Addressing diversity and complexity in the community engagement literature: The rationale for a realist review.
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ABSTRACT:
SUBMITTER: Richardson EZL
PROVIDER: S-EPMC8474101 | biostudies-literature | 2020
REPOSITORIES: biostudies-literature
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Addressing diversity and complexity in the community engagement literature: The rationale for a realist review.
Richardson Emma Z L EZL Bandewar Sunita V S SVS Boulanger Renaud F RF Mehta Rukshan R Lin Tinya T Vincent Robin R Molyneux Sassy S Goldstone Arisa A Lavery James V JV
Wellcome open research 20200101
In this research note we reflect on our failed attempt to synthesize the community engagement literature through a standard systematic review and explain our rationale for now embarking on a realist synthesis of community engagement in global health research. We believe this paper will be helpful for many who grapple with the lack of clarity about community engagement's core elements and mechanisms. ...[more]
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Project description:BackgroundCommunity engagement is increasingly seen as crucial to achieving high quality, efficient and collaborative care. However, organisations are still searching for the best and most effective ways to engage citizens in the shaping of health and care services. This review highlights the barriers and enablers for engaging communities in the planning, designing, governing, and/or delivering of health and care services on the macro or meso level. It provides policymakers and professionals with evidence-based guiding principles to implement their own effective community engagement (CE) strategies.MethodsA Rapid Realist Review was conducted to investigate how interventions interact with contexts and mechanisms to influence the effectiveness of CE. A local reference panel, consisting of health and care professionals and experts, assisted in the development of the research questions and search strategy. The panel's input helped to refine the review's findings. A systematic search of the peer-reviewed literature was conducted.ResultsEight action-oriented guiding principles were identified: Ensure staff provide supportive and facilitative leadership to citizens based on transparency; foster a safe and trusting environment enabling citizens to provide input; ensure citizens' early involvement; share decision-making and governance control with citizens; acknowledge and address citizens' experiences of power imbalances between citizens and professionals; invest in citizens who feel they lack the skills and confidence to engage; create quick and tangible wins; take into account both citizens' and organisations' motivations.ConclusionsAn especially important thread throughout the CE literature is the influence of power imbalances and organisations' willingness, or not, to address such imbalances. The literature suggests that 'meaningful participation' of citizens can only be achieved if organisational processes are adapted to ensure that they are inclusive, accessible and supportive of citizens.
| S-EPMC5899371 | biostudies-literature
Project description:Introduction: Community engagement is increasingly recognized as a critical aspect of global health. Recent years have seen an expansion of community engagement activities linked to health research, but debates and inconsistencies remain about the aims of different types of engagement, mechanisms underpinning their implementation and impact, and influential contextual factors. Greater commitment to and consistency around community engagement by health research programs, implementers and funders requires a more coherent evidence base. This realist review is designed to improve our understanding of how and why community engagement contributes to intended and unintended outcomes (including research and ethical outcomes) in different contexts. Given the breadth and diversity of the literature on community engagement in health research, the review will initially focus on malaria research in low- and middle-income countries (LMICs) and draw on wider global health literature where needed. Methods and analysis: Community engagement in practice is often a complex set of interventions. We will conduct a realist review - a theory driven approach to evidence synthesis - to provide explanations for how and why community engagement with health research produces the pattern of outcomes observed across different contexts of application. We will consolidate evidence from a range of documents, including qualitative, quantitative and mixed method studies. The review will follow several stages: devising an initial programme theory, searching evidence, selecting appropriate documents, extracting data, synthesizing and refining the programme theory, and reiteration of these steps as needed. Ethics and dissemination: A formal ethics review is not required for this literature review. Findings will be disseminated in a peer reviewed journal, through national and international conferences, and through a set of short briefings tailored for audiences with an interest in community engagement. Outputs and presentations will be informed by and feed into our network of community engagement experts. PROSPERO registration number: CRD42019125687.
| S-EPMC6611131 | biostudies-literature
Project description:Background: Community engagement (CE) is increasingly accepted as a critical aspect of health research, because of its potential to make research more ethical, relevant and well implemented. While CE activities linked to health research have proliferated in Low and Middle Income Countries (LMICs), and are increasingly described in published literature, there is a lack of conceptual clarity around how engagement is understood to 'work', and the aims and purposes of engagement are varied and often not made explicit. Ultimately, the evidence base for engagement remains underdeveloped. Methods: To develop explanations for how and why CE with health research contributes to the pattern of outcomes observed in published literature , we conducted a realist review of CE with malaria research - a theory driven approach to evidence synthesis. Results: We found that community engagement relies on the development of provisional 'working relationships' across differences, primarily of wealth, power and culture. These relationships are rooted in interactions that are experienced as relatively responsive and respectful, and that bring tangible research related benefits. Contextual factors affecting development of working relationships include the facilitating influence of research organisation commitment to and resources for engagement, and constraining factors linked to the prevailing 'dominant health research paradigm context', such as: differences of wealth and power between research centres and local populations and health systems; histories of colonialism and vertical health interventions; and external funding and control of health research. Conclusions: The development of working relationships contributes to greater acceptance and participation in research by local stakeholders, who are particularly interested in research related access to health care and other benefits. At the same time, such relationships may involve an accommodation of some ethically problematic characteristics of the dominant health research paradigm, and thereby reproduce this paradigm rather than challenge it with a different logic of collaborative partnership.
| S-EPMC10444998 | biostudies-literature
Project description:Mental health services continues to be a high priority for healthcare and social service systems. Funding structures within community mental health settings have shown to impact service providers' behaviour and practices. Additionally, stakeholder engagement is suggested as an important mechanism to achieving the intended goals. However, the literature on community mental health funding reform and associated outcomes is inconsistent and there are no consistent best practices for stakeholder engagement in such efforts.ObjectivesThis study sought to understand how stakeholder engagement impacts outcomes when there is a change in public funding within community mental health settings.DesignA realist synthesis approach was used to address the research question to fully understand the role of stakeholder engagement as a mechanism in achieving outcomes (system and service user) in the context of community mental health service reform. An iterative process was used to identify programme theories and context-mechanism-outcome configurations within the literature.ResultsFindings highlight that in the absence of stakeholder engagement, funding changes may lead to negative outcomes. When stakeholders were engaged in some form, funding changes were more often associated with positive outcomes. Stakeholder engagement is multifaceted and requires considerable time and investment to support achieving intended outcomes when funding changes are implemented.ConclusionsTo support successful transformation of community mental health programmes, it is important that stakeholders are meaningfully engaged during funding allocation changes. Stakeholder engagement may entail connecting around a shared purpose, individual participation and meaningful interactions and dialogue.
| S-EPMC9896207 | biostudies-literature
Project description:BackgroundIn recognition of the burden of Perinatal Mental Health problems, NHS England invested £365 million to transform women's access to mental health care, including investment in Community Perinatal Mental Health Services. This study examined how elements of provider care affected women's engagement with these services.MethodsSemi-structured interviews were conducted with 139 women and explored their experiences of care from 10 different Community Perinatal Mental Health Teams; including which service components participants believed made a difference to their initial and continued engagement. Realist analysis was used to create context-mechanism-outcome configurations (CMOCs) across interviews, since not all parts of the configurations were always articulated within singular interviews.ResultsFour key pillars for engagement were identified: perinatal competence, relationship building, accurate reassurance, and reliability. The way perinatal competencies were relayed to women mattered; compassion, understanding and consistency were critical interactional styles. The extent to which these factors affected women's engagement varied by their context and personal characteristics.ConclusionsAs mental health problems increase, disproportionately affecting vulnerable populations, it is critical to continue to ensure support is not only available, but appropriately meets the needs of those individuals. Our findings suggest that key staff behaviours applied at the right time can support women's engagement and potentially contribute to better treatment outcomes.
| S-EPMC11232178 | biostudies-literature
Project description:BackgroundCommunity engagement (CE) is an essential component in a primary health care (PHC) and there have been growing calls for service providers to seek greater CE in the planning, design, delivery and evaluation of PHC services. This scoping review aimed to explore the underlying attributes, contexts and mechanisms in which community engagement initiatives contribute to improved PHC service delivery and the realisation of UHC.MethodsPubMed, PsycINFO, CINAHL, Cochrane Library, EMBASE and Google Scholar were searched from the inception of each database until May 2022 for studies that described the structure, process, and outcomes of CE interventions implemented in PHC settings. We included qualitative and quantitative studies, process evaluations and systematic or scoping reviews. Data were extracted using a predefined extraction sheet, and the quality of reporting of included studies was assessed using the Mixed Methods Appraisal Tool. The Donabedian's model for quality of healthcare was used to categorise attributes of CE into "structure", "process" and "outcome".ResultsThemes related to the structural aspects of CE initiatives included the methodological approaches (i.e., format and composition), levels of CE (i.e., extent, time, and timing of engagement) and the support processes and strategies (i.e., skills and capacity) that are put in place to enable both communities and service providers to undertake successful CE. Process aspects of CE initiatives discussed in the literature included: i) the role of the community in defining priorities and setting objectives for CE, ii) types and dynamics of the broad range of engagement approaches and activities, and iii) presence of an on-going communication and two-way information sharing. Key CE components and contextual factors that affected the impact of CE initiatives included the wider socio-economic context, power dynamics and representation of communities and their voices, and cultural and organisational issues.ConclusionsOur review highlighted the potential role of CE initiatives in improving decision making process and improving overall health outcomes, and identified several organisational, cultural, political, and contextual factors that affect the success of CE initiatives in PHC settings. Awareness of and responding to the contextual factors will increase the chances of successful CE initiatives.
| S-EPMC10156058 | biostudies-literature
Project description:Though engaging communities in research processes has several advantages and implications, research efforts are poorly embedded in and linked with communities, especially in low- and middle-income countries (LMICs). There is also a need for more empirical evidence on effectively engaging communities in research in LMICs, specifically in Sub-Saharan Africa (SSA). Thus, there is an urgent need to synthesize existing evidence on community engagement experiences in research in SSA. Therefore, this review aimed to synthesize the existing community engagement experiences and related barriers to engaging communities in health research focusing on infectious diseases of poverty in SSA. The systematic review was conducted following the JBI methodology for qualitative systematic reviews. The review included both published and unpublished studies. A thematic analysis approach was used for data synthesis. A total of 40 studies were included in the review. Community engagement in the conceptualization of the research project, analysis, dissemination, and interpretation of the result was rare. On top of this, almost all the research projects engaged the community at a lower level of engagement (i.e., informing or consulting the community at some point in the research process), suggesting the importance of integrating communities in the entire research cycle. The lack of shared control over the research by the community was one of the significant challenges mentioned. This review uncovered that community engagement in the research process is minimal. Nevertheless, the review generated valuable evidence that can inform researchers and research stakeholders to promote effective community engagement in the research process addressing infectious diseases of poverty. Despite these, it requires rigorous primary studies to examine the applicability and usefulness of community engagement, including developing valid metrics of engagement, standardizations of reporting community engagements, and views and understandings of communities and stakeholders on the values, expectations, and concepts of community engagement in research.
| S-EPMC11249264 | biostudies-literature
Project description:BackgroundCommunity engagement is increasingly seen as key to improving healthcare systems and to increasing communities' involvement in the shaping of their own communities. This paper describes how 'community engagement' (CE) is understood and being operationalised in the Dutch healthcare system by investigating the CE approaches being implemented in six different regions and by examining engaged citizens' and professionals' experiences of those CE approaches.MethodsFor this realist study, interviews and focus groups were held with citizens (16) and professionals (42) involved in CE approaches in the six regions. Additionally, CE-related activities were observed to supplement interview data.ResultsThis study shows that citizens and professionals defined and experienced CE differently and that they differed in who they felt had ownership of CE. The CE approaches implemented in community-led initiatives and organisationally-led initiatives varied accordingly. Furthermore, both citizens and professionals were searching for meaningful ways for citizens to have more control over healthcare in their own communities.ConclusionCE can be improved by, first of all, developing a shared and overarching vision of what CE should look like, establishing clear roles and remits for organisations and communities, and taking active measures to ensure CE is more inclusive and representative of harder-to-reach groups. At the same time, to help ensure such shared visions do not further entrench power imbalances between citizens and professionals, professionals require training in successful CE approaches.
| S-EPMC7164336 | biostudies-literature
Project description:BackgroundBreast cancer remains a leading cause of cancer morbidity and mortality worldwide. In the United States, Black women face significant disparities in screening mammograms, experience higher rates of breast cancer at advanced stages, and are more likely to die from the disease.AimsThis study aimed to develop and beta-test a virtual health navigation program to enhance breast cancer care within the Black community. We identified barriers to utilizing virtual patient navigators and factors impacting the adoption of virtual navigation for breast cancer information among Black women.MethodsThe vCONET (Virtual Community Oncology Navigation and Engagement) intervention was delivered through the Second Life virtual platform. The informational content was collaboratively developed with community members. Participants engaged in an informational session on risk factors, mammography information, and preventive behaviors. Surveys (n = 18) and focus groups (n = 9) assessed knowledge and insights into perceptions.ResultsFindings revealed a positive impact of the intervention, with participants expressing increased knowledge and willingness to seek further information about breast cancer prevention, and highlighted the engaging nature of the virtual environment, while acknowledging potential technological challenges.ConclusionVirtual health navigation shows promise in addressing breast cancer disparities by promoting awareness among Black women. Future efforts should optimize virtual navigation approaches through collaborative engagement for lasting impact, enhancing breast cancer care and equity in communities of color.
| S-EPMC11456699 | biostudies-literature
Project description:As community engagement (CE) is implemented for sustainable maternal and newborn health (MNH) programming, it is important to determine how these approaches work. Low- and middle-income countries (LMICs) have become a particular focus for MNH CE activities due to their high burden of maternal and neonatal deaths. MNH messaging and communication to engage communities are likely to differ by context, but how these approaches are actually developed and implemented within CE is not well understood. Understanding how communications in CE actually work is vital in the translation of learnings across programmes and to inform future projects. The purpose of this realist review is to describe how, why, to what extent and for whom communications in CE contribute to MNH programming in LMICs. After searching academic databases, grey literature and literature suggested by the expert advisory committee, documents were included if they described the CE communication processes/activities used for MNH programming in an LMIC. Relevant documents were assessed for richness (depth of insight) and rigor (trustworthiness and coherence of data/theories). Data were extracted as context-mechanism-outcome configurations (CMOCs) and synthesized into demi-regularities to contribute to theory refinement. After screening 416 records, 45 CMOCs were extracted from 11 documents. This informed five programme theories explaining that communications in CE for an MNH programme work when: communities are actively involved throughout the programme, the messaging and programme are acceptable, communication sources are trusted, the community has a reciprocal relationship with the programme and the community sees value in the programme. While these findings reflect what is often anecdotally known in CE or acknowledged in communications theory, they have implications for policy, practice and research by highlighting the importance of centring the community's needs and priorities throughout the stages of developing and implementing communications for CE in MNH.
| S-EPMC10566325 | biostudies-literature