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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: One in five people living in Ireland is a migrant. Understanding the distinctive health needs of this diverse population is essential to provide evidence-based, culturally sensitive primary care services. The aim of this review is to systematically examine changes in migrant health research in Ireland and to inform research, policy and practice in the field. METHODS: To update a 2017 scoping review of migrant health research in Ireland, we used Arksey and O'Malley's framework, updates by Colquhoun and Peters and the PRISMA-ScR from the Joanna Briggs Institute to search 10 databases covering May 2017 - March 2023. Findings were analysed using the World Health Organisation Strategy and Action Plan for Refugee and Migrant Health 2016-2023, which identifies 9 priority strategic areas (SA). Findings were compared with the 2017 review. RESULTS: 62 papers were identified. There has been an increase in studies over time from an average of five per year in the previous review to an average of 10 per year in this review. There is growing interest in research about SA1: Collaborative action on migrant health issues and SA2: Advocacy for the right to health of refugees and migrants - evidenced by an increase of 13% in this review. Similarly to 2017, the majority of papers align with three of the nine WHO Strategic Areas; SA3: Addressing the social determinants of health (24%), SA4: Achieving public health preparedness (29%) and SA5: Strengthening health systems (26%). The volume of research on SA6: Communicable diseases (11%) and SA7: Noncommunicable diseases (19%) remains stable however research on SA8: Health screening and assessment (5%) and SA9: Improving health information and communication (2%) remains low. CONCLUSIONS: The increase in the volume of research on migrant health in Ireland is notable. The analysis over time illuminates changes in the focus of research studies. Gaps in research about screening, assessment and health information warrant particular attention. It is also necessary to continue paying attention to areas of recent growth and stagnation for a balanced and comprehensive evidence base. Mobilising resources to continue this increase is needed for evidence-based policy and practice.
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Migrantes , Humanos , Irlanda , Migrantes/estadística & datos numéricos , Refugiados/estadística & datos numéricosRESUMEN
Supporting refugee and migrant health has become a critical focus of healthcare policy. Developing and designing health literacy interventions that meet the needs of refugees and migrants is core to achieving this objective. This literature review sought to identify antecedents and consequences of health literacy among refugees and migrants during the first two years of the COVID-19 pandemic. We systematically searched nine electronic databases and numerous grey literature sources to identify studies published between December 2019 and March 2022. The antecedents (societal and environmental determinants, situational determinants, and personal determinants) and consequences of health literacy among refugees and migrants were mapped to a validated integrated health literacy model. Social and environmental determinants (n = 35) were the most reported antecedent influencing health literacy among refugees and migrants during the first two years of COVID-19. Language (n = 26) and culture (n = 16) were these determinants' most frequently reported aspects. Situational determinants (n = 24) and personal determinants (n = 26) were less frequently identified factors influencing health literacy among refugees and migrants. Literacy (n = 11) and socioeconomic status (n = 8) were the most frequently reported aspects of personal determinants. Media use (n = 9) and family and peer influence (n = 7) were the most cited situational determinants reported. Refugees and migrants with higher levels of health literacy were more likely to use healthcare services, resulting in better health outcomes. The findings of this review reveal personal and situational factors that impacted health literacy among refugees and migrants during COVID-19 that require attention. However, the inadequate adaptation of health literacy interventions for linguistic and cultural diversity was a greater problem. Attention to this well-known aspect of public health preparedness and tailoring health literacy interventions to the needs of refugees and migrants during pandemics and other public health emergencies are paramount.
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Targeted efforts to better understand the barriers and facilitators of stakeholders and healthcare settings to implementation of exercise and education self-management programmes for osteoarthritis (OA) are needed. This study aimed to explore the barriers and facilitators to the implementation of Good Life with osteoArthritis in Denmark (GLA:D), a supervised group guideline-based OA programme, across Irish public and private healthcare settings. Interviews with 10 physiotherapists (PTs; 8 public) and 9 people with hip and knee OA (PwOA; 4 public) were coded by the Consolidated Framework for Implementation Research (CFIR) constructs in a case memo (summary, rationale, quotes). The strong positive/negative implementation determinants were identified collaboratively by rating the valence and strength of CFIR constructs on implementation. Across public and private settings, PTs and PwOA strongly perceived GLA:D Ireland as evidence-based, with easily accessible education and modifiable marketing/training materials that meet participants' needs, improve skills/confidence and address exercise beliefs/expectations. Despite difficulties in scheduling sessions (e.g., work/caring responsibilities), PTs in public and private settings perceived advantages to implementation over current clinical practice (e.g., shortens waiting lists). Only PTs in public settings reported limited availability of internal/external funding, inappropriate space, marketing/training tools, and inadequate staffing. Across public and private settings, PwOA reported adaptability, appropriate space/equipment and coaching/supervision, autonomy, and social support as facilitators. Flexible training and tailored education for stakeholders and healthcare settings on guideline-based OA management may promote implementation. Additional support on organising (e.g., scheduling clinical time), planning (e.g., securing appropriate space, marketing/training tools), and funding (e.g., accessing dedicated internal/external grants) may strengthen implementation across public settings.
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Terapia por Ejercicio , Osteoartritis de la Cadera , Osteoartritis de la Rodilla , Educación del Paciente como Asunto , Investigación Cualitativa , Humanos , Terapia por Ejercicio/métodos , Masculino , Osteoartritis de la Cadera/terapia , Osteoartritis de la Cadera/rehabilitación , Femenino , Osteoartritis de la Rodilla/terapia , Osteoartritis de la Rodilla/rehabilitación , Educación del Paciente como Asunto/métodos , Persona de Mediana Edad , Anciano , Dinamarca , Actitud del Personal de Salud , Fisioterapeutas/educación , Automanejo/educaciónRESUMEN
BACKGROUND: Health policy promotes patient participation in decision making about service organisation. In English general practice this happens through contractually required patient participation groups (PPGs). However, there are problems with the enactment of PPGs that have not been systematically addressed. AIM: To observe how a co-designed theory-informed intervention can increase representational legitimacy and facilitate power sharing to support PPGs to influence decision making about general practice service improvement. DESIGN AND SETTING: Participatory action research to implement the intervention in two general practices in the North of England was undertaken. The intervention combined two different participatory practices: partnership working involving externally facilitated meetings with PPG members and staff; and consultation with the wider patient population using a bespoke discrete choice experiment (DCE). METHOD: To illustrate decision making in PPGs, qualitative data are presented from participant observation notes and photographed visual data generated through participatory methods. The DCE results are summarised to illustrate how wider population priorities contributed to overall decision making. Observational data were thematically analysed using normalisation process theory with support from a multi-stakeholder co-research group. RESULTS: In both general practices, patients influenced decision making during PPG meetings and through the DCE, resulting in bespoke patient-centred action plans for service improvement. Power asymmetries were addressed through participatory methods, clarification of PPG roles in decision making, and addressing representational legitimacy through wider survey consultation. CONCLUSION: Combining participatory practices and facilitated participatory methods enabled patients to influence decision making about general practice service improvement. The policy of mandatory PPGs needs updating to recognise the need to resource participation in a meaningful way.
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Investigación Participativa Basada en la Comunidad , Toma de Decisiones , Medicina General , Participación del Paciente , Mejoramiento de la Calidad , Humanos , Inglaterra , Masculino , Femenino , Investigación sobre Servicios de SaludRESUMEN
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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BACKGROUND: Refugees and migrants face suboptimal involvement in spaces for primary healthcare decision-making. Given the rising numbers of resettled refugees and migrants in primary care settings in the United States, there is an urgent need for patient-centred outcome research in practice-based research networks (PBRNs) with diverse ethnolinguistic communities. This study explored whether researchers, clinicians and patients would achieve consensus on (1) a common set of clinical problems that were applicable across a PBRN and (2) potential clinical interventions to address those problems to inform a patient-centred outcomes research (PCOR) study in a similar research network. METHODS: In this qualitative participatory health research study, patients from diverse ethnolinguistic communities and clinicians from seven practices in a US PBRN discussed preferences for PCOR responsive to patients and the clinicians who serve them in language-discordant settings. Researchers and an advisory panel that included patients and clinicians from each participating practice held regular advisory meetings to monitor progress on project milestones and solve emerging problems. Participants took part in 10 sessions using Participatory Learning in Action and the World Café methods to identify and prioritise their ideas, using questions set for them by the advisory panel. Data were analysed based on principles of qualitative thematic content analysis. RESULTS: Participants identified common barriers in language-discordant healthcare settings, principally patient-clinician communication barriers and suggestions to overcome these barriers. A key finding was an unanticipated consensus about the need for attention to healthcare processes rather than a clinical research priority. Negotiation with research funders enabled further analysis of potential interventions for care processes to improve communication and shared decision-making in consultations and the practice as a whole. CONCLUSION: PCOR studies should examine interventions for improving communication between patients from diverse ethnolinguistic communities and primary care staff if the sorts of harms experienced by patients experiencing language-discordant healthcare are to be reduced or prevented. Flexibility and responsiveness from funders to unanticipated findings are key structural supports for participatory health research in primary care clinical settings with this population and others who experience marginalisation and exclusion. PATIENT OR PUBLIC CONTRIBUTION: Patients and clinicians participated in the study both in the formulation of the study question, data collection, analysis and dissemination of these results; consented to their individual participation; and reviewed early drafts of the manuscript.
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Refugiados , Migrantes , Humanos , Comunicación , Lenguaje , Investigación CualitativaRESUMEN
The 19th World Rural Health Conference, hosted in rural Ireland and the University of Limerick, with over 650 participants coming from 40 countries and an additional 1600 engaging online, has carefully considered how best rural communities can be empowered to improve their own health and the health of those around them. The conference also considered the role of national health systems and all stakeholders, in keeping with the commitments made through the Sustainable Development Goals and the enjoyment of the highest attainable standard of health as one of the fundamental rights of every human being. This conference declaration, the Limerick Declaration on Rural Healthcare, is designed to inform rural communities, academics and policymakers about how to achieve the goal of delivering high quality health care in rural and remote areas most effectively, with a particular focus on the Irish healthcare system. Congruent with current evidence and best international practice, the participants of the conference endorsed a series of recommendations for the creation of high quality, sustainable and cost-effective healthcare delivery for rural communities in Ireland and globally. The recommendations focused on four major themes: rural healthcare needs and delivery, rural workforce, advocacy and policy, and research for rural health care. Equal access to health care is a crucial marker of democracy. Hence, we call on all governments, policymakers, academic institutions and communities globally to commit to providing their rural dwellers with equitable access to health care that is properly resourced and fundamentally patient-centred in its design.
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Servicios de Salud Rural , Salud Rural , Humanos , Atención a la Salud , Población Rural , Recursos HumanosRESUMEN
Migration is a longstanding, growing global phenomenon. As a social determinant of health, migration can lead to health inequities between people on the move and host populations. Thus, it is imperative that there is a coordinated effort to advance migration- and health-related goals. WHO has a specific remit to support evidence-based decision-making in its Member States. As part of that remit, WHO Europe presents this Framework for Refugee and Migrant Health Research in the WHO European Region. It is designed as a starting point for debating and analysing a broad range of options and approaches to help inform a WHO global research agenda on health and migration. This is important because refugee and migrant health research is a complex interdisciplinary field that is expanding in a fast-changing socio-political environment. The Framework is intended for all stakeholders involved: academic, civil society organisations, refugees, migrants, policy-makers, healthcare providers, educators and funders. It is developed by academics in consultation with these stakeholder groups. It reflects on three specific interrelated dynamics in research practice. These are (i) research prioritisation; (ii) study samples and (iii) research design. The Framework offers recommendations to consider for each one of these. It elucidates the value of involving refugees and migrants in research and research agendas and the need to develop an ecosystem that will support and sustain participatory, interdisciplinary, transdisciplinary and inter-sectoral projects.
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Refugiados , Migrantes , Humanos , Ecosistema , Europa (Continente) , Organización Mundial de la SaludRESUMEN
Background: There is a growing awareness of the need to include people's lived experiences in health decision-making. While much progress has been made in this field, exclusionary patterns persist regarding migrant participation in health research. The aim of this scoping review was to examine the available literature around the use of music as an arts-based research (ABR) method in migrant health research in order to extend knowledge of creative methods and tools used for migrant participation in health research. Methods: Our review follows a scoping review methodology. Searches were conducted in 11 electronic databases between June and August, 2020. We identified 14 eligible references published between January 2009 and August 2020. We analysed how music is utilised as an arts-based research method in community-based health and wellbeing contexts primarily with refugees, asylum seekers, undocumented migrants, and members of resettled immigrant communities. Results: The findings show that music's role is most prominent as a tool for recruitment and engagement followed by its use as a tool for dissemination. Music is effective as a means to co-produce and communicate knowledge of lived experiences of migration and related wellbeing issues. Recommendations and conclusions: Our recommendations for further research include the need for increased detail on the musical element in ABR projects; Explicit identification of such research as ABR; Greater recognition of a multi-arts understanding of music in the context of ABR; Harnessing the potential of music in ABR across the research cycle. We conclude that arts-based research using music shows promise for capturing the complexity of migrants' lives and health issues in an ethical way. It warrants further investigation in empirical studies in multiple clinical and community settings to understand its processes and impacts on the evidence base for migrant health.
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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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Participación del Paciente , Políticas , Humanos , Irlanda , InvestigadoresRESUMEN
Background: Normalization Process Theory (NPT) identifies mechanisms that have been demonstrated to play an important role in implementation processes. It is now widely used to inform feasibility, process evaluation, and implementation studies in healthcare and other areas of work. This qualitative synthesis of NPT studies aims to better understand how NPT explains observed and reported implementation processes, and to explore the ways in which its constructs explain the implementability, enacting and sustainment of complex healthcare interventions. Methods: We will systematically search Scopus, PubMed and Web of Science databases and use the Google Scholar search engine for citations of key papers in which NPT was developed. This will identify English language peer-reviewed articles in scientific journals reporting (a) primary qualitative or mixed methods studies; or, (b) qualitative or mixed methods evidence syntheses in which NPT was the primary analytic framework. Studies may be conducted in any healthcare setting, published between June 2006 and 31 December 2021. We will perform a qualitative synthesis of included studies using two parallel methods: (i) directed content analysis based on an already developed coding manual; and (ii) unsupervised textual analysis using Leximancer® topic modelling software. Other: We will disseminate results of the review using peer reviewed publications, conference and seminar presentations, and social media (Facebook and Twitter) channels. The primary source of funding is the National Institute for Health Research ARC North Thames. No human subjects or personal data are involved and no ethical issues are anticipated.
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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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Investigación Participativa Basada en la Comunidad , Confianza , Investigación Participativa Basada en la Comunidad/métodos , Humanos , Red Social , Encuestas y CuestionariosRESUMEN
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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Osteoartritis de la Cadera , Osteoartritis de la Rodilla , Fisioterapeutas , Investigación Participativa Basada en la Comunidad , Ejercicio Físico , Humanos , Osteoartritis de la Rodilla/diagnóstico , Osteoartritis de la Rodilla/terapiaRESUMEN
There is increased emphasis on adopting positive health and aging policy goals for heterogeneous older populations, and recognition of the role that participatory research approaches can play in supporting their implementation. However, questions remain about how to represent the marginalized experiences of some older populations within such processes. With a focus on older Irish ethnic Travelers and older homeless adults as two vulnerable populations in Ireland, this article presents and critically discusses a participatory approach developed to integrate marginalized older adult perspectives on positive health and aging in a multistakeholder research and development process. The qualitative methodology is first detailed, incorporating methods that harness collaboratively derived views and individual narratives (e.g., focus groups; consultation forums; in-depth interviews). Critical reflections on research implementation and specific considerations relevant to these populations are presented (e.g., trust building; one-to-one facilitation), with lessons then drawn for the design of multistakeholder participatory approaches with marginalized older populations.
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Personas con Mala Vivienda , Anciano , Envejecimiento , Investigación Participativa Basada en la Comunidad/métodos , Grupos Focales , Humanos , Confianza , Poblaciones VulnerablesRESUMEN
BACKGROUND: There are many described benefits of community-based participatory research (CBPR), such as increased relevance of research for those who must act on its findings. This has prompted researchers to better understand how CBPR functions to achieve these benefits through building sustainable research partnerships. Several studies have identified "trust" as a key mechanism to achieve sustainable partnerships, which themselves constitute social networks. Although existing literature discusses trust and CBPR, or trust and social networks, preliminary searches reveal that none link all three concepts of trust, CBPR, and social networks. Thus, we present our scoping review to systematically review and synthesize the literature exploring how trust is conceptualised, operationalised, and measured in CBPR and social networks. METHODS: This review follows the guidance and framework of Peters et al. which is underpinned by the widely used framework of Levac and colleagues. Levac and colleagues provided enhancements to the methodological framework of Arksey and O'Malley. We explored several electronic databases including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library, Google Scholar, and PsychINFO. A search strategy was identified and agreed upon by the team in conjunction with a research librarian. Two independent reviewers screened articles by title and abstract, then by full-text based on pre-determined exclusion/inclusion criteria. A third reviewer arbitrated discrepancies regarding inclusions/exclusions. A thematic analysis was then conducted to identify relevant themes and sub-themes. RESULTS: Based on the 26 extracted references, several key themes and sub-themes were identified which highlighted the complexity and multidimensionality of trust as a concept. Our analysis revealed an additional emergent category that highlighted another important dimension of trust-outcomes pertaining to trust. Further, variation within how the studies conceptualised, operationalised, and measured trust was illuminated. Finally, the multidimensionality of trust provided important insight into how trust operates as a context, mechanism, and outcome. CONCLUSIONS: Findings provide support for future research to incorporate trust as a lens to explore the social-relational aspects of partnerships and the scope to develop interventions to support trust in partnerships.
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Investigación Participativa Basada en la Comunidad , Confianza , Atención a la Salud , Humanos , Grupos de Población , InvestigadoresRESUMEN
BACKGROUND: Normalisation Process Theory (NPT) is frequently used to inform qualitative research that aims to explain and evaluate processes that shape late-stage translation of innovations in the organisation and delivery of healthcare. A coding manual for qualitative researchers using NPT will facilitate transparent data analysis processes and will also reduce the cognitive and practical burden on researchers. OBJECTIVES: (a) To simplify the theory for the user. (b) To describe the purposes, methods of development, and potential application of a coding manual that translates normalisation process theory (NPT) into an easily usable framework for qualitative analysis. (c) To present an NPT coding manual that is ready for use. METHOD: Qualitative content analysis of papers and chapters that developed normalisation process theory, selection and structuring of theory constructs, and testing constructs against interview data and published empirical studies using NPT. RESULTS: A coding manual for NPT was developed. It consists of 12 primary NPT constructs and conforms to the Context-Mechanism-Outcome configuration of realist evaluation studies. Contexts are defined as settings in which implementation work is done, in which strategic intentions, adaptive execution, negotiating capability, and reframing organisational logics are enacted. Mechanisms are defined as the work that people do when they participate in implementation processes and include coherence-building, cognitive participation, collective action, and reflexive monitoring. Outcomes are defined as effects that make visible how things change as implementation processes proceed and include intervention mobilisation, normative restructuring, relational restructuring, and sustainment. CONCLUSION: The coding manual is ready to use and performs three important tasks. It consolidates several iterations of theory development, makes the application of NPT simpler for the user, and links NPT constructs to realist evaluation methods. The coding manual forms the core of a translational framework for implementation research and evaluation.
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Atención a la Salud , Atención a la Salud/métodos , Humanos , Investigación CualitativaRESUMEN
BACKGROUND: People with post-stroke aphasia (PWA) are more likely to experience serious mood disorders compared with those without. Emotional regulation may be important for influencing life participation after stroke. Understanding emotional regulation in the context of aphasia is important for promoting personally defined recovery, psychological well-being and life participation. AIMS: To explore how individuals experience and regulate negative emotional responses to aphasia as part of re-engaging with life. METHODS & PROCEDURES: In-depth semi-structured qualitative interviews with 14 PWA were conducted. The focus and design were developed with public and patient involvement contributors. Reflexive thematic analysis was applied. OUTCOMES & RESULTS: Analysis generated three themes, which captured inherent diversity across participants in terms of emotional experiences, responses and regulation strategies: (1) emotional upheaval at all stages of recovery; (2) regulating emotional upheaval; and (3) discerning possibilities for life participation. Emotional regulation occurred both within and without the context of formal support services. CONCLUSIONS & IMPLICATIONS: Individuals may be differently (en)abled in responding positively, with implications for aphasia psychological support and self-management interventions. The findings may inform future interventions to optimize well-being and personally meaningful outcomes for PWA. WHAT THIS PAPER ADDS: What is already known on the subject PWA experience significant psychosocial upheaval and are at risk of mood disorders. Emotional regulation may be important for influencing one's emotional state, social participation and relationships after stroke. There is a need to better understand the ways in which PWA experience and regulate their emotions to develop better support for personally defined recovery. What this paper adds to existing knowledge PWA may experience significant and pervasive mood disorders in the long term after stroke. This may be compounded by worries for their children's well-being. Some, but not all, regulate emotions by drawing on positivity, determination, gratitude or stoicism. Having (supportive) opportunities to experience the impact of aphasia is important for discerning helpful strategies and participation opportunities. What are the potential or actual clinical implications of this work? Confronting altered abilities requires supportive, responsive opportunities sensitive to emotional responses. Opportunities for peer support and/or meaningful emotional support and compassion from family and friends are important therapeutic targets. Therapeutic input should pay attention to any familial and parenting concerns that may be compounding low mood. Although emotional regulation and recovery may occur without formal support, mental health services must be organized in such a way that PWA can access as needed.