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BACKGROUND: Less than 1% of studies on child and adolescent health report the involvement of adolescents in health research. This is attributed to barriers experienced by researchers and adolescents in the engagement process. To address this under-involvement of adolescents, we first need a better understanding of the factors that hinder adolescent involvement in health research. OBJECTIVE: We conducted an umbrella review of reviews to consolidate the review-level evidence on the barriers to meaningful involvement of adolescents in health research. METHODS: We preregistered this umbrella review of reviews with PROSPERO (CRD42021287467). We searched 11 databases; Google Scholar; and PROSPERO; supplemented by a hand search of the reference lists of eligible reviews, relevant journals, websites of 472 organisations, and input from experts. This resulted in the inclusion of 99 review articles exploring adolescent involvement in studies on adolescent physical or mental health, which were narratively synthesised. Adolescent coresearchers were engaged at all stages of the review. RESULTS: We found that adolescent involvement in health research is impeded by several challenges experienced by researchers and adolescents. Some challenges experienced by researchers were organisational issues which included limited resources, gatekeeping and paying adolescents. Some barriers were related to a lack of preparedness among researchers and included a lack of awareness of adolescent involvement, the need for training and guidance, and negative attitudes towards participatory research. There were also barriers around how adolescents can be involved, such as researchers finding it challenging to adapt to new methods, issues with recruitment and retention of adolescents, inclusiveness and accessibility. There were also challenges specific to adolescents, such as adolescents' skills and expertise, training, motivations and study goals. Finally, barriers related to the ethical involvement of adolescents included issues with power dynamics, confidentiality, safety and protection of adolescents. Some of the barriers reported by adolescents included tokenistic involvement, inaccessibility of adolescent involvement, and their competing demands. CONCLUSION: Researchers may find this review useful in understanding and planning for potential challenges of involving adolescents in research. Despite many identified barriers to adolescent engagement, few mitigation strategies were identified to address these barriers. There is a clear need to establish best practices for meaningful adolescent involvement in health research. PUBLIC AND PATIENT INVOLVEMENT IN THE REVIEW: Adolescents were involved at multiple stages of this umbrella review of reviews. They reviewed the protocol, screened 25% of the articles at title and abstract screening stage, screened 10% of full-text articles, and worked on data analysis. They also helped plan and conduct a participatory workshop with an adolescent advisory group to discuss the challenges experienced by adolescents in health research.
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Saúde do Adolescente , Humanos , Adolescente , Participação do PacienteRESUMO
While people's involvement in health research is increasingly the encouraged norm in many countries, the involvement of refugees and migrants in research about their health is rare. Here, we call for a paradigm shift in the field of refugee and migrant health to make participatory health research routine, i.e. normalised. To disrupt 'business as usual', we synthesise evidence about meaningful research partnerships and features of inclusive participatory spaces. We present examples of decolonial, culturally attuned methods that can be used to reimagine and reinvigorate research practice because they encourage critical reflexivity and power-sharing: arts-based research using music and singing, participatory learning and action research, Photovoice and co-design (ideas generation) workshops. We consider the consequences of not making this paradigm shift. We conclude with recommendations for specific structural and policy changes and empirical research questions that are needed to inform the normalisation of participatory health research in this field.
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BACKGROUND: Stigma, lack of trust in authorities, and poor knowledge can prevent health-seeking behaviour, worsen physical and mental health, and undermine efforts to control transmission during disease outbreaks. These factors are particularly salient with diseases such as mpox, for which 96% of cases in the 2022-2023 UK outbreak were identified among gay, bisexual, queer and men who have sex with men (MSM). This study explored stigma and health-seeking behaviour in Liverpool through the lens of the recent mpox outbreak. METHODS: Primary sources of data were interviews with national and regional key informants involved in the mpox response, and participatory workshops with priority populations. Workshop recruitment targeted Grindr users (geosocial dating/hookup app) and at risk MSM; immigrant, black and ethnic minority MSM; and male sex workers in Liverpool. Data were analysed using a deductive framework approach, building on the Health Stigma and Discrimination Framework. RESULTS: Key informant interviews (n = 11) and five workshops (n = 15) were conducted. There were prevalent reports of anticipated and experienced stigma due to mpox public health messaging alongside high demand and uptake of the mpox vaccine and regular attendance at sexual health clinics. Respondents believed the limited impact of stigma on health-seeking behaviour was due to actions by the LGBTQ + community, the third sector, and local sexual health clinics. Key informants from the LGBTQ + community and primary healthcare felt their collective action to tackle mpox was undermined by central public health authorities citing under-resourcing; a reliance on goodwill; poor communication; and tokenistic engagement. Mpox communication was further challenged by a lack of evidence on disease transmission and risk. This challenge was exacerbated by the impact of the COVID-19 pandemic on the scientific community, public perceptions of infectious disease, and trust in public health authorities. CONCLUSIONS: The LGBTQ + community and local sexual health clinics took crucial actions to counter stigma and support health seeking behaviour during the 2022-2023 UK mpox outbreak. Lessons from rights based and inclusive community-led approaches during outbreaks should be heeded in the UK, working towards more meaningful and timely collaboration between affected communities, primary healthcare, and regional and national public health authorities.
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Surtos de Doenças , Promoção da Saúde , Minorias Sexuais e de Gênero , Estigma Social , Confiança , Humanos , Masculino , Promoção da Saúde/métodos , Promoção da Saúde/organização & administração , Surtos de Doenças/prevenção & controle , Reino Unido/epidemiologia , Minorias Sexuais e de Gênero/psicologia , Minorias Sexuais e de Gênero/estatística & dados numéricos , Adulto , Homossexualidade Masculina/psicologia , Homossexualidade Masculina/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , COVID-19/prevenção & controle , COVID-19/epidemiologia , COVID-19/psicologia , Pesquisa QualitativaRESUMO
The National School Health Program in Portugal advocates for healthy lifestyles. However, school health teams mostly focus their activities on educating children, whereas it is the families who are primarily responsible for managing children's lifestyles. Although the programme proposes interactive health education activities, such as meetings with the children's families, few parents participate in these activities. The project Gostar de Mim was created to bridge this gap by promoting healthy family lifestyles in school settings. The project used an evaluating instrument called the 'Parents' Booklet' packed with information. This study assessed the usefulness of the booklet in providing health information and planning family engagement. Based on the PRECEDE-PROCEED framework (PRECEDE: Predisposing, Reinforcing, and Enabling Constructs in Educational/Environmental Diagnosis and Evaluation; PROCEED: Policy, Regulatory, and Organizational Constructs in Educational and Environmental Development), this article focuses on the social and epidemiological assessment phases. We examined the health surveillance status of children aged 6-10 years (epidemiological phase) and description of health behaviours in different lifestyle dimensions (behavioural and environmental phase). The Parents' Booklet was used to identify parents' perspectives on their children's lifestyles. Data analysis of 568 Parents' Booklet (23 schools) use cases showed that the lifestyle priorities, in order, were 'sleep and rest' (95.6 %), 'energy balance' (100 %), 'oral/body healthcare' (95.6 %), 'alcohol, tobacco/other drugs' (73.9 %), 'consumerism' (91.3 %), 'leisure-time occupation' (91.3 %), and 'literacy and satisfaction at school' (86.9 %). Clearly, the Parents' Booklet was useful, as it made it possible to obtain information that allowed for participatory school health diagnosis and can guide community nursing actions that need to be developed in schools. Crucially, this tool can be useful for parents, enabling them to be more aware of their children's lifestyle via self-monitoring as well as increasing their participation in health education.
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Despite an increased recognition of the right of adolescents to be involved in decisions that affect them, young people continue to be under-involved in health research. One of the reasons is a lack of awareness among researchers on the current evidence base around the benefits of involving adolescents. To address this, we conducted an umbrella review to synthesize the evidence on the positive impacts of adolescent involvement in health research. This umbrella review was preregistered with PROSPERO (CRD42021287467). We searched 11 databases, Google Scholar, PROSPERO, reference lists, 10 journals, websites of 472 organizations, and sought input from experts. Ultimately, we included 99 review articles. We found that adolescent involvement has many positive impacts on young people, including increased knowledge and skills; personal development; financial benefits; career and academic growth; enhanced relationships; and valuing their experience. The positive impacts of adolescent involvement on the research itself include increased relevance of the study to adolescents, improved recruitment, development of more adolescent-friendly materials, enhanced data collection and analysis, and more effective dissemination. Researchers also benefited from adolescents' involvement through increased knowledge, skills, and a shift in their attitudes. The evidence supporting the positive impacts of adolescent involvement in research is substantial but limited by a lack of rigorous evaluation, inconsistent reporting, and unclear evaluation methods.
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Pesquisa Biomédica , Humanos , AdolescenteRESUMO
Purpose: When adolescents feel that their opinions are valued and respected, they are more likely to seek and use health services. Our aim was to identify what health information adolescents in Geneva, Switzerland, want and how much they are willing to participate in health promotion, linking it to international recommendations. Method: Data were collected from 970 adolescents (aged 12-15 years), between September and November 2022, using a classroom-based survey. Results: Adolescents expressed their preferences: the study showed that the topics of sleep, self-perception, biology, mental health, and physical activity received the highest interest. Girls were more interested than boys in the issues of sleep, mental health, violence, and social life. Adolescents' increasing interest in sexuality issues as they get older is inversely proportional to their interest in other issues such as pandemics, medical research, and the environment, which they are more interested in during early adolescence. Everyone over two felt it was important to promote health in their social environment. And more than a third of teens are open to participating in such activities. Discussion: Adolescents are open to various health subjects, except for pandemics. Age dependent interest highlights the importance of tailoring intervention programs. Adolescents consider health promotion important and are willing to participate, as recommended by the World Health Organization. By involving them as experts in their adolescence, we have taken an essential step. We strongly recommend continuing involving and trusting adolescents in shaping future interventions.
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BACKGROUND: The role of participatory health research (PHR) is increasingly acknowledged by funding bodies, researchers and civil society globally; however, it continues to be under-represented in the speech and language therapy (SLT) research literature. This collaborative research approach is associated with the increased application of research evidence, and the generation of positive impacts in practice, policy, health systems and society. AIMS: To increase researchers' and other participatory partners' understanding of PHR, and to demonstrate its applicability to research in the SLT field. METHODS & PROCEDURES: This aim is achieved through a discussion on PHR, its principles, benefits and challenges, and the evaluation of its impact. A recently developed evaluation framework to support the implementation of best engagement practices is examined, and recommendations for how this framework can be used to plan and evaluate engagement in participatory stuttering research is presented. MAIN CONTRIBUTION: This paper serves as an important conversation on the value of PHR to SLT research, and presents guidance to support its increased implementation in this research field. CONCLUSIONS & IMPLICATIONS: Conclusions & Implications: PHR remains an under-represented research approach in the SLT literature, despite increasing evidence demonstrating its effectiveness and value. It offers a potential solution to the research-practice gap, and challenges the ongoing research hierarchies by democrating the process of knowledge production. WHAT THIS PAPER ADDS: What is already known on this subject PHR is increasingly attracting the attention of funders, researchers and decision-makers due to a growing body of evidence in support of this collaborative research approach. Despite its potential to bridge the research-practice gap, PHR remains significantly under-represented in the SLT research literature. What this paper adds to the existing knowledge This paper discusses the principles, benefits, challenges and impact evaluation of PHR. A recently developed evaluation framework for supporting the implementation of best engagement practices is examined. A demonstration of how this framework can be used to plan and evaluate engagement in participatory stuttering research is presented. What are the potential or actual clinical implications of this work? Speech and language therapists play a key role in PHR, as co-researchers contributing essential context-based knowledge. It is therefore imperative that they understand the principles and practices of this approach in order to maximize their input in future participatory partnerships.
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Pesquisa Participativa Baseada na Comunidade , Terapia da Linguagem , Fonoterapia , Humanos , Fonoterapia/métodos , Terapia da Linguagem/métodos , Gagueira/terapia , Pesquisa sobre Serviços de SaúdeRESUMO
INTRODUCTION: Advancements in evaluating the impact of participatory health research (PHR) have been made through comprehensive models like the community-based participatory research (CBPR) conceptual model, which provides a useful framework for exploring how context and partnership processes can influence health research design and interventions. However, challenges in operationalising aspects of the model limit our understanding and evaluation of the PHR process. Trust is frequently identified as an important component of the CBPR model, which supports the development of key partnership outcomes, such as partnership synergy. However, trust continues to be limited to a binary view (as present or absent), which is problematic given its inherently dynamic and temporal nature. STUDY AIM: The aim of this qualitative study is to understand the evolution of trust in the national public and patient involvement (PPI) network in Ireland. SETTING AND PARTICIPANTS: Participants from the PPI network (n = 15/21) completed a semistructured interview discussing the evolution of trust by reviewing four social network maps derived from a previous longitudinal study. ANALYSIS: Following Braun and Clarke, we used reflexive thematic analysis, to iteratively develop, analyse and interpret our mediated reflection of the data. RESULTS: Participants described the evolution of trust as a function of three contextual factors: (1) the set-up and organisation of the network, (2) how people work together and (3) reflection on the process and outcomes. Their descriptions across these themes seemed to vary depending on partnership type with National Partners and Site Leads having more opportunities to demonstrate trust (e.g., via leadership roles or more resources), compared to Local. Thus, visibility and the opportunity to be visible, depending on the set-up and organisation of the network and how people work together, seemingly play an important role in the evolution of trust over time. Based on these findings, we provide important questions for reflection across themes that could be considered for future PHR partnerships. DISCUSSION: Given that the opportunity and visibility to build and maintain trust over time may not be equally available to all partners, it is important to find ways to invest in and commit to equitable relationships as the key to the success (i.e., longevity) of partnerships. We reflect on/offer important implications for those engaging in PHR partnerships and those who fund such research. PATIENT OR PUBLIC CONTRIBUTION: A Research Advisory Group comprising four research partners (representing academic, service and community organisations) from the PPI Ignite Network provided input and approval for the research objectives of this study as well as previously published work informing this study. Informal consultation occurred with members of this group to discuss findings from this study, assisting with the way findings are presented and described, to be accessible for diverse audiences. Two Research Advisory Group members were involved in the interpretation of the results, and one is a co-author of this manuscript (Zoe Hughes).
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People in informal urban settlements in Kenya face multiple inequalities, yet researchers investigate issues such as HIV or intimate partner violence (IPV) in isolation, targeting single populations and focusing on individual behaviour, without involving informal settlement dwellers. We formed a study team of researchers (n = 4) and lay investigators (n = 11) from an informal settlement in Nairobi, Kenya to understand the power dynamics in the informal urban settlement that influence vulnerability to IPV and HIV among women and men from key populations in this context. We facilitated participatory workshops with 56 women and 32 men from different marginalised groups and interviewed 10 key informants. We used a participatory data analysis approach. Our findings suggest the IPV and HIV nexus is rooted in the daily struggle for cash and survival in the informal urban settlement where lucrative livelihoods are scarce and a few gatekeepers regulate access to opportunities. Power is gendered and used to exercise control over people and resources. Common coping strategies applied to mitigate against the effects of poverty and powerlessness amplify vulnerabilities to HIV and IPV. These complex power relations create and sustain an environment conducive to IPV and HIV. Prevention interventions thus need to address underlying structural drivers, uphold human rights, create safe environments, and promote participation to maximise and sustain the positive effects of biomedical, behavioural, and empowerment strategies.
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Infecções por HIV , Violência por Parceiro Íntimo , Masculino , Humanos , Feminino , Quênia/epidemiologia , Pobreza , Violência por Parceiro Íntimo/prevenção & controle , Identidade de Gênero , Infecções por HIV/epidemiologia , Infecções por HIV/prevenção & controleRESUMO
BACKGROUND: The development and advancement of treatment and care options is one priority in the field of eating disorders. The inclusion of persons with lived experience with eating disorders into clinical research could enrich and accelerate this endeavor, as they can add different perspectives on the disease and its treatment. Although lived experience perspectives are increasingly part of eating disorder research, they have not been widely or structurally implemented into clinical trials and there is limited information on the practice of participatory research, its framework and consequences. AIMS: The present work outlines the participatory collaboration with a lived experience council in the randomized controlled treatment trial SUSTAIN. MATERIALS & METHODS: The manuscript is a participatory publication co-written by individuals with lived experience with anorexia nervosa and eating disorder researchers. RESULTS: We report on motivations for this approach, our collaboration principles, structures and shared experience of working together in the trial, the potential burdens and benefits related to participation for people with lived experience. DISCUSSION: We outline future directions and perspectives to integrate a participatory framework into clinical eating disorder research. CONCLUSION: The involvement of people with experiential knowledge is complex, but possible in clinical research on ED and bears huge potential for the development of more effective care. PUBLIC SIGNIFICANCE: Incorporating perspectives of people with lived experience into a participatory framework of mental health research bears huge potential on a societal level. This includes more relevant research topics and designs, more tailored and effective interventions, and facilitated implementation, as well as dissemination, higher credibility, destigmatization of mental illness, and patient empowerment. Participatory clinical research, however, needs structural anchorage within science and society.
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AIM: In the context of widening societal diversity, culturally and linguistically diverse patients continue to experience inequities in healthcare access and deficiencies in standards of nursing care. Re-framing culturally responsive care as a complex intervention spanning multiple interacting factors at micro, meso and macro levels is an essential prerequisite for addressing knowledge translation gaps into everyday nursing practice. To this end, this paper proposes and explicates the potential of applying synergistic participatory implementation methodologies for developing effective implementation strategies with impact at individual and wider structural levels. DESIGN: Discussion Paper. DATA SOURCES: A co-design case study is presented as an example of combining normalization process theory and participatory learning and action to investigate and support the implementation of culturally responsive care in general practice nursing. IMPLICATIONS FOR NURSING: Enacting culturally responsive health care is inherently complex in that it is influenced by multiple interacting factors. Viewing culturally responsive care as a complex intervention and incorporating a synergistic participatory implementation science approach offers possibilities for addressing the documented shortcomings in the implementation of culturally responsive nursing care. CONCLUSION: There is a need to move away from conventional approaches to conceptualizing and generating evidence on culturally responsive care. Incorporating participatory implementation methodologies can provide a new lens to investigate and support whole system implementation strategies. IMPACT: The combination of participatory and implementation methodologies is both theoretically and empirically informed. Engaging stakeholders in the co-design and co-production of evidence and solutions to long standing problems has the potential to increase the likelihood of influencing iterative and sustainable implementation and changes to clinical practice and systems. PATIENT OR PUBLIC CONTRIBUTION: This work is part of a wider programme of participatory health research on migrant health, partnering with a non-governmental organization that supports migrants.
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Pesquisa Participativa Baseada na Comunidade , Migrantes , Humanos , Ciência da Implementação , Acessibilidade aos Serviços de Saúde , AprendizagemRESUMO
Recognition that structural factors influence participation decisions and have potential to coerce participation, emerged relatively recently in research ethics literature. Empirical evidence to elucidate the nature of "structural" coercion and influence is needed to optimise respect for autonomy through voluntary informed consent. We present findings from ethnographic data about community co-researchers' experiences designing and implementing demographic and health survey consent procedures in participatory health research in Eswatini. Informed by Bourdieu's sociological theory of multiple types of capital/power, our findings detail structural influences on research participation decisions, highlight the inherently power-laden dynamics of consent interactions, and suggest that to be optimally ethical, research ethics principles and practices should consider and account for structural power dynamics.
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Pesquisa Participativa Baseada na Comunidade , Consentimento Livre e Esclarecido , Humanos , Essuatíni , Ética em Pesquisa , CoerçãoRESUMO
PURPOSE: The purpose of this study was to explore the lived experience of dancing with Parkinson's and Multiple Sclerosis in an inclusive dance group called ReDiscoverMe (RDM). METHODS: Participatory research approaches and interpretative phenomenological analysis were used to make sense of the lived experience captured in interviews and observations. Arthur Frank's conceptual framework on embodied storytelling from his book The Wounded Storyteller was the study's theoretical lens. Themes are both described and represented in images made by an RDM participant. FINDINGS: Dancing in a nonjudgmental environment was described by participants as a way to rediscover themselves while continually adapting to living with chronic illness. We interpreted this experience of rediscovery as an active, recursive process involving three "movements": escaping, expanding, and embracing. Through these movements, participants could rise above the self and illness. CONCLUSIONS: The lived experience of dancing in this group was characterized by transformations of the body, self, and life. Through escaping, expanding, and embracing, participants could more easily embrace the body's contingency, integrate the self and body by becoming dancers, connect with others living with illness, and produce desire through passion. Participants could therefore experience illness as a journey and gain something from the experience.
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Esclerose Múltipla , Doença de Parkinson , Humanos , Livros , Comunicação , EmoçõesRESUMO
What can we learn from the history of Public and Patient Involvement (PPI) in healthcare and research across global jurisdictions? Depending on region and context, the terminology and heritage of involvement in research vary. In this paper, we draw on global traditions to explore dominant themes and key considerations and critiques pertaining to PPI in order to inform a PPI culture shift in Ireland. We then describe the heritage of PPI in Ireland and present the case for combining methodological imperatives with policy drivers to support and encourage meaningful involvement. Specifically, we propose that PPI can be enriched by the theory and processes of participatory health research (PHR); and that implementation requires concurrent capacity building. We conclude with a call for Irish researchers (authors of this paper included) to consider the conceptual complexities and nuances of a participatory approach to build on the policy imperatives driving PPI and to contribute to the international evidence base and research culture. Specifically, we call for Irish health researchers and funders to consider and reflect on: (1) the rich literature of PHR as a resource for enacting meaningful PPI; (2) the roots and origins of varying participatory health research methods; (3) how community/patient groups can lead health research; and (4) co-learning and partnership synergy to create space for both academic and community expertise; and (5) the importance of using standardized reporting tools.
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Participação do Paciente , Políticas , Humanos , Irlanda , PesquisadoresRESUMO
Introduction: Previous studies have identified "trust" as a key mechanism to achieve sustainable partnerships in participatory health research, which themselves can represent social networks. A recent review discussed the potential for social network analysis to investigate the development and maintenance of trust and its effects on partnership functioning in participatory health research partnerships. This review also recommended considering a comprehensive, nuanced and multidimensional approach to conceptualizing, operationalizing and measuring trust in research partnerships. Thus, this study aims to explore empirically the conceptualizing, operationalizing and measuring of trust in a multidimensional manner, approaching each trust dimension as an individual trust network, as well as combined as an overall trust network. Methods: We sampled the whole network, recruiting from a newly established network of 57 individuals that must collaborate to achieve a common goal. These individuals represented academic, service and community organizations of an existing participatory partnership, the Public and Patient Involvement Ignite Network in Ireland. Of the 57 individuals invited to take part in the study, 75% (n = 43) individuals completed the network survey. A survey about trust was designed based on literature in the area and was administered via Qualtrics. The survey included eight network questions: one on collaboration, and seven on specific dimensions of trust. From this, we constructed a network for each trust dimension. We compared several core network measures of each to identify structural differences between the dimensions of trust. To statistically validate them, we compared them to a random and preferential null model. Results: All the networks had a high reciprocity but were decentralized. Key differences were identified across trust dimensions, particularly in terms of integrity and shared values, visions and goals. None of the networks compared well to the null models indicating participants did not randomly or preferentially (based on how much trust they receive for a particular trust dimension) trust other partners. Discussion/Conclusion: This novel empirical social network analysis of trust in a real-world partnership elucidates the nuances and multidimensional nature of trust. This provides support for expanding this research direction to enhance understanding of and interventions for trust in participatory health research.
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Pesquisa Participativa Baseada na Comunidade , Confiança , Pesquisa Participativa Baseada na Comunidade/métodos , Humanos , Rede Social , Inquéritos e QuestionáriosRESUMO
Participatory research engages community stakeholders in the research process, from problem identification and developing the research question, to dissemination of results. There is increasing recognition in the field of health research that community-engaged methods can be used throughout the research process. The volume of guidance for engaging communities and conducting participatory research has grown steadily in the past 40+ years, in many countries and contexts. Further, some institutions now require stakeholder engagement in research as a condition of funding. Interest in collaborating in the research process is also growing among patients and the public. This article provides an overview for selecting participatory research methods based on project and partnerships goals.
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BACKGROUND: The evidence-based interventions of exercise and education have been strongly recommended as part of prominent clinical guidelines for hip and knee osteoarthritis (OA) for more than ten years. Despite the wealth of strong evidence that exists, implementation in practice is sub-optimal. This paper describes the key methodologies used in the co-design, tailoring, and evaluation of the IMPACT project implementation strategies, to confront this problem across multiple levels (micro, meso, macro) in public and private healthcare settings in Ireland. METHODS: Using a type III hybrid implementation-effectiveness design, a participatory, dynamic and iterative process will be used to tailor and evaluate multi-level implementation strategies using the following stages: 1) Co-design the implementation strategies with key stakeholders using best evidence, a theory-driven implementation framework (Consolidated Framework for Implementation Research), local context and expert consensus; 2) Pilot and evaluate the implementation strategies by training physiotherapists to deliver the evidence-based Good Life with osteoArthritis Denmark (GLA:D®) education and exercise programme using the implementation strategies, and conduct a mixed-methods process evaluation; 3) Adapt the implementation strategies based on implementation process evaluation indicators from stage two. The adapted strategies will be used for scale-up and sustainability in subsequent GLA:D® Ireland training programmes that will be rolled out nationally. Evaluation of effectiveness on patient and cost outcomes will continue up to 12 months post-programme delivery, using an online patient registry and pre-post design. DISCUSSION: This implementation science project aims to use participatory health research to address a gap in management of OA across public and private healthcare settings. This research has the potential to change practice and promote a policy of exercise and physical activity referral for chronic musculoskeletal disease that utilises community engagement effectively and enacts change 'together', with involvement of researchers, decision-makers, clinicians and patients.
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Osteoartrite do Quadril , Osteoartrite do Joelho , Fisioterapeutas , Pesquisa Participativa Baseada na Comunidade , Exercício Físico , Humanos , Osteoartrite do Joelho/diagnóstico , Osteoartrite do Joelho/terapiaRESUMO
BACKGROUND: Community-Based Participatory Research (CBPR) is often used to address health inequities due to structural racism. However, much of the existing literature emphasizes relationships and synergy rather than structural components of CBPR. This study introduces and tests new theoretical mechanisms of the CBPR Conceptual Model to address this limitation. METHODS: Three-stage online cross-sectional survey administered from 2016 to 2018 with 165 community-engaged research projects identified through federal databases or training grants. Participants (N = 453) were principal investigators and project team members (both academic and community partners) who provided project-level details and perceived contexts, processes, and outcomes. Data were analyzed through structural equation modeling and fuzzy-set qualitative comparison analysis. RESULTS: Commitment to Collective Empowerment was a key mediating variable between context and intervention activities. Synergy and Community Engagement in Research Actions were mediating variables between context/partnership process and outcomes. Collective Empowerment was most strongly aligned with Synergy, while higher levels of Structural Governance and lower levels of Relationships were most consistent with higher Community Engagement in Research Actions. CONCLUSIONS: The CBPR Conceptual Model identifies key theoretical mechanisms for explaining health equity and health outcomes in community-academic partnerships. The scholarly literature's preoccupation with synergy and relationships overlooks two promising practices-Structural Governance and Collective Empowerment-that interact from contexts through mechanisms to influence outcomes. These results also expand expectations beyond a "one size fits all" for reliably producing positive outcomes.
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Relações Comunidade-Instituição , Equidade em Saúde , Pesquisa Participativa Baseada na Comunidade , Estudos Transversais , Humanos , OrganizaçõesRESUMO
Photovoice is a widely used approach for community participation in health promotion and health promotion research. However, its popularity has a flip-side. Scholars raise concerns that photovoice drifts away from its emancipatory roots, neglecting photovoice's aim to develop critical consciousness together with communities. Our four-year photovoice project aimed to unravel how the health of (un)paid care workers was shaped at the intersection of gender, class and race. This article springs from first, second and third-person inquiry within our research team of (un)paid care workers, academic researchers and a photographer. We observed that critical consciousness emerged from an iterative process between silence, voice and vocabulary. We learned that photovoice scholars need to be sensitive to silence in photovoice projects, as silence can be the starting point for finding voice, but also a result of silencing acts. Social movements and critical theories, such as intersectionality, provide a vocabulary for participants to voice their critical perspectives to change agents and to support collective action. We discuss our experiences using Frickers' concept of 'epistemic justice', arguing that critical consciousness not only requires that communities are acknowledged as reliable knowers, but that they need access to interpretative tropes to voice their personal experiences as structural.