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A scoping review of reporting 'Ethical Research Practices' in research conducted among refugees and war-affected populations in the Arab world.

ABSTRACT: BACKGROUND:Ethical research conduct is a cornerstone of research practice particularly when research participants include vulnerable populations. This study mapped the extent of reporting ethical research practices in studies conducted among refugees and war-affected populations in the Arab World, and assessed variations by time, country of study, and study characteristics. METHODS:An electronic search of eight databases resulted in 5668 unique records published between 2000 and 2013. Scoping review yielded 164 eligible articles for analyses. RESULTS:Ethical research practices, including obtaining institutional approval, access to the community/research site, and informed consent/assent from the research participants, were reported in 48.2, 54.9, and 53.7% of the publications, respectively. Institutional approval was significantly more likely to be reported when the research was biomedical in nature compared to public health and social (91.7% vs. 54.4 and 32.4%), when the study employed quantitative compared to qualitative or mixed methodologies (61.7% vs. 26.8 and 42.9%), and when the journal required a statement on ethical declarations (57.4% vs. 27.1%). Institutional approval was least likely to be reported in papers that were sole-authored (9.5%), when these did not mention a funding source (29.6%), or when published in national journals (0%). Similar results were obtained for access to the community site and for seeking informed consent/assent from study participants. CONCLUSIONS:The responsibility of inadequacies in adherence to ethical research conduct in crisis settings is born by a multitude of stakeholders including funding agencies, institutional research boards, researchers and international relief organizations involved in research, as well as journal editors, all of whom need to play a more proactive role for enhancing the practice of ethical research conduct in conflict settings.

SUBMITTER: Makhoul J

PROVIDER: S-EPMC5952584 | biostudies-literature | 2018 May

REPOSITORIES: biostudies-literature

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A scoping review of reporting 'Ethical Research Practices' in research conducted among refugees and war-affected populations in the Arab world.

Makhoul Jihad J Chehab Rana F RF Shaito Zahraa Z Sibai Abla M AM

BMC medical ethics 20180515 1

<h4>Background</h4>Ethical research conduct is a cornerstone of research practice particularly when research participants include vulnerable populations. This study mapped the extent of reporting ethical research practices in studies conducted among refugees and war-affected populations in the Arab World, and assessed variations by time, country of study, and study characteristics.<h4>Methods</h4>An electronic search of eight databases resulted in 5668 unique records published between 2000 and 2 ...[more]

PMID: 29764456

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Project description:Plain English summary:Integrated knowledge translation is a research approach in which researchers work as partners with the people for whom the research is meant to be of use. A partnered approach can support the use of Indigenous ways of knowing in health research that may then be used in health care. This is important as current health care models do not often support Indigenous values, ways of knowing, and care practices. We describe 1) why it is necessary to co-create knowledge that includes the voices of Indigenous community members, 2) how integrated knowledge translation is a way of doing research that includes many views and 3) how integrated knowledge translation can help those involved in research to agree upon and uphold ethical ways of doing research. Integrated knowledge translation may be used to include Indigenous ways of knowing into mainstream health research and to improve health systems. The use of an integrated knowledge translation approach in research may guide researchers to be research partners with Indigenous people and groups. Integrated knowledge translation may be a way to do research that is respectful and to ensure that Indigenous ways of knowing are included in both health research and health care systems. Abstract:Background Indigenous people are affected by major health issues at much higher rates than for general populations, and Western health care models do not respond or align with Indigenous values, knowledge systems, and care practices. Knowledge translation (KT) describes ways of moving knowledge from theory into health systems' applications, although there are limitations and concerns related to the effectiveness and contributions of Western-informed approaches to research and KT practices that promote health with Indigenous groups. Integrated KT is an approach to research that engages researchers with the people for whom the research is ultimately meant to be of use ("knowledge users") throughout the entire research process. Integrated KT is done in ways that knowledge users may define as useful, relevant, and applicable in practice, and may also be viewed as complementary to Indigenous health research principles. Main In this paper, we raise and discuss questions posed to researchers by Indigenous knowledge-users about perspectives on health research, researchers, and research institutions, and focus on the role and ethical imperative for integrated KT in Indigenous health research. We describe: 1) why it is necessary to co-create knowledge that includes the voices of Indigenous community members within institutional academic spaces such as universities; 2) how integrated KT accommodates Indigenous and Western-informed perspectives in community-research partnerships throughout the research process; and 3) how an integrated KT approach can help those involved in research to define, agree upon and uphold ethical practices. We argue that integrated KT as a collaborative research practice can create opportunities and space within institutional academic settings for different knowledges to coexist and improve health systems. Most importantly, we argue that integrated KT in Indigenous research contexts includes Indigenous KT. Conclusion The use of integrated KT facilitates opportunities to further define and develop understandings about collaborative approaches to research with Indigenous research partners and that may contribute to respectful inclusion of Indigenous KT practices and processes within institutional academic settings. In the pursuit of useful, relevant and applicable knowledge, those within Western research and health systems must examine and expand upon collaborative approaches to KT.

Project description:BackgroundAfter Russian invasion many Ukrainians fled to European countries including Germany. In this context, the German health care system faced challenges delivering dental care to a displaced population. Recently surfaced obstacles as well as different cultural and medical traits need to be considered in order to deliver appropriate medical care. The aim of this study was to evaluate oral health and hygiene of Ukrainian refugees, identify barriers accessing dental health care and explore the relation to their mental health state.MethodsThis cross-sectional study was conducted using a self-assessment questionnaire, distributed via non-probability snowball sampling method among war-affected Ukrainians, who fled to Germany. The online form was distributed via web-based platforms, the printed version was hand-delivered across diverse local venues. Chi-Square Tests, T-Tests and Mann-Whitney-U Tests were performed. Analysis of variance and Spearman correlation coefficient analysis were also conducted.ResultsFrom 819 completed questionnaires, 724 questionnaires were included in the analysis with 78 males (10.8%) and 640 females (88.6%) and a mean age of 37.5 years (SD = 10.5). The majority of participants rated their state of teeth (77%) and gums (81%) as average or better. The main problems, caused by state of their teeth, were: "Have avoided smiling because of teeth" (23.6%) or "Felt embarrassed due to appearance of teeth" (22.2%). The most frequent limiting factors to access dental care were finances (82.6%), language (82.2%) and complicated health care system (74.1%). 45.8% of the participants scored 10 or more in the Patient Health Questionnaire and 37.4% in the Generalized Anxiety Disorder 7-item scale, respectively. These participants were more likely to report pain, poor state of teeth and gums and to fail a dental consultation. Overall, 59.6% participants reported not consulting a dentist, when needed. Failed consultations were associated with a poorer reported state of teeth and gums.ConclusionsUkrainian refugees reported barriers accessing dental health care in Germany. It is important to improve oral health literacy and dental services for displaced people and provide help and guidance in seeking dental care.

Project description:BackgroundThe intent of plain-language resources (PLRs) reporting medical research information is to advance health literacy among the general public and enable them to participate in shared decision-making (SDM). Regulatory mandates coupled with academic and industry initiatives have given rise to an increasing volume of PLRs summarizing medical research information. However, there is significant variability in the quality, format, readability, and dissemination channels for PLRs. In this scoping review, we identify current practices, guidance, and barriers in developing and disseminating PLRs reporting medical research information to the general public including patients and caregivers. We also report on the PLR preferences of these intended audiences.MethodsA literature search of three bibliographic databases (PubMed, EMBASE, Web of Science) and three clinical trial registries (NIH, EMA, ISRCTN registry) was performed. Snowball searches within reference lists of primary articles were added. Articles with PLRs or reporting topics related to PLRs use and development available between January 2017 and June 2023 were identified. Evidence mapping and synthesis were used to make qualitative observations. Identified PLRs were quantitatively assessed, including temporal annual trends, availability by field of medicine, language, and publisher types.ResultsA total of 9116 PLRs were identified, 9041 from the databases and 75 from clinical trial registries. The final analysis included 6590 PLRs from databases and 72 from registries. Reported barriers to PLR development included ambiguity in guidance, lack of incentives, and concerns of researchers writing for the general public. Available guidance recommendations called for greater dissemination, increased readability, and varied content formats. Patients preferred visual PLRs formats (e.g., videos, comics), which were easy to access on the internet and used short jargon-free text. In some instances, older audiences and more educated readers preferred text-only PLRs. Preferences among the general public were mostly similar to those of patients. Psychology, followed by oncology, showed the highest number of PLRs, predominantly from academia-sponsored research. Text-only PLRs were most commonly available, while graphical, digital, or online formats were less available. Preferred dissemination channels included paywall-free journal websites, indexing on PubMed, third-party websites, via email to research participants, and social media.ConclusionsThis scoping review maps current practices, recommendations, and patients' and the general public's preferences for PLR development and dissemination. The results suggest that making PLRs available to a wider audience by improving nomenclature, accessibility, and providing translations may contribute to empowerment and SDM. Minimizing variability among available guidance for PLR development may play an important role in amplifying the value and impact of these resources.

Project description:ObjectivesIn response to the COVID-19 pandemic there have been significant developments in research, its conduct and the supporting ethical framework. While many protocols have been delayed, halted or modified, other research efforts have been accelerated, generating controversy. The goal of this paper is to determine the rates of references surrounding the ethical oversight of research as reported in current COVID-19-related research publications.DesignScoping review.SettingPopulation-based observational or interventional studies from December 2019 to May 2020 with sample size of two or more. Studies were searched through electronic databases including Medline, EMBASE, and Cochrane CENTRAL Register of Controlled Trials.ParticipantsEligibility criteria included participants within published studies who tested positive for COVID-19.Main outcomes and measuresData were extracted and charting methods included taking note of references to ethical frameworks, institutional review board (IRB), ethics committee (EC) or research ethics board (REB) involvement, consent processes, and other variables.Results11 556 articles were screened, with 656 included in the final analysis. References to ethics were present in 530 (80.8%) studies, with 491 (74.8%) involving IRB/ECs/REBs and 126 (19.2%) not referencing ethics. Consent processes were outlined in 201 (30.6%) studies, with 198 (30.2%) reporting that they obtained consent waivers, however, 257 (39.2%) did not mention consent at all. Differences (p<0.001) in ethics-related references were apparent when analysed by continent, publication type, sample size and IF.ConclusionsThe majority of published articles pertaining to COVID-19 research made mention of ethical considerations, however, national and regional variations in research ethics review requirements introduce heterogeneity between studies and raise important questions about the conduct of scientific research during global public emergencies.Trial registration numberOpen Science Framework: https://osfio/z67wb.

Project description:INTRODUCTION:There is evidence that the use of some reporting guidelines, such as the Consolidated Standards for Reporting Trials, is associated with improved completeness of reporting in health research. However, the current levels of adherence to reporting guidelines are suboptimal. Over the last few years, several actions aiming to improve compliance with reporting guidelines have been taken and proposed. We will conduct a scoping review of interventions to improve adherence to reporting guidelines in health research that have been evaluated or suggested, in order to inform future interventions. METHODS AND ANALYSIS:Our review will follow the Joanna Briggs Institute scoping review methods manual. We will search for relevant studies in MEDLINE, EMBASE and Cochrane Library databases. Moreover, we will carry out lateral searches from the reference lists of the included studies, as well as from the lists of articles citing the included ones. One reviewer will screen the full list, which will be randomly split into two halves and independently screened by the other two reviewers. Two reviewers will perform data extraction independently. Discrepancies will be solved through discussion. In addition, this search strategy will be supplemented by a grey literature search. The interventions found will be classified as assessed or suggested, as well as according to different criteria, in relation to their target (journal policies, journal editors, authors, reviewers, funders, ethical boards or others) or the research stage at which they are performed (design, conducting, reporting or peer review). Descriptive statistical analysis will be performed. ETHICS AND DISSEMINATION:A paper summarising the findings from this review will be published in a peer-reviewed journal. This scoping review will contribute to a better understanding and a broader perspective on how the problem of adhering better to reporting guidelines has been tackled so far. This could be a major first step towards developing future strategies to improve compliance with reporting guidelines in health research.

Project description:BackgroundFacilitation is an implementation strategy that supports the uptake of evidence-based practices. Recently, use of virtual facilitation (VF), or the application of facilitation using primarily video-based conferencing technologies, has become more common, especially since the COVID-19 pandemic. Thorough assessment of the literature on VF, however, is lacking. This scoping review aimed to identify and describe conceptual definitions of VF, evaluate the consistency of terminology, and recommend "best" practices for its use as an implementation strategy.MethodsWe conducted a scoping review to identify literature on VF following the PRISMA-ScR guidance. A search of PubMed, Embase, Web of Science, and CINAHL databases was conducted in June 2022 for English language articles published from January 2012 through May 2022 and repeated in May 2023 for articles published from January 2012 through April 2023. Identified articles, including studies and conference abstracts describing VF, were uploaded into Covidence and screened independently by two reviewers. Data extraction was done by two reviewers in Microsoft Excel; additionally, studies were evaluated based on the Proctor et al. (2013) reporting guidelines for specifying details of implementation strategies.ResultsThe search strategy identified 19 articles. After abstract and full-text screening, eight studies described by 10 articles/abstracts were included in analysis. Best practices summarized across studies included (1) stakeholder engagement, (2) understanding the recipient's organization, (3) facilitator training, (4) piloting, (5) evaluating facilitation, (6) use of group facilitation to encourage learning, and (7) integrating novel tools for virtual interaction. Three papers reported all or nearly all components of the Proctor et al. reporting guidelines; justification for use of VF was the most frequently omitted.ConclusionsThis scoping review evaluated available literature on use of VF as a primary implementation strategy and identified significant variability on how VF is reported, including inconsistent terminology, lack of details about how and why it was conducted, and limited adherence to published reporting guidelines. These inconsistencies impact generalizability of these methods by preventing replicability and full understanding of this emerging methodology. More work is needed to develop and evaluate best practices for effective VF to promote uptake of evidence-based interventions.Trial registrationN/A.

Dataset Information

A scoping review of reporting 'Ethical Research Practices' in research conducted among refugees and war-affected populations in the Arab world.

Publications

A scoping review of reporting 'Ethical Research Practices' in research conducted among refugees and war-affected populations in the Arab world.

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