IntroductionStudies have demonstrated the existence of significant variation in test-ordering patterns in both primary and secondary care, for a wide variety of tests and across many health systems. Inconsistent practice could be explained by differing degrees of underuse and overuse of tests for diagnosis or monitoring. Underuse of appropriate tests may result in delayed or missed diagnoses; overuse may be an early step that can trigger a cascade of unnecessary intervention, as well as being a source of harm in itself.Methods and analysisThis realist review will seek to improve our understanding of how and why variation in laboratory test ordering comes about. A realist review is a theory-driven systematic review informed by a realist philosophy of science, seeking to produce useful theory that explains observed outcomes, in terms of relationships between important contexts and generative mechanisms.An initial explanatory theory will be developed in consultation with a stakeholder group and this ‘programme theory’ will be tested and refined against available secondary evidence, gathered via an iterative and purposive search process. This data will be analysed and synthesised according to realist principles, to produce a refined ‘programme theory’, explaining the contexts in which primary care doctors fail to order ‘necessary’ tests and/or order ‘unnecessary’ tests, and the mechanisms underlying these decisions.Ethics and disseminationEthical approval is not required for this review. A complete and transparent report will be produced in line with the RAMESES standards. The theory developed will be used to inform recommendations for the development of interventions designed to minimise ‘inappropriate’ testing. Our dissemination strategy will be informed by our stakeholders. A variety of outputs will be tailored to ensure relevance to policy-makers, primary care and pathology practitioners, and patients.Prospero registration numberCRD42018091986
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
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.
This scoping review was undertaken to provide an overview of peer-reviewed empirical evidence concerning the undertaking of Life Story Work (LSW) with children and young people with care experience (CYPCE). Our search identified 1,336 potentially relevant publications. Of these, 24 empirical studies met our inclusion criteria and examined a wide range of practices in different countries. Using a thematic approach, key findings and characteristics related to current conceptualizations of LSW are explored and knowledge gaps identified. Our review shows that predominantly small-scale qualitative studies have been undertaken. These studies typically reported participants’ experiences and perspectives on pre-existing LSW practices (17 articles), or evaluations of innovative practices (7 articles). However, both lacked efficacy data. We identified numerous LSW practices that were consistently identified as providing “high-quality” experiences: young person-led approaches; consistent support to access and process personal information, including chronological facts, reasons for care entry and beyond; the use of artifacts; and assistance/training for carers supporting LSW. The included studies also identified practices that undermined LSW: rushed, incomplete accounts, using insensitive language that failed to include different voices from a young person’s past. The discussion appraises the findings through a critical lens and concludes that LSW is a clear priority for all and represents an intervention that has potential to help the unaddressed mental health needs of CYPCE. Unfortunately, without better evidence on how this intervention works best, for whom, over what period, and at what cost, practice cannot move forward. This paper challenges all stakeholders to realize this potential.
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
IntroductionHeart failure affects over 26 million people worldwide with prevalence expected to grow due to an ageing global population. Palliative care can address the holistic needs of patients with heart failure, and integrated palliative care in heart failure management has been indicated to improve outcomes for patients. Despite known benefits for integrated palliative care in heart failure management, implementation is poor across the majority of global health services. Recent systematic reviews have identified the benefits of integrating palliative care into heart failure management and highlighted barriers to implementation. However, there was heterogeneity in terms of countries, healthcare settings, delivery by differing staff across multidisciplinary teams, modes of delivery and different intervention components.Methods and analysisThe aim of this study is to identify how integrated palliative care and heart failure interventions produce desired outcomes, in which contexts, and for which patients. We will undertake a realist synthesis to identify this, using Pawson’s five iterative steps. We will recruit an international stakeholder group comprised of healthcare providers and patients with heart failure to advise and provide feedback throughout the review. Our initial realist programme theory sets out the necessary steps needed to accomplish the final intended outcome(s) from the implementation of integrated palliative care and heart failure. This initial programme theory will be shaped through an iterative process of testing and refinement.Ethics and disseminationEthical approval is not required for this study. With our stakeholder group, we will coproduce a user guide that outlines practical advice to optimise, tailor and implement interventions designed to integrate palliative care and heart failure, taking into consideration local context, alongside user-friendly summaries of the synthesis findings using short animations to convey complex findings. We will draw on the expertise within the stakeholder group to identify key stakeholders for disseminating to relevant audiences, ensuring outputs are tailored for their respective needs.PROSPERO registration numberCRD42021240185.
Research in the quality and safety field often necessitates an approach that supports the development of an in-depth understanding of how a complex phenomenon occurs, or how an intervention works. Realist review is an increasingly popular form of evidence synthesis that provides a theory-driven, interpretive approach to secondary research. Realist reviews offer quality and safety researchers the opportunity to draw on diverse types of evidence to develop explanatory theory about how, when and for whom interventions ‘work’ or outcomes occur. The approach is flexible, iterative and practical, typically drawing on the experience of policymakers, practitioners and patients throughout the review. With the increasing use of realist reviews, some common misconceptions about the approach have become evident in the literature. This paper introduces what is involved when planning and conducting a realist review, and where the approach can offer most value, as well as outlining common challenges that researchers may face when adopting the approach, and recommended solutions. Our aim is to support researchers who are considering conducting a realist review to understand the key principles and concepts involved, and how they can go about producing high-quality work.
IntroductionSevere mental illness (SMI) is associated with significant morbidity and mortality. People living with SMI often receive complex medication regimens. Optimising these regimens can be challenging. Non-adherence is common and addressing it requires a collaborative approach to decision making. MEDIATE uses a realist approach with extensive engagement with experts-by-experience to make sense of the complexities and identify potential solutions.Realist research is used to unpack and explain complexity using programme theory/theories that contain causal explanations of outcomes, expressed as context–mechanism–outcome–configurations. The programme theory/theories will enable MEDIATE to address its aim of understanding what works, for whom, in what circumstances, to optimise medication use with people living with SMI.Method and analysisMEDIATE will be conducted over six stages. In stage 1, we will collaborate with our service user/family carer lived experience group (LEG) and practitioner stakeholder group (SG), to determine the focus. In stage 2, we will develop initial programme theories for what needs to be done, by whom, how and why, and in what contexts to optimise medication use. In stage 3, we will develop and run searches to identify secondary data to refine our initial programme theories.Stage 4 involves selection and appraisal: documents will be screened by title, abstract/keywords and full text against inclusion and exclusion criteria. In stage 5, relevant data will extracted, recorded and coded. Data will be analysed using a realist logic with input from the LEG and SG. Finally, in stage 6, refined programme theories will be developed, identifying causal explanations for key outcomes and the strategies required to change contexts to trigger the key mechanisms that produce these outcomes.Ethics and disseminationPrimary data will not be collected, and therefore, ethical approval is not required. MEDIATE will be disseminated via publications, conferences and form the basis for future grant applications.PROSPERO registration numberCRD42021280980.
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