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.

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.

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.

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.

Project description:BackgroundPeer support has been suggested as an alternative or complement to professional support for mothers with perinatal mental health difficulties. The aim of this realist review was to synthesise the evidence on perinatal mental health peer support programmes outside mental health services, to understand what is it about community-based perinatal mental health peer support that works, for whom, in what circumstances, in what respects, and why.MethodsApplying realist methodology, an initial theoretical model was tested against evidence from empirical studies. 29 empirical studies were included, covering 22 antenatal and postnatal mental health interventions that offered one-to-one or group peer support, in person or by telephone. Data extraction identified the configurations of contexts (C), mechanisms (M) and outcomes (O) relevant to mothers' use of peer support and to the positive and negative effects of using peer support.Results13 C-M-O configurations explained take-up of peer support. These were based on mothers' perceptions that peer support would offer empathetic understanding and non-judgemental acceptance outside their social circle; their relationships with primary health professionals; their cultural background and perspectives on mental health; their desire for professional support; overcoming practical barriers; the format of the support; and the use of volunteers. A further 13 C-M-O configurations explained positive impact on mothers. These were based on receiving empathetic listening, acceptance, affirmation and normalisation; peers sharing ideas about self-care, coping, and services; peers using therapeutic techniques; the opportunity to give support to others; meaningful social relationships with volunteers and other mothers; and other benefits of attending a group. There were 8 C-M-O configurations explaining negative impact. These were based on lack of validation; self-criticism from downward and upward social comparison; a culture of negativity; peers being judgemental or directive; not feeling heard; peer support as a stressful social relationship; and distress at endings.ConclusionsPeer support works in complex ways that are affected by personal and social contexts. Providers, commissioners and evaluators can use this review to understand and maximise the valuable benefits of peer support, to minimise potential risks, and to devise ways of reaching mothers who do not currently engage with it.

Project description:ObjectivesTo understand how and why effective multi-chronic disease management interventions influence health outcomes in older adults 65 years of age or older.DesignA realist review.Data sourcesElectronic databases including Medline and Embase (inception to December 2017); and the grey literature.Eligibility criteria for selecting studiesWe considered any studies (ie, experimental quasi-experimental, observational, qualitative and mixed-methods studies) as long as they provided data to explain our programme theories and effectiveness review (published elsewhere) findings. The population of interest was older adults (age ≥65 years) with two or more chronic conditions.AnalysisWe used the Realist And MEta-narrative Evidence Syntheses: Evolving Standards (RAMESES) quality and publication criteria for our synthesis aimed at refining our programme theories such that they contained multiple context-mechanism-outcome configurations describing the ways different mechanisms fire to generate outcomes. We created a 3-step synthesis process grounded in meta-ethnography to separate units of data from articles, and to derive explanatory statements across them.Results106 articles contributed to the analysis. We refined our programme theories to explain multimorbidity management in older adults: (1) care coordination interventions with the best potential for impact are team-based strategies, disease management programmes and case management; (2) optimised disease prioritisation involves ensuring that clinician work with patients to identify what symptoms are problematic and why, and to explore options that are acceptable to both clinicians and patients and (3) optimised patient self-management is dependent on patients' capacity for selfcare and to what extent, and establishing what patients need to enable selfcare.ConclusionsTo optimise care, both clinical management and patient self-management need to be considered from multiple perspectives (patient, provider and system). To mitigate the complexities of multimorbidity management, patients focus on reducing symptoms and preserving quality of life while providers focus on the condition that most threaten morbidity and mortality.Prospero registration numberCRD42014014489.

Project description:IntroductionDespite the widely recognized ethical and practical benefits of community engagement in HIV research, epistemic injustice persists within the field. Namely, the knowledge held by communities disproportionately affected by HIV is systematically afforded less credibility than that of more privileged academic researchers. In order to illustrate what this looks like in practice, we synthesized the extent of reporting on community engagement within recent high-impact HIV intervention research papers. However, we also posit that the HIV research sector has the potential to devise and showcase world-leading examples of equitable research-community partnerships and suggest actionable key steps to achieving this goal.DiscussionIn the absence of reporting requirements within the publishing process, it is difficult to infer whether and how the community have been consulted in the design, implementation, analysis and/or interpretation of findings. As an illustrative exercise, we offer a rapid synthesis of the extent of reporting on community engagement in HIV research from 2017 to 2019, which highlighted sporadic and very low rates of reporting of community engagement in recent high-impact HIV intervention studies. Of note is that none of the included studies reported on community engagement through all stages of the research process. There were also discrepancies in how community involvement was reported. We provide three actionable recommendations to enhance reporting on community engagement in HIV research: (1) community-led organizations, researchers and scientific journals should band together to develop, publish and require adherence to standardized guidelines for reporting on community involvement in HIV research; (2) research funders should (continue to) require details about how relevant communities have been engaged prior to the submission of funding requests; and (3) researchers should take proactive measures to describe their engagement with community organizations in a clear and transparent manner.ConclusionsThere is a clear and urgent need for guidelines that facilitate transparent and consistent reporting on community engagement in HIV intervention research. Without standardized reporting requirements and accountability mechanisms within the research sector, the extent of meaningful community engagement cannot be established and may remain a catchphrase rather than reality.

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Addressing diversity and complexity in the community engagement literature: The rationale for a realist review [version 2; peer review: 2 approved]

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