A realist review of community engagement with health research.
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ABSTRACT:
SUBMITTER: Adhikari B
PROVIDER: S-EPMC6611131 | biostudies-literature |
REPOSITORIES: biostudies-literature
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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: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:BackgroundPatient and public involvement in diabetes research is an international requirement, but little is known about the relationship between the process of involvement and health outcomes.ObjectiveThis realist review identifies who benefits from different types of involvement across different contexts and circumstances. Search strategies Medline, CINAHL and EMBASE were searched to identify interventions using targeted, embedded or collaborative involvement to reduce risk and promote self-management of diabetes. People at risk/with diabetes, providers and community organizations with an interest in addressing diabetes were included. There were no limitations on date, language or study type.Data extraction and synthesisData were extracted from 29 projects using elements from involvement frameworks. A conceptual analysis of involvement types was used to complete the synthesis.Main resultsProjects used targeted (4), embedded (8) and collaborative (17) involvement. Productive interaction facilitated over a sufficient period of time enabled people to set priorities for research. Partnerships that committed to collaboration increased awareness of diabetes risk and mobilized people to co-design and co-deliver diabetes interventions. Cultural adaptation increased relevance and acceptance of the intervention because they trusted local delivery approaches. Local implementation produced high levels of recruitment and retention, which project teams associated with achieving diabetes health outcomes.Discussion and conclusionsAchieving understanding of community context, developing trusting relationships across sectors and developing productive partnerships were prerequisites for designing research that was feasible and locally relevant. The proportion of diabetes studies incorporating these elements is surprisingly low. Barriers to resourcing partnerships need to be systematically addressed.
| S-EPMC6803418 | biostudies-literature
Project description:Background:High quality public engagement and involvement (PEI) in data-intensive health research is seen as one way of ensuring that social legitimacy, i.e. a social license, is conferred through public acceptance of the need for research use of their data. This is a complex research area, and portfolios of involvement have been suggested, but not yet evaluated, to support the role of public contributors. The study aim was to evaluate if and how membership of a data-intensive research public forum can act as a mechanism for enhancing members' personal development. Our objective was to understand the circumstances and mechanisms that help to explain how, why and for whom involvement with a public forum enhanced those members' personal development. Method:Qualitative data were collected from 15 current and previous members, via semi-structured interviews, notes from meetings, and consultations with and feedback from members. Data were critically compared, contrasted and reviewed until no new themes could be discerned and then condensed into context-mechanism-outcome (CMO) configurations. Realist evaluation was used to generate a theoretical and empirical appreciation of the contextual circumstances and mechanisms which help to explain the extent to which involvement with a public forum would enhance members' personal development and, if so, how, why, and for whom. Results:Three CMO configurations were identified. All of them showed that using the portfolio facilitated growth in forum members' personal development, but only where the members valued using the portfolio. This was particularly so for female members. Members valued the portfolio in one or more of three ways: as a tool to record and evidence activities, to facilitate reflective practice or as a guiding framework. Conclusions:Data analysis and consideration of the three CMO configurations suggests a refined middle range theory that 'The use of a portfolio as a framework for learning in a public forum will facilitate members' personal development if they value its use as a framework for learning'. Further work is needed to confirm these findings both elsewhere in data-intensive health research and in other complex research areas using public forums for PEI. Plain English summary:Public engagement and involvement in health research is now well established and makes a valuable contribution to the research process. However, little is known about its impact on participants. This article investigates how involvement in a data-intensive health research public forum impacts on public forum members, rather than the research process. Personal involvement portfolios were used to support their involvement work and help evaluate if and how involvement in research activities enhanced members' personal development. Taking a realist evaluation approach, 'Context-Mechanism-Outcome' configurations were used to explore how membership of a public forum might enhance public forum members' personal development. The Context-Mechanism-Outcome configuration refers to an exploration of what influences the extent to which an intervention is successful or unsuccessful in producing positive outcomes and tries to identify the reasons why it is successful for some and unsuccessful for others. However, evidence from this realist evaluation recommends that engagement and involvement should always be underpinned by procedures which ensure that public contributors receive ongoing and tailored guidance and support throughout the process.
| S-EPMC7325137 | biostudies-literature
Project description:ObjectiveCommunity engagement practices in Indigenous health research are promoted as a means of decolonising research, but there is no comprehensive synthesis of approaches in the literature. Our aim was to assemble and qualitatively synthesise a comprehensive list of actionable recommendations to enhance community engagement practices with Indigenous peoples in Canada, the USA, Australia and New Zealand.DesignIntegrative review of the literature in medical (Medline, Cumulative Index to Nursing and Allied Health Literature and Embase) and Google and WHO databases (search cut-off date 21 July 2020).Article selectionStudies that contained details regarding Indigenous community engagement frameworks, principles or practices in the field of health were included, with exclusion of non-English publications. Two reviewers independently screened the articles in duplicate and reviewed full-text articles.AnalysisRecommendations for community engagement approaches were extracted and thematically synthesised through content analysis.ResultsA total of 63 studies were included in the review, with 1345 individual recommendations extracted. These were synthesised into a list of 37 recommendations for community engagement approaches in Indigenous health research, categorised by stage of research. In addition, activities applicable to all phases of research were identified: partnership and trust building and active reflection.ConclusionsWe provide a comprehensive list of recommendations for Indigenous community engagement approaches in health research. A limitation of this review is that it may not address all aspects applicable to specific Indigenous community settings and contexts. We encourage anyone who does research with Indigenous communities to reflect on their practices, encouraging changes in research processes that are strengths based.
| S-EPMC7703446 | biostudies-literature
Project description:This study aimed to contextualize the extent, nature, and quality of community engagement in health services research on eliminating lymphatic filariasis in low-and middle-income countries of Southeast Asia and Pacific Region. We performed a systematic review, and the results were reported according to the PRISMA-S checklist. Relevant studies were searched in health-related electronic databases, and selected according to the inclusion criteria. Sixteen studies with various study designs were identified. The majority (68%) were conducted in India. Lay people, community leaders, and volunteers were the most common groups of community members (12/16,75%). Overall, the majority (13/16, 81%) were at the ‘moderate level’ of engagement in research context mainly by ‘collaboration’ in ‘developing methodology’ ‘collaboration’ in data collection and ‘collaboration’ for ‘dissemination of findings. The common barriers to the community engagement were lack of involvement of participating bodies and technology-related issues. In conclusion, the insufficient description of the community engagement process in the studies limits a deeper understanding and analysis of the issue. Future well-designed prospective studies with attention to the description of mechanisms of engagement, facilitating the whole process and reporting the community level outcome are recommended.
| S-EPMC10021320 | 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
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.
| S-EPMC10410814 | biostudies-literature
Project description: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.
| S-EPMC8474101 | biostudies-literature
Project description:The research question was what studies are available that have assessed community engagement in the health services research on soil-transmitted helminths? We aimed to synthesise evidence on how communities were engaged in health services research on soil-transmitted helminths in low-and-middle-income countries of the Asia-Pacific Region. We focused on this region because soil-transmitted helminths are endemic, and their burden is significant in this region. This review was conducted according to the Preferred Reporting Items for Systematic Review and Meta-analysis (PRISMA) checklist. Relevant studies were searched in health-related databases including PubMed, Ovid, and Google Scholar. We selected studies based on the selection criteria set for this review. We collected textual information about the type of health services research, the degree of community engagement, the research phases involved, and the barriers/enablers affecting community engagement in research since they are pertinent to our review question and objective. Ten studies from seven countries in the Asia Pacific region were identified for this review. Albeit with variation in the extent of their involvement, various forms of communities/groups within communities were included such as Aboriginal communities, local communities, school children and their parents, school teachers and headmasters of schools, heads of villages, religious leaders, and so on. Overall, community engagement in health services research focused on of soil-transmitted helminths was limited. Six studies (60%) had collaboration at ‘developing methodology’, mainly through an explanation of the objectives of the study or study process to be conducted. Seven studies (70%) revealed community participation in soil-transmitted helminths at the “data collection” stage. Only one study (10%) documented that a community leader was involved as a co-author, reflecting an involvement in ‘report writing’ and further ‘dissemination’. Findings suggest that there were various forms of community engagement in various aspects of the health services research context. Overall, there was moderate level of participation, but there was insufficient information on the partnership between various stakeholders, which prevented in-depth analysis of the engagement. Future health services research on soil-transmitted helminth interventions needs to be carefully planned, well designed, grounded in principles of community engagement, and designed methodologically to allow in-depth participation by communities in all stages of the research.
| S-EPMC10032488 | biostudies-literature