and ensure that it occurs in a meaningful and equitable way. PATIENT AND PUBLIC CONTRIBUTION: Two patients were involved in this review. They shared decisions on review questions, data collection instruments, protocol design, and findings dissemination. REVIEW REGISTRATION: Open Science Framework on 19 August 2020 (https://osf.io/zqpx7/).


Asunto(s)
Participación del Paciente , Servicio Social , Humanos , Participación de la Comunidad/métodos , Servicios de Salud
16.
BMC Palliat Care ; 23(1): 117, 2024 May 07.
Artículo en Inglés | MEDLINE | ID: mdl-38711035

RESUMEN

BACKGROUND: The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC. METHODS: Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. KEYWORDS: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators. RESULTS: Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities. CONCLUSION: Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.


Asunto(s)
Cuidados Paliativos , Humanos , Participación de la Comunidad/métodos , Participación de la Comunidad/psicología , Cuidados Paliativos/métodos , Cuidados Paliativos/psicología , Cuidados Paliativos/normas , Cuidado Terminal , Redes Comunitarias
17.
Philos Trans R Soc Lond B Biol Sci ; 379(1904): 20230106, 2024 Jun 24.
Artículo en Inglés | MEDLINE | ID: mdl-38705194

RESUMEN

Emerging technologies are increasingly employed in environmental citizen science projects. This integration offers benefits and opportunities for scientists and participants alike. Citizen science can support large-scale, long-term monitoring of species occurrences, behaviour and interactions. At the same time, technologies can foster participant engagement, regardless of pre-existing taxonomic expertise or experience, and permit new types of data to be collected. Yet, technologies may also create challenges by potentially increasing financial costs, necessitating technological expertise or demanding training of participants. Technology could also reduce people's direct involvement and engagement with nature. In this perspective, we discuss how current technologies have spurred an increase in citizen science projects and how the implementation of emerging technologies in citizen science may enhance scientific impact and public engagement. We show how technology can act as (i) a facilitator of current citizen science and monitoring efforts, (ii) an enabler of new research opportunities, and (iii) a transformer of science, policy and public participation, but could also become (iv) an inhibitor of participation, equity and scientific rigour. Technology is developing fast and promises to provide many exciting opportunities for citizen science and insect monitoring, but while we seize these opportunities, we must remain vigilant against potential risks. This article is part of the theme issue 'Towards a toolkit for global insect biodiversity monitoring'.


Asunto(s)
Ciencia Ciudadana , Insectos , Animales , Ciencia Ciudadana/métodos , Participación de la Comunidad/métodos , Monitoreo del Ambiente/métodos
18.
Health Expect ; 27(3): e14072, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-38747318

RESUMEN

BACKGROUND: Disability is often an essentialised and oversimplified concept. We propose refining this while incorporating the multidimensional nature of disability by increasing the use of existing survey questions and their corresponding data to enrich, broaden and inform understandings of disability. METHODS: We combined patient and public involvement and engagement (PPIE) with focus groups and concept mapping to collaboratively map disability survey questions into conceptual models of disability with six members of the public with lived experiences of disability. RESULTS: Using reflexive thematic analysis, we identified three qualitative themes and eight subthemes through a series of four PPIE activities: (1) understanding concepts of disability based on individual experience, subthemes: 1.1-preference for the biopsychosocial model, 1.2-'Reviewing' instead of mapping survey questions and 1.3-comparing questions to real life; (2) consistency between understanding needs and implementing adjustments, subthemes: 2.1-connecting preparation and operation, 2.2-inclusivity and adjustments in activities and 2.3-feedback for improving activities and (3) real-world applications-targeted awareness raising, subthemes: 3.1-who, where, what and how to share activity findings and results, 3.2-sharing with human resource and equality, diversity and inclusion professionals. CONCLUSION: Members of the public who collaborated in these activities felt empowered, engaged and supported throughout this study. This approach offers a model for other researchers to cede power to the public over the research aspects typically reserved for researchers. PATIENT OR PUBLIC CONTRIBUTION: We involved members of the public with lived experience throughout this study-co-design, co-facilitation, collaboratively mapping the disability or disability-related survey questions into conceptual models of disability, evaluation of the activities, co-analysis and co-authorship.


Asunto(s)
Participación de la Comunidad , Personas con Discapacidad , Grupos Focales , Participación del Paciente , Humanos , Participación de la Comunidad/métodos , Encuestas y Cuestionarios , Investigación Cualitativa , Masculino , Femenino
19.
BMJ Open ; 14(5): e080495, 2024 May 01.
Artículo en Inglés | MEDLINE | ID: mdl-38692723

RESUMEN

OBJECTIVE: Engagement-capable health organisations recognise that consumer engagement (also known as patient engagement, consumer engagement, patient and public involvement) must occur at every level of the organisation if it is to be meaningful and genuine. Despite this aspiration, health organisations struggle to adopt, implement, and embody consumer engagement capability in a way that has yielded impact. The Partner Ring (PR) is an embedded model for building staff capability for consumer partnerships. It is hosted by an employed Patient Partner. PR was implemented at the Agency for Clinical Innovation in New South Wales, Australia. The aim of this study was to assess the feasibility (acceptability, demand and practicality) of this innovation to increase consumer engagement capability. DESIGN: One-group post-intervention mixed methods approach to assess feasibility. PARTICIPANTS: ACI staff engaged in the PR (n=40 of 89 members). DATA COLLECTION AND ANALYSIS: Qualitative data was collected through an artificial intelligence (AI)-driven interactive interview, with 40 responses received between 29 June and 12 July 2023. A framework analysis and Generative AI causal mapping were conducted to identify and visualise causal claims within the texts. Cost and session attendance collected from the same point in time supplemented the analysis. FINDINGS: Findings were categorised by the following feasibility constructs: acceptability, demand and practicality. Almost all the respondents indicated their intent to continue using the PR and outlined personal benefits and professional benefits. For example, (n=23, 57%) reacted positively to the psychological safety of the PR, and professionally people identified attendance increased their knowledge and skills (n=23, 57%). CONCLUSION: The PR is feasible and likely to be an acceptable innovation for building staff capability and consumer engagement skills across a large health system or organisation. It could be adopted or adapted by other jurisdictions.


Asunto(s)
Estudios de Factibilidad , Humanos , Nueva Gales del Sur , Participación de la Comunidad/métodos , Participación del Paciente , Innovación Organizacional , Australia , Investigación Cualitativa
20.
Am J Public Health ; 114(S5): S396-S401, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38776498

RESUMEN

Through a COVID-19 public health intervention implemented across sequenced research trials, we present a community engagement phased framework that embeds intervention implementation: (1) consultation and preparation, (2) collaboration and implementation, and (3) partnership and sustainment. Intervention effects included mitigation of psychological distress and a 0.28 increase in the Latinx population tested for SARS-CoV-2. We summarize community engagement activities and implementation strategies that took place across the trials to illustrate the value of the framework for public health practice and research. (Am J Public Health. 2024;114(S5):S396-S401. https://doi.org/10.2105/AJPH.2024.307669).


Asunto(s)
COVID-19 , Humanos , COVID-19/prevención & control , Participación de la Comunidad/métodos , SARS-CoV-2 , Salud Pública/métodos , Hispánicos o Latinos , Investigación Biomédica Traslacional/métodos , Investigación Biomédica Traslacional/organización & administración
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