Banner, Davina; Grant, Lyle G
The need for quality nursing research to promote evidence-based practice and optimize patient care is well recognized. This is particularly pertinent in cardiovascular nursing, where cardiovascular disease continues to be the leading cause of morbidity and mortality worldwide (World Health Organization, 2007). Across the spectrum of academic, clinical, and health care administration nursing roles, research remains fundamental to bridging theory, practice, and education (LoBiondo-Wood, Haber, Cameron, & Singh, 2009). Despite recognition of the importance of nursing research, the gap between research and practice continues to be an ongoing issue (Funk, Tornquist, & Champagne, 1995; Pettengill, Gillies, & Clark, 1994; Rizzuto, Bostrom, Suterm, & Chenitz, 1994; Rolfe, 1998). Nurses are appropriately situated to contribute to research that improves clinical outcomes and health service delivery. However, the majority of nurses in clinical practice do not have a significant research component structured into their nursing role. In this research column, the authors outline the importance of nurses being engaged in research and present some different levels of involvement that nurses may assume. A continuum of nursing research involvement includes asking researchable questions, being a savvy consumer of research evidence, finding your own level of research involvement, and aspiring to lead.
Shah, Vikas; Shah, Sachit; Barnacle, Alex; McHugh, Kieran [Great Ormond Street Hospital for Children, Department of Radiology, London (United Kingdom); Sebire, Neil J. [Great Ormond Street Hospital for Children, Department of Histopathology, London (United Kingdom); Brock, Penelope [Great Ormond Street Hospital for Children, Department of Oncology, London (United Kingdom); Harper, John I. [Great Ormond Street Hospital for Children, Department of Dermatology, London (United Kingdom)
Multifocal lymphangiomatosis is a rare systemic disorder affecting children. Due to its rarity and wide spectrum of clinical, histological and imaging features, establishing the diagnosis of multifocal lymphangiomatosis can be challenging. The purpose of this study was to describe a new imaging sign in this disorder: paraspinal soft tissue and signal abnormality at MRI. We retrospectively reviewed the imaging, clinical and histopathological findings in a cohort of eight children with thoracic involvement from this condition. Evidence of paraspinal chest disease was identified at MRI and CT in all eight of these children. The changes comprise heterogeneous intermediate-to-high signal parallel to the thoracic vertebrae on T2-weighted sequences at MRI, with abnormal paraspinal soft tissue at CT and plain radiography. Multifocal lymphangiomatosis is a rare disorder with a broad range of clinicopathological and imaging features. MRI allows complete evaluation of disease extent without the use of ionising radiation and has allowed us to describe a previously unreported imaging sign in this disorder, namely, heterogeneous hyperintense signal in abnormal paraspinal tissue on T2-weighted images. (orig.)
Noble, Mary Anne
Describes an approach to clinical research used by the author in teaching graduate nursing students, involving replication and expansion of a primary study of hospital intensive care units. This approach provided valuable experience as well as validated data about clinical practice. Discusses advantages and disadvantages in the approach. (MF)
M. van der Werf (Marloes); S.G. Heumann (Silke); E.M.H. Mitchell
textabstractWhile communities at risk have been both drivers and partners in HIV research, their important role in TB research is yet to be fully realized. Involvement of communities in tuberculosis care and prevention is currently on the international agenda. This creates opportunities and
Research involving prisoners repeatedly went astray during the last century, culminating in the cruel medical experiments inside the Nazi concentration camps that gave rise to the Nuremberg Code. However, prisoners continued to become victims of scientific exploitation by the rapidly evolving biomedical research industry. The common roots of these abuses were the flawed philosophy that the needs of the society outweigh the needs of the individual and the researchers' view that prisoners are cheap, easy to motivate and stable research subjects. Prisoners are vulnerable to exploitation and abuse by research because their freedom for consent can easily be undermined, and because of learning disabilities, illiteracy and language barriers prevailing within prisoner populations. Therefore, penal laws of some countries supported by a number of internationally agreed documents prohibit research involving prisoners completely. However, prisoners must also be regarded as vulnerable to the specific health problems in prisons, e.g. transmissible diseases, mental disorders and suicide - problems that need to be addressed by research involving prisoners. Additionally, the participation of prisoner patients in research they directly can benefit from should be provided. Hence, it must be a common objective to find the right balance between protection from exploitation and access to research beneficial to prisoners.
We investigated the effects of previous cultivation on regeneration potential under miombo woodlands in a resettlement area, a spatial product of Zimbabwe's land reforms. We predicted that cultivation would affect population structure, regeneration, recruitment and potential grazing capacity of rangelands. Plant attributes ...
Neupane, Dinesh; van Teijlingen, E; Khanal, V
Many academics from Nepal do not involve in research activities. There are several factors hindering the involvement such as inadequate human resources and lack of financial resources. Despite limited human and financial resources, we believe it is still possible to attract many Nepali academics...... in health research. This paper purposes some ideas to increase involvement of Nepali academics in health research....
Patall, Erika A.; Cooper, Harris; Robinson, Jorgianne Civey
New emphasis is being placed on the importance of parent involvement in children's education. In a synthesis of research on the effects of parent involvement in homework, a meta-analysis of 14 studies that manipulated parent training for homework involvement reveals that training parents to be involved in their child's homework results in (a)…
Vaughn, Cecily P; Baker, Christine L; Samowitz, Wade S; Swensen, Jeffrey J
Lynch syndrome is characterized by mutations in one of four mismatch repair genes, MLH1, MSH2, MSH6, or PMS2. Clinical mutation analysis of these genes includes sequencing of exonic regions and deletion/duplication analysis. However, detection of deletions and duplications in PMS2 has previously been confined to Exons 1-11 due to gene conversion between PMS2 and the pseudogene PMS2CL in the remaining 3' exons (Exons 12-15). We have recently described an MLPA-based method that permits detection of deletions of PMS2 Exons 12-15; however, the frequency of such deletions has not yet been determined. To address this question, we tested for 3' deletions in 58 samples that were reported to be negative for PMS2 mutations using previously available methods. All samples were from individuals whose tumors exhibited loss of PMS2 immunohistochemical staining without concomitant loss of MLH1 immunostaining. We identified seven samples in this cohort with deletions in the 3' region of PMS2, including three previously reported samples with deletions of Exons 13-15 (two samples) and Exons 14-15. Also detected were deletions of Exons 12-15, Exon 13, and Exon 14 (two samples). Breakpoint analysis of the intragenic deletions suggests they occurred through Alu-mediated recombination. Our results indicate that ∼12% of samples suspected of harboring a PMS2 mutation based on immunohistochemical staining, for which mutations have not yet been identified, would benefit from testing using the new methodology. Copyright © 2012 Wiley Periodicals, Inc.
Full Text Available microRNA expression signatures can differentiate normal and breast cancer tissues and can define specific clinico-pathological phenotypes in breast tumors. In order to further evaluate the microRNA expression profile in breast cancer, we analyzed the expression of 667 microRNAs in 29 tumors and 21 adjacent normal tissues using TaqMan Low-density arrays. 130 miRNAs showed significant differential expression (adjusted P value = 0.05, Fold Change = 2 in breast tumors compared to the normal adjacent tissue. Importantly, the role of 43 of these microRNAs has not been previously reported in breast cancer, including several evolutionary conserved microRNA*, showing similar expression rates to that of their corresponding leading strand. The expression of 14 microRNAs was replicated in an independent set of 55 tumors. Bioinformatic analysis of mRNA targets of the altered miRNAs, identified oncogenes like ERBB2, YY1, several MAP kinases, and known tumor-suppressors like FOXA1 and SMAD4. Pathway analysis identified that some biological process which are important in breast carcinogenesis are affected by the altered microRNA expression, including signaling through MAP kinases and TP53 pathways, as well as biological processes like cell death and communication, focal adhesion and ERBB2-ERBB3 signaling. Our data identified the altered expression of several microRNAs whose aberrant expression might have an important impact on cancer-related cellular pathways and whose role in breast cancer has not been previously described.
The purpose of this article is to describe the methodological issues involved in conducting qualitative research to explore and describe nurses' experience of being directly involved with termination of pregnancies and developing guidelines for support for these nurses. The article points out the sensitivity and responsibility ...
Full Text Available The development of inexperienced researchers is crucial. In response to the lack of research self-efficacy of many previously disadvantaged individuals, the article examines how mentoring can enhance the research self-efficacy of mentees. The study is grounded in the self-efficacy theory (SET – an aspect of the social cognitive theory (SCT. Insights were gained from an in-depth study of SCT, SET and mentoring, and from a completed mentoring project. This led to the formulation of three basic principles. Firstly, institutions need to provide supportive environmental conditions that facilitate research selfefficacy. This implies a supportive and efficient collective system. The possible effects of performance ratings and reward systems at the institution also need to be considered. Secondly, mentoring needs to create opportunities for young researchers to experience successful learning as a result of appropriate action. To this end, mentees need to be involved in actual research projects in small groups. At the same time the mentor needs to facilitate skills development by coaching and encouragement. Thirdly, mentors need to encourage mentees to believe in their ability to successfully complete research projects. This implies encouraging positive emotional states, stimulating self-reflection and self-comparison with others in the group, giving positive evaluative feedback and being an intentional role model.
Piil, Karin; Jarden, Mary
Introduction: Patient involvement in healthcare has expanded from the clinical practice setting to include collaboration during the research process. There has been a growing international interest in patient and public involvement in setting research priorities to reduce the risk of discrepancy...... between what patients with cancer and their relatives experience as important unanswered questions and those which are actually researched. This study aims to challenge the conventional research process by inviting patients with life-threatening cancer (primary malignant brain tumours or acute leukaemia......), relatives and patient organisations to join forces with clinical specialists and researchers to identify, discuss and prioritise supportive care and rehabilitation issues in future research. Methods and analysis: This is an exploratory qualitative study comprising two sets of three focus group interviews...
Full Text Available A major requirement both of national and international ethical codes for human experimentation, and of national legislation in many cases, is that new substances or devices should not be used for the first time on human beings unless previous tests on animals have provided a reasonable presumption of their safety. That is so called: Good Clinical Praxis (GCP. There are two international ethical codes intended principally for the guidance of countries or institutions that have not yet formulated their own ethical requirements for human experimentation: The Declaration of Helsinki of the World Medical Association and The Proposed International Guidelines for Biomedical Research Involving Human Subjects of the Council for International Organizations of Medical Sciences and the World Health Organization.Animal experimentation is fundamental to the biomedical sciences, not only for the advancement of specific vital processes, but also for the improvement of methods of prevention, diagnosis, and treatment of disease both in man and in animals. The use of animals is also indispensable for testing the potency and safety of biological substances used in human and veterinary medicine, as well as for determining the toxicity of the rapidly growing number of molecules that never existed before in nature and which may represent a hazard to health. This extensive exploitation by man of animals implies philosophical and moral problems that are not peculiar to their use for scientific purposes, and there are no objective ethical criteria by which to judge claims and counterclaims in such matters. However, there is a consensus that „deliberate cruelty is repugnant”.While many countries have general laws or regulations imposing penalties for ill-treatment of animals, relatively few make specific provision for their use for scientific purposes. Because of differing legal systems and cultural backgrounds there are varying approaches to the use of
Sibonga, Jean D.
Dual-energy X-ray absorptiometry bone mass density, as a sole index, is an insufficient surrogate for fracture; Clinical Practice Guidelines using bone mass density (both World Health Organization and FRAX) are not specific for complicated subjects such as young, healthy persons following prolonged exposure to skeletal unloading (i.e. an attribute of spaceflight); Research data suggest that spaceflight induces changes to astronaut bones that could be profound, possibly irreversible and unlike age-related bone loss on Earth.; There is a need to objectively assess factors across human physiology that are also influenced by spaceflight (e.g., muscle) that contribute to fracture risk. Some of these objective assessments may require innovative technologies, analyses and modeling.; Astronauts are also exposed to novel situations that may overload their bones highlighting a need integrate biomechanics of physical activities into risk assessments.; As we accumulate data, which reflects the biomechanical competence of bone under specific mechanically-loaded scenarios (even activities of daily living), BONE expects Bone Fracture Module to be more sensitive and/or have less uncertainty in its assessments of fracture probability.; Fracture probability drives the requirement for countermeasures. Level of evidence will unlikely be obtained; hence, the Bone Research and Clinical Advisory Panel (like a Data Safety Monitoring Board) will provide the recommendations.
The development of inexperienced researchers is crucial. In response to the lack of research self-efficacy of many previously disadvantaged individuals, the article examines how mentoring can enhance the research self-efficacy of mentees. The study is grounded in the self-efficacy theory (SET) – an aspect of the social cognitive theory (SCT). Insights were gained from an in-depth study of SCT, SET and mentoring, and from a completed mentoring project. This led to the formulation of three basi...
Sprague, Courtenay; Scanlon, Michael L.; Pantalone, David W.
Justice-involved HIV-positive women have poor health outcomes that constitute health inequities. Researchers have yet to embrace the range of qualitative methods to elucidate how psychosocial histories are connected to pathways of vulnerability to HIV and incarceration for this key population. We used life course narratives and…
Grad, Roland; Pluye, Pierre; Johnson-Lafleur, Janique; Granikov, Vera; Shulha, Michael; Bartlett, Gillian; Marlow, Bernard
A synopsis of new clinical research highlights important aspects of one study in a brief structured format. When delivered as email alerts, synopses enable clinicians to become aware of new developments relevant for practice. Once read, a synopsis can become a known item of clinical information. In time-pressured situations, remembering a known item may facilitate information retrieval by the clinician. However, exactly how synopses first delivered as email alerts influence retrieval at some later time is not known. We examined searches for clinical information in which a synopsis previously read as an email alert was retrieved (defined as a dyad). Our study objectives were to (1) examine whether family physicians retrieved synopses they previously read as email alerts and then to (2) explore whether family physicians purposefully retrieved these synopses. We conducted a mixed-methods study in which a qualitative multiple case study explored the retrieval of email alerts within a prospective longitudinal cohort of practicing family physicians. Reading of research-based synopses was tracked in two contexts: (1) push, meaning to read on email and (2) pull, meaning to read after retrieval from one electronic knowledge resource. Dyads, defined as synopses first read as email alerts and subsequently retrieved in a search of a knowledge resource, were prospectively identified. Participants were interviewed about all of their dyads. Outcomes were the total number of dyads and their type. Over a period of 341 days, 194 unique synopses delivered to 41 participants resulted in 4937 synopsis readings. In all, 1205 synopses were retrieved over an average of 320 days. Of the 1205 retrieved synopses, 21 (1.7%) were dyads made by 17 family physicians. Of the 1205 retrieved synopses, 6 (0.5%) were known item type dyads. However, dyads also occurred serendipitously. In the single knowledge resource we studied, email alerts containing research-based synopses were rarely retrieved
Harm H. Tillema
Full Text Available Educational research acknowledges that researcher’s beliefs and training play a role in framing the outcomes of any study. Research not only consists of defining objectives and following certain methods (search but also of making decisions over the steps taking during the inquiry process (research.Establishing a conceptual framework to guide actions on the subjective processes in research is then crucial to control them. With that purpose in mind we offer researchers and Teacher Educators a heuristic tool to be conscious on the risks that can be taken when immersed in research interpretative process. This instrument could be utilised in PhD programs, masters and research projects.
Fleischman, Alan R
Research involving critically ill neonates creates many ethical challenges. Neonatal clinical research has always been hard to perform, is very expensive, and may generate some unique ethical concerns. This article describes some examples of historical and modern controversies in neonatal research, discusses the justification for research involving such vulnerable and fragile patients, clarifies current federal regulations that govern research involving neonates, and suggests ways that clinical investigators can develop and implement ethically grounded human subjects research. Copyright © 2016 Elsevier Inc. All rights reserved.
Price, Marva M
Partnering Research Involving Mentoring and Education in Prostate Cancer (PRIME) is a partnership between two nursing schools, Duke University School of Nursing and North Carolina Central University (NCCU...
Price, Marva M
Partnering Research Involving Mentoring and Education in Prostate Cancer (PRIME) was a partnership between two nursing schools, Duke University School of Nursing and North Carolina Central University (NCCU...
Price, Marva M
Partnering Research Involving Mentoring and Education in Prostate Cancer (PRIME) is a partnership between two nursing schools, Duke University School of Nursing and North Carolina Central University (NCCU...
Garbutt, Ruth; Tattersall, John; Dunn, Jo; Boycott-Garnett, Rachel
This is an article that talks about our research about sex and relationships for people with learning disabilities. It talks about how people with learning disabilities have been fully involved in the research. (Contains 2 footnotes.)
Williamson, Tracey; Kenney, Laurence; Barker, Anthony T; Cooper, Glen; Good, Tim; Healey, Jamie; Heller, Ben; Howard, David; Matthews, Martin; Prenton, Sarah; Ryan, Julia; Smith, Christine
To appraise the application of accepted good practice guidance on public involvement in assistive technology research and to identify its impact on the research team, the public, device and trial design. Critical reflection and within-project evaluation were undertaken in a case study of the development of a functional electrical stimulation device. Individual and group interviews were undertaken with lay members of a 10 strong study user advisory group and also research team members. Public involvement was seen positively by research team members, who reported a positive impact on device and study designs. The public identified positive impact on confidence, skills, self-esteem, enjoyment, contribution to improving the care of others and opportunities for further involvement in research. A negative impact concerned the challenge of engaging the public in dissemination after the study end. The public were able to impact significantly on the design of an assistive technology device which was made more fit for purpose. Research team attitudes to public involvement were more positive after having witnessed its potential first hand. Within-project evaluation underpins this case study which presents a much needed detailed account of public involvement in assistive technology design research to add to the existing weak evidence base. The evidence base for impact of public involvement in rehabilitation technology design is in need of development. Public involvement in co-design of rehabilitation devices can lead to technologies that are fit for purpose. Rehabilitation researchers need to consider the merits of active public involvement in research.
Mjøsund, Nina Helen; Vinje, Hege Forbech; Eriksson, Monica; Haaland-Øverby, Mette; Jensen, Sven Liang; Kjus, Solveig; Norheim, Irene; Portaasen, Inger-Lill; Espnes, Geir Arild
The aim was to explore the process of involving mental healthcare service users in a mental health promotion research project as research advisors and to articulate features of the collaboration which encouraged and empowered the advisors to make significant contributions to the research process and outcome. There is an increasing interest in evaluating aspects of service user involvement in nursing research. Few descriptions exist of features that enable meaningful service user involvement. We draw on experiences from conducting research which used the methodology interpretative phenomenological analysis to explore how persons with mental disorders perceived mental health. Aside from the participants in the project, five research advisors with service user experience were involved in the entire research process. We applied a case study design to explore the ongoing processes of service user involvement. Documents and texts produced while conducting the project (2012-2016), as well as transcripts from multistage focus group discussions with the research advisors, were analysed. The level of involvement was dynamic and varied throughout the different stages of the research process. Six features: leadership, meeting structure, role clarification, being members of a team, a focus on possibilities and being seen and treated as holistic individuals, were guiding principles for a salutogenic service user involvement. These features strengthened the advisors' perception of themselves as valuable and competent contributors. Significant contributions from research advisors were promoted by facilitating the process of involvement. A supporting structure and atmosphere were consistent with a salutogenic service user involvement. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.
Research progress in the following areas is reported: (1) scintillation cell development and applications, (2) charcoal adsorption development and applications; (3) surveys with Terradex detectors; (4) radon carcinogenesis epidemiology; (5) large scale surveys of radon concentrations in randomly selected houses; (6) ventilation rate studies; (7) soil studies; (8) diffusion of radon through materials other than soil; and (9) test house studies
Shutts, Kristin; Kinzler, Katherine D.; DeJesus, Jasmine M.
Developmental psychologists have devoted significant attention to investigating how children learn from others' actions, emotions, and testimony. Yet most of this research has examined children's socially guided learning about artifacts. The present article focuses on a domain that has received limited attention from those interested in the…
Shutts, Kristin; Kinzler, Katherine D; DeJesus, Jasmine M
Developmental psychologists have devoted significant attention to investigating how children learn from others' actions, emotions, and testimony. Yet most of this research has examined children's socially guided learning about artifacts. The present article focuses on a domain that has received limited attention from those interested in the development of social cognition: food. We begin by reviewing the available literature on infants' and children's development in the food domain and identify situations in which children evidence both successes and failures in their interactions with foods. We focus specifically on the role that other people play in guiding what children eat and argue that understanding patterns of successes and failures in the food domain requires an appreciation of eating as a social phenomenon. We next propose a series of questions for future research and suggest that examining food selection as a social phenomenon can shed light on mechanisms underlying children's learning from others and provide ideas for promoting healthy social relationships and eating behaviors early in development.
This article identifies the key ethical issues that need to be addressed in any research study involving children and young people, accessed through the NHS. It makes specific reference to the Declaration of Helsinki and to additional guidance developed for researchers from a variety of disciplines, both within healthcare and in other fields of study. The focus of the paper is on defining the key ethical issues, identifying the complexities in the legislative framework underpinning research involving this patient group and offering practical advice on when, and how, ethical approval needs to be sought
DUONG, HENRY; POLANSKY, GARY F.; SANDERS, THOMAS L.; SIEGEL, MALCOLM D.
From the earliest days of power reactor development, direct energy conversion was an obvious choice to produce high efficiency electric power generation. Directly capturing the energy of the fission fragments produced during nuclear fission avoids the intermediate conversion to thermal energy and the efficiency limitations of classical thermodynamics. Efficiencies of more than 80% are possible, independent of operational temperature. Direct energy conversion fission reactors would possess a number of unique characteristics that would make them very attractive for commercial power generation. These reactors would be modular in design with integral power conversion and operate at low pressures and temperatures. They would operate at high efficiency and produce power well suited for long distance transmission. They would feature large safety margins and passively safe design. Ideally suited to production by advanced manufacturing techniques, direct energy conversion fission reactors could be produced more economically than conventional reactor designs. The history of direct energy conversion can be considered as dating back to 1913 when Moseleyl demonstrated that charged particle emission could be used to buildup a voltage. Soon after the successful operation of a nuclear reactor, E.P. Wigner suggested the use of fission fragments for direct energy conversion. Over a decade after Wigner's suggestion, the first theoretical treatment of the conversion of fission fragment kinetic energy into electrical potential appeared in the literature. Over the ten years that followed, a number of researchers investigated various aspects of fission fragment direct energy conversion. Experiments were performed that validated the basic physics of the concept, but a variety of technical challenges limited the efficiencies that were achieved. Most research in direct energy conversion ceased in the US by the late 1960s. Sporadic interest in the concept appears in the literature until this
Busan, P; Battaglini, P P; Sommer, M
Developmental stuttering (DS) is a disruption of the rhythm of speech, and affected people may be unable to execute fluent voluntary speech. There are still questions about the exact causes of DS. Evidence suggests there are differences in the structure and functioning of motor systems used for preparing, executing, and controlling motor acts, especially when they are speech related. Much research has been obtained using neuroimaging methods, ranging from functional magnetic resonance to diffusion tensor imaging and electroencephalography/magnetoencephalography. Studies using transcranial magnetic stimulation (TMS) in DS have been uncommon until recently. This is surprising considering the relationship between the functionality of the motor system and DS, and the wide use of TMS in motor-related disturbances such as Parkinson's Disease, Tourette's Syndrome, and dystonia. Consequently, TMS could shed further light on motor aspects of DS. The present work aims to investigate the use of TMS for understanding DS neural mechanisms by reviewing TMS papers in the DS field. Until now, TMS has contributed to the understanding of the excitatory/inhibitory ratio of DS motor functioning, also helping to better understand and critically review evidence about stuttering mechanisms obtained from different techniques, which allowed the investigation of cortico-basal-thalamo-cortical and white matter/connection dysfunctions. Copyright © 2017 International Federation of Clinical Neurophysiology. Published by Elsevier B.V. All rights reserved.
Linda M. Ferguson
Full Text Available Faculty who engage students as participants in their qualitative research often encounter methodological and ethical problems. Ethical issues arise from the fiduciary relationship between faculty and their students, and violations of that relationship occur when the educator has a dual role as researcher with those students. Methodological issues arise from research designs to address these ethical issues. This conflict is particularly evident in faculty research on pedagogy in their own disciplines, for which students are necessary as participants but are captive in the relationship. In this article, the authors explore the issues of double agency when faculty involve students as participants in their research.
Garfield, S; Jheeta, S; Husson, F; Jacklin, A; Bischler, A; Norton, C; Franklin, B D
There is a consensus that patients and the public should be involved in research in a meaningful way. However, to date, lay people have been mostly involved in developing research ideas and commenting on patient information.We previously published a paper describing our experience with lay partners conducting observations in a study of how patients in hospital are involved with their medicines. In a later part of the same study, lay partners were also involved in analysing interviews that a researcher had conducted with patients, carers and healthcare professionals about patient and carer involvement with medicines in hospital. We therefore wanted to build on our previous paper and report on our experiences with lay partners helping to conduct data analysis. We therefore interviewed the lay members and researchers involved in the analysis to find out their views.Both lay members and researchers reported that lay partners added value to the study by bringing their own perspectives and identifying further areas for the researcher to look for in the interviews. In this way researchers and lay partners were able to work together to produce a richer analysis than would have been possible from either alone. Background It is recognised that involving lay people in research in a meaningful rather than tokenistic way is both important and challenging. In this paper, we contribute to this debate by describing our experiences of lay involvement in data analysis. Methods We conducted semi-structured interviews with the lay partners and researchers involved in qualitative data analysis in a wider study of inpatient involvement in medication safety. The interviews were transcribed verbatim and coded using open thematic analysis. Results We interviewed three lay partners and the three researchers involved. These interviews demonstrated that the lay members added value to the analysis by bringing their own perspectives; these were systematically integrated into the analysis by the
a systematic mapping review methodology, the focus was to map and examine research in these types of games or game environments, and to identify potentials and gaps in the field to inform future research. 89 studies were identified through iterative searching and identification processes applying keywords......Due to the increasing significance of games where lay people are involved in generating knowledge for research or development, the current paper presents a mapping review of status and trends in research of games designed for citizen science, crowdsourcing or community driven research. Using...... they were involved and studies where participants develop knowledge for professional use. The 32 studies were selected for a grounded theory inspired qualitative review and six themes were identified: 1. Motivation; 2. Quality of participant contribution; 3. Learning/education; 4. System/task analysis; 5...
Hossne, William Saad; Vieira, Sonia; De Freitas, Corina Bontempo Duca
In Brazil since October 1996 there have been guidelines for research involving human subjects. Now human subjects know when their treatment is part of research. Deceit is no longer tolerated. But is not enough to say we offer an explanation to the potential subject and we offer a choice before he or she is confronted with an informed consent form. As in all professional activity, scientific investigation needs social controls. In Brazil, the ultimate responsibility of an investigation lies on the investigator, but in every institution where research is carried out there is a Committee for Ethics in Research. All Committees are subordinated to the National Commission of Ethics in Research, which is submitted to the Brazilian Institute of Health. During 2005 around 17,000 protocols involving 700,000 human subjects were revised by 475 Committees distributed all over the country. Approximately 7,000 people are now working in these Committees.
Armour, Carol; Brillant, Martha; Krass, Ines
In order for community pharmacy practice to continue to evolve, pharmacy practice research on potential new services is essential. This requires the active participation of community pharmacists. At present the level of involvement of community pharmacists in pharmacy practice research is minimal. To ascertain the attitudes of a group of research-experienced community pharmacists towards participating in research; to investigate the barriers and facilitators to participation; to identify potential strategies to increase the involvement of community pharmacists in research. A focus group was conducted with a purposive sample of 11 research-experienced community pharmacists. A pharmacist academic moderated the focus group using a semi-structured interview guide. The participants were asked about their attitudes towards research, previous involvement in research, barriers to their involvement and strategies to overcome these barriers. The session was audio-taped and notes were taken by an observer. Thematic analysis of the notes and audio-tape transcripts was conducted. Three themes emerged around pharmacists' attitudes towards research: pharmacists' perception of the purpose of research, pharmacists' motivation for involvement in research, and pharmacists' desired role in research. Barriers to research participation were grouped into four themes: pharmacists' mindset, communication, infrastructure (time, money and staff), and skills/knowledge. Strategies to address each of these barriers were suggested. Participants recognised the importance of research towards advancing their profession and this was a motivating factor for involvement in research. They perceived their role in research primarily as data collection. A series of practical strategies to overcome the barriers to participation were offered that researchers may wish to consider when promoting research outcomes and designing research projects.
Full Text Available In order for community pharmacy practice to continue to evolve, pharmacy practice research on potential new services is essential. This requires the active participation of community pharmacists. At present the level of involvement of community pharmacists in pharmacy practice research is minimal. Objectives: To ascertain the attitudes of a group of research-experienced community pharmacists towards participating in research; to investigate the barriers and facilitators to participation; to identify potential strategies to increase the involvement of community pharmacists in research. Methods: A focus group was conducted with a purposive sample of 11 research-experienced community pharmacists. A pharmacist academic moderated the focus group using a semi-structured interview guide. The participants were asked about their attitudes towards research, previous involvement in research, barriers to their involvement and strategies to overcome these barriers. The session was audio-taped and notes were taken by an observer. Thematic analysis of the notes and audio-tape transcripts was conducted.Results: Three themes emerged around pharmacists’ attitudes towards research: pharmacists’ perception of the purpose of research, pharmacists’ motivation for involvement in research, and pharmacists’ desired role in research. Barriers to research participation were grouped into four themes: pharmacists’ mindset, communication, infrastructure (time, money and staff, and skills/knowledge. Strategies to address each of these barriers were suggested.Conclusions: Participants recognised the importance of research towards advancing their profession and this was a motivating factor for involvement in research. They perceived their role in research primarily as data collection. A series of practical strategies to overcome the barriers to participation were offered that researchers may wish to consider when promoting research outcomes and designing research
Gove, Dianne; Diaz-Ponce, Ana; Georges, Jean
This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration...... with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group 'Dementia Outcome Measures - Charting New Territory'. Alzheimer Europe is keen to promote...
van der Scheer, Lieke; Garcia, Elisa; van der Laan, A.L.; van der Burg, Simone; Boenink, Marianne
The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement (‘translation’) of basic scientific findings to relevant and
Scheer, L. van der; Garcia, E.; Laan, A.L. van der; Burg, S. van der; Boenink, M.
The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement ('translation') of basic scientific findings to relevant and
Nuclear engineering is one of the modern and rapidly advancing technologies. Those already involved in it are continually updating their knowledge to keep abreast of the developments. Of course the sound basic principles of engineering still apply but the scene of application can be transformed in a few years. In fact, because of this, many engineers from more traditional industries often express the view that presently the total range of nuclear engineering is research and development. How can students be trained for such a rapidly advancing technology. Is not the answer early involvement. Effective early involvement for students can only come about by the close co-operation and involvement of the staff of universities and industry. The theme is developed. (author)
Fowler, Cathrine; Wu, Cynthia; Lam, Winsome
Competition for scarce clinical placements has increased requiring new and innovative models to be developed to meet the growing need. A participatory action research project was used to provide a community nursing clinical experience of involvement in parent education. Nine Hong Kong nursing students self-selected to participate in the project to implement a parenting program called Parenting Young Children in a Digital World. Three project cycles were used: needs identification, skills development and program implementation. Students were fully involved in each cycle's planning, action and reflection phase. Qualitative and quantitative data were collected to inform the project. The overall outcome of the project was the provision of a rich and viable clinical placement experience that created significant learning opportunities for the students and researchers. This paper will explore the student's participation in this PAR project as an innovative clinical practice opportunity. Copyright © 2013 Elsevier Ltd. All rights reserved.
Kapp, Marshall B
The conduct of hematology/oncology research, particularly clinical trials involving human participants, is an extensively regulated enterprise. Professionals in the specialty of hematology/oncology have important stakes in the success of biomedical research endeavors. Knowledge about and compliance strategies regarding the pertinent regulatory parameters are essential for avoiding negative legal repercussions for involved professionals. At the same time, there is a need to be aware of and actively resist the danger that strong [legal] protectionism might inadvertently result in undermining physician investigators' sense of personal moral responsibility in the conduct of human experiments. For all the limitations of that virtue in the protection of human subjects, it is surely not one that we would want medical scientists to be without . Members of the potential participant pool, financial sponsors, and the general public must be convinced that everyone involved in the research enterprise is committed to operating within acceptable legal and ethical boundaries if the atmosphere of confidence and trust that is indispensable to the continued process and progress of investigation aimed at extending and improving quality of life for all of us in the future is to continue and flourish .
Early engagement in research can transform the undergraduate experience and has a positive effect on minority student recruitment to graduate school. Multiple strategies used to involve undergraduates in research at a large R1 university are presented. During my first four years as an assistant professor, my lab has hosted 14 undergraduates, 9 of them women and 4 of them Hispanic. Institutional support has been critical for undergraduate student involvement. UW supports a research program for incoming underrepresented students. An advantage of this program is very early research participation, with the opportunity for long-term training. One disadvantage is that many first year students have not yet identified their interests. The Biology major also requires students to complete an independent project, which culminates in a research symposium. Competitive research fellowships and grants are available for students to conduct work under faculty mentorship. We have been successful at keeping students on even when their majors are very different from our research discipline, mainly by providing flexibility and a welcoming lab environment. This mentoring culture is strongly fostered by graduate student interest and involvement with all undergraduates as well as active mentor training. By offering multiple pathways for involvement, we can accommodate students' changing schedules and priorities as well as changing lab needs. Students can volunteer, receive course credit, conduct an independent project or honors thesis, contribute to an existing project, do lab work or write a literature review, work with one mentor or on multiple projects. We often provide employment over the summer and subsequent semesters for continuing students. Some will increase their commitment over time and work more closely with me. Others reduce down to a few hours a week as they gain experience elsewhere. Most students stay multiple semesters and multiple years because they 'enjoy being in the
Article 12 of the UN Convention on the Rights of the Child, states that children should be involved in decisions that directly affect them.1 Research involving children should ensure that the opinions and assistance of children and young people is sought at the beginning of the project as their perspectives may influence all aspects of the research design. To describe the challenges recruiting paediatric patients and members of the public to consult on the design of a research project. Posters were put up around the Children's Hospital including pharmacy to recruit paediatric patients and parents to review a research proposal involving children with long-term conditions. There were two responses to the poster, a father and his 15 year old daughter, and a father with a 2 year old child. The father of the 15 year old attended the initial planning meeting, unfortunately the 15 year old and the father of the 2 year old were unable to attend on the day although both agreed to participate in the project. The meeting gave the opportunity to explain the research proposal and answer questions. It was established that the lay team would review the lay summary, participant information leaflet (PIL), and questionnaires that would be sent to the participants. It was arranged that all further contact would be via email due to travel constraints.Patient and public involvement (PPI) in research requires the individuals to be reimbursed for their time. The National Institute for Health Research rate is £18.75 per hour. The lay team members were informed of this and were reimbursed for attending the planning meeting. The use of posters to recruit PPI into the research design had limited success. Since recruitment, the Children's Hospital has launched a youth partnership which may be able to assist in recruitment of lay team members in the future.The logistics of how to pay the lay team members needed to be resolved before their recruitment to ensure timely payment. A form has been
Kaltoft, Mette Kjer; Nielsen, Jesper Bo; Salkeld, Glenn
of the effects of different actions and interventions on their health, including those implying contact with health care services. We see their research as primarily carried out in order to make better decisions for themselves, but they can offer to contribute the results to the wider population. We see...... at the point of decision need, when motivation is highest. Some basic distinctions, such as those between science and non-science, research and practice, community and individual, and lay and professional become somewhat blurred and may need to be rethought in light of this approach....... to increased user involvement, though somewhat more aligned with the former. METHODS: Our online decision support tools, delivered directly to the person in the community and openly accessible, are to be seen as research resources. They will take the form of interactive decision aids for a variety of specific...
Full Text Available Participatory-action research encourages the involvement of all key stakeholders in the research process and is especially well suited to mental health research. Previous literature outlines the importance of engaging stakeholders in the development of research questions and methodologies, but little has been written about ensuring the involvement of all stakeholders (especially non-academic members in dissemination opportunities such as publication development. The Article Idea Chart was developed as a specific methodology for engaging all stakeholders in data analysis and publication development. It has been successfully utilised in a number of studies and is an effective tool for ensuring the dissemination process of participatory-action research results is both inclusive and transparent to all team members, regardless of stakeholder group. Keywords: participatory-action research, mental health, dissemination, community capacity building, publications, authorship
Wikman, Anna; Kukkola, Laura; Börjesson, Helene; Cernvall, Martin; Woodford, Joanne; Grönqvist, Helena; von Essen, Louise
Parenting a child through cancer is a distressing experience, and a subgroup of parents report negative long-term psychological consequences years after treatment completion. However, there is a lack of evidence-based psychological interventions for parents who experience distress in relation to a child's cancer disease after end of treatment. One aim of this study was to develop an internet-administered, cognitive behavior therapy-based, psychological, guided, self-help intervention (ENGAGE) for parents of children previously treated for cancer. Another aim was to identify acceptable procedures for future feasibility and efficacy studies testing and evaluating the intervention. Participatory action research methodology was used. The study included face-to-face workshops and related Web-based exercises. A total of 6 parents (4 mothers, 2 fathers) of children previously treated for cancer were involved as parent research partners. Moreover, 2 clinical psychologists were involved as expert research partners. Research partners and research group members worked collaboratively throughout the study. Data were analyzed iteratively using written summaries of the workshops and Web-based exercises parallel to data collection. A 10-week, internet-administered, cognitive behavior therapy-based, psychological, guided, self-help intervention (ENGAGE) was developed in collaboration with parent research partners and expert research partners. The content of the intervention, mode and frequency of e-therapist support, and the individualized approach for feedback were modified based on the research partner input. Shared solutions were reached regarding the type and timing of support from an e-therapist (eg, initial video or telephone call, multiple methods of e-therapist contact), duration and timing of intervention (eg, 10 weeks, 30-min assessments), and the removal of unnecessary support functions (eg, removal of chat and forum functions). Preferences for study procedures in
Full text: The lives of selected people involved in radiation research are covered in two parts: 1. history of radiation and radioactivity; and 2. historical aspects of radiation and radiation protection in Western Australia. History of radiation/radioactivity: The background of some of the key people involved in early radiation research is discussed. These include Rontgen and Becqucrel who undertook early research into X-rays and radioactivity respectively. As well as the radiation hazards which early radiation scientists faced, there were also social pressures, as exemplified by the life of women such as Marie Curie, particularly after the death of her husband Pierre. Despite this being the time of the so-called 'beautiful years' in Europe, where there was a friendly exchange of ideas between scientists from various countries, there were also protracted disagreements. Some of the scientific findings of the Curies' daughter (Irene Joliot-Curie) and husband (Frederic Joliot-Curie) were vigorously disputed by Lisa Meitner (and colleague Otto Hahn) in Vienna. The 'beautiful years' came to an end when politics intruded and scientists such as Lisa Meitner had to flee from persecution. The splitting of the atom and realisation (by Leo Szilard) that a chain reaction was possible, led to political barriers being erected around scientists. With Europe poised for war, the implication of this science for warfare application was cause for concern among many of the normally free thinking and co-operative scientists. Secrecy now prevailed.
Ricardo Eccard da Silva
Full Text Available Developing countries have experienced a dramatic increase in the number of clinical studies in the last decades. The aim of this study was to describe 1 the number of clinical trials submitted to the Brazilian Health Surveillance Agency (Agência Nacional de Vigilância Sanitária, Anvisa from 2007 to 2012 and the number of human-subject research projects approved by research ethics committees (RECs and the National Research Ethics Committee (Comissão Nacional de Ética em Pesquisa, CONEP in Brazil from 2007 to 2011 and 2 the diseases most frequently studied in Brazilian states in clinical trials approved in the country from 2009 to 2012, based on information from an Anvisa databank. Two databases were used: 1 the National Information System on Research Ethics Involving Human Beings (Sistema Nacional de Informação Sobre Ética em Pesquisa envolvendo Seres Humanos, SISNEP and 2 Anvisa's Clinical Research Control System (Sistema de Controle de Pesquisa Clínica, SCPC. Data from the SCPC indicated an increase of 32.7% in the number of clinical trials submitted to Anvisa, and data from the SISNEP showed an increase of 69.9% in those approved by RECs and CONEP (from 18 160 in 2007 to 30 860 in 2011. Type 2 diabetes (26.0% and breast cancer (20.5%-related to the main causes of mortality in Brazil-were the two most frequently studied diseases. The so-called “neglected diseases,” such as dengue fever, were among the least studied diseases in approved clinical trials, despite their significant impact on social, economic, and health indicators in Brazil. Overall, the data indicated 1 a clear trend toward more research involving human beings in Brazil, 2 good correspondence between diseases most studied in clinical trials approved by Anvisa and the main causes of death in Brazil, and 3 a low level of attention to neglected diseases, an issue that should be considered in setting future research priorities, given their socioeconomic and health effects.
Stratford, Anthony; Brophy, Lisa; Castle, David; Harvey, Carol; Robertson, Joanne; Corlett, Philip; Davidson, Larry; Everall, Ian
This paper highlights the importance and value of involving people with a lived experience of mental ill health and recovery in neuroscience research activity. In this era of recovery oriented service delivery, involving people with the lived experience of mental illness in neuroscience research extends beyond their participation as "subjects". The recovery paradigm reconceptualises people with the lived experience of mental ill health as experts by experience. To support this contribution, local policies and procedures, recovery-oriented training for neuroscience researchers, and dialogue about the practical applications of neuroscience research, are required.
Greco, Dirceu; Diniz, Nilza Maria
Conflicts of interest are inherent to the majority of relationships among individuals and of these with companies and institutions and, certainly, research involving human beings is no exception. In relation to clinical research, the main focus of this manuscript, conflicts of interest occur at different levels and usually permeate among them: In the pharmaceutical industry in their decisions to invest to develop new products, especially vaccines and drugs, and also in relation to marketing of these products; Among the investigators the conflicts may be related to the financial gains to participate in pharma sponsored trials, or to the expected academic career boost attained with the publication of the results of the trials and also to personal interests such as the financial support for trips to international conferences. Often the participation of host country investigators is restricted to performing phase III or IV protocols developed abroad, many times with low scientific relevance, and even lower relevance to public health; Universities or research institutes themselves also have conflicts of interest, as the sponsored projects may help increase their budgets, both directly (taxes) and indirectly (e.g., improvement of physical infrastructure of laboratories or out patient clinics); For the trial volunteers in developing countries, and Brazil is no exception despite free and universal access to its health system, participation in clinical trials is many times seen as, and can really be, an unique opportunity of receiving better health care, better treatment by the health professionals, easier access to costly lab exams and also to receiving certain medications which would otherwise be difficult to have access to. In order to handle these conflicts of interest, Brazil has a well-established and respected legal support and ethical normatization. The latter is represented by Resolution 196/96 of the Brazilian National Research Ethics Committee (CONEP). This
Hall, Natalie; Durand, Marie-Anne; Mengoni, Silvana E.
Background: Despite experiencing health inequalities, people with intellectual disabilities are under-represented in health research. Previous research has identified barriers but has typically focused on under-recruitment to specific studies. This study aimed to explore care staff's attitudes to health research involving people with intellectual…
Wyatt, Katrina; Carter, Mary; Mahtani, Vinita; Barnard, Angela; Hawton, Annie; Britten, Nicky
The value of consumer involvement in health services research is widely recognized. While there is a growing body of evidence about the principles of good consumer involvement, there is little research about the effect that involvement can have on the research. This evaluation assessed the level and impact of consumer involvement in the London Primary Care Studies Programme (LPCSP), all of whose individual projects had to demonstrate substantial involvement as a condition of funding. To evaluate consumer involvement in the LPSCP and understand what impact consumers had on the research process and outcomes. A multi-method case study approach was undertaken, using survey techniques, interviews, focus groups, observation and scrutiny of written documents. The overall data set comprised 61 questionnaires, 44 semi-structured interviews, 2 focus groups and 15 hours of observation of meetings. Eleven primary care-based research projects which together made up the LPCSP. An in-depth description of consumer involvement in the Programme was produced. Nine projects had consumers as co-applicants, four projects had been completed before the evaluation began and one was still ongoing at the time of the evaluation. Of the eight projects which have produced final reports, all met their aims and objectives. Consumers had had an additional impact in the research, in the initial design of the study, in recruitment of the research subjects, in developing data collection tools, in collecting the data, in analysis and disseminating the findings. Consumer involvement in National Health Service research is a relatively recent policy development and while there is an increasing amount of literature about how and why consumers should be involved in research, there is less evidence about the impact of such involvement. This evaluation provides evidence about the impact that consumers have not only on the research process but also on the outcomes of the research.
Ross, Joseph S
The International Committee of Medical Journal Editors (ICMJE) recently announced a bold step forward to require data generated by interventional clinical trials that are published in its member journals to be responsibly shared with external investigators. The movement toward a clinical research culture that supports data sharing has important implications for the design, conduct, and reporting of systematic reviews and meta-analyses. While data sharing is likely to enhance the science of evidence synthesis, facilitating the identification and inclusion of all relevant research, it will also pose key challenges, such as requiring broader search strategies and more thorough scrutiny of identified research. Furthermore, the adoption of data sharing initiatives by the clinical research community should challenge the community of researchers involved in evidence synthesis to follow suit, including the widespread adoption of systematic review registration, results reporting, and data sharing, to promote transparency and enhance the integrity of the research process.
Research interventions to expand the scope of the farmers have shown that greater efficiency of land utilization is exhibited. New areas of research for the evaluation, as well as suggests consideration for intercropping with fruit trees are suggested. The current challenges to fruit production were also identified, while the ...
Thoft, Diana Schack
Involving people with early-stage dementia in qualitative research about their lifeworld perspectives......Involving people with early-stage dementia in qualitative research about their lifeworld perspectives...
... techniques, including laboratory and field techniques, exploratory interviews, pilot experiments and... be managed for research purposes only. Specific details regarding information handling will be...
Urrutia, Julio; Contreras, Oscar
Calcific tendinitis is a frequent disorder caused by hydroxyapatite crystal deposition; however, bone erosions from calcific tendinitis are unusual. The spinal manifestation of this disease is calcific tendinitis of the longus colli muscle; this disease has never been described in the posterior aspect of the spine. We report a case of calcium hydroxyapatite crystal deposition involving the posterior cervical spine eroding the bone cortex. A 57-year-old woman presented with a 5-month history of left-sided neck pain. Radiographs showed C4-C5 interspinous calcification with lytic compromise of the posterior arch of C4. Magnetic resonance imaging confirmed a lytic lesion of the posterior arch of C4, with a soft tissue mass extending to the C4-C5 interspinous space; calcifications were observed as very low signal intensity areas on T1 and T2 sequences, surrounded by gadolinium-enhanced soft tissues. A computed tomography (CT) scan confirmed the bone erosions and the soft tissue calcifications. A CT-guided needle biopsy was performed; it showed vascularized connective tissue with inflammatory histiocytic infiltration and multinucleated giant cells; Alizarin Red stain confirmed the presence of hydroxyapatite crystals. The patient was treated with anti-inflammatories for 2 weeks. She has been asymptomatic in a 6-month follow-up; a CT scan at the last follow-up revealed reparative remodeling of bone erosions. This is the first report of calcium hydroxyapatite crystal deposition with intraosseous penetration involving the posterior aspect of the cervical spine. Considering that this unusual lesion can be misinterpreted as a tumor or infection, high suspicion is required to avoid unnecessary surgical procedures.
Davis, Dena S
As we aggressively pursue research to cure and prevent Alzheimer's disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are (1) the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects' death; (2) the creation of cohorts of 'study ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; (3) reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; (4) the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants' welfare if the information is obtained by insurance companies or long-term care providers; (5) the use of study partners that creates unique risks of harm to the relationship of subject and study partner. We need greater attention, at all levels, to these complex ethical issues. Work on these issues should be included in research plans, from the federal to the local, and should be supported through NIH in the same way that it supported work on the ethical, legal and social implications of genetic research. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Planojević, Nina; Zivojinović, Dragica
Participation in clinical trials can be useful for the health of a person, in who it is conducted, but it does not have to be - it can even be harmful. Therefore, primary motive to accept such risk is humanity and human wish to contribute to the progress of medicine; this is expressed by personal consent. The consent, however, can be an expression of personal humanity, and for this, it is not logical that someone can give consent on behalf of someone else, as it is done by a legally authorized representative on behalf of a minor. Therefore, authors raise 3 questions: What are the reasons to consider representative's consent acceptable? How should a model of regulations look like in order to provide the most complete possible protection to a minor? Is actual regulation of minors' position within international and Serbian law, analyzed here by authors for their specific solutions, acceptable? Representative's consent is acceptable only for therapeutic research, because these can bring benefits to everyone's health, including a minor in which those are conducted - this is an acceptable (secondary) motive of participation in the research. Expression of humanity on other's behalf, typical for non-therapeutic research, is not acceptable; this makes ban of minors' participation in non-therapeutic research more appropriate regulation model. International regulations are not in accordance to results presented in the paper for allowing participation of minors both in therapeutic and non-therapeutic research. Serbian regulation is closer to the most acceptable regulation model.
Dai, Zheng; Ómarsson, Ólafur
With changing times, new technologies and more opinionated consumers, the modern industrial designer has found himself in need of fresher and more up to date approaches in his daily work. In a fast moving industry, the designer needs to keep a thinking process of dynamic and subjective attitude...... will give the grounding for believing that the industrial designer needs to adopt user research methods to a level where he can still continue to work under the very nature of industrial design that has made it a successful practice for the last century. The combing of the approaches and attitude will help....... User research is part of user centered design (UCD). UCD has a reputation for subjective and reflective practice. In this paper there are two example cases. One is conducted by a classical industrial design process, and another is costing half of energy and time in user research. These examples...
Nascimento, Marcelle M; Gordan, Valeria V; Qvist, Vibeke
The authors conducted a study to identify and quantify the reasons used by dentists in The Dental Practice-Based Research Network (DPBRN) for placing restorations on unrestored permanent tooth surfaces and the dental materials they used in doing so....
This paper discusses the need for the Society of Toxicology (SOT) to develop a policy for ethical research in humans, and a review for publication of these studies. Observations on human beings have been the foundation upon which toxicologic knowledge has been built since the in...
Jao, Irene; Kombe, Francis; Mwalukore, Salim; Bull, Susan; Parker, Michael; Kamuya, Dorcas; Molyneux, Sassy
Increased global sharing of public health research data has potential to advance scientific progress but may present challenges to the interests of research stakeholders, particularly in low-to-middle income countries. Policies for data sharing should be responsive to public views, but there is little evidence of the systematic study of these from low-income countries. This qualitative study explored views on fair data-sharing processes among 60 stakeholders in Kenya with varying research experience, using a deliberative approach. Stakeholders’ attitudes were informed by perceptions of benefit and concerns for research data sharing, including risks of stigmatization, loss of privacy, and undermining scientific careers and validity, reported in detail elsewhere. In this article, we discuss institutional trust-building processes seen as central to perceptions of fairness in sharing research data in this setting, including forms of community involvement, individual prior awareness and agreement to data sharing, independence and accountability of governance mechanisms, and operating under a national framework. PMID:26297748
Sparrow, E. B.; Kopplin, M.; Gazal, R. M.; Robin, J. H.; Boger, R. A.
Phenology plays a key role in the environment and ecosystem. Primary and secondary students around the world have been collecting vegetation phenology data and contributing to ongoing scientific investigations. They have increased research capacity by increasing spatial coverage of ground observations that can be useful for validation of remotely sensed data. The green-up and green-down phenology measurement protocols developed at the University of Alaska Fairbanks (UAF) as part of the Global Learning and Observations to Benefit the Environment (GLOBE) program, have been used in more than 250 schools in over 20 countries. In addition to contributing their data, students have conducted their own investigations and presented them at science fairs and symposiums, and international conferences. An elementary school student in Alaska conducted a comprehensive study on the green-down rates of native and introduced trees and shrubs. Her project earned her a one-year college scholarship at UAF. Students from the Model Secondary School for the Deaf in Washington, D. C. and from the Indiana School for the Deaf collaborated on a comparative green-up study, and were chosen to present at an international conference where students from more than 20 countries participated. Similarly, students in Thailand presented at national conferences, their studies such as "The Relationship between Environmental Conditions and Green-down of Teak Trees (Tectona grandis L.)" at Roong Aroon School, Bangkok and "The Comparison of Budburst and Green-up of Leab Trees (Ficus infectoria Roxb.) at Rob Wiang and Mae Khao Tom Sub-district in Chiang Rai Province". Some challenges in engaging students in phenological studies include the mismatch in timing of the start and end of the plant growing season with that of the school year in northern latitudes and the need for scientists and teachers to work with students to ensure accurate measurements. However these are outweighed by benefits to the scientists
Molyneux, Sassy; Tsofa, Benjamin; Barasa, Edwine; Nyikuri, Mary Muyoka; Waweru, Evelyn Wanjiku; Goodman, Catherine; Gilson, Lucy
There is a growing interest in the ethics of Health Policy and Systems Research (HPSR), and especially in areas that have particular ethical salience across HPSR. Hyder et al (2014) provide an initial framework to consider this, and call for more conceptual and empirical work. In this paper, we respond by examining the ethical issues that arose for researchers over the course of conducting three HPSR studies in Kenya in which health managers and providers were key participants. All three studies involved qualitative work including observations and individual and group interviews. Many of the ethical dilemmas researchers faced only emerged over the course of the fieldwork, or on completion, and were related to interactions and relationships between individuals operating at different levels or positions in health/research systems. The dilemmas reveal significant ethical challenges for these forms of HPSR, and show that potential 'solutions' to dilemmas often lead to new issues and complications. Our experiences support the value of research ethics frameworks, and suggest that these can be enriched by incorporating careful consideration of context embedded social relations into research planning and conduct. Many of these essential relational elements of ethical practice, and of producing quality data, are given stronger emphasis in social science research ethics than in epidemiological, clinical or biomedical research ethics, and are particularly relevant where health systems are understood as social and political constructs. We conclude with practical and research implications. © 2016 The Authors Developing World Bioethics Published by John Wiley & Sons Ltd.
Bailey, S; Boddy, K; Briscoe, S; Morris, C
Children and young people can be valuable partners in research, giving their unique perspectives on what and how research should be done. However, disabled children are less commonly involved in research than their non-disabled peers. This review investigated how disabled children have been involved as research partners; specifically how they have been recruited, the practicalities and challenges of involvement and how these have been overcome, and impacts of involvement for research, and disabled children and young people. The INVOLVE definition of involvement and the Equality and Human Rights Commission definition of disability were used. Relevant bibliographic databases were searched. Websites were searched for grey literature. Included studies had involved disabled children and young people aged 5-25 years in any study design. Reviews, guidelines, reports and other documents from the grey literature were eligible for inclusion. Twenty-two papers were included: seven reviews, eight original research papers, three reports, three guidelines and one webpage. Nine examples of involvement were identified. Recommendations included developing effective communication techniques, using flexible methods that can be adapted to needs and preferences, and ensuring that sufficient support and funding is available for researchers undertaking involvement. Positive impacts of involvement for disabled children included increased confidence, self-esteem and independence. Positive impacts for research were identified. Involving disabled children in research can present challenges; many of these can be overcome with sufficient time, planning and resources. More needs to be done to find ways to involve those with non-verbal communication. Generally, few details were reported about disabled children and young people's involvement in studies, and the quality of evidence was low. Although a range of positive impacts were identified, the majority of these were authors' opinions rather
Full Text Available Abstract Background The emergent international practice of involving consumers in health research is driven, in part, by the growing share of health research that can only be applied in and emerge from knowledge that is shaped by human values and societal contexts. This is the first investigation of its kind to identify the current prevalence, challenges, enabling factors and range of approaches to consumer involvement in health and medical research in Australia. Methods A nation-wide survey of research funding organisations and organisations that conduct research was performed during 2008-2009. Results Marked variation in consumer involvement experience and perceptions exists between research funders and researchers. Research funders were over eight times more likely than organisations conducting research to involve consumers in identifying research needs and prioritising research topics. Across both groups, practical and time constraints were reported as key challenges to involving consumers, while guidelines on consumer involvement and evidence of effect were the most important potential enablers. More than a third of research organisations indicated that when consumer involvement was a condition of research funding, it was an important facilitator of involvement. Conclusion It is no longer simply enough to keep society informed of important scientific breakthroughs. If Australian health research is to take into account important social contexts and consequences, it must involve consumers. A set of minimum consumer involvement standards and associated guidelines, that are agreed and routinely adopted, could ensure that consumers and the Australian community they represent, are given an opportunity to shed light on experiences and local circumstance, and express views and concerns relevant to health research.
Abma, T.A.; Pittens, C.A.C.M.; Visse, M.; Elberse, J.E.; Broerse, J.E.W.
Background: The Dialogue Model for research agenda-setting, involving multiple stakeholders including patients, was developed and validated in the Netherlands. However, there is little insight into whether and how patient involvement is sustained during the programming and implementation of research
de Beer, Marie; Mason, Roger B.
This paper investigates a method for increasing the involvement of marketing fourth year learners in academic research, by encouraging greater participation in, and commitment to, their research project in the Applied Marketing IV subject. It is assumed that greater involvement will result in a greater pass rate. The main reasons for this lack of…
... addressed in EPA science and ethics reviews of proposed and completed human research for pesticides, based... Revisions to EPA's Rule on Protections for Subjects in Human Research Involving Pesticides; Notification to... protection of human subjects of research that apply to third parties who conduct or support research for...
McKenzie, Anne; Alpers, Kirsten; Heyworth, Jane; Phuong, Cindy; Hanley, Bec
In Australia, since 2009, the Consumer and Community Involvement Program (formerly the Consumer and Community Participation Program) has developed and run workshops to help people working in health and medical research involve more consumers (patients) and community members (the public) in their research. In 2012, workshop attendees were invited to do an online survey to find out the effect, if any, that attending a workshop had on their awareness of and attitudes to consumer and community involvement. They were also asked about changes in their behaviour when it came to the involvement of consumers and the community in their work. The study found that, for people who answered the survey, more than double the number found consumer and community involvement very relevant after attending a workshop, compared with the number who thought that before attending one. Also, amongst those who answered the survey, 94 % thought that the workshop increased their understanding about involvement. Background There is limited evidence of the benefits of providing training workshops for researchers on how to involve consumers (patients) and the community (public) in health and medical research. Australian training workshops were evaluated to contribute to the evidence base. The key objective was to evaluate the impact of the workshops in increasing awareness of consumer and community involvement; changing attitudes to future implementation of involvement activities and influencing behaviour in the methods of involvement used. A secondary objective was to use a formal evaluation survey to build on the anecdotal feedback received from researchers about changes in awareness, attitudes and behaviours. Methods The study used a cross-sectional, online survey of researchers, students, clinicians, administrators and members of non-government organisations who attended Consumer and Community Involvement Program training workshops between 2009 and 2012 to ascertain changes to awareness
Public involvement is required for applied health research funded in the UK. One of the largest funders, the National Institute of Health Research (NIHR), makes it clear that it values the knowledge of patients and the public. As a result, there are now many resources to make sure that the public voice is included in decision-making about research. However, there is concern that the public voice still has limited impact on research decision-making. This article asks to what extent has power shifted from the scientific research community to the public? It looks at how much power and impact patients and members of the public have about research by asking: How do the public contribute to deciding which research areas and which research projects should be funded? How do they influence how the research is carried out? The article argues that there is evidence that the public voice is present in research decision-making. However, there is less evidence of a change in the power dynamic between the scientific research community and the public. The public involved in research are not always equal partners. The scientific research community still has the loudest voice and patients and the public do not always feel sufficiently empowered to challenge it. Public involvement in applied health research is a pre-requisite for funding from many funding bodies. In particular the National Institute of Health Research (NIHR) in the UK, clearly states that it values lay knowledge and there is an expectation that members of the public will participate as research partners in research. As a result a large public involvement infrastructure has emerged to facilitate this. However, there is concern that despite the flurry of activity in promoting public involvement, lay knowledge is marginalised and has limited impact on research decision-making. This article asks to what extent has power shifted from the scientific research community to the public? It discusses the meaning of power and
In this paper the author considers the lessons to be drawn from what is termed "inclusive" learning disability research for user involvement around health improvement. Inclusive learning disability research refers to research where people with learning difficulties (intellectual disability) are involved as active participants, as opposed to passive subjects. There is by now a considerable body of such research, developed over the past 25 years. From the review, the author draws attention to areas which can inform practice in involvement of users in a way that adds value.
Schilling, Imke; Gerhardus, Ansgar
Demographic change has increased the need for research on healthcare for older people. Recently there has been a growing awareness that research might benefit from actively involving patients and the public in study design and conduct. Besides empowering patients and democratizing research, involvement enhances the quality of research and the development of equitable healthcare solutions. Little is known about how to involve older people. This review aims to support scientists intending to involve older people in health research by systematically identifying and describing studies involving older people and analyzing associated facilitators and challenges. Old people were operationalized as people living with old-age-related conditions. We conducted a systematic search in PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and Cochrane library for the period 2007 to July 2017 and also manually searched reference lists of the nine retrieved articles and other relevant sources. While involvement of older people in research is feasible, specific challenges related to this group need be taken into account. Strategies to enhance effective involvement comprise a thoughtful choice of location, use of visualization and accessible communication, building good relationships and flexible approaches. Further research is needed on the involvement of people in care homes or with vision, hearing or mobility limitations.
Barber, Rosemary; Boote, Jonathan D; Parry, Glenys D; Cooper, Cindy L; Yeeles, Philippa; Cook, Sarah
Public involvement is central to health and social research policies, yet few systematic evaluations of its impact have been carried out, raising questions about the feasibility of evaluating the impact of public involvement. To investigate whether it is feasible to evaluate the impact of public involvement on health and social research. Mixed methods including a two-round Delphi study with pre-specified 80% consensus criterion, with follow-up interviews. UK and international panellists came from different settings, including universities, health and social care institutions and charitable organizations. They comprised researchers, members of the public, research managers, commissioners and policy makers, self-selected as having knowledge and/or experience of public involvement in health and/or social research; 124 completed both rounds of the Delphi process. A purposive sample of 14 panellists was interviewed. Consensus was reached that it is feasible to evaluate the impact of public involvement on 5 of 16 impact issues: identifying and prioritizing research topics, disseminating research findings and on key stakeholders. Qualitative analysis revealed the complexities of evaluating a process that is subjective and socially constructed. While many panellists believed that it is morally right to involve the public in research, they also considered that it is appropriate to evaluate the impact of public involvement. This study found consensus among panellists that it is feasible to evaluate the impact of public involvement on some research processes, outcomes and on key stakeholders. The value of public involvement and the importance of evaluating its impact were endorsed. © 2011 Blackwell Publishing Ltd.
Barber, Rosemary; Boote, Jonathan D; Parry, Glenys D; Cooper, Cindy L; Yeeles, Philippa; Cook, Sarah
Abstract Background Public involvement is central to health and social research policies, yet few systematic evaluations of its impact have been carried out, raising questions about the feasibility of evaluating the impact of public involvement. Objective To investigate whether it is feasible to evaluate the impact of public involvement on health and social research. Methods Mixed methods including a two‐round Delphi study with pre‐specified 80% consensus criterion, with follow‐up interviews. UK and international panellists came from different settings, including universities, health and social care institutions and charitable organizations. They comprised researchers, members of the public, research managers, commissioners and policy makers, self‐selected as having knowledge and/or experience of public involvement in health and/or social research; 124 completed both rounds of the Delphi process. A purposive sample of 14 panellists was interviewed. Results Consensus was reached that it is feasible to evaluate the impact of public involvement on 5 of 16 impact issues: identifying and prioritizing research topics, disseminating research findings and on key stakeholders. Qualitative analysis revealed the complexities of evaluating a process that is subjective and socially constructed. While many panellists believed that it is morally right to involve the public in research, they also considered that it is appropriate to evaluate the impact of public involvement. Conclusions This study found consensus among panellists that it is feasible to evaluate the impact of public involvement on some research processes, outcomes and on key stakeholders. The value of public involvement and the importance of evaluating its impact were endorsed. PMID:21324054
Delin, Catherine R.
Medicine has a long research tradition, whereas allied health areas have only recently become involved in research. A questionnaire study was conducted to investigate the attitudes to research of a total of 314 students of medicine, dentistry, occupational therapy, physiotherapy, and nursing courses on the city campuses of two South Australian…
Tuffrey-Wijne, Irene; Butler, Gary
People with learning disabilities have been included in research as co-researchers since the 1990s. However, there is limited literature about the processes of involving people with learning disabilities in the more intellectual and analytical stages of the research process. To examine the potential contribution of people with learning disabilities to data analysis in qualitative research. This article is a reflection on one research experience. The two authors include one researcher with and one without learning disabilities. They each describe their experience and understanding of user involvement in analysing the data of an ethnographic study of people with learning disabilities who had cancer. The researcher with learning disabilities was given extensive vignettes and extracts from the research field notes, and was supported to extract themes, which were cross-compared with the analysis of other members of the research team. The researcher with learning disabilities coped well with the emotive content of the data and with the additional support provided, he was able to extract themes that added validity to the overall analysis. His contribution complemented those of the other members of the research team. There were unexpected benefits, in particular, in terms of a more reciprocal and supportive relationship between the two researchers. It is possible and valuable to extend involvement to data analysis, but to avoid tokenism and maintain academic rigour, there must be a clear rationale for such involvement. Extra support, time and costs must be planned for.
McKenzie, Anne; Alpers, Kirsten; Heyworth, Jane; Phuong, Cindy; Hanley, Bec
Plain English Summary In Australia, since 2009, the Consumer and Community Involvement Program (formerly the Consumer and Community Participation Program) has developed and run workshops to help people working in health and medical research involve more consumers (patients) and community members (the public) in their research. In 2012, workshop attendees were invited to do an online survey to find out the effect, if any, that attending a workshop had on their awareness of and attitudes to con...
Holland, Suzanne; Kydd, Angela
To discuss the methodological and ethical review challenges encountered by researchers who want to enable people with dementia to be involved in research. There has been increasing recognition of the importance of involving people with dementia in research. However, an argument has centred on the protection of these vulnerable clients versus their freedom to be involved as participants in research. People with dementia do have the right to have their experiences explored. Involving this client group in research is essential to gain a true understanding of their needs. The lead author's experience of conducting a study in which people newly diagnosed with dementia were recruited as research participants. An interpretive phenomenological approach was adopted during this qualitative study, with data collected by means of one to one interviews with people newly diagnosed with dementia. This study was completed within the set timeframe, but a large part of the work was spent gaining ethical approval. This meant that the timeframe of the study period was reduced and as a result, it was only possible to recruit three participants. However, people with dementia are perhaps one of the most vulnerable client groups and it is only right that they should not be subjected to harm. Ethical review is an important part of research. Meeting the ethical requirements of research involving people with dementia requires time and careful preparation to ensure that researchers safeguard the interests of this vulnerable client group, while also allowing the participants the opportunity to exercise their autonomy to their fullest potential. Conducting research that involves people with dementia may be time consuming, but it is only fair that this client group are afforded the freedom to be involved in research. This small time-limited study points to the need for larger pilot studies to hear from individuals what needs they have following a diagnosis of dementia.
Grieger, Khara D.; Laurent, Alexis; Miseljic, Mirko; Christensen, Frans; Baun, Anders; Olsen, Stig I.
While it is generally agreed that successful strategies to address the health and environmental impacts of engineered nanomaterials (NM) should consider the well-established frameworks for conducting life-cycle assessment (LCA) and risk assessment (RA), scientific research, and specific guidance on how to practically apply these methods are still very much under development. This paper evaluates how research efforts have applied LCA and RA together for NM, particularly reflecting on previous experiences with applying these methods to chemicals. Through a literature review and a separate analysis of research focused on applying LCA and RA together for NM, it appears that current research efforts have taken into account some key “lessons learned” from previous experience with chemicals while many key challenges remain for practically applying these methods to NM. We identified two main approaches for using these methods together for NM: “LC-based RA” (traditional RA applied in a life-cycle perspective) and “RA-complemented LCA” (conventional LCA supplemented by RA in specific life-cycle steps). Hence, the latter is the only identified approach which genuinely combines LC- and RA-based methods for NM-risk research efforts to date as the former is rather a continuation of normal RA according to standard assessment procedures (e.g., REACH). Both these approaches along with recommendations for using LCA and RA together for NM are similar to those made previously for chemicals, and thus, there does not appear to be much progress made specific for NM. We have identified one issue in particular that may be specific for NM when applying LCA and RA at this time: the need to establish proper dose metrics within both methods.
Vries, M.C. de; Wit, J.M.; Engberts, D.P.; Kaspers, G.J.L.; Leeuwen, E. van
BACKGROUND: Various regulations and guidelines stipulate the importance of involving adolescents in decision-making concerning research participation. Several studies have shown that in the context of pediatric oncology this involvement is difficult to achieve due to emotional stress, the complexity
... involving intentional exposure of children or of pregnant or nursing women, unless relying on the data is crucial to a decision that would impose a more stringent regulatory restriction that would improve... itself to conduct or support any research involving intentional exposure of pregnant or nursing women or...
Elberse, J.E.; Pittens, C.A.C.M.; de Cock Buning, J.T.; Broerse, J.E.W.
Patient involvement in scientific advisory processes could lead to more societally relevant advice. This article describes a case study wherein the Health Council of the Netherlands involved patient groups in an advisory process with a predefined focus: setting a research agenda for medical products
Bell, Rick; Marshall, David W
The construct of involvement has been found to influence brand loyalty, product information search processing, responses to advertising communications, diffusion of innovations, and ultimately, product choice decisions. Traditionally, involvement has been defined as being a characteristic of either a product or of an individual. In the present research, we make an assumption that an individual's 'food involvement' is a somewhat stable characteristic and we hypothesized that involvement with foods would vary between individuals, that individuals who are more highly involved with food would be better able to discriminate between a set of food samples than would less food involved individuals, and that this discrimination would operate both in affective and perceptive relative judgments. Using standard scale construction techniques, we developed a measure of the characteristic of food involvement, based on activities relating to food acquisition, preparation, cooking, eating and disposal. After several iterations, a final 12-item measure was found to have good test-retest reliability and internal consistency within two subscales. A behavioral validation study demonstrated that measures of food involvement were associated with discrimination and hedonic ratings for a range of foods in a laboratory setting. These findings suggest that food involvement, as measured by the Food Involvement Scale, may be an important mediator to consider when undertaking research with food and food habits.
Grieger, Khara Deanne; Laurent, Alexis; Miseljic, Mirko
of research focused on applying LCA and RA together for NM, it appears that current research efforts have taken into account some key ‘‘lessons learned’’ from previous experience with chemicals while many key challenges remain for practically applying these methods to NM. We identified two main approaches...... for using these methods together for NM: ‘‘LC-based RA’’ (traditional RA applied in a life-cycle perspective) and ‘‘RA-complemented LCA’’ (conventional LCA supplemented by RA in specific life-cycle steps). Hence, the latter is the only identified approach which genuinely combines LC- and RA-based methods......While it is generally agreed that successful strategies to address the health and environmental impacts of engineered nanomaterials (NM) should consider the well-established frameworks for conducting life-cycle assessment (LCA) and risk assessment (RA), scientific research, and specific guidance...
Pearl, Gill; Cruice, Madeline
People with aphasia can be marginalized by a communicatively inaccessible society. Compounding this problem, routinized exclusion from stroke research leads to bias in the evidence base and subsequent inequalities in service provision. Within the United Kingdom, the Clinical Research Network of the National Institute of Health identified this…
Campbell, Theresa Diane
To explore the issues of data management and data ownership with regard to health research conducted in aboriginal or indigenous populations in Canada. Research with aboriginal communities in Canada has often been conducted by researchers who had little or no understanding of the community in which the research was taking place. This led to 'helicopter' research, which benefitted the researcher but not the community. National aboriginal leadership developed the ownership, control, access, and possession (OCAP) principles, which outline how to manage research data regarding aboriginal people and to counteract disrespectful methodologies. However, these principles present their own set of challenges to those who would conduct research with aboriginal populations. Documents from the Assembly of First Nations, the Government of Canada, Aboriginal writers and researchers, and Nursing theorists and researchers. This is a methodology paper that reviews the issues of data ownership when conducting research with Aboriginal populations. The authors explore indigenous and Western views of knowledge development, outline and discuss the OCAP principles, and present the Canadian Institute of Health Research's guidelines for health research involving aboriginal people as a guide for those who want to carry out ethical and culturally competent research, do no harm and produce research that can benefit aboriginal peoples. There are special considerations associated with conducting research with Aboriginal populations. The Assembly of First Nations wants researchers to use the Ownership, Control, Access and Possession (OCAP) principles with First Nations data. These principles are restrictive and need to be discussed with stakeholders before research is undertaken. In Canada, it is imperative that researchers use the Canadian Institute of Health Research Guidelines for Health Research Involving Aboriginal People to ensure culturally sensitive and ethical conduct during the course of
Paul, C; Holt, J
WHAT IS KNOWN ON THE SUBJECT?: UK health policy is clear that researchers should involve the public throughout the research process. The public, including patients, carers and/or local citizens can bring a different and valuable perspective to the research process and improve the quality of research undertaken. Conducting health research is demanding with tight deadlines and scarce resources. This can make involving the public in research very challenging. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This is the first time the attitudes of researchers working in mental health and learning disability services towards PPI have been investigated. The principles of service user involvement in mental health and learning disability services may support PPI in research as a tool of collaboration and empowerment. This article extends our understanding of the cultural and attitudinal barriers to implementing PPI guidelines in mental health and learning disability services. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Researchers in mental health and learning disability services need to champion, share and publish effective involvement work. Structural barriers to PPI work should be addressed locally and successful strategies shared nationally and internationally. Where PPI guidelines are being developed, attention needs to be paid to cultural factors in the research community to win "hearts and minds" and support the effective integration of PPI across the whole research process. Introduction Patient and public involvement (PPI) is integral to UK health research guidance; however, implementation is inconsistent. There is little research into the attitudes of NHS health researchers towards PPI. Aim This study explored the attitude of researchers working in mental health and learning disability services in the UK towards PPI in health research. Method Using a qualitative methodology, semi-structured interviews were conducted with a purposive sample of eight researchers. A
Sternquist, Brenda; Huddleston, Patricia; Fairhurst, Ann
We provide an overview of ways to involve undergraduate business and retailing students in faculty research projects and discuss advantages of these student-faculty collaborations. We use Kolb's experiential learning cycle to provide a framework for creating an effective and engaging undergraduate research experience and use it to classify types…
Gonzalvez, Mr V; Schlueter, Mr M; Slabe, Ms A; Schmid, Mr O
The paper presents the concepts, criteria, procedures and some methodologies to increase stakeholders involvement and participatioin in organic research Projects in the European Union, based on the experiencie and practise of the IFOAM EU Regional Group (IFOAM-EURG), in transnational Organic research Projects, enfatising in achivements, dificulties and trends for the future
Locock, Louise; Boylan, Anne-Marie; Snow, Rosamund; Staniszewska, Sophie
Policy-makers and health research funders increasingly require researchers to demonstrate that they have involved patients in the design and conduct of research. However, the extent to which patients and public have the power to get involved on an equal footing is dependent on their economic, cultural, social and symbolic capital. To explore power relations in patient and public involvement (PPI) in research, particularly how patients may wield symbolic capital to develop a more equal relationship. Narrative interviews with a maximum variation sample of 38 people involved as patients, carers or public in health research, analysed thematically. Symbolic capital may be demonstrated in a range of ways (sometimes alongside or in the absence of other forms of capital): illness experience, technical illness knowledge and the challenging outsider. Symbolic capital is unstable and dependent on others for recognition and legitimacy. Nonetheless, participants identify a gradual shift in power relations over time. Research into PPI has been conceptually and theoretically poor, limiting our understanding of its mechanisms and wider contextual elements. Our findings demonstrate the importance of reflecting on the forms of power and capital wielded by the health research community, and of acknowledging the way in which PPI is challenging the status quo. As one of the first papers to conceptualize how different forms of symbolic capital operate and their critical role in challenging the balance of power, our findings may help researchers better plan their PPI activities and reflect on their own power. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.
Iacono, T.; Carling-Jenkins, R.
Background: The history of ethical guidelines addresses protection of human rights in the face of violations. Examples of such violations in research involving people with intellectual disabilities (ID) abound. We explore this history in an effort to understand the apparently stringent criteria for the inclusion of people with ID in research, and…
... addressed in EPA science and ethics reviews of proposed and completed human research with pesticides, drawn..., which suggest ethical considerations relevant to evaluation of human studies. Third, Petitioners argued... Revisions to EPA's Rule on Protections for Subjects in Human Research Involving Pesticides AGENCY...
Using a participatory and dynamic approach to involve people with lived experience of homelessness and exclusion is an effective public engagement methodology for complex topics such as EHR research and data linkage. Information provided in the workshop was useful for interpreting findings, identifying strengths and gaps in health and social services, and developing research and practice recommendations.
Full Text Available Scientific undergraduate research in higher education often yields positive outcomes for student and faculty member participants alike, with underrepresented students often showing even more substantial gains (academic, professional, and personal as a result of the experience. Significant success can be realized when involving deaf and hard-of-hearing (d/hh undergraduate students, who are also vastly underrepresented in the sciences, in interdisciplinary research projects. Even d/hh Associate degree level students and those in the first two years of their postsecondary careers can contribute to, and benefit from, the research process when faculty mentors properly plan/design projects. We discuss strategies, including the dissemination/communication of research results, for involving these students in research groups with different communication dynamics and share both findings of our research program and examples of successful chemical and biological research projects that have involved d/hh undergraduate students. We hope to stimulate a renewed interest in encouraging diversity and involving students with disabilities into higher education research experiences globally and across multiple scientific disciplines, thus strengthening the education and career pipeline of these students.
de Vries, Martine C; Wit, Jan M; Engberts, Dirk P; Kaspers, Gertjan J L; van Leeuwen, Evert
Various regulations and guidelines stipulate the importance of involving adolescents in decision-making concerning research participation. Several studies have shown that in the context of pediatric oncology this involvement is difficult to achieve due to emotional stress, the complexity of research protocols and limited time. Still, up to 80% of adolescents with cancer enter onto a trial during their illness. The aim of this study was to determine clinicians' views and attitudes towards enrolling adolescents in research, considering the difficulties surrounding their involvement in decision-making. A qualitative multicenter study was performed, using in-depth semi-structured interviews on the informed consent process with 15 pediatric hemato-oncologists. Four central themes emerged that characterize clinicians' attitudes towards involving adolescents in the decision-making process: (1) clinicians regard most adolescents as not capable of participating meaningfully in discussions regarding research; (2) clinicians do not always provide adolescents with all information; (3) proxy consent from parents is obtained and is deemed sufficient; (4) clinician-investigator integrity: clinicians judge research protocols as not being harmful and even in the best interest of the adolescent. Clinicians justify not involving adolescents in research discussions by referring to best interest arguments (adolescents' incompetence, proxy consent, and investigator integrity), although this is not in line with legal regulations and ethical guidelines.
Vreeman, Rachel; Kamaara, Eunice; Kamanda, Allan; Ayuku, David; Nyandiko, Winstone; Atwoli, Lukoye; Ayaya, Samuel; Gisore, Peter; Scanlon, Michael; Braitstein, Paula
Involving vulnerable pediatric populations in international research requires culturally appropriate ethical protections. We sought to use mabaraza, traditional East African community assemblies, to understand how a community in western Kenya viewed participation of children in health research and informed consent and assent processes. Results from 108 participants revealed generally positive attitudes towards involving vulnerable children in research, largely because they assumed children would directly benefit. Consent from parents or guardians was understood as necessary for participation while gaining child assent was not. They felt other caregivers, community leaders, and even community assemblies could participate in the consent process. Community members believed research involving orphans and street children could benefit these vulnerable populations, but would require special processes for consent.
Festinger, David S; Dugosh, Karen L; Croft, Jason R; Arabia, Patricia L; Marlowe, Douglas B
We examined the efficacy of including a research intermediary (RI) during the consent process in reducing participants' perceptions of coercion to enroll in a research study. Eighty-four drug court clients being recruited into an ongoing study were randomized to receive a standard informed consent process alone (standard condition) or with an RI (intermediary condition). Before obtaining consent, RIs met with clients individually to discuss remaining concerns. Findings provided preliminary evidence that RIs reduced client perceptions that their participation might influence how clinical and judicial staff view them. This suggests that using RIs may improve participant autonomy in clinical studies.
Parkes, Jacqueline H; Pyer, Michelle; Wray, Paula; Taylor, Jane
In recent years, several UK and, international funders of health and social care related research have adopted the policy of requiring explicit evidence of the 'public' voice in all aspects of project design. For many academic researchers engaged within research, evaluations or audit projects, this formal requirement to actively engage members of the public will present them with both benefits and challenges to securing knowledgeable, skilled, and confident lay representation onto project teams. This could potentially lead to the exploitation of those individuals who are available, appropriately informed, and adequately prepared for such activities. Currently, much of the preparation of patients or members of the public for research involvement tends to be aligned to specific projects; however, with the call for greater active and meaningful involvement of lay representatives in future national and international funding applications, there is clearly a growing need to 'train' sufficient numbers of confident and competent representatives to meet this growing demand. This paper describes the development of a specifically designed research awareness training programme and underpinning theoretical model, which has been specifically designed to support active and meaningful lay involvement in research, evaluations and audit projects. Developed over a four year period, the course is a culmination of learning extracted from a series of four completed research projects, which have incorporated an element of public and patient involvement (PPI) training in their overall design. Crown Copyright © 2014. Published by Elsevier Ireland Ltd. All rights reserved.
Froggatt, Katherine; Goodman, Claire; Morbey, Hazel; Davies, Sue L; Masey, Helen; Dickinson, Angela; Martin, Wendy; Victor, Christina
Public involvement in research (PIR) can improve research design and recruitment. Less is known about how PIR enhances the experience of participation and enriches the data collection process. In a study to evaluate how UK care homes and primary health-care services achieve integrated working to promote older people's health, PIR was integrated throughout the research processes. This paper aims to present one way in which PIR has been integrated into the design and delivery of a multisite research study based in care homes. A prospective case study design, with an embedded qualitative evaluation of PIR activity. Data collection was undertaken in six care homes in three sites in England. Six PIR members participated: all had prior personal or work experience in care homes. Qualitative data collection involved discussion groups, and site-specific meetings to review experiences of participation, benefits and challenges, and completion of structured fieldwork notes after each care home visit. PIR members supported recruitment, resident and staff interviews and participated in data interpretation. Benefits of PIR work were resident engagement that minimized distress and made best use of limited research resources. Challenges concerned communication and scheduling. Researcher support for PIR involvement was resource intensive. Clearly defined roles with identified training and support facilitated involvement in different aspects of the data collection process. This can also ensure that vulnerable older people who participate in research have a positive experience that reinforces the value of their views. © 2015 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Rawson, Timothy M; Castro-Sánchez, Enrique; Charani, Esmita; Husson, Fran; Moore, Luke S P; Holmes, Alison H; Ahmad, Raheelah
Public sources fund the majority of UK infection research, but citizens currently have no formal role in resource allocation. To explore the feasibility and willingness of citizens to engage in strategic decision making, we developed and tested a practical tool to capture public priorities for research. A scenario including six infection themes for funding was developed to assess citizen priorities for research funding. This was tested over two days at a university public festival. Votes were cast anonymously along with rationale for selection. The scenario was then implemented during a three-hour focus group exploring views on engagement in strategic decisions and in-depth evaluation of the tool. 188/491(38%) prioritized funding research into drug-resistant infections followed by emerging infections(18%). Results were similar between both days. Focus groups contained a total of 20 citizens with an equal gender split, range of ethnicities and ages ranging from 18 to >70 years. The tool was perceived as clear with participants able to make informed comparisons. Rationale for funding choices provided by voters and focus group participants are grouped into three major themes: (i) Information processing; (ii) Knowledge of the problem; (iii) Responsibility; and a unique theme within the focus groups (iv) The potential role of citizens in decision making. Divergent perceptions of relevance and confidence of "non-experts" as decision makers were expressed. Voting scenarios can be used to collect, en-masse, citizens' choices and rationale for research priorities. Ensuring adequate levels of citizen information and confidence is important to allow deployment in other formats. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Shield, Renée; Rosenthal, Marsha; Wetle, Terrie; Tyler, Denise; Clark, Melissa; Intrator, Orna
Medical staff (physicians, nurse practitioners, physicians' assistants) involvement in nursing homes (NH) is limited by professional guidelines, government policies, regulations, and reimbursements, creating bureaucratic burden. The conceptual NH Medical Staff Involvement Model, based on our mixed-methods research, applies the Donabedian "structure-process-outcomes" framework to the NH, identifying measures for a coordinated research agenda. Quantitative surveys and qualitative interviews conducted with medical directors, administrators and directors of nursing, other experts, residents and family members and Minimum Data Set, the Online Certification and Reporting System and Medicare Part B claims data related to NH structure, process, and outcomes were analyzed. NH control of medical staff, or structure, affects medical staff involvement in care processes and is associated with better outcomes (e.g., symptom management, appropriate transitions, satisfaction). The model identifies measures clarifying the impact of NH medical staff involvement on care processes and resident outcomes and has strong potential to inform regulatory policies.
Miller, Victoria A; Werner-Lin, Allison; Walser, Sarah A; Biswas, Sawona; Bernhardt, Barbara A
The goal of this study was to examine children's involvement in consent sessions for exome sequencing research and associations of involvement with provider and parent communication. Participants included 44 children (8-17 years) from five cohorts who were offered participation in an exome sequencing study. The consent sessions were audiotaped, transcribed, and coded. Providers attempted to facilitate the child's involvement in the majority (73%) of sessions, and most (75%) children also verbally participated. Provider facilitation was strongly associated with likelihood of child participation. These findings underscore that strategies such as asking for children's opinions and soliciting their questions show respect for children and may increase the likelihood that they are engaged and involved in decisions about research participation.
Miller, Victoria A; Feudtner, Chris; Jawad, Abbas F
The primary objective of this study was to examine the associations of children's involvement in decisions about research participation with their perceptions of the decision-making process and self-efficacy. Participants were children (ages 8-17) who enrolled in research studies in the prior 2 months. Children completed a questionnaire that yielded three decision-making involvement subscales: Researcher Engages Child, Researcher Supports Autonomy, and Child Participates. Children reported on fairness of the decision-making process and health-related decision self-efficacy. After adjusting for age, higher scores on Researcher Engages Child were associated with greater self-efficacy, and higher scores on Researcher Supports Autonomy were associated with greater perceived fairness. These data underscore the potential importance of researcher-child interactions about research participation when assent is sought, including proactively involving children in the decision by asking for their opinions and communicating their central role in the decision, which are likely to be more meaningful to children than receiving information or signing a form.
Shewade, H D; Chadha, S S; Gupta, V; Tripathy, J P; Satyanarayana, S; Sagili, K; Mohanty, S; Bera, O P; Pandey, P; Rajeswaran, P; Jayaraman, G; Santhappan, A; Bajpai, U N; Mamatha, A M; Maiser, R; Naqvi, A J; Pandurangan, S; Nath, S; Ghule, V H; Das, A; Prasad, B M; Biswas, M; Singh, G; Mallick, G; Jeyakumar Jaisingh, A J; Rao, R; Kumar, A M V
Conducting multicentre operational research is challenging due to issues related to the logistics of travel, training, supervision, monitoring and troubleshooting support. This is even more burdensome in resource-constrained settings and if the research includes patient interviews. In this article, we describe an innovative model that uses open access tools such as Dropbox, TeamViewer and CamScanner for efficient, quality-assured data collection in an ongoing multicentre operational research study involving record review and patient interviews. The tools used for data collection have been shared for adaptation and use by other researchers.
Full Text Available Objectives. To report on a participatory research process in southwest Alaska focusing on youth involvement as a means to facilitate health promotion. We propose youth-guided community-based participatory research (CBPR as way to involve young people in health promotion and prevention strategizing as part of translational science practice at the community-level. Study design. We utilized a CBPR approach that allowed youth to contribute at all stages. Methods. Implementation of the CBPR approach involved the advancement of three key strategies including: (a the local steering committee made up of youth, tribal leaders, and elders, (b youth-researcher partnerships, and (c youth action-groups to translate findings. Results. The addition of a local youth-action and translation group to the CBPR process in the southwest Alaska site represents an innovative strategy for disseminating findings to youth from a research project that focuses on youth resilience and wellbeing. This strategy drew from two community-based action activities: (a being useful by helping elders and (b being proud of our village. Conclusions. In our study, youth informed the research process at every stage, but most significantly youth guided the translation and application of the research findings at the community level. Findings from the research project were translated by youth into serviceable action in the community where they live. The research created an experience for youth to spend time engaged in activities that, from their perspectives, are important and contribute to their wellbeing and healthy living. Youth-guided CBPR meant involving youth in the process of not only understanding the research process but living through it as well.
Moule, Pam; Davies, Rosie
Patient and public involvement in all aspects of research is espoused and there is a continued interest in understanding its wider impact. Existing investigations have identified both beneficial outcomes and remaining issues. This paper presents the impact of public involvement in one case study led by a mental health charity conducted as part of a larger research project. The case study used a devolved model of working, contracting with service user-led organizations to maximize the benefits of local knowledge on the implementation of personalized budgets, support recruitment and local user-led organizations. To understand the processes and impact of public involvement in a devolved model of working with user-led organizations. Multiple data collection methods were employed throughout 2012. These included interviews with the researchers (n = 10) and research partners (n = 5), observation of two case study meetings and the review of key case study documentation. Analysis was conducted in NVivo10 using a coding framework developed following a literature review. Five key themes emerged from the data; Devolved model, Nature of involvement, Enabling factors, Implementation challenges and Impact. While there were some challenges of implementing the devolved model it is clear that our findings add to the growing understanding of the positive benefits research partners can bring to complex research. A devolved model can support the involvement of user-led organizations in research if there is a clear understanding of the underpinning philosophy and support mechanisms are in place. © 2015 The Authors. Health Expectations Published by John Wiley & Sons Ltd.
Rennie, Stuart; Groves, Allison K; Hallfors, Denise Dion; Iritani, Bonita J; Odongo, Fredrick S; Luseno, Winnie K
Assessment of benefits is traditionally regarded as crucial to the ethical evaluation of research involving human participants. We conducted focus group discussions (FGDs) with health and other professionals engaged with adolescents, caregivers/parents, and adolescents in Siaya County, Kenya, to solicit opinions about appropriate ways of conducting HIV research with adolescents. Our data revealed that many focus group participants have a profoundly positive conception of participation in health research, including studies conferring seemingly few benefits. In this article, we identify and analyze five different but interrelated types of benefits as perceived by Kenyan adolescent and adult stakeholders in HIV research, and discuss their ethical significance. Our findings suggest that future empirical and conceptual research should concentrate on factors that may trigger researcher obligations to improve benefit perceptions among research participants.
Williams, David M.; Ussher, Michael; Dunsiger, Shira; Miranda, Robert; Gwaltney, Chad J.; Monti, Peter M.; Emerson, Jessica
Aerobic exercise has been proposed as a stand-alone or adjunct smoking cessation treatment, but findings have been mixed. Laboratory studies have shown that individual exercise sessions lead to decreases in withdrawal symptoms and cigarette cravings, but findings are limited by lack of follow-up and artificial settings. On the other hand, smoking cessation treatment RCTs have generally failed to show positive effects of exercise on smoking cessation, but have been plagued by poor and/or unverified compliance with exercise programs. This paper describes the rationale and design for Quit for Health (QFH)—an RCT designed to determine the efficacy of aerobic exercise as an adjunct smoking cessation treatment among women. To overcome limitations of previous research, compliance with the exercise (and wellness contact control) program is incentivized and directly observed, and ecological momentary assessment is used to examine change over time in withdrawal symptoms and cigarette cravings in participants’ natural environments. PMID:24246818
Consulting with children is widely recognised as an essential element in building understanding about children's lives. From a children's rights perspective, it is also a legal requirement on professionals working with children. However, translating the rhetoric into research and practice is still evolving. Previous studies report on working with…
Gollin, Lisa X; Harrigan, Rosanne C; Calderón, José L; Perez, John; Easa, David
Investigate the barriers to participation in medical research that involves Asian and Pacific Islander (API) populations in Hawai'i. Fifty people (27 Filipinos, 23 Hawaiian/Pacific Islanders) in five different communities on Oahu. Nine focus groups with an ethnically matched moderator were held to explore people's feelings, problems, and recommendations regarding medical research. Sessions were audiotaped, transcribed, and qualitatively analyzed with the constant comparison method. Only 12% of study participants said that they absolutely would not participate in a clinical study. Most agreed that research is vital. Filipino participants were more optimistic about the safety and value of joining in medical research. Hawaiian groups were more hesitant and fearful. Reasons for nonparticipation included negative feelings about the purpose and intent of clinical trials and language and cultural barriers. Suggestions on how to encourage API populations to participate in research investigations included improving peoples' understanding of the benefits to family and community. Hawaiian and Filipino groups differed only slightly in their assessments of the type of research needed in their communities. Recruitment campaigns must improve people's awareness of the process of informed consent, research safeguards, and benefits to family and community. Attention should focus on K-12 health education to use members of the younger generations to access and educate elders, involving persons with medical research experience as a recruitment resource, returning results to study participants, and increasing the number of healthcare professionals and researchers that are culturally and linguistically matched to the community.
Supporting public involvement in research design and grant development: a case study of a public involvement award scheme managed by a National Institute for Health Research (NIHR) Research Design Service (RDS).
Boote, Jonathan D; Twiddy, Maureen; Baird, Wendy; Birks, Yvonne; Clarke, Clare; Beever, Daniel
It is good practice for the public to be involved in developing health research. Resources should be available for researchers to fund the involvement of the public in the development of their grants. To describe a funding award scheme to support public involvement in grant development, managed by an NIHR Research Design Service (RDS). Case examples of how the award contributed to successful grant applications and findings from a recent evaluation of the scheme are presented. A case study of resource provision to support public involvement activities in one region of England. University and NHS-based researchers, and members of the public. Between 2009 and 2012, the RDS approved 45 public involvement funding awards (totalling nearly £19,000). These awards contributed to 27 submitted applications at the time of writing, of which 11 were successful (totalling over £7.5 million). The evaluation revealed difficulties encountered by some researchers when involving the public in grant development, which led to suggestions about how the scheme could be improved. This award scheme represents an efficient method of providing researchers with resources to involve the public in grant development and would appear to represent good value for money. © 2013 John Wiley & Sons Ltd.
Rogers, Morwenna; Bethel, Alison; Boddy, Kate
Research involving the public as partners often proves difficult to locate due to the variations in terms used to describe public involvement, and inability of medical databases to index this concept effectively. To design a search filter to identify literature where patient and public involvement (PPI) was used in health research. A reference standard of 172 PPI papers was formed. The references were divided into a development set and a test set. Search terms were identified from common words, phrases and synonyms in the development set. These terms were combined as a search strategy for medline via OvidSP, which was then tested for sensitivity against the test set. The resultant search filter was then assessed for sensitivity, specificity and precision using a previously published systematic review. The search filter was found to be highly sensitive 98.5% in initial testing. When tested against results generated by a 'real-life' systematic review, the filter had a specificity of 81%. However, sensitivity dropped to 58%. Adjustments to the population group of terms increased the sensitivity to 73%. The PPI filter designed for medline via OvidSP could aid information specialists and researchers trying to find literature specific to PPI. © 2016 Health Libraries Group.
Jinks, Clare; Carter, Pam; Rhodes, Carol; Taylor, Robert; Beech, Roger; Dziedzic, Krysia; Blackburn, Steven; Hughes, Rhian; Ong, Bie Nio
The international literature on patient and public involvement (PPI) in research covers a wide range of issues, including active lay involvement throughout the research cycle; roles that patients/public can play; assessing impact of PPI and recommendations for good PPI practice. One area of investigation that is less developed is the sustainability and impact of PPI beyond involvement in time-limited research projects. This paper focuses on the issues of sustainability, the importance of institutional leadership and the creation of a robust infrastructure in order to achieve long-term and wide-ranging PPI in research strategy and programmes. We use the case of a Primary Care Research Centre to provide a historical account of the evolution of PPI in the Centre and identified a number of key conceptual issues regarding infrastructure, resource allocation, working methods, roles and relationships. The paper concludes about the more general applicability of the Centre's model for the long-term sustainability of PPI in research.
Pérez Jolles, Mónica; Martinez, Maria; Garcia, San Juanita; Stein, Gabriela L; Thomas, Kathleen C
Comparative effectiveness research (CER) is supported by policymakers as a way to provide service providers and patients with evidence-based information to make better health-care decisions and ultimately improve services for patients. However, Latina/o patients are rarely involved as study advisors, and there is a lack of documentation on how their voices contribute to the research process when they are included as collaborators. The purpose of this article was to contribute to the literature by presenting concrete contributions of Latina/o parent involvement to study design, implementation and outcomes in the context of a CER study called Padres Efectivos (Parent Activation). Researchers facilitated a collaborative relationship with parents by establishing a mentor parent group. The contributions of parent involvement in the following stages of the research process are described: (i) proposal development, (ii) implementation of protocols, (iii) analysis plan and (iv) dissemination of results. Mentor parents' contributions helped tailor the content of the intervention to their needs during proposal, increased recruitment, validated the main outcome measure and added two important outcome measures, emphasized the importance of controlling for novice treatment status and developed innovative dissemination strategies. Mentor parents' guidance to the researchers has contributed to reaching recruitment goals, strengthened the study protocol, expanded findings, supported broad ownership of study implications and enriched the overall study data collection efforts. These findings can inform future research efforts seeking an active Latino parent collaboration and the timely incorporation of parent voices in each phase of the research process. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Dyson, Melissa C; Carpenter, Calvin B; Colby, Lesley A
Research with hazardous biologic materials (biohazards) is essential to the progress of medicine and science. The field of microbiology has rapidly advanced over the years, partially due to the development of new scientific methods such as recombinant DNA technology, synthetic biology, viral vectors, and the use of genetically modified animals. This research poses a potential risk to personnel as well as the public and the environment. Institutions must have appropriate oversight and take appropriate steps to mitigate the risks of working with these biologic hazards. This article will review responsibilities for institutional oversight of occupational health and safety for research involving biologic hazards.
Wilson, Patricia; Mathie, Elspeth; Poland, Fiona; Keenan, Julia; Howe, Amanda; Munday, Diane; Kendall, Sally; Cowe, Marion; Staniszewska, Sophie; Goodman, Claire
Objectives To explore how embedded patient and public involvement is within mainstream health research following two decades of policy-driven work to underpin health research with patient and public involvement in England. Methods Realist evaluation using Normalization Process Theory as a programme theory to understand what enabled patient and public involvement to be embedded as normal practice. Data were collected through a national scoping and survey, and qualitative methods to track patient and public involvement processes and impact over time within 22 nationally funded research projects. Results In research studies that were able to create reciprocal working relationships and to embed patient and public involvement this was contingent on: the purpose of patient and public involvement being clear; public contributors reflecting research end-beneficiaries; researchers understanding the value of patient and public involvement; patient and public involvement opportunities being provided throughout the research and ongoing evaluation of patient and public involvement. Key contested areas included: whether to measure patient and public involvement impact; seeking public contributors to maintain a balance between being research-aware and an outsider standpoint seen as 'authentically' lay; scaling-up patient and public involvement embedded within a research infrastructure rather than risk token presence and whether patient and public involvement can have a place within basic science. Conclusions While patient and public involvement can be well-integrated within all types of research, policy makers should take account of tensions that must be navigated in balancing moral and methodological imperatives.
Full Text Available Setting health research priorities is a complex and value–driven process. The introduction of the Child Health and Nutrition Research Initiative (CHNRI method has made the process of setting research priorities more transparent and inclusive, but much of the process remains in the hands of funders and researchers, as described in the previous two papers in this series. However, the value systems of numerous other important stakeholders, particularly those on the receiving end of health research products, are very rarely addressed in any process of priority setting. Inclusion of a larger and more diverse group of stakeholders in the process would result in a better reflection of the system of values of the broader community, resulting in recommendations that are more legitimate and acceptable.
Small, Will; Maher, Lisa; Kerr, Thomas
Ethnographic research among people who inject drugs (PWID) involves complex ethical issues. While ethical review frameworks have been critiqued by social scientists, there is a lack of social science research examining institutional ethical review processes, particularly in relation to ethnographic work. This case study describes the institutional ethical review of an ethnographic research project using observational fieldwork and in-depth interviews to examine injection drug use. The review process and the salient concerns of the review committee are recounted, and the investigators' responses to the committee's concerns and requests are described to illustrate how key issues were resolved. The review committee expressed concerns regarding researcher safety when conducting fieldwork, and the investigators were asked to liaise with the police regarding the proposed research. An ongoing dialogue with the institutional review committee regarding researcher safety and autonomy from police involvement, as well as formal consultation with a local drug user group and solicitation of opinions from external experts, helped to resolve these issues. This case study suggests that ethical review processes can be particularly challenging for ethnographic projects focused on illegal behaviours, and that while some challenges could be mediated by modifying existing ethical review procedures, there is a need for legislation that provides legal protection of research data and participant confidentiality. Copyright © 2013 Elsevier Ltd. All rights reserved.
A Human Research Ethics Committee (HREC) is required to scrutinise the protocols of clinical drug trials that recruit patients as participants. If the study involves exposing the participants to ionizing radiation the information provided to the participant should contain a radiation risk statement that is understandable by the Committee and the participant. The information that should be included in the risk statement is available from a variety of published sources and is discussed. The ARPANSA Code of Practice Exposure of Humans to Ionizing Radiation for Research Purposes (2005) states explicitly what the responsibilities of the researcher and the HREC are. Some research protocols do not provide the information required by good radiation protection practice and explicitly called for by the Code. Nine points (including: state that ionizing radiation is involved; that the radiation is additional to standard care; the effective dose to be received; the dose compared to natural background; the dose to the most exposed organs; a statement of risk; the benefits accruing from the exposure; ask the participant about previous exposures; name a contact person from whom information may be sought) that should be considered for inclusion in the participant information are presented and discussed. An example of a radiation risk statement is provided
Pitak-Arnnop, P; Sader, R; Hervé, C; Dhanuthai, K; Bertrand, J-Ch; Hemprich, A
This retrospective observational study investigated the frequency of reporting ethical approval and informed consent in recently published oral and maxillofacial surgery (OMS) research involving human subjects. All research involving human subjects published in the International Journal of Oral and Maxillofacial Surgery, Journal of Oral and Maxillofacial Surgery, British Journal of Oral and Maxillofacial Surgery, and Journal of Cranio-Maxillofacial Surgery during January to June 2005-2007 were analysed for disclosure of ethical approval by a local ethical committee and obtaining informed consent from the subjects. 534 articles were identified; ethical approval was documented in 118 (22%) and individual patient consent in 135 (25%). 355 reports (67%) did not include a statement on ethical approval or informed consent and only 74 reports (14%) disclosed statements of both. Ethical documentation in retrospective and observational studies was scant; 12% of randomised controlled trials and 38% of non-random trials did not report both of ethical protections. Most recent OMS publications involving humans failed to mention ethical review or subjects' consent. Authors must adhere to the international research ethics guidelines and journal instructions, while editors should play a gatekeeper role to protect research participants, uphold scientific integrity and maintain public trust in the experimental process and OMS profession.
Full Text Available Abstract This paper offers a state-of-the-art overview of the intertwined privacy, confidentiality, and security issues that are commonly encountered in health research involving disaggregate geographic data about individuals. Key definitions are provided, along with some examples of actual and potential security and confidentiality breaches and related incidents that captured mainstream media and public interest in recent months and years. The paper then goes on to present a brief survey of the research literature on location privacy/confidentiality concerns and on privacy-preserving solutions in conventional health research and beyond, touching on the emerging privacy issues associated with online consumer geoinformatics and location-based services. The 'missing ring' (in many treatments of the topic of data security is also discussed. Personal information and privacy legislations in two countries, Canada and the UK, are covered, as well as some examples of recent research projects and events about the subject. Select highlights from a June 2009 URISA (Urban and Regional Information Systems Association workshop entitled 'Protecting Privacy and Confidentiality of Geographic Data in Health Research' are then presented. The paper concludes by briefly charting the complexity of the domain and the many challenges associated with it, and proposing a novel, 'one stop shop' case-based reasoning framework to streamline the provision of clear and individualised guidance for the design and approval of new research projects (involving geographical identifiers about individuals, including crisp recommendations on which specific privacy-preserving solutions and approaches would be suitable in each case.
Porteri, Corinna; Petrini, Carlo
Alzheimer's disease is a very common, progressive and still incurable disease. Future possibilities for its cure lie in the promotion of research that will increase our knowledge of the disorder's causes and lead to the discovery of effective remedies. Such research will necessarily involve individuals suffering from Alzheimer's disease. This raises the controversial issue of whether patients with Alzheimer's disease are competent to give their consent for research participation. We discuss the case of subjects with Alzheimer's disease who may have impaired decision-making capacity and who could be involved in research protocols, taking into consideration aspects of the Italian normative framework, which requires a court-appointed legal representative for patients who are not able to give consent and does not recognise the legal value of advance directives. We show that this normative framework risks preventing individuals with Alzheimer's disease from taking part in research and that a new policy that favours research while promoting respect for patients' well-being and rights needs to be implemented. We believe that concerns about the difficulty of obtaining fully valid consent of patients with Alzheimer's disease should not prevent them from participating in clinical trials and benefiting from scientific progress. Therefore, we argue that the requirement for patients to have a legal representative may not be the best solution in all countries and clinical situations, and suggest promoting the role of patients' family members in the decision-making process. In addition, we outline the possible role of advance directives and ethics committees.
Boulos, Maged N Kamel; Curtis, Andrew J; Abdelmalik, Philip
This paper offers a state-of-the-art overview of the intertwined privacy, confidentiality, and security issues that are commonly encountered in health research involving disaggregate geographic data about individuals. Key definitions are provided, along with some examples of actual and potential security and confidentiality breaches and related incidents that captured mainstream media and public interest in recent months and years. The paper then goes on to present a brief survey of the research literature on location privacy/confidentiality concerns and on privacy-preserving solutions in conventional health research and beyond, touching on the emerging privacy issues associated with online consumer geoinformatics and location-based services. The 'missing ring' (in many treatments of the topic) of data security is also discussed. Personal information and privacy legislations in two countries, Canada and the UK, are covered, as well as some examples of recent research projects and events about the subject. Select highlights from a June 2009 URISA (Urban and Regional Information Systems Association) workshop entitled 'Protecting Privacy and Confidentiality of Geographic Data in Health Research' are then presented. The paper concludes by briefly charting the complexity of the domain and the many challenges associated with it, and proposing a novel, 'one stop shop' case-based reasoning framework to streamline the provision of clear and individualised guidance for the design and approval of new research projects (involving geographical identifiers about individuals), including crisp recommendations on which specific privacy-preserving solutions and approaches would be suitable in each case.
Williams, David M; Ussher, Michael; Dunsiger, Shira; Miranda, Robert; Gwaltney, Chad J; Monti, Peter M; Emerson, Jessica
Aerobic exercise has been proposed as a stand-alone or adjunct smoking cessation treatment, but findings have been mixed. Laboratory studies have shown that individual exercise sessions lead to decreases in withdrawal symptoms and cigarette cravings, but findings are limited by lack of follow-up and artificial settings. On the other hand, smoking cessation treatment RCTs have generally failed to show positive effects of exercise on smoking cessation, but have been plagued by poor and/or unverified compliance with exercise programs. This paper describes the rationale and design for Quit for Health (QFH)--an RCT designed to determine the efficacy of aerobic exercise as an adjunct smoking cessation treatment among women. To overcome limitations of previous research, compliance with the exercise (and wellness contact control) program is incentivized and directly observed, and ecological momentary assessment is used to examine change over time in withdrawal symptoms and cigarette cravings in participants' natural environments. Copyright © 2013 Elsevier Inc. All rights reserved.
Nørgaard, Lotte Stig; Sørensen, Ellen Westh
Introduction The focus in clinical pharmacy practice is and has for the last 30-35 years been on changing the role of pharmacy staff into service orientation and patient counselling. One way of doing this is by involving staff in change process and as a researcher to take part in the change process by establishing partnerships with staff. On the background of the authors' widespread action research (AR)-based experiences, recommendations and comments for how to conduct an AR-study is described, and one of their AR-based studies illustrate the methodology and the research methods used. Methodology AR is defined as an approach to research which is based on a problem-solving relationship between researchers and clients, which aims at both solving a problem and at collaboratively generating new knowledge. Research questions relevant in AR-studies are: what was the working process in this change oriented study? What learning and/or changes took place? What challenges/pitfalls had to be overcome? What were the influence/consequences for the involved parts? When to use If you want to implement new services and want to involve staff and others in the process, an AR methodology is very suitable. The basic advantages of doing AR-based studies are grounded in their participatory and democratic basis and their starting point in problems experienced in practice. Limitations Some of the limitations in AR-studies are that neither of the participants in a project steering group are the only ones to decide. Furthermore, the collective process makes the decision-making procedures relatively complex.
Wendler, David; Shah, Seema
There is wide agreement that communities in lower-income countries should benefit when they participate in multinational research. Debate now focuses on how and to what extent these communities should benefit. This debate has identified compelling reasons to reject the claim that whatever benefits a community agrees to accept are necessarily fair. Yet, those who conduct clinical research may conclude from this rejection that there is no reason to involve communities in the process of deciding how they benefit. Against this possibility, the present manuscript argues that involving host communities in this process helps to promote four important goals: (1) protecting host communities, (2) respecting host communities, (3) promoting transparency, and (4) enhancing social value. Published by Oxford University Press on behalf of the Journal of Medicine and Philosophy, Inc. 2015.
Diffin, Janet; Spence, Michael; Spencer, Rebecca; Mellor, Peter; Grande, Gunn
It is important to ensure regional variances are considered when setting future end-of-life research priorities, given the differing demographics and service provision. This project sought to identify end-of-life research priorities within Greater Manchester (United Kingdom). Following an initial scoping exercise, six topics within the 10 national priorities outlined by The Palliative and end-of-life care Priority Setting Partnership were selected for exploration. A workshop involving 32 healthcare professionals and a consultation process with 26 family carers was conducted. Healthcare professionals and carers selected and discussed the topics important to them. The topics selected most frequently by both healthcare professionals and carers were 'Access to 24 hour care', 'Planning end-of-life care in advance' and 'Staff and carer education'. Healthcare professionals also developed research questions for their topics of choice which were refined to incorporate carers' views. These questions are an important starting point for future end-of-life research within Greater Manchester.
Lees, David; Procter, Nicholas; Fassett, Denise; Handley, Christine
To describe the research model developed and successfully deployed as part of a multi-method qualitative study investigating suicidal service-users' experiences of mental health nursing care. Quality mental health care is essential to limiting the occurrence and burden of suicide, however there is a lack of relevant research informing practice in this context. Research utilising first-person accounts of suicidality is of particular importance to expanding the existing evidence base. However, conducting ethical research to support this imperative is challenging. The model discussed here illustrates specific and more generally applicable principles for qualitative research regarding sensitive topics and involving potentially vulnerable service-users. Researching into mental health service users with first-person experience of suicidality requires stakeholder and institutional support, researcher competency, and participant recruitment, consent, confidentiality, support and protection. Research with service users into their experiences of sensitive issues such as suicidality can result in rich and valuable data, and may also provide positive experiences of collaboration and inclusivity. If challenges are not met, objectification and marginalisation of service-users may be reinforced, and limitations in the evidence base and service provision may be perpetuated.
Walker, Sarah Cusworth; Bishop, Asia S; Pullmann, Michael D; Bauer, Grace
Family involvement is recognized as a critical element of service planning for children's mental health, welfare and education. For the juvenile justice system, however, parents' roles in this system are complex due to youths' legal rights, public safety, a process which can legally position parents as plaintiffs, and a historical legacy of blaming parents for youth indiscretions. Three recent national surveys of juvenile justice-involved parents reveal that the current paradigm elicits feelings of stress, shame and distrust among parents and is likely leading to worse outcomes for youth, families and communities. While research on the impact of family involvement in the justice system is starting to emerge, the field currently has no organizing framework to guide a research agenda, interpret outcomes or translate findings for practitioners. We propose a research framework for family involvement that is informed by a comprehensive review and content analysis of current, published arguments for family involvement in juvenile justice along with a synthesis of family involvement efforts in other child-serving systems. In this model, family involvement is presented as an ascending, ordinal concept beginning with (1) exclusion, and moving toward climates characterized by (2) information-giving, (3) information-eliciting and (4) full, decision-making partnerships. Specific examples of how courts and facilities might align with these levels are described. Further, the model makes predictions for how involvement will impact outcomes at multiple levels with applications for other child-serving systems.
Tong, Vincent C. H.
The study of Earth Sciences requires an interdisciplinary approach as it involves understanding scientific knowledge originating from a wide spectrum of research areas. Not only does it include subjects ranging from, for instance, hydrogeology to deep crustal seismology and from climate science to oceanography, but it also has many direct applications in closely related disciplines such as environmental engineering and natural resources management. While research crossing traditional disciplinary boundaries in geosciences is becoming increasingly common, there is only limited integration of interdisciplinary research in the teaching of the subject. Given that the transition from undergraduate education based on subject modules to postgraduate interdisciplinary research is never easy, such integration is a highly desirable pedagogical approach at both undergraduate and postgraduate levels. My presentation is based on a recent teaching project involving novel design of an undergraduate course. The course is implemented in order to address the synergy between research and teaching (Tong, 2009). This project has been shown to be effective and successful in teaching geosciences undergraduates at the University of London. The module consists of studying core geophysical principles and linking them directly to a selection of recently published research papers in a wide range of interdisciplinary applications. Research reviewing and reporting techniques are systematically developed, practised and fully integrated into teaching of the core scientific theories. A fully-aligned assignment with a feedback website invites the students to reflect on the scientific knowledge and the study skills related to research literature they have acquired in the course. This teaching project has been recognized by a teaching award (http://www.clpd.bbk.ac.uk/staff/BETA). In this presentation, I will discuss how undergraduate teaching with a focus on research literature in Earth Sciences can
From an ethical perspective, good governance involves the translation of collective moral intentions into effective and accountable institutional actions. With respect to the use of human subjects in Canadian health research, I contend that there have been many good intentions but very little in the way of appropriate governance arrangements. Hence, the question, "who minds the store?" is especially acute with respect to the protection of vulnerable individuals and groups that are typically recruited as subjects for health research in Canada. Beyond diagnosing failures in governance and their causes, I offer suggestions for significant reforms, including evidence-based ethics assessment, independent oversight, and greater participation of research subjects in governance. I will close with some more general reflections on ethics, law, and governance.
Ridky, R. W.
At some point in their careers, many researchers are motivated to share what they have learned with a wider audience. As their studies mature, and national awareness for more effective integration of research and education intensifies, researchers are increasingly directing efforts toward informal and pre-college educational sectors. Each initiative comes with good intentions, but many fall short of intended benefit. Quality education and outreach programs develop from the same precepts that shape research programs of high professional standing. A researcher is most likely to make useful contributions when they are willing and able to implement familiar research principles to broader educational endeavors. As with research endeavors, principles of significance, literacy, design, feasibility, analysis and dissemination need to be regarded as essential indicators of education program quality. It is helpful to provide researchers who are contemplating more active educational involvement with more than casual understanding of the purposes underlying their pending contributions. Such understanding is premised on the tenet that education and research are always in the public service and therefore inextricably bound at all levels. Both research and education have, as their ultimate goal, enhanced scientific literacy of the citizenry. By example, it can be shown that the best-supported programs, within government and academia, recognize that the way they translate knowledge and make it available to scientific organizations and the public is critical to their intrinsic societal value and level of support. As education conjures up a host of operational meanings arising from one's own values and experiences, the knowledge researchers bring to pre-college and informal educational settings is often based on personal experience rather than on education research, practice and policy. Researchers may believe that because they spent 13 years in school, an additional 4 years at a
Wilson, Christine Brown; Clissett, Philip
Aim The purpose of this paper is to identify practical suggestions that could enable other researchers to consider how quality may be evidenced using constructivist principles including the perspectives of older people and their caregivers. Background Constructivism suggests that reality is part of a social construction, which holds different meanings for each person, in which people are active agents, making autonomous decisions. This approach to research has been identified as suitable for health and social care professionals because these underpinning principles reflect the values of these professions, facilitating the involvement of users and carers. The authenticity criteria have been developed to reflect these philosophical principles but have been criticized for their inaccessible language. To incorporate user and carer perspectives, the criteria have been revised into a more accessible model matrix known as the AldreVast Sjuharad criteria. Discussion This paper reports on two constructivist studies that explored relationships between older people, families and staff in different settings – the community and care homes. Examples from both settings demonstrate how the perspectives of users and carers were incorporated throughout the research process. Following the AldreVast Sjuharad model matrix, practical guidance is provided on how the quality of constructivist research may be implemented in nursing research. Conclusions The different settings in this paper influenced how the AldreVast Sjuharad model matrix was applied. Further work is needed in exploring how the perspective of users and carers may be incorporated into the quality process of constructivist research. PMID:21073505
The majority of studies included in recent reviews of impact for public and patient involvement (PPI) in health research had a qualitative design. PPI in solely quantitative designs is underexplored, particularly its impact on statistical analysis. Statisticians in practice have a long history of working in both consultative (indirect) and collaborative (direct) roles in health research, yet their perspective on PPI in quantitative health research has never been explicitly examined. To explore the potential and challenges of PPI from a statistical perspective at distinct stages of quantitative research, that is sampling, measurement and statistical analysis, distinguishing between indirect and direct PPI. Statistical analysis is underpinned by having a representative sample, and a collaborative or direct approach to PPI may help achieve that by supporting access to and increasing participation of under-represented groups in the population. Acknowledging and valuing the role of lay knowledge of the context in statistical analysis and in deciding what variables to measure may support collective learning and advance scientific understanding, as evidenced by the use of participatory modelling in other disciplines. A recurring issue for quantitative researchers, which reflects quantitative sampling methods, is the selection and required number of PPI contributors, and this requires further methodological development. Direct approaches to PPI in quantitative health research may potentially increase its impact, but the facilitation and partnership skills required may require further training for all stakeholders, including statisticians. © 2018 The Authors Health Expectations published by John Wiley & Sons Ltd.
Taylor, Rachel M; Mohain, Jasjeet; Gibson, Faith; Solanki, Anita; Whelan, Jeremy; Fern, Lorna A
Patient and public involvement (PPI) is central to research and service planning. Identifying effective, meaningful ways of involvement is challenging. The cohort study 'Do specialist services for teenagers and young adults with cancer add value?' follows young people for three years, examining outcomes associated with specialist care. Participant retention in longitudinal research can be problematic potentially jeopardising study completion. Maximising study awareness through high impact branding and publicity may improve study retention. Study names are typically generated by researchers rather than designed with patients. We aimed to involve young people in developing a brand identity and name to 'Do specialist services for teenagers and young adults with cancer add value?'. Nine young people aged 17-26 years diagnosed with cancer when aged 14-25 years participated in a one day workshop with further data collection at a patient conference. Methodology was similar to conventional branding and naming exercises and was divided into six stages. The workshop comprised five stages. Stage 1: 'What's in a brand' allowed young people to enquire why brands/logos are important, Stage 2: 'Brand Transformation' identified what young people needed to know and believe about the study when approached about participation, Stage 3: 'Brand Essence' determined how we wanted the study to be perceived by young people, Stage 4: 'What's in a name' identified potential names for the study. Stage 5: 'Logo creation' assembled the mood and feel of logos. Stage 6 was logo design and an electronic survey of 249 young people attending a patient conference. BRIGHTLIGHT was the final study name and the brand essence (or study personality) was friendly, supportive and inspiring. Four logos were designed and the final logo received 47% (n = 115) of votes. Acceptance and retention to BRIGHTLIGHT is higher than anticipated (80% versus 60%), this may be related to our integral PPI strategy. We
Bolis, Ivan; Brunoro, Claudio; Sznelwar, Laerte Idal
The present action research article is linked to an ergonomics project in a university hospital. The author's proposal is to focus action on the effective worker involvement required for the creation of spaces/mechanisms within organizations where people can enhance cooperation and deliberation on matters relating to work. For this purpose, a committee was introduced to assist in finding problems and solutions directly in work situations, so that workers could experience relative autonomy allowing them to develop procedures and choose tools appropriate to their own real needs. Based on this organizational implementation and on subsequent interviews, the practical results are analyzed and related to employee involvement. One can conclude that workers in all areas of the organization can be active elements for improving working conditions and productivity in companies.
Evalina van Wijk RN, PhD
Full Text Available The purpose of the researcher's study was to examine the meaning that intimate partners of female rape victims attached to their lived experiences after the rape. The conduct of qualitative research concerning non-offending partners of female rape victims, however, often involves multifaceted ethical and practical challenges, which can be managed through the use of pilot studies. The pilot study described in this report had three objectives. The first was to pretest and refine the proposed method for locating, accessing, and recruiting intimate partners of female rape victims, within the first two weeks after the rape, for participation in a six-month longitudinal study. The second objective was to identify and prevent all possible risk factors in the proposed recruitment and data collection methods that could harm the participants' safety during the main study. The third objective was to determine the feasibility of the main study, in terms of the limited financial and human resources available. The pilot phase was valuable in identifying ethical and methodological problems during the recruitment of participants and collection of data. It allowed for methodological adjustments prior to the main study and confirmed the feasibility of the overall research design. A pilot, pretesting phase is therefore seen as an essential component of a qualitative study involving a vulnerable population.
Viktor M. Fedoseyev
Full Text Available Introduction: questions of integration of mathematical with engineering training in educational process of higher education institution are explored. The existing technologies of the integrated training are analyzed, and the project-oriented direction is distinguished. Research involving students as an organisational and methodical form of training bachelors of the technical speciali sations is discussed. Materials and Methods: results of article are based on researches of tendencies of development of technical and mathematical education, works on the theory and methodology of pedagogical integration, methodology of mathematics and technical science. Methods of historical and pedagogical research, analytical, a method of mathematical modeling were used. Results: the main content of the paper is to make discussion of experience in developing and using integrated educational tasks in real educational process. Discussion is based on a specific technological assignment including a number of mathematical tasks used as a subject of research for students. In the assignment a special place is allocated to the questions reflecting the interplay of a technical task with a mathematical method of research highlighting the objective significance of mathematics as a method to solve engineering problems. Discussion and Conclusions: the paper gives reasons to conditions for using research work with students as an organisational and methodical form of integrated training in mathematics. In realisation of educational technology it is logical to apply the method of projects. It is necessary to formulate a task as an engineering project: to set an engineering objective of research, to formulate specifications; to differentiate between engineering and mathematical tasks of the project, to make actual interrelations between them; the mathematical part of the project has to be a body of research; assessment of the project must be carried out not only accounting for
Vale Claire L
Full Text Available Abstract Background We aimed to establish levels of consumer involvement in randomised controlled trials (RCTs, meta-analyses and other studies carried out by the UK Medical Research Council (MRC Clinical Trials Unit across the range of research programs, predominantly in cancer and HIV. Methods Staff responsible for studies that were included in a Unit Progress Report (MRC CTU, April 2009 were asked to complete a semi-structured questionnaire survey regarding consumer involvement. This was defined as active involvement of consumers as partners in the research process and not as subjects of that research. The electronic questionnaires combined open and closed questions, intended to capture quantitative and qualitative information on whether studies had involved consumers; types of activities undertaken; recruitment and support; advantages and disadvantages of involvement and its perceived impact on aspects of the research. Results Between October 2009 and April 2010, 138 completed questionnaires (86% were returned. Studies had been conducted over a 20 year period from 1989, and around half were in cancer; 30% in HIV and 20% were in other disease areas including arthritis, tuberculosis and blood transfusion medicine. Forty-three studies (31% had some consumer involvement, most commonly as members of trial management groups (TMG [88%]. A number of positive impacts on both the research and the researcher were identified. Researchers generally felt involvement was worthwhile and some felt that consumer involvement had improved the credibility of the research. Benefits in design and quality, trial recruitment, dissemination and decision making were also perceived. Researchers felt they learned from consumer involvement, albeit that there were some barriers. Conclusions Whilst most researchers identified benefits of involving consumers, most of studies included in the survey had no involvement. Information from this survey will inform the development
Vale, Claire L; Thompson, Lindsay C; Murphy, Claire; Forcat, Silvia; Hanley, Bec
We aimed to establish levels of consumer involvement in randomised controlled trials (RCTs), meta-analyses and other studies carried out by the UK Medical Research Council (MRC) Clinical Trials Unit across the range of research programs, predominantly in cancer and HIV. Staff responsible for studies that were included in a Unit Progress Report (MRC CTU, April 2009) were asked to complete a semi-structured questionnaire survey regarding consumer involvement. This was defined as active involvement of consumers as partners in the research process and not as subjects of that research. The electronic questionnaires combined open and closed questions, intended to capture quantitative and qualitative information on whether studies had involved consumers; types of activities undertaken; recruitment and support; advantages and disadvantages of involvement and its perceived impact on aspects of the research. Between October 2009 and April 2010, 138 completed questionnaires (86%) were returned. Studies had been conducted over a 20 year period from 1989, and around half were in cancer; 30% in HIV and 20% were in other disease areas including arthritis, tuberculosis and blood transfusion medicine. Forty-three studies (31%) had some consumer involvement, most commonly as members of trial management groups (TMG) [88%]. A number of positive impacts on both the research and the researcher were identified. Researchers generally felt involvement was worthwhile and some felt that consumer involvement had improved the credibility of the research. Benefits in design and quality, trial recruitment, dissemination and decision making were also perceived. Researchers felt they learned from consumer involvement, albeit that there were some barriers. Whilst most researchers identified benefits of involving consumers, most of studies included in the survey had no involvement. Information from this survey will inform the development of a unit policy on consumer involvement, to guide future
Full Text Available The directive 2001/20/UE and the research involving patients with docs. Research involving patients with disorders of consciousness (DOCs deserves special ethical and legal attention because of its Janus-faced nature. On the one hand, it raises concerns about the risk to expose the involved subjects to disproportionate risks not respecting their individual dignity, particularly their right to be cared for; on the other hand, research is an essential tool in order to improve the clinical condition of patients with DOCs. The present paper concerns the ethical and legal dimensions of biomedical research involving patients with disorders of consciousness. In particular, it focuses on informed consent to experimental treatments, which is a challenging issue both from an ethical and legal point of view. The first part reads the Directive 2001/20/EU in the light of the experimentation of patients with DOCs, and suggests a revision in order to better assess the issue of informed consent. The particular case of informed consent for observational studies of non-communicative patients. The second part presents an informed consent form for studies through video-recording of patients unable to communicate their own consent. This form has been elaborated by the bioethics unit of the project "Review of the nosography of vegetative states: application of methods of behavioral analysis to individuals in coma or vegetative state" developed at the Italian National Institute of Health. Relevance of the suggested form. The paper describes the conceptual framework of the form for informed consent to studies through video-recoding, which is a relevant example of what issues should be included in an informed consent for any type of studies through video-recording of patients unable to express their own consent. The article has been sent on November the 7th 2013, before the adoption of the Regulation (EU no. 536/2014 (and consequent abrogation of the Directive 2001
Smith, Susan C; Penumetcha, Meera
Given the foundational importance of literature searching skills to later stages of research and, ultimately, evidence-based practice, the authors wanted to assess a unique strategy for teaching such skills. This pilot study describes the results of an undergraduate nutrition research course in which a librarian lead several class sessions. The goal of this study was to assess students' perceptions, attitudes and use of research literature and resources before and after a course partially taught by a librarian. Twenty-seven students enrolled in an undergraduate Introduction to Research course at Georgia State University were given pre- and post-test questionnaires at the beginning and end of a course that included three librarian-led class sessions. Most of the results indicate that the repeated involvement of a librarian enriched this particular undergraduate research course. By the end of the course, students were more comfortable in libraries and with using library resources; they used the campus library more frequently; they were more confident in their ability to find high-quality information on nutrition-related topics and identify strengths and weaknesses of different information sources; and they felt they gained skills that will help them achieve their educational and career goals.
Hassan, Lamiece; Swarbrick, Caroline; Sanders, Caroline; Parker, Angela; Machin, Matt; Tully, Mary P; Ainsworth, John
There are a growing number of mobile phones, watches and electronic devices which can be worn on the body to track aspects of health and well-being, such as daily steps, sleep and exercise. Dementia researchers think that these devices could potentially be used as part of future research projects, for example to help spot changes in daily activity that may signal the early symptoms of dementia. We asked a range of older people, including people living with dementia and their carers, to participate in interactive discussions about how future participants might find using these devices as part of research projects. We also invited volunteers to borrow a range of devices to test at home, giving them further insights. Discussions revealed that people were generally supportive of this type of research, provided they gave informed consent and that devices were discreet, comfortable and easy to use. They also valued technical support and regular feedback on study progress to encourage ongoing participation. These findings were used to develop a pool of devices for researchers, with computer software and written guidance to help plan, design and support studies. Our work shows that when given the right opportunities, people who are affected by dementia can provide valuable insights that can enhance the design, delivery and quality of future research. Background Increasingly, researchers are recognising the potential for connected health devices, including smartphones and smartwatches, to generate high resolution data about patterns of daily activity and health outcomes. One aim of the Dementias Platform UK (DPUK) project is to provide researchers with a secure means to collect, collate and link data generated by such devices, thereby accelerating this type of research in the field of dementia. We aimed to involve members of the public in discussions about the acceptability and feasibility of different devices and research designs to inform the development of a device pool
Acid drainage from historic mining activities has affected the water quality and aquatic biota of Soda Butte Creek upstream of Yellowstone National Park. Numerous investigations focusing on metals contamination have been conducted in the Soda Butte Creek basin, but interpretations of how metals contamination is currently impacting Soda Butte Creek differ greatly. A retrospective analysis of previous research on metal loading in Soda Butte Creek was completed to provide summaries of studies pertinent to metal loading in Soda Butte Creek and to identify data gaps warranting further investigation. Identification and quantification of the sources of metal loading to Soda Butte Creek was recognized as a significant data gap. The McLaren Mine tailings impoundment and mill site has long been identified as a source of metals but its contribution relative to the total metal load entering Yellowstone National Park was unknown. A tracer-injection and synoptic-sampling study was designed to determine metal loads upstream of Yellowstone National Park.A tracer-injection and synoptic-sampling study was conducted on an 8,511-meter reach of Soda Butte Creek from upstream of the McLaren Mine tailings impoundment and mill site downstream to the Yellowstone National Park boundary in August 1999. Synoptic-sampling sites were selected to divide the creek into discrete segments. A lithium bromide tracer was injected continuously into Soda Butte Creek for 24.5 hours. Downstream dilution of the tracer and current-meter measurements were used to calculate the stream discharge. Stream discharge values, combined with constituent concentrations obtained by synoptic sampling, were used to quantify constituent loading in each segment of Soda Butte Creek.Loads were calculated for dissolved calcium, silica, and sulfate, as well as for dissolved and total-recoverable iron, aluminum, and manganese. Loads were not calculated for cadmium, copper, lead, and zinc because these elements were infrequently
Alkhaleefah, Tarek A.
Considering the various classifications of L1 and L2 reading strategies in previous think-aloud studies, the present review aims to provide a comprehensive look into those various taxonomies reported in major L1 and L2 reading studies. The rationale for this review is not only to offer a comprehensive overview of the different classifications in…
Kearney, Anna; Williamson, Paula; Young, Bridget; Bagley, Heather; Gamble, Carrol; Denegri, Simon; Muir, Delia; Simon, Natalie A; Thomas, Stephen; Elliot, Jim T; Bulbeck, Helen; Crocker, Joanna C; Planner, Claire; Vale, Claire; Clarke, Mike; Sprosen, Tim; Woolfall, Kerry
Despite increasing international interest, there is a lack of evidence about the most efficient, effective and acceptable ways to implement patient and public involvement (PPI) in clinical trials. To identify the priorities of UK PPI stakeholders for methodological research to help resolve uncertainties about PPI in clinical trials. A modified Delphi process including a two round online survey and a stakeholder consensus meeting. In total, 237 people registered of whom 219 (92%) completed the first round. One hundred and eighty-seven of 219 (85%) completed the second; 25 stakeholders attended the consensus meeting. Round 1 of the survey comprised 36 topics; 42 topics were considered in round 2 and at the consensus meeting. Approximately 96% of meeting participants rated the top three topics as equally important. These were as follows: developing strong and productive working relationships between researchers and PPI contributors; exploring PPI practices in selecting trial outcomes of importance to patients; and a systematic review of PPI activity to improve the accessibility and usefulness of trial information (eg participant information sheets) for participants. The prioritized methodological research topics indicate important areas of uncertainty about PPI in trials. Addressing these uncertainties will be critical to enhancing PPI. Our findings should be used in the planning and funding of PPI in clinical trials to help focus research efforts and minimize waste. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Mitchell, Jude F; Boisvert, Chantal J; Reuter, Jon D; Reynolds, John H; Leblanc, Mathias
Macaques are the most common animal model for studies in vision research, and due to their high value as research subjects, often continue to participate in studies well into old age. As is true in humans, visual acuity in macaques is susceptible to refractive errors. Here we report a case study in which an aged macaque demonstrated clear impairment in visual acuity according to performance on a demanding behavioral task. Refraction demonstrated bilateral myopia that significantly affected behavioral and visual tasks. Using corrective lenses, we were able to restore visual acuity. After correction of myopia, the macaque's performance on behavioral tasks was comparable to that of a healthy control. We screened 20 other male macaques to assess the incidence of refractive errors and ocular pathologies in a larger population. Hyperopia was the most frequent ametropia but was mild in all cases. A second macaque had mild myopia and astigmatism in one eye. There were no other pathologies observed on ocular examination. We developed a simple behavioral task that visual research laboratories could use to test visual acuity in macaques. The test was reliable and easily learned by the animals in 1 d. This case study stresses the importance of screening macaques involved in visual science for refractive errors and ocular pathologies to ensure the quality of research; we also provide simple methodology for screening visual acuity in these animals.
Howe, A; Mathie, E; Munday, D; Cowe, M; Goodman, C; Keenan, J; Kendall, S; Poland, F; Staniszewska, S; Wilson, P
Patient and public involvement (PPI) in research is very important, and funders and the NHS all expect this to happen. What this means in practice, and how to make it really successful, is therefore an important research question. This article analyses the experience of a research team using PPI, and makes recommendations on strengthening PPI in research. There were different PPI roles in our study - some people were part of the research team: some were on the advisory group; and there were patient groups who gave specific feedback on how to make research work better for their needs. We used minutes, other written documents, and structured individual and group reflections to learn from our own experiences over time. The main findings were:- for researchers and those in a PPI role to work in partnership, project structures must allow flexibility and responsiveness to different people's ideas and needs; a named link person can ensure support; PPI representatives need to feel fully included in the research; make clear what is expected for all roles; and ensure enough time and funding to allow meaningful involvement. Some roles brought more demands but also more rewards than others - highlighting that it is important that people giving up their time to help with research experience gains from doing so. Those contributing to PPI on a regular basis may want to learn new skills, rather than always doing the same things. Researchers and the public need to find ways to develop roles in PPI over time. We also found that, even for a team with expertise in PPI, there was a need both for understanding of different ways to contribute, and an evolving 'normalisation' of new ways of working together over time, which both enriched the process and the outputs. Background Patient and public involvement (PPI) is now an expectation of research funders, in the UK, but there is relatively little published literature on what this means in practice - nor is there much evaluative research
Full Text Available An investigation of factors that facilitate the utilization of research evidence among faculty, staff, and volunteers in the 4-H Youth Development Program is presented in this paper. Participants (N= 368; 86 4-H faculty, 153 staff, and 129 volunteers represented 35 states; structural equation modeling was utilized in the analyses. Results of the path analysis explained 56% of variance in research utilization and 28% in research utilization self-efficacy. Among the factors impacting research utilization, self-efficacy played the most important role. In turn, self-efficacy for research utilization was positively influenced by participants’ learning goal orientation, frequency of 4-H training during the last 12 months, education in research-related areas, and investigative career interests. In addition, 4-H staff who were exposed to research at higher levels reported higher research utilization self-efficacy. The findings reinforce the importance of fostering research utilization self-efficacy among 4-H faculty, staff, and volunteers. Among the suggestions presented are regular 4-H training opportunities and on-going exposure to program evaluation and program improvement experiences.
Baxter, Susan; Muir, Delia; Brereton, Louise; Allmark, Christine; Barber, Rosemary; Harris, Lydia; Hodges, Brian; Khan, Samaira; Baird, Wendy
The National Institute for Health Research (NIHR) Research Design Service (RDS) for Yorkshire and Humber has been running a public involvement funding scheme since 2008. This scheme awards researchers a small amount of money to help them get involvement from patients and/or the public. Involvement activities take place at the time when researchers are planning studies, and when they are completing application forms to request funding for a proposed research project. After the public involvement activities researchers are asked to write a report for the RDS describing what they did with the public involvement funding. This study analysed those reports using an approach which included members of a public involvement panel in the data analysis process. The aim of the work was to see what the views and experiences of researchers who received funding were, and what might be learned for the future of the scheme. Twenty five reports were analysed. Four main themes were identified, these described: the added value of public involvement; aspects to consider when planning and designing public involvement; different roles of public contributors; and aspects of valuing public member contributions. The group approach to analysis was successful in enabling involvement of a variety of individuals in the process. The findings of the study provide evidence of the value of public involvement during the development of applications for research funding. The results also indicate that researchers recognise the variety in potential roles for the public in research, and acknowledge how involvement adds value to studies. Background A regional Research Design Service, funded by the National Institute for Health Research, introduced a small grant in 2008, to support public involvement (often known as patient and public involvement [PPI]) activities during the development of applications for research funding. Successful applicants are requested to submit a report detailing how the grant
Briscoe, William; O'Rielly, Grant; Fissum, Kevin
Undergraduate students associated with The George Washington University and UMass Dartmouth have had the opportunity to participate in nuclear physics research as a part of the PIONS@MAXLAB Collaboration performing experiments at MAX-lab at Lund University in Sweden. This project has supported thirteen undergraduate students during 2009 - 2011. The student researchers are involved with all aspects of the experiments performed at the laboratory, from set-up to analysis and presentation at national conferences. These experiments investigate the dynamics responsible for the internal structure of the nucleon through the study of pion photoproduction off the nucleon and high-energy Compton scattering. Along with the US and Swedish project leaders, members of the collaboration (from four different countries) have contributed to the training and mentoring of these students. This program provides students with international research experiences that prepare them to operate successfully in a global environment and encourages them to stay in areas of science, technology, engineering and math (STEM) that are crucial for our modern, technology-dependent society. We will present the history, goals and outcomes in both physics results and student success that have come from this program. This work supported by NSF OISE/IRES award 0553467.
Lander, Jonas; Hainz, Tobias; Hirschberg, Irene; Bossert, Sabine; Strech, Daniel
Public involvement activities (PIAs) may contribute to the governance of ethically challenging biomedical research and innovation by informing, consulting with and engaging the public in developments and decision-making processes. For PIAs to capture a population's preferences (e.g. on issues in whole genome sequencing, biobanks or genome editing), a central methodological requirement is to involve a sufficiently representative subgroup of the general public. While the existing literature focusses on theoretical and normative aspects of 'representation', this study assesses empirically how such considerations are implemented in practice. It evaluates how PIA reports describe representation objectives, the recruitment process and levels of representation achieved. PIA reports were included from a systematic literature search if they directly reported a PIA conducted in a relevant discipline such as genomics, biobanks, biotechnology or others. PIA reports were analyzed with thematic text analysis. The text analysis was guided by an assessment matrix based on PIA-specific guidelines and frameworks. We included 46 relevant reports, most focusing on issues in genomics. 27 reports (59%) explicitly described representation objectives, though mostly without adjusting eligibility criteria and recruiting methods to the specific objective. 11 reports (24%) explicitly reported to have achieved the intended representation; the rest either reported failure or were silent on this issue. Representation of study samples in PIAs in biomedical research and innovation is currently not reported systematically. Improved reporting on representation would not only improve the validity and value of PIAs, but could also contribute to PIA results being used more often in relevant policy and decision-making processes. © 2016 S. Karger AG, Basel.
Escadafal, Richard; Barbero, Celia; Exbrayat, Williams; Marques, Maria Jose; Ruiz, Manuel; El Haddadi, Anass; Akhtar-Schuster, Mariam
Land and soil conservation topics, the final mandate of the United Convention to Combat desertification in drylands, have been diagnosed as still suffering from a lack of guidance. On the contrary, climate change and biodiversity issues -the other two big subjects of the Rio Conventions- seem to progress and may benefit from the advice of international panels. Arguably the weakness of policy measures and hence the application of scientific knowledge by land users and stakeholders could be the expression of an inadequate research organization and a lack of ability to channel their findings. In order to better understand the size, breadth and depth of the scientific communities involved in providing advice to this convention and to other bodies, this study explores the corpus of international publications dealing with land and/or with soils. A database of several thousands records including a significant part of the literature published so far was performed using the Web of Science and other socio-economic databases such as FRANCIS and CAIRN. We extracted hidden information using bibliometric methods and data mining applied to these scientific publications to map the key actors (laboratories, teams, institutions) involved in research on land and on soils. Several filters were applied to the databases in combination with the word "desertification". The further use of Tetralogie software merges databases, analyses similarities and differences between keywords, disciplines, authors and regions and identifies obvious clusters. Assessing their commonalities and differences, the visualisation of links and gaps between scientists, organisations, policymakers and other stakeholders is possible. The interpretation of the 'clouds' of disciplines, keywords, and techniques will enhance the understanding of interconnections between them; ultimately this will allow diagnosing some of their strengths and weaknesses. This may help explain why land and soil degradation remains a
Full Text Available The purpose of this article is to describe the methodological issues involved in conducting qualitative research to explore and describe nurses’ experience of being directly involved with termination of pregnancies and developing guidelines for support for these nurses. Opsomming Die doel van hierdie artikel is om die metodologiese vraagstukke te beskryf rondom die uitvoer van kwalitatiewe navorsing waar verpleegkundiges se ervaring van hul direkte betrokkenheid by terminasie van swangerskap verken en beskryf is. *Please note: This is a reduced version of the abstract. Please refer to PDF for full text.
Jivraj, Jamil; Sacrey, Lori-Ann; Newton, Amanda; Nicholas, David; Zwaigenbaum, Lonnie
Participatory research aims to increase the relevance and broaden the implementation of health research by involving those affected by the outcomes of health studies. Few studies within the field of neurodevelopmental disorders, particularly autism spectrum disorders, have involved autistic individuals as partners. This study sought to identify…
Lander, Jonas; Hainz, Tobias; Hirschberg, Irene; Strech, Daniel
A recent report from the British Nuffield Council on Bioethics associated 'emerging biotechnologies' with a threefold challenge: 1) uncertainty about outcomes, 2) diverse public views on the values and implications attached to biotechnologies and 3) the possibility of creating radical changes regarding societal relations and practices. To address these challenges, leading international institutions stress the need for public involvement activities (PIAs). The objective of this study was to assess the state of PIA reports in the field of biomedical research. PIA reports were identified via a systematic literature search. Thematic text analysis was employed for data extraction. After filtering, 35 public consultation and 11 public participation studies were included in this review. Analysis and synthesis of all 46 PIA studies resulted in 6 distinguishable PIA objectives and 37 corresponding PIA methods. Reports of outcome translation and PIA evaluation were found in 9 and 10 studies respectively (20% and 22%). The paper presents qualitative details. The state of PIAs on biomedical research and innovation is characterized by a broad range of methods and awkward variation in the wording of objectives. Better comparability of PIAs might improve the translation of PIA findings into further policy development. PIA-specific reporting guidelines would help in this regard. The modest level of translation efforts is another pointer to the "deliberation to policy gap". The results of this review could inform the design of new PIAs and future efforts to improve PIA comparability and outcome translation.
Full Text Available Following the abdominal surgery, extensive adhesions often occur and they can cause difficulties during laparoscopic operations. However, previous laparotomy is not considered to be a contraindication for laparoscopy. The aim of this study is to present that an insertion of Veres needle in the region of umbilicus is a safe method for creating a pneumoperitoneum for laparoscopic operations after previous laparotomy. In the last three years, we have performed 144 laparoscopic operations in patients that previously underwent one or two laparotomies. Pathology of digestive system, genital organs, Cesarean Section or abdominal war injuries were the most common causes of previouslaparotomy. During those operations or during entering into abdominal cavity we have not experienced any complications, while in 7 patients we performed conversion to laparotomy following the diagnostic laparoscopy. In all patients an insertion of Veres needle and trocar insertion in the umbilical region was performed, namely a technique of closed laparoscopy. Not even in one patient adhesions in the region of umbilicus were found, and no abdominal organs were injured.
Novaes, Maria Rita Garbi; Guilhem, Dirce; Barragan, Elena; Mennin, Stewart
The Brazilian national curriculum guidelines for undergraduate medicine courses inspired and influenced the groundwork for knowledge acquisition, skills development and the perception of ethical values in the context of professional conduct. The evaluation of ethics education in research involving human beings in undergraduate medicine curriculum in Brazil, both in courses with active learning processes and in those with traditional lecture learning methodologies. Curricula and teaching projects of 175 Brazilian medical schools were analyzed using a retrospective historical and descriptive exploratory cohort study. Thirty one medical schools were excluded from the study because of incomplete information or a refusal to participate. Active research for information from institutional sites and documents was guided by terms based on 69 DeCS/MeSH descriptors. Curriculum information was correlated with educational models of learning such as active learning methodologies, tutorial discussions with integrated curriculum into core modules, and traditional lecture learning methodologies for large classes organized by disciplines and reviewed by occurrence frequency of ethical themes and average hourly load per semester. Ninety-five medical schools used traditional learning methodologies. The ten most frequent ethical themes were: 1--ethics in research (26); 2--ethical procedures and advanced technology (46); 3--ethic-professional conduct (413). Over 80% of schools using active learning methodologies had between 50 and 100 hours of scheduled curriculum time devoted to ethical themes whereas more than 60% of traditional learning methodology schools devoted less than 50 hours in curriculum time to ethical themes. The data indicates that medical schools that employ more active learning methodologies provide more attention and time to ethical themes than schools with traditional discipline-based methodologies. Given the importance of ethical issues in contemporary medical
Brainard, Julii Suzanne; Al Assaf, Enana; Omasete, Judith; Leach, Steve; Hammer, Charlotte C; Hunter, Paul R
The UK's National Institute for Health Research (NIHR) Health Protection Research Unit in Emergency Preparedness and Response was asked to undertake research on how to reduce the impact of complex national/international emergencies on public health. How to focus the research and decide on priority topics was challenging, given the nature of complex events. Using a type of structured brain-storming, the researchers identified the ongoing UK, European and international migration crisis as both complex and worthy of deeper research. To further focus the research, two representatives of forced migrant communities were invited to join the project team as patient and public (PPI) representatives. They attended regular project meetings, insightfully contributed to and advised on practical aspects of potential research areas. The representatives identified cultural obstacles and community needs and helped choose the final research study design, which was to interview forced migrants about their strategies to build emotional resilience and prevent mental illness. The representatives also helped design recruitment documents, and undertake recruitment and interviewer training. Many events with wide-ranging negative health impacts are notable for complexity: lack of predictability, non-linear feedback mechanisms and unexpected consequences. A multi-disciplinary research team was tasked with reducing the public health impacts from complex events, but without a pre-specified topic area or research design. This report describes using patient and public involvement within an adaptable but structured development process to set research objectives and aspects of implementation. An agile adaptive development approach, sometimes described as swarm , was used to identify possible research areas. Swarm is meant to quickly identify strengths and weaknesses of any candidate project, to accelerate early failure before resources are invested. When aspects of the European migration crisis
Gibson, Andy; Welsman, Jo; Britten, Nicky
There is a growing literature on evaluating aspects of patient and public involvement (PPI). We have suggested that at the core of successful PPI is the dynamic interaction of different forms of knowledge, notably lay and professional. We have developed a four-dimensional theoretical framework for understanding these interactions. We explore the practical utility of the theoretical framework as a tool for mapping and evaluating the experience of PPI in health services research. We conducted three workshops with different PPI groups in which participants were invited to map their PPI experiences on wall charts representing the four dimensions of our framework. The language used to describe the four dimensions was modified to make it more accessible to lay audiences. Participants were given sticky notes to indicate their own positions on the different dimensions and to write explanatory comments if they wished. Participants' responses were then discussed and analysed as a group. The three groups were distinctive in their mapped responses suggesting different experiences in relation to having a strong or weak voice in their organization, having few or many ways of getting involved, addressing organizational or public concerns and believing that the organization was willing to change or not. The framework has practical utility for mapping and evaluating PPI interactions and is sensitive to differences in PPI experiences within and between different organizations. The workshops enabled participants to reflect collaboratively on their experiences with a view to improving PPI experiences and planning for the future. © 2017 The Authors Health Expectations published by John Wiley & Sons Ltd.
There is growing attention to participation and social participation in literature and policy reports. Occupational therapists strongly believe that creating coherence between the person's occupations and environment will facilitate participation of each individual. Nowadays, societal developments such as "health literacy and self-management", "Web 2.0 social media", "empowering communities", and "Nothing About Us Without Us" increase opportunities for people to interact on different levels of social participation. Social participation can be used as an outcome, though it can also be seen as a means to change society and to develop solutions for barriers experienced by people with chronic diseases or disabilities. Societal developments will have an impact on social participation in terms of supporting each other and contributing to society. Additionally, these changes will have a major influence on the way we educate, conduct research, and deliver occupational therapy practice.
Caldecott, Ben; Sartor, Oliver; Spencer, Thomas
The need for a so-called 'just transition' is acknowledged, away from carbon intensive activities, such as coal production and use. But what might a just transition look like in practice? What specific risks need to be managed and what are the best approaches to managing them? There is an urgent need to develop a deeper understanding of these issues. It is to this need that this report tries to respond. It provides a summary of lessons from six historical case studies of regional coal mining transitions that have occurred or are ongoing in Europe and the United States in recent decades. These case studies and this report were developed as part of a broader project led by IDDRI and Climate Strategies, entitled 'Coal Transitions: Research and Dialogue on the Future of Coal'. This project seeks to utilise these historical lessons to facilitate the development of feasible coal transition scenarios in large coal producing countries today'
Anderson de Cuevas, Rachel; Nylén, Lotta; Burström, Bo; Whitehead, Margaret
Public involvement in research is considered good practice by European funders; however, evidence of its research impact is sparse, particularly in relation to large-scale epidemiological research. To explore what difference public and stakeholder involvement made to the interpretation of findings from an evaluation of a natural policy experiment to influence the wider social determinants of health: 'Flexicurity'. Stockholm County, Sweden. Members of the public from different occupational groups represented by blue-collar and white-collar trade union representatives. Also, members of three stakeholder groups: the Swedish national employment agency; an employers' association and politicians sitting on a national labour market committee. Total: 17 participants. Qualitative study of process and outcomes of public and stakeholder participation in four focused workshops on the interpretation of initial findings from the flexicurity evaluation. New insights from participants benefiting the interpretation of our research findings or conceptualisation of future research. Participants sensed more drastic and nuanced change in the Swedish welfare system over recent decades than was evident from our literature reviews and policy analysis. They also elaborated hidden developments in the Swedish labour market that were increasingly leading to 'insiders' and 'outsiders', with differing experiences and consequences for financial and job security. Their explanation of the differential effects of the various collective agreements for different occupational groups was new and raised further potential research questions. Their first-hand experience provided new insights into how changes to the social protection system were contributing to the increasing trends in poverty among unemployed people with limiting long-standing illness. The politicians provided further reasoning behind some of the policy changes and their intended and unintended consequences. These insights fed into
Di Persia, Francisco N
The psychopathological field is crossed by dilemmas that put in question its methodological, conceptual and philosophical filiations. Since the early works of Ey and Jaspers until recent work of Berrios it has been in question the position psychopathology has in the field of medicine in general, and in the field of psychiatry in particular, especially if it should follow the principles of natural science or if it has an autonomous position between them. This debate has led to two opposing positions facing two different models of psychopathology: the biomedical model and the socio-constructionist model. In this work it is proposed to review the scope and difficulties involved in each model following two central axes: diagnostic reasoning and mental illness conceptual problem. Later, as a synthesis of the analysis proposed they are identified central concepts of each model that could allow the development of a hybrid model in psychopathology; in between them the comprehensive framework employed in symptoms recognition and the social component that characterizes it are highlighted. As a conclusion, these concepts are proposed as central aspects for conceptual and methodological clarification of the research field of diagnostic reasoning in psychopathology.
Ford, Julie Dyke; Newmark, Julianne
This article presents follow-up information to a previous publication regarding ways to increase emphasis on research skills in undergraduate Technical Communication curricula. We detail the ways our undergraduate program highlights research by requiring majors to complete senior thesis projects that culminate in submission to an online…
If parental involvement in a child's education is generally viewed in positive terms, then it is important to understand what sorts of barriers might hinder it. This article reviews literature on culturally and linguistically diverse parental involvement in special education in the United States and Canada. In analyzing 20 articles published in…
Colson, Myron Jamal
The purpose of the study was to investigate the relationship of home parental involvement practices, parental style and student achievement. Dimensions of parental involvement practices are parental instruction, parental reinforcement, parental modeling, and parental encouragement. Dimensions of parental style are authoritarian, permissive, and…
Mjøsund, Nina Helen; Eriksson, Monica; Espnes, Geir Arild; Haaland-Øverby, Mette; Jensen, Sven Liang; Norheim, Irene; Kjus, Solveig Helene Høymork; Portaasen, Inger-Lill; Vinje, Hege Forbech
The aim of this study was to examine how service user involvement can contribute to the development of interpretative phenomenological analysis methodology and enhance research quality. Interpretative phenomenological analysis is a qualitative methodology used in nursing research internationally to understand human experiences that are essential to the participants. Service user involvement is requested in nursing research. We share experiences from 4 years of collaboration (2012-2015) on a mental health promotion project, which involved an advisory team. Five research advisors either with a diagnosis or related to a person with severe mental illness constituted the team. They collaborated with the research fellow throughout the entire research process and have co-authored this article. We examined the joint process of analysing the empirical data from interviews. Our analytical discussions were audiotaped, transcribed and subsequently interpreted following the guidelines for good qualitative analysis in interpretative phenomenological analysis studies. The advisory team became 'the researcher's helping hand'. Multiple perspectives influenced the qualitative analysis, which gave more insightful interpretations of nuances, complexity, richness or ambiguity in the interviewed participants' accounts. The outcome of the service user involvement was increased breadth and depth in findings. Service user involvement improved the research quality in a nursing research project on mental health promotion. The interpretative element of interpretative phenomenological analysis was enhanced by the emergence of multiple perspectives in the qualitative analysis of the empirical data. We argue that service user involvement and interpretative phenomenological analysis methodology can mutually reinforce each other and strengthen qualitative methodology. © 2016 The Authors. Journal of Advanced Nursing Published by John Wiley & Sons Ltd.
... 21 Food and Drugs 1 2010-04-01 2010-04-01 false Expedited review procedures for certain kinds of research involving no more than minimal risk, and for minor changes in approved research. 56.110 Section 56.110 Food and Drugs FOOD AND DRUG ADMINISTRATION, DEPARTMENT OF HEALTH AND HUMAN SERVICES GENERAL...
Broerse, J.E.W.; Zweekhorst, M.B.M.; Van Rensen, A.J.M.L.; De Haan, M.J.M.
Background and aim: The role of burn survivors in burn research is usually restricted to being objects of study and beneficiaries of research results, while decision-making on research is traditionally the domain of a small group of experts, mainly scientists. In this article we compare the research
Mockford, Carole; Murray, Matt; Seers, Kate; Oyebode, Jan; Grant, Richard; Boex, Sue; Staniszewska, Sophie; Diment, Yvonne; Leach, Jim; Sharma, Uma; Clarke, Rosemary; Suleman, Rashida
In the United Kingdom (UK), official bodies such as the Department of Health and research funders such as the National Institute for Health Research support and encourage lay involvement in all stages of research studies. The SHARED study has had substantial patient and public involvement (PPI) from developing the idea to dissemination. The aim of the study has been to develop recommendations led by service users for health and social care professionals to use at hospital discharge and in care planning for people living with memory loss and their carers. This article is about how the study started and the benefits, costs and challenges we encountered as the lead and lay co-researchers. Once we were successful with the grant application, we had to recruit and train the lay co-researchers and obtain various approvals before we could start the project. We had various support from funders, the Research Ethics Committee, lay members of Alzheimer's Society and from the lay co-researchers. However, we encountered some challenges with paying the lay co-researchers and with getting the approval for the co-researchers to interview staff on NHS premises. The challenges were overcome eventually but some aspects of the study changed because of this. We suggest that some changes could be made to the research system which would lead to greater inclusion of the lay co-researchers in research studies and would make the process more straightforward for the research team. Background Involving patients and the public in all stages of research has been the focus of the SHARED study. Patient and public involvement (PPI) is an important strategic priority for the Department of Health and funders such as the National Institute for Health Research. The aim of this paper is to describe the benefits, challenges and costs involved in setting up the research study with lay members as part of the research team. The study focused on developing service user-led recommendations for people with
through his Nobel Lecture in 1961, about unraveling the secrets of photosynthesis -- the process by which . March 10, 2015 Twenty years ago, the top quark was first observed in experiments at the Tevatron proton sophisticated detectors, the top was hard to find. After a top is made from a proton-antiproton collision, a
... changes. Human gene transfer also raises scientific, medical, social, and ethical considerations that... currently reviewed under Section III-B-1, Experiments Involving the Cloning of Toxin Molecules with LD50 of...
Wakunuma, Kutoma; Rainey, Stephen; Hansen, Christian
Research on Brain Computer Interfaces (BCI) often aims to provide solutions for vulnerable populations, such as individuals with diseases, conditions or disabilities that keep them from using traditional interfaces. Such research thereby contributes to the public good. This contribution to the public good corresponds to a broader drive of research and funding policy that focuses on promoting beneficial societal impact. One way of achieving this is to engage with the public. In practical terms this can be done by integrating civil society organisations (CSOs) in research. The open question at the heart of this paper is whether and how such CSO integration can transform the research and contribute to the public good. To answer this question the paper describes five detailed qualitative case studies of research projects including CSOs. The paper finds that transformative impact of CSO integration is possible but by no means assured. It provides recommendations on how transformative impact can be promoted. PMID:28207882
Stahl, Bernd Carsten; Wakunuma, Kutoma; Rainey, Stephen; Hansen, Christian
Research on Brain Computer Interfaces (BCI) often aims to provide solutions for vulnerable populations, such as individuals with diseases, conditions or disabilities that keep them from using traditional interfaces. Such research thereby contributes to the public good. This contribution to the public good corresponds to a broader drive of research and funding policy that focuses on promoting beneficial societal impact. One way of achieving this is to engage with the public. In practical terms this can be done by integrating civil society organisations (CSOs) in research. The open question at the heart of this paper is whether and how such CSO integration can transform the research and contribute to the public good. To answer this question the paper describes five detailed qualitative case studies of research projects including CSOs. The paper finds that transformative impact of CSO integration is possible but by no means assured. It provides recommendations on how transformative impact can be promoted.
de Wit, M.P.T.; Abma, T.A.; Koelewijn-van Loon, M.S.; Collins, S.; Kirwan, J
Objective: To assess the inclusion of patients as international research partners in Outcome Measures in Rheumatology (OMERACT) conferences and how this has influenced the scope and conduct of outcomes research in rheumatology. Design: A thematic content analysis of OMERACT internal documents,
Stevens, Katie; Bernal, Cathy; Devis, Kate; Southgate, Andrew
The aim of this study was to gain insight into service users' experiences of participating in recruitment for Adult, Mental Health and Child nursing studies at the authors' university; to establish potential motivations behind such participation; and to make suggestions for improved future practice. The involvement of service users in nurse education and recruitment has for some years been required by the Nursing and Midwifery Council, but there is a dearth of publications on the meaning of that involvement to participating service users. It is hoped that this study will contribute to this body of knowledge. A phenomenological approach was selected, field-specific focus groups of service users being facilitated using a semi-structured interview format; these were audio recorded and transcribed. The data was analysed using thematic analysis. Participation was subject to the service users having been involved in recruitment to nursing studies at the authors' university and the focus groups took place either at the university or at the child participants' school. Themes identified demonstrated largely positive experiences and a sense of meaningful involvement for all concerned. Findings indicated a close link between the values of the participants and those of the wider NHS, benefits to a sense of wellbeing and achievement, as well as the need for greater ownership of the recruitment process by service users. Potential lessons for academics wishing to promote greater service user involvement in student recruitment are articulated. Copyright © 2017 Elsevier Ltd. All rights reserved.
Zulu, Joseph M; Ali, Joseph; Hallez, Kristina; Kass, Nancy; Michelo, Charles; Hyder, Adnan A
An increase in post abortion care (PAC) research with adolescents, particularly in low- and middle-income countries, has brought to attention several associated research ethics challenges. In order to better understand the ethics context of PAC research with adolescents, we conducted a scoping review of published literature. Following a systematic search of PubMed, HINARI, and Google Scholar, we analysed articles meeting inclusion criteria to determine common themes across both the ethical challenges related to PAC research with adolescents and any available guidance on the identified challenges. The literature search identified an initial 3321 records of which 14 were included in analysis following screening. Several ethical challenges stem from abortion being a controversial, sensitive, and stigmatized topic in many settings. Ethical dilemmas experienced by researchers conducting adolescent PAC research included: difficulties in convincing local health providers to permit PAC research; challenges in recruiting and seeking consent due to sensitivity of the subject; effectively protecting confidentiality; managing negative effects of interventions; creating a non-prejudicial atmosphere for research; managing emotional issues among adolescents; and dealing with uncertainty regarding the role of researchers when observing unethical health care practices. Suggested strategies for addressing some of these challenges include: using several sources to recruit study participants, using research to facilitate dialogue on abortion, briefing health workers on any observed unethical practices after data collection, fostering a comprehensive understanding of contextual norms and values, selecting staff with experience working with study populations, and avoiding collection of personal identifiers. Addressing ethical challenges that researchers face when conducting PAC research with adolescents requires guidance at the individual, institutional, community, and international
The policy of the Australian Institute of Radiography with regards to the human subject irradiation is outlined. It is stated that members will not irradiate another individual, nor themselves, solely for the purposes of experimentation or research without gaining the prior approval of an institutional ethics committee. Where possible, researchers should consider the use of patient equivalent or human tissue equivalent phantoms. A short list of references has been compiled to assist members in designing research protocols which comply with the stated policy
Vieira Filho, X; Medeiros, J C; Szechtman, M [Centro de Pesquisas de Energia Eletrica (CEPEL), Rio de Janeiro, RJ (Brazil)
This paper presents the form which CEPEL (Brazilian Federal Research Center in Electric Energy) works for the Brazilian electric system, the interaction with associates, especially with ELETROBRAS (the Federal holding company in Brazil), the modern way of CEPEL operation and interactions with clients, the partnership in Research and Development, the CEPEL philosophy of transferring technology to its clients, and the cost-benefit analysis of Research and Development activities. (author) 2 refs., 4 figs., 1 tab.
Sad, Süleyman Nihat; Konca, Ahmet Sami; Özer, Niyazi; Acar, Feride
This phenomenological study explored parental e-nvolvement (or electronic parental involvement), defined as "parental efforts to plan, engage in, support, monitor and/or assess the learning experiences of their children either at home or at school predominantly using technological devices and media." Data were gathered from 23…
Several studies of utterance planning and attention processes in stuttering have raised the prospect of working memory involvement in the disorder. In this paper, potential connections between stuttering and two elements of Baddeley's [Baddeley, A. D. (2003). "Working memory: Looking back and looking forward." "Neuroscience," 4, 829-839] working…
Snow, R; Crocker, J C; Crowe, S
Healthcare workers want to listen more to patients and their carers in all sorts of areas of healthcare. This can include choosing topics for medical research. We looked at how patients and carers have helped to choose topics for research about type I diabetes. We aimed to find out if, and why, researchers often rejected their choices. We looked at a project which brought together patients, carers and healthcare workers to choose topics for research about type 1 diabetes. The group first asked patients, carers and healthcare workers to suggest ideas for research questions. But the group had to follow rules about what counted as a good research question. Some people's ideas did not count as good research questions, and they were rejected at the start. We looked at who were most likely to have their ideas rejected at the start. We found that patients and carers were most likely to have a suggestion rejected. Then we looked at the rejected questions in detail. They were mostly about curing diabetes, preventing diabetes and understanding how diabetes works. There were also some questions about access to medicines and the quality of care. Researchers should ask patients and carers for help deciding what counts as a good research question from the start of projects like these. We should also think about what might be getting in the way of patients and carers making more of a difference in research. Background Patients and carers are increasingly involved in deciding on topics for medical research. However, so far, it has been difficult to gain an accurate picture of the impact of such involvement because of poor reporting and evaluation in published studies to date. This study aimed to explore how a partnership of patients, carers, healthcare professionals and organisations identified questions for future research and why patients and carers had a limited impact on this process. Methods In the first stage of the partnership process, relevant service users and providers
Davison, Kirsten K; Charles, Jo N; Khandpur, Neha; Nelson, Timothy J
Purpose Examine fathers' perceived reasons for their lack of inclusion in pediatric research and strategies to increase their participation. Description We conducted expert interviews with researchers and practitioners (N = 13) working with fathers to inform the development of an online survey. The survey-which measured fathers' perceived reasons for their underrepresentation in pediatric research, recommended recruitment venues, and research personnel and study characteristics valued by fathers-was distributed online and in-person to fathers. Assessment Respondents included 303 fathers. Over 80 % of respondents reported that fathers are underrepresented in pediatric research because they have not been asked to participate. Frequently recommended recruitment venues included community sports events (52 %), social service programs (48 %) and the internet (60 %). Compared with white fathers, more non-white fathers recommended public transit (19 % vs. 10 %, p = .02), playgrounds (16 % vs. 6 %, p = .007) and barber shops (34 % vs. 14 %, p research may increase if researchers explicitly invite father to participate, target father-focused recruitment venues, clearly communicate the benefits of the research for fathers and their families and adopt streamlined study procedures.
Martha L. Stiegman
Full Text Available Ethical standards of conduct in research undertaken at Canadian universities involving humans has been guided by the three federal research funding agencies through the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (or TCPS for short since 1998. The statement was revised for the first time in 2010 and is now commonly referred to as the TCPS2, which includes an entire chapter (Chapter 9 devoted to the subject of research involving First Nations, Inuit, and Métis peoples of Canada. While the establishment of TCPS2 is an important initial step on the long road towards decolonizing Indigenous research within the academy, our frustrations—which echo those of many colleagues struggling to do research “in a good way” (see, for example, Ball & Janyst 2008; Bull, 2008; Guta et al., 2010 within this framework—highlight the urgent work that remains to be done if university-based researchers are to be enabled by establishment channels to do “ethical” research with Aboriginal peoples. In our (and others’ experience to date, we seem to have been able to do research in a good way, despite, not because of the TCPS2 (see Castleden et al., 2012. The disconnect between the stated goals of TCPS2, and the challenges researchers face when attempting to navigate how individual, rotating members of REBs interpret the TPCS2 and operate within this framework, begs the question: Wherein lies the disconnect? A number of scholars are currently researching this divide (see for example see Guta et al. 2010; Flicker & Worthington, 2011; and Guta et al., 2013. In this editorial, we offer an anecdote to illustrate our experience regarding some of these tensions and then offer reflections about what might need to change for the next iteration of the TCPS.
Full Text Available Abstract Background There is some evidence that medical students consider population health issues less important than other domains in the health sciences and attitudes to this field may become more negative as training progresses. A need to improve research skills among medical students has also been suggested. Therefore we piloted an integrative teaching exercise that combined teaching of research skills and public health, with real-world research. Methods Third year medical students at the University of Otago (Dunedin, New Zealand filled in a questionnaire on their housing conditions and health. The students were given the results of the survey to discuss in a subsequent class. Student response to this teaching exercise was assessed using a Course Evaluation Questionnaire. Results Of the 210 students in the class, 136 completed the Course Evaluation Questionnaire (65%. A majority of those who responded (77% greatly supported or supported the use of the survey and seminar discussion for future third year classes. Most (70% thought that the session had made them more aware and concerned about societal problems, and 72% felt that they now had an improved understanding of the environmental determinants of health. Students liked the relevance and interaction of the session, but thought it could be improved by the inclusion of small group discussion. The findings of the students' housing and health were considered by the tutors to be of sufficient value to submit to a scientific journal and are now contributing to community action to improve student housing in the city. Conclusion In this pilot study it was feasible to integrate medical student teaching with real-world research. A large majority of the students responded favourably to the teaching exercise and this was generally successful in raising the profile of public health and research. This approach to integrated teaching/research should be considered further in health sciences training and
This Safety Series book should be considered as a technical guide aimed at the users of radioactive materials and the appropriate local and national authorities. It does not represent a single solution to the problems involved but rather draws the outlines of the plans and procedures that have to be developed in order to mitigate the consequences of an accident, should one occur. The preparation of local and national plans should follow the technical recommendations provided in this publication, with due consideration given to local factors which might vary from country to country (e.g. governmental systems, local legislation, quantities of radioactive materials involved). Several types of accidents are described, together with their possible radiological consequences. The basic principles of the protective measures that should be applied are discussed, and the principles of emergency planning and the measures needed to maintain preparedness for an operational response to an accident are outlined
torture Prohibition on slavery and forced labour Right to liberty and security Right to a fair trial No punishment without law Right to respect...NOT BE TOLERATED. IT IS BOTH A BREACH OF REGULATIONS AND UNETHICAL . UNAUTHORIZED RESEARCH MAY THEREFORE BE SUBJECT TO INVESTIGATION AND
Full Text Available In 2007 and 2008, the World Health Organization's Department for Child and Adolescent Health and Development commissioned five large research priority setting exercises using the CHNRI (Child Health and Nutrition Research Initiative method. The aim was to define research priorities related to the five major causes of child deaths for the period up to the year 2015. The selected causes were childhood pneumonia, diarrhoea, birth asphyxia, neonatal infections and preterm birth/low birth weight. The criteria used for prioritization in all five exercises were the “standard” CHNRI criteria: answerability, effectiveness, deliverability, potential for mortality burden reduction and the effect on equity. Having completed the exercises, the WHO officers were left with another question: how “fundable” were the identified priorities, i.e. how attractive were they to research funders?
Dyson, Melissa C; Carpenter, Calvin B; Colby, Lesley A
Research with hazardous biologic materials (biohazards) is essential to the progress of medicine and science. The field of microbiology has rapidly advanced over the years, partially due to the development of new scientific methods such as recombinant DNA technology, synthetic biology, viral vectors, and the use of genetically modified animals. This research poses a potential risk to personnel as well as the public and the environment. Institutions must have appropriate oversight and take app...
Ryan, Gemma Sinead
To review current literature and discuss the potential of online social networking to engage patients and the public and recruit and retain participants in clinical research. Online social networking is becoming a large influence on people's daily lives. Clinical research faces several challenges, with an increasing need to engage with patients and the public and for studies to recruit and retain increasing numbers of participants, particularly in under-served, under-represented and hard to reach groups and communities. Searches were conducted using EMBASE, BNI, ERIC, CINAHL, PSYCHinfo online databases and Google Scholar to identify any grey or unpublished literature that may be available. Review methods This is a methodology paper. Online social networking is a successful, cost-effective and efficient method by which to target and recruit a wide range of communities, adolescents, young people and underserved populations into quantitative and qualitative research. Retention of participants in longitudinal studies could be improved using social networks such as Facebook. Evidence indicates that a mixed approach to recruitment using social networking and traditional methods is most effective. Further research is required to strengthen the evidence available, especially in dissemination of research through online social networks. Researchers should consider using online social networking as a method of engaging the public, and also for the recruitment and follow up of participants.
Fisher, Celia B.
In 2003, 2 new sets of rules and regulations affecting the conduct of clinical research involving children and adolescents went into effect: the revised American Psychological Association's (APA) Ethical Principles of Psychologists and Code of Conduct (APA, 2002; effective June 1, 2003) and the Privacy Rule (45 CFR Part 160 and A and E of Part…
... 40 Protection of Environment 1 2010-07-01 2010-07-01 false Prohibition of research involving intentional exposure of any human subject who is a pregnant woman (and therefore her fetus), a nursing woman, or a child. 26.1203 Section 26.1203 Protection of Environment ENVIRONMENTAL PROTECTION AGENCY GENERAL...
... her fetus), a nursing woman, or child. 26.203 Section 26.203 Protection of Environment ENVIRONMENTAL... 40 Protection of Environment 1 2010-07-01 2010-07-01 false Prohibition of research conducted or... Involving Intentional Exposure of Human Subjects who are Children or Pregnant or Nursing Women § 26.203...
McCullagh, Marjorie C; Sanon, Marie-Anne; Cohen, Michael A
Challenges associated with recruiting and retaining community-based populations in research studies have been recognized yet remain of major concern for researchers. There is a need for exchange of recruitment and retention techniques that inform recruitment and retention strategies. Here, the authors discuss a variety of methods that were successful in exceeding target recruitment and retention goals in a randomized clinical trial of hearing protector use among farm operators. Recruitment and retention strategies were 1) based on a philosophy of mutually beneficial engagement in the research process, 2) culturally appropriate, 3) tailored to the unique needs of partnering agencies, and 4) developed and refined in a cyclical and iterative process. Sponsoring organizations are interested in cost-effective recruitment and retention strategies, particularly relating to culturally and ethnically diverse groups. These approaches may result in enhanced subject recruitment and retention, concomitant containment of study costs, and timely accomplishment of study aims. Copyright © 2014 Elsevier Inc. All rights reserved.
Ericsson, Jonas; Husmark, Teodor; Mathiesen, Christoffer; Sepahvand, Benjamin; Borck, Øyvind; Gunnarsson, Linda; Lydmark, Pär; Schröder, Elsebeth
To increase public awareness of theoretical materials physics, a small group of high school students is invited to participate actively in a current research projects at Chalmers University of Technology. The Chalmers research group explores methods for filtrating hazardous and otherwise unwanted molecules from drinking water, for example by adsorption in active carbon filters. In this project, the students use graphene as an idealized model for active carbon, and estimate the energy of adsorption of the methylbenzene toluene on graphene with the help of the atomic-scale calculational method density functional theory. In this process the students develop an insight into applied quantum physics, a topic usually not taught at this educational level, and gain some experience with a couple of state-of-the-art calculational tools in materials research.
A number of different techniques which range over several different aspects of materials research are covered in this volume. They are concerned with property evaluation of 4 0 K and below, surface characterization, coating techniques, techniques for the fabrication of composite materials, computer methods, data evaluation and analysis, statistical design of experiments and non-destructive test techniques. Topics covered in this part include internal friction measurements; nondestructive testing techniques; statistical design of experiments and regression analysis in metallurgical research; and measurement of surfaces of engineering materials
Frankel, M. S.
The policy making process which led to development of the Public Health Service Guidelines governing research involving human subjects is outlined. Part 1 examines the evolution of PHS Guidelines, tracing (1) evolution of thought and legal interpretation regarding research using human subjects; (2) initial involvement of the Federal government; (3) development of the government's research program; (4) the social-political environment in which formal government policy was developed; and (5) various policy statements issued by the government. Part 2 analyzes the process by which PHS Guidelines were developed and examines the values and other underlying factors which contributed to their development. It was concluded that the evolution of the Guidelines is best understood within the context of a mixed-scanning strategy. In such a strategy, policy makers make fundamental decisions regarding the basic direction of policy and subsequent decisions are made incrementally and within the contexts set by the original fundamental decisions.
Ewing, Maureen; Camara, Wayne J.; Millsap, Roger E.; Milewski, Glenn B.
AP Potential™ is a data-driven tool offered by the College Board that uses scores from the PSAT/NMSQT® to identify students who have the potential to succeed in Advanced Placement Program® (AP®) courses (College Board, 2007). Research showing a moderate-to-strong correlation between PSAT/NMSQT scores and AP Exam scores serves as the basis for this…
Kravale-Paulina, Marite; Olehnovica, Eridiana
Civic participation, initiative and interest in current events can bridge the alienation felt towards national and municipal institutions, thereby enabling individuals to improve their quality of life and contribute to all-round sustainable development of their resident state. This paper reports on a participatory action research study into civic…
Full Text Available Abstract Background Research involving minors has been the subject of much ethical debate. The growing number of longitudinal, pediatric studies that involve genetic research present even more complex challenges to ensure appropriate protection of children and families as research participants. Long-term studies with a genetic component involve collection, retention and use of biological samples and personal information over many years. Cohort studies may be established to study specific conditions (e.g. autism, asthma or may have a broad aim to research a range of factors that influence the health and development of children. Studies are increasingly intended to serve as research platforms by providing access to data and biological samples to researchers over many years. This study examines how six birth cohort studies in North America and Europe that involve genetic research handle key ethical, legal and social (ELS issues: recruitment, especially parental authority to include a child in research; initial parental consent and subsequent assent and/or consent from the maturing child; withdrawal; confidentiality and sample/data protection; handling sensitive information; and disclosure of results. Methods Semi-structured telephone interviews were carried out in 2008/09 with investigators involved in six birth cohort studies in Canada, Denmark, England, France, the Netherlands and the United States. Interviewees self-identified as being knowledgeable about ELS aspects of the study. Interviews were conducted in English. Results The studies vary in breadth of initial consent, but none adopt a blanket consent for future use of samples/data. Ethics review of new studies is a common requirement. Studies that follow children past early childhood recognise a need to seek assent/consent as the child matures. All studies limit access to identifiable data and advise participants of the right to withdraw. The clearest differences among studies concern
Troischt, Parker; Koopmann, Rebecca A.; Haynes, Martha P.; Higdon, Sarah; Balonek, Thomas J.; Cannon, John M.; Coble, Kimberly A.; Craig, David; Durbala, Adriana; Finn, Rose; Hoffman, G. Lyle; Kornreich, David A.; Lebron, Mayra E.; Crone-Odekon, Mary; O'Donoghue, Aileen A.; Olowin, Ronald Paul; Pantoja, Carmen; Rosenberg, Jessica L.; Venkatesan, Aparna; Wilcots, Eric M.; Alfalfa Team
The NSF-sponsored Undergraduate ALFALFA (Arecibo Legacy Fast ALFA) Team (UAT) is a consortium of 19 institutions founded to promote undergraduate research and faculty development within the extragalactic ALFALFA HI blind survey project and follow-up programs. The collaborative nature of the UAT allows faculty and students from a wide range of public and private colleges and especially those with small astronomy programs to develop scholarly collaborations. Components of the program include an annual undergraduate workshop at Arecibo Observatory, observing runs at Arecibo, computer infrastructure, summer and academic year research projects, and dissemination at national meetings (e.g., Alfvin et al., Martens et al., Sanders et al., this meeting). Through this model, faculty and students are learning how science is accomplished in a large collaboration while contributing to the scientific goals of a major legacy survey. In the 7 years of the program, 23 faculty and more than 220 undergraduate students have participated at a significant level. 40% of them have been women and members of underrepresented groups. Faculty, many of whom were new to the collaboration and had expertise in other fields, contribute their diverse sets of skills to ALFALFA related projects via observing, data reduction, collaborative research, and research with students. 142 undergraduate students have attended the annual workshops at Arecibo Observatory, interacting with faculty, graduate students, their peers, and Arecibo staff in lectures, group activities, tours, and observing runs. Team faculty have supervised 131 summer research projects and 94 academic year (e.g., senior thesis) projects. 62 students have traveled to Arecibo Observatory for observing runs and 46 have presented their results at national meetings. 93% of alumni are attending graduate school and/or pursuing a career in STEM. Half of those pursuing graduate degrees in Physics or Astronomy are women. This work has been
Iyer, Sharat P; Pancake, Laura S; Dandino, Elizabeth S; Wells, Kenneth B
Barriers to sustainably implementing general medical interventions in community mental health (CMH) settings include role uncertainty, consumer engagement, workforce limitations, and sustainable reimbursement. To address these barriers, this project used a community-partnered participatory research framework to create a stakeholder-based general medical and wellness intervention in a large CMH organization, with consumers involved in all decision-making processes. Consumers faced practical barriers to participating in organizational decision making, but their narratives were critical in establishing priorities and ensuring sustainability. Addressing baseline knowledge and readiness of stakeholders and functional challenges to consumer involvement can aid stakeholder-based approaches to implementing general medical interventions in CMH settings.
José Aparecido de
Full Text Available This essay analyses the asymmetrical relationship between the time of scientific research and the time of the different segments interested in their results, focusing mainly on necessity to establish technical consensus about the fields of science that require rigorous investigations and texts. In the last years, civil society sectors - mainly scientific journalism, legislative power, and public opinion - has shown growing interest in participating of the decision making process that regulates science routes. In this study, we analyzed the decision making process of the Biosafety Law, as it allows research with embryonic stem cells in Brazil. The results allow us to conclude that this asymmetrical relationship between the different times (of science, scientific disclosure, public opinion, and public power contribute to the maturing of the dialog on scientific policies, as well as to the establishment of a consensus concerning science routes, which aims at the democratization of scientific work.
Gautier, M; Normand, A-C; Ranque, S
The use of multi-locus DNA sequence analysis has led to the description of previously unknown 'cryptic' Aspergillus species, whereas classical morphology-based identification of Aspergillus remains limited to the section or species-complex level. The current literature highlights two main features concerning these 'cryptic' Aspergillus species. First, the prevalence of such species in clinical samples is relatively high compared with emergent filamentous fungal taxa such as Mucorales, Scedosporium or Fusarium. Second, it is clearly important to identify these species in the clinical laboratory because of the high frequency of antifungal drug-resistant isolates of such Aspergillus species. Matrix-assisted laser desorption/ionization-time of flight mass spectrometry (MALDI-TOF MS) has recently been shown to enable the identification of filamentous fungi with an accuracy similar to that of DNA sequence-based methods. As MALDI-TOF MS is well suited to the routine clinical laboratory workflow, it facilitates the identification of these 'cryptic' Aspergillus species at the routine mycology bench. The rapid establishment of enhanced filamentous fungi identification facilities will lead to a better understanding of the epidemiology and clinical importance of these emerging Aspergillus species. Based on routine MALDI-TOF MS-based identification results, we provide original insights into the key interpretation issues of a positive Aspergillus culture from a clinical sample. Which ubiquitous species that are frequently isolated from air samples are rarely involved in human invasive disease? Can both the species and the type of biological sample indicate Aspergillus carriage, colonization or infection in a patient? Highly accurate routine filamentous fungi identification is central to enhance the understanding of these previously unknown Aspergillus species, with a vital impact on further improved patient care. Copyright © 2016 European Society of Clinical Microbiology and
Gallagher, Cathal T; McDonald, Lisa J; McCormack, Niamh P
Small-scale research projects involving human subjects have been identified as being effective in developing critical appraisal skills in undergraduate students. In deciding whether to grant ethical approval to such projects, university research ethics committees must weigh the benefits of the research against the risk of harm or discomfort to the participants. As the learning objectives associated with student research can be met without the need for human subjects, the benefit associated with training new healthcare professionals cannot, in itself, justify such risks. The outputs of research must be shared with the wider scientific community if it is to influence future practice. Our survey of 19 UK universities indicates that undergraduate dissertations associated with the disciplines of medicine, dentistry and pharmacy are not routinely retained in their library catalogues, thus closing a major avenue to the dissemination of their findings. If such research is unlikely to be published in a peer-reviewed journal, presented at a conference, or otherwise made available to other researchers, then the risks of harm, discomfort or inconvenience to participants are unlikely to be offset by societal benefits. Ethics committees should be satisfied that undergraduate research will be funnelled into further research that is likely to inform clinical practice before granting ethical approval.
Blackburn, Steven; McLachlan, Sarah; Jowett, Sue; Kinghorn, Philip; Gill, Paramjit; Higginbottom, Adele; Rhodes, Carol; Stevenson, Fiona; Jinks, Clare
In the UK, more patients go to primary care than other parts of the health service. Therefore it is important for research into primary care to include the insights and views of people who receive these services. To explore the extent, quality and impact of patient and public involvement (PPI) in primary care research, we examined documents of 200 projects and surveyed 191 researchers.We found that about half of studies included PPI to develop research ideas and during the study itself. Common activities included designing study materials, advising on methods, and managing the research. Some studies did not undertake the PPI activities initially planned and funded for. PPI varied by study design, health condition and study population. We found pockets of good practice: having a PPI budget, supporting PPI contributors, and PPI informing recruitment issues. However, good practice was lacking in other areas. Few projects offered PPI contributors training, used PPI to develop information for participants about study progress and included PPI to advise on publishing findings.Researchers reported beneficial impacts of PPI. Most impact was reported when the approach to PPI included more indicators of good practice. The main cost of PPI for researchers was their time. Many reported difficulties providing information about PPI.In partnership with PPI contributors, we have used these findings to develop:a new Cost and Consequences Framework for PPI highlighting financial and non-financial costs, benefits and harms of PPIFifteen co-produced recommendations to improve the practice and delivery of PPI. Background: To improve the lives of patients in primary care requires the involvement of service users in primary care research. We aimed to explore the extent, quality and impact of patient and public involvement (PPI) in primary care research. Methods: We extracted information about PPI from grant applications, reports and an electronic survey of researchers of studies funded
Ferrieri, R.A.; Wolf, A.P.
Over the years, a large body of information has amassed which has helped to clarify the authors understanding of the complex chemistry occurring within chemical systems immediately following a nuclear reaction. With the increased knowledge of how reactive nuclides generated by such processes react chemically, it became increasingly apparent that the translational or recoil energy imparted to such species was not always the driving force behind some of the unusual chemistry seen in these systems. In many instances, the state of electronic excitation was found to strongly affect their chemistry. In others, the concomitant radiation chemistry often altered initial chemical states. Even so, with just a general understanding of how these effects work in unison, it has been possible in many instances to predict radiolabel distributions and yields in molecules. This ability has had an enormous impact in other fields utilizing radiotracers in research. This presentation will highlight specific examples in basic hot atom research which have focused on these problems, and describe general applications to other disciplines using radiotracers
Rosen, Rachel; Heatherly, S.; McLauglin, M.; Lorimer, D.
The National Science Foundation funded "Pulsar Search Collaboratory” project is a collaboration between the National Radio Astronomy Observatory (NRAO) in Green Bank, WV and West Virginia University aimed at provoking interest in Science-Technology-Engineering-Math (STEM) careers and increasing scientific and information technology literacy among high-school students within the state and region. Over the initial three-year phase of this program, 60 high-school teachers at schools throughout region and over 300 students will be involved in the search for new pulsars and transient objects by analyzing over 30 TB of data collected by the Green Bank Telescope in 2007. Although training is provided to teachers and student leaders via a summer workshop, additional students may join the program, learning from their peers how to conduct the data analysis. We are now in the second year of the PSC and we present a progress report from the first year of the PSC. We will summarize our approaches to implementing this challenging project, including the use of online tools to communicate with and sustain interest among the student teams, and the development of a unique graphical database through which students access and analyze pulsar plots. We will present the student results including one astronomical discovery as well as statistics on the plots that students have analyzed, including distribution among schools, number of known pulsars found, and RFI detection. Finally we will present evaluation results and lessons learned from the first year of the PSC. These include results from pre/post testing of teachers and students that show changes in student interest in STEM careers resulting from the PSC, and statistics on student participation.
Matausek, M.; Marinkovic, N.
A project has recently been initiated by the VINCA Institute of Nuclear Sciences to improve conditions in the spent fuel storage pool at the 6.5 MW research reactor RA, as well as to consider transferring this spent fuel into a new dry storage facility built for the purpose. Since quantity and contents of fissile material in the spent fuel storage at the RA reactor are such that possibility of criticality accident can not be a priori excluded, according to standards and regulations for handling fissile material outside a reactor, before any action is undertaken subcriticality should be proven under normal, as well as under credible abnormal conditions. To perform this task, comprehensive nuclear criticality safety studies had to be performed. (author)
Riggs, Elisha; Yelland, Jane; Szwarc, Josef; Casey, Sue; Chesters, Donna; Duell-Piening, Philippa; Wahidi, Sayed; Fouladi, Fatema; Brown, Stephanie
With mounting evidence that poor maternal and child health outcomes are related to the social determinants of health, researchers need to engage with vulnerable and isolated communities to gather the evidence that is essential to determine appropriate solutions. Conventional research methods may not ensure the degree and quality of participation that is necessary for meaningful study findings. Participatory methods provide reciprocal opportunities for often excluded communities to both take part in, and guide the conduct of research. The Having a baby in a new country research project was undertaken to provide evidence about how women and men of refugee background experience health services at the time of having a baby. This two year, multifaceted proof of concept study comprised: 1) an organisational partnership to oversee the project; 2) a community engagement framework including: female and male Afghan community researchers, community and sector stakeholder advisory groups and community consultation and engagement. Inclusive research strategies that address power imbalances in research, and diversity of and within communities, are necessary to obtain the evidence required to address health inequalities in vulnerable populations. Such an approach involves mindfully adapting research processes to ensure that studies have regard for the advice of community members about the issues that affect them. Researchers have much to gain by committing time and resources to engaging communities in reciprocal ways in research processes.
Sharkey, Siobhan; Jones, Ray; Smithson, Janet; Hewis, Elaine; Emmens, Tobit; Ford, Tamsin; Owens, Christabel
The internet is widely used for health information and support, often by vulnerable people. Internet-based research raises both familiar and new ethical problems for researchers and ethics committees. While guidelines for internet-based research are available, it is unclear to what extent ethics committees use these. Experience of gaining research ethics approval for a UK study (SharpTalk), involving internet-based discussion groups with young people who self-harm and health professionals is described. During ethical review, unsurprisingly, concerns were raised about the vulnerability of potential participants. These were dominated by the issue of anonymity, which also affected participant safety and consent. These ethical problems are discussed, and our solutions, which included: participant usernames specific to the study, a closed website, private messaging facilities, a direct contact email to researchers, information about forum rules displayed on the website, a 'report' button for participants, links to online support, and a discussion room for forum moderators. This experience with SharpTalk suggests that an approach to ethics, which recognises the relational aspects of research with vulnerable people, is particularly useful for internet-based health research. The solutions presented here can act as guidance for researchers developing proposals and for ethics committees reviewing them.
Gaston Meskens; Erik Laes; Gilbert Eggermont
Full text of publication follows: Our modern society is increasingly faced with challenges and problems that cannot be solved by a purely technical, political or social approach. Radioactive waste disposal site selection and management can be characterised as one of these challenges that require a trans-disciplinary approach, integrating social, philosophical and ethical aspects in a 'technical' practice. Along the spirit of this trans-disciplinary approach, and in order to ensure the necessary public support for a policy decision regarding this practice, stakeholder involvement is more and more seen as a necessary policy element in the decision making process. The aim is to achieve the broad involvement of individuals from civil society, with significant representation from local communities, elected representatives and NGO's, as well as scientists from outside radioactive waste management organisations, together with established players in the field, such as the implementers of radioactive waste management, public authorities, experts and waste producers. Several initiatives regarding stakeholder involvement in radioactive waste management have been taken already in Europe, as well in the research era as in 'the real world'. The presentation will give a state of the art by examining some representative examples on both national and European level. The focus will be on the main social, philosophical and ethical aspects of the problem at stake, seen through a trans-disciplinary research lens. The presentation will conclude with some ideas that could inspire as well theoretical researchers as stakeholders-in-the-field. (authors)
Meskens, Gaston; Laes, Erik; Eggermont, Gilbert
Our modern society is increasingly faced with challenges and problems that cannot be solved by a purely technical, political or social approach. Radioactive waste disposal site selection and management can be characterised as one of these challenges that require a transdisciplinary approach, integrating social, philosophical and ethical aspects in a 'technical' practice. Along the spirit of this transdisciplinary approach, and in order to ensure the necessary public support for a policy decision regarding this practice, stakeholder involvement is more and more seen as a necessary policy element in the decision making process. The aim is to achieve the broad involvement of individuals from civil society, with significant representation from local communities, elected representatives and NGO's, as well as scientists from outside radioactive waste management organisations, together with established players in the field, such as the implementers of radioactive waste management, public authorities, experts and waste producers. Several initiatives regarding stakeholder involvement in radioactive waste management have been taken already in Europe, as well in the research era as in 'the real world'. The presentation will give a state of the art by examining some representative examples on both national and European level. The focus will be on the main social, philosophical and ethical aspects of the problem at stake, seen through a transdisciplinary research lens. The presentation will conclude with some ideas that could inspire as well theoretical researchers as stakeholders-in-the-field (Full text of contribution)
Małgorzata K. Szerla
Full Text Available Contextualisation is the process of identifying specific factors of a patient’s life situation, which is focused on individualised care. In the light of reference books, contextualisation is an integral part of therapy with an active participation of the patient and/or his/her carers. Among many factors that constitute the functioning of a person, family and socio-material situation, access to professional health care, and the ability to exercise self-care are major contextual factors of the patient’s health situation. The purpose of this article is to draw attention to the fact that the limiting oneself exclusively to algorithms as procedures based on the best evidence (best evidence medical research – BEMR may raise the specific danger of underestimating the variability of individual responses of the human body under the influence of factors forming a personal context. The phenomenon of contextualisation in the treatment of an individual patient is still not adequately disseminated, although it is an important element in the decision-making process, with proven impact on the efficiency and quality of care and satisfaction of a patient.
Collins, Karen; Boote, Jonathan; Ardron, David; Gath, Jacqui; Green, Tracy; Ahmedzai, Sam H
Patient and public involvement (PPI) has become an established theme within the UK health research policy and is recognised as an essential force in the drive to improve the quality of services and research. These developments have been particularly rapid in the cancer field. This paper outlines a model of PPI in research (known as the North Trent Cancer Research Network Consumer Research Panel, NTCRN CRP; comprising 38 cancer and palliative care patients/carers) and the key benefits and challenges to effective PPI in cancer research. The PPI model has become a sustainable, inclusive and effective way of implementing PPI within the cancer context. Challenges include (1) a lack of time and funding available to support the PPI model; (2) tensions between different stakeholder groups when developing and conducting health research; (3) panel members finding it difficult to effectively integrate into research meetings when their role and contribution is not made clear at the outset or when unfamiliar language and jargon are used and not explained; (4) some professionals remain unclear about the role and practical implications of PPI in research. However, notwithstanding its financial and organisational challenges, the way that the NTCRN CRP is supported has provided a solid base for it to flourish. PPI provides considerable opportunities for patients and the public to work collaboratively with professionals to influence the cancer research agenda, with the contribution of PPI to the research process being integral to the entire process from the outset, rather than appended to it. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
Uneke, Chigozie Jesse; Ezeoha, Abel Ebeh; Ndukwe, Chinwendu Daniel; Oyibo, Patrick Gold; Onwe, Friday; Aulakh, Bhupinder Kaur
Nigeria is one of the low and middle income countries (LMICs) facing severe resource constraint, making it impossible for adequate resources to be allocated to the health sector. Priority setting becomes imperative because it guides investments in health care, health research and respects resource constraints. The objective of this study was to enhance the knowledge and understanding of policymakers on research priority setting and to conduct a research priority setting exercise. A one-day evidence-to-policy research priority setting meeting was held. The meeting participants included senior and middle level policymakers and key decision makers/stakeholders in the health sector in Ebonyi State southeastern Nigeria. The priorities setting meeting involved a training session on priority setting process and conduction of priority setting exercise using the essential national health research (ENHR) approach. The focus was on the health systems building blocks (health workforce; health finance; leadership/governance; medical products/technology; service delivery; and health information/evidence). Of the total of 92 policymakers invited 90(97.8%) attended the meeting. It was the consensus of the policymakers that research should focus on the challenges of optimal access to health products and technology; effective health service delivery and disease control under a national emergency situation; the shortfalls in the supply of professional personnel; and the issues of governance in the health sector management. Research priority setting exercise involving policymakers is an example of demand driven strategy in the health policymaking process capable of reversing inequities and strengthening the health systems in LMICs.
Physics plays a very important role in most interdisciplinary efforts and can provide a solid foundation for students. Retention of students in STEM areas can be facilitated by enhanced interdisciplinary education and research since students are strongly attracted to research with societal relevance and show increasing enthusiasm about problems that have practical consequences. One such area of research is a collaborative Earth System Science. The Earth System is dynamic and complex. It is comprised of diverse components that interact. By providing students the opportunities to work in interdisciplinary groups on a problem that reflects a complex, real-world situation they can see the linkages between components of the Earth system that encompass climate and all its components (weather precipitation, temperature, etc.) and technology development and deployment of sensors and sensor networks and social impacts. By involving students in the creation of their own personalized professional development plan, students are more focused and engaged and are more likely to remain in the program.
Furimsky, Ivana; Cheung, Amy H; Dewa, Carolyn S; Zipursky, Robert B
Recruitment and retention of research participants is often the most labor-intensive and difficult component of clinical trials. Poor recruitment and retention frequently pose as a major barrier in the successful completion of clinical trials. In fact, many studies are prematurely terminated, or their findings questioned due to low recruitment and retention rates. The conduct of clinical trials involving youth with a first episode of mental illness comes with additional challenges in recruitment and retention including barriers associated with engagement and family involvement. To develop effective early interventions for first episode mental illness, it is necessary to develop strategies to enhance recruitment and retention in this patient population. This article presents the recruitment and retention challenges experienced in two clinical trials: one involving participants experiencing a first episode of depression and one involving participants experiencing a first episode psychosis. Challenges with recruitment and retention are identified and reviewed at both the patient level and clinician level. Strategies that were implemented to enhance recruitment and retention in these two studies are also discussed. Finally, ethical issues to consider when implementing these strategies are also highlighted.
Brighton, Lisa Jane; Pask, Sophie; Benalia, Hamid; Bailey, Sylvia; Sumerfield, Marion; Witt, Jana; de Wolf-Linder, Susanne; Etkind, Simon Noah; Murtagh, Fliss E M; Koffman, Jonathan; Evans, Catherine J
Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and rehabilitation research, we developed an online forum for PPI: www.csipublicinvolvement.co.uk. In this study, we explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it. We used an existing theory about online interventions to help choose the 'right' questions to ask participants. We invited PPI members and researchers who had used the online forum to participate in focus groups, and identified the most important themes discussed. Within this study, PPI members have helped with the interview questions, analysis, and write up. Overall, four PPI members and five researchers participated in the focus groups. Participants felt the online forum worked well and had multiple benefits. From the discussions, we identified four key questions to consider when developing online methods for PPI: how does the forum work, how does it engage people, how does it empower people, and what is the impact? Participants suggested the forum could be improved by being more PPI and less researcher focused. We conclude that when developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. Future work can use these four domains when developing their own online PPI methods. Patient and public involvement (PPI) in research is increasingly recognised as important. Most PPI activities take place face-to-face, yet this can be difficult for people with ill health or caring responsibilities, and may exclude people from hard-to-reach populations (e.g. living in vulnerable social circumstances and/or remote geographical locations). These challenges are particularly pertinent in
Mahnke, Andrea N; Plasek, Joseph M; Hoffman, David G; Partridge, Nathan S; Foth, Wendy S; Waudby, Carol J; Rasmussen, Luke V; McManus, Valerie D; McCarty, Catherine A
Many informed consent studies demonstrate that research subjects poorly retain and understand information in written consent documents. Previous research in multimedia consent is mixed in terms of success for improving participants' understanding, satisfaction, and retention. This failure may be due to a lack of a community-centered design approach to building the interventions. The goal of this study was to gather information from the community to determine the best way to undertake the consent process. Community perceptions regarding different computer-based consenting approaches were evaluated, and a computer-based consent was developed and tested. A second goal was to evaluate whether participants make truly informed decisions to participate in research. Simulations of an informed consent process were videotaped to document the process. Focus groups were conducted to determine community attitudes towards a computer-based informed consent process. Hybrid focus groups were conducted to determine the most acceptable hardware device. Usability testing was conducted on a computer-based consent prototype using a touch-screen kiosk. Based on feedback, a computer-based consent was developed. Representative study participants were able to easily complete the consent, and all were able to correctly answer the comprehension check questions. Community involvement in developing a computer-based consent proved valuable for a population-based genetic study. These findings may translate to other types of informed consents, including those for trials involving treatment of genetic disorders. A computer-based consent may serve to better communicate consistent, clear, accurate, and complete information regarding the risks and benefits of study participation. Additional analysis is necessary to measure the level of comprehension of the check-question answers by larger numbers of participants. The next step will involve contacting participants to measure whether understanding of
A Coordinated Research Programme (CRP) for the application of inorganic sorbents in liquid waste treatment and immobilization was initiated by the IAEA in 1992. The results of this CRP are presented in this report. Fifteen institutions from fourteen countries were involved in this programme. The framework of this CRP was: (1) to conduct fundamental studies on sorbent structure and sorption mechanism; (2) to obtain thermodynamic and kinetic data of the treatment process; (3) to define sorption mechanism of radionuclides on different soils; (4) to identify sorbents appropriate for treatment of liquid waste streams; (5) to develop standard tests to be able to compare results of different groups of investigations. Refs, figs, tabs
Forbat, Liz; Hubbard, Gill
The aim of this study was to explore what data emerge when former carergivers (co-researchers) are trained to interview current care-givers about their experiences. Despite a trend of involving service users in conducting research interviews, there have been few examinations of how and whether a common service user identity has an impact on the data generated. Four co-researchers were recruited, trained and supported to conduct qualitative interviews with 11 current carers of people receiving palliative services. Conversation analysis was used to examine the conversational characteristics of the research interviews. Data were collected in 2010-2011. Conversation analysis identified that interactional difficulties were evident across the data. When co-researchers talked about their own experiences as carers, interviewees frequently changed the topic of conversation, thereby closing-down opportunities for further disclosure or elaboration from the interviewee about the original topic. Conversation analysis identifies how caregiving identities are co-constructed and points where there is agreement and disagreement in the co-construction. © 2015 John Wiley & Sons Ltd.
Cheung, Peter P; de Wit, Maarten; Bingham, Clifton O; Kirwan, John R; Leong, Amye; March, Lyn M; Montie, Pam; Scholte-Voshaar, Marieke; Gossec, Laure
Patient participation in research is increasing; however, practical guidelines to enhance this participation are lacking. Specifically within the Outcome Measures in Rheumatology (OMERACT) organization, although patients have participated in OMERACT meetings since 2002, consensus about the procedures for involving patients in working groups has not been formalized. The objective is to develop a set of recommendations regarding patient research partner (PRP) involvement in research working groups. We conducted a systematic literature review on recommendations/guidelines of PRP involvement in research; elaborated a structured consensus process involving multiple participants to develop a set of recommendations; and sought endorsement of recommendations by OMERACT. In the 18 articles included in the literature review, there was general agreement on the broad concepts for recommendations covering PRP involvement in research although they were heterogeneous in detail. Most considered PRP involvement in all phases of research with early engagement, training, and support important, but details on the content were scarce. This review informed a larger consensus-building process regarding PRP inclusion in OMERACT research. Three overarching principles and 8 recommendations were developed, discussed, and refined at OMERACT 2014. The guiding principles were endorsed during the OMERACT plenary session. These recommendations for PRP involvement in OMERACT research reinforce the importance of patient participation throughout the research process as integral members. Although the applicability of the recommendations in other research contexts should be assessed, the generalizability is expected to be high. Future research should evaluate their implementation and their effect on outcome development.
Evans, David; Bird, Emma; Gibson, Andy; Grier, Sally; Chin, Teh Li; Stoddart, Margaret; MacGowan, Alasdair
Patient and public involvement (PPI) is increasingly recognized as bringing a range of benefits to clinical and health services research. Recent systematic reviews have identified and synthesized many benefits (eg higher recruitment rates) and some costs (eg extra time need). Much of the literature focuses on PPI in long-term conditions rather than more acute health care in which the majority of microbiological research is undertaken. The aim was to identify the extent, quality and impact of PPI in antimicrobial drug development research. Objectives were to identify any relevant reporting of PPI in antimicrobial research; appraise the quality of reporting on PPI using recognized PPI reporting and critical appraisal tools; and extract and synthesize data on the impact of PPI. A systematic review was undertaken with a search strategy based on four word groups (PPI, patients, antimicrobial drug development and outcomes). Eight online databases were searched. English language publication, publication between 1996 and 2016 and studies describing PPI in antimicrobial drug development research. No studies were found through online searching that met the search strategy and inclusion criteria. One relevant protocol paper with a brief mention of PPI was identified through expert recommendation. Commentary papers recommending PPI were identified through website searching and expert opinion. Despite strong policy guidance encouraging PPI at the international and national levels, and anecdotal accounts of PPI taking place, evidence for the extent, quality and impact of PPI in antimicrobial drug development research has not yet appeared in the peer-reviewed literature. © 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Quattrocchi, Fedora; Vaccaro, Carmela; Boschi, Enzo
Smart grids-Smat cities "fashion" requires management plans of highly urbanized areas located over the Padanian floodplain, which are prone to diffuse pollution of both lands and urban sectors, mostly after the disasters caused by tremendous alluvial rains in January 2014, when shallow aquifers and agricultural matters could have increase pollution over wide territory. Moreover the urban expansion has affected areas previously used for industrial activity and in some cases such for landfills. When the loss of memory of previous activity prevails after urbanization, with health issues, ethical questions are inevitable, accompanied by social conflicts and economic impacts. The alluvial plains of active tectonic areas - as the Padania Valley - in additions to widespread "anthropogenic pollution" is suffering from widespread "natural pollution" of deep fluid sources - mainly methane - corresponding to areas prone to uprising gaseous brines, along faults. Some of them were partially activated during the 2012 Emilia seismic sequence. This noteworthy seismic sequence engaged discussion about the possible role of gas storages and hydrocarbons production or the simple/exploring drilling activity to trigger typical tectonic seismicity. The paper deepen this troubled communication strategy, their gaps and peculiar geopolicy case histories, to avoid the same strategy, in the future. On the other hand, gas burst or brine-gas-contamination in shallow aquifers, soils and indoor, should be studied by simple and cheap methods, by deepening stratigraphic gaps for the tectonics effects on sedimentation: natural processes should be recalled prior to recall anthropogenic causes, if any. Policy should be more responsible in state clearly the role of research in study infrastructures/processes, also when engaged by private companies, for sites selected by ministries mostly to star research: relevant gaps involves serious confusion in the public as regards responsibility and an exact
McCabe, O Lee; Marum, Felicity; Semon, Natalie; Mosley, Adrian; Gwon, Howard; Perry, Charlene; Moore, Suzanne Straub; Links, Jonathan M
Concerns have arisen over recent years about the absence of empirically derived evidence on which to base policy and practice in the public health system, in general, and to meet the challenge of public health emergency preparedness, in particular. Related issues include the challenge of disaster-caused, behavioral health surge, and the frequent exclusion of populations from studies that the research is meant to aid. To characterize the contributions of nonacademic collaborators to a series of projects validating a set of interventions to enhance capacity and competency of public mental health preparedness planning and response. Urban, suburban, and rural communities of the state of Maryland and rural communities of the state of Iowa. Study partners and participants (both of this project and the studies examined) were representatives of academic health centers (AHCs), local health departments (LHDs), and faith-based organizations (FBOs) and their communities. A multiple-project, case study analysis was conducted, that is, four research projects implemented by the authors from 2005 through 2011 to determine the types and impact of contributions made by nonacademic collaborators to those projects. The analysis involved reviewing research records, conceptualizing contributions (and providing examples) for government, faith, and (nonacademic) institutional collaborators. Ten areas were identified where partners made valuable contributions to the study series; these "value-areas" were as follows: 1) leadership and management of the projects; 2) formulation and refinement of research topics, aims, etc; 3) recruitment and retention of participants; 4) design and enhancement of interventions; 5) delivery of interventions; 6) collection, analysis, and interpretation of data; 7) dissemination of findings; 8) ensuring sustainability of faith/government preparedness planning relationships; 9) optimizing scalability and portability of the model; and 10) facilitating
This paper presents an exploratory study to investigate what could be the role of the charities concerned with scientiﬁc research in the European Research Area (ERA). The analysis particularly concentrates on UK and Italy. The questions on which the exploratory study was developed are: 1. “In what speciﬁc areas of the ERA did the European Commission (EC) for the involvement of charities? And could there be other areas in which charities might participate?” 2. “Given the role and situation of charities in UK and Italy, what role, if any, could they be willing to play in the ERA? Is it the same as the one proposed by the Commission or not?” In order to answer these questions, the following discussion will focus at ﬁrst on a short overview of the charity sector, both at the general level and at the national level in UK and Italy. Then a brief presentation of the European Research Area will be given. The hypotheses of the study will then be presented, followed by a methodological section. Results wi...
Auerbach, Judith D; Smith, Laramie R
Although substance use continues to be a significant component of HIV risk among women worldwide, to date, relatively little attention has been paid in research, services, or policy to substance-involved women (SIW). HIV acquisition for SIW stems from transmission risks directly related to substance use and risks associated with sexual activity in which power to negotiate risk and safety are influenced by dynamics of male partnerships, sex work, and criminalization (of both drug use and sex work), among other factors. As such, HIV risk for SIW resides as much in the environment—physical, social, cultural, economic, and political—in which drug use occurs as it does from transmission-related behaviors of individual women. To reduce HIV infections among SIW, it is important to specify the interaction of individual- and environmental-level factors, including, but not limited to those related to women's own substance use, that can and ought to be changed. This involves theorizing about the interplay of gender, substance use, and HIV risk, and incorporating that theoretical understanding into intervention design and evaluation. A review of the published literature focused on HIV prevention among SIW revealed a general lack of theoretical and conceptual foundation specific to the gender-related and environmental drivers of HIV in this population. Greater theoretical linkages to intersectionality and syndemic approaches are recommended to better identify and target relevant mechanisms by which the interplay of gender dynamics and substance use potentiate the likelihood of HIV acquisition and transmission among SIW.
Li, Guowei; Kamel, Mariam; Jin, Yanling; Xu, Michael Kuan; Mbuagbaw, Lawrence; Samaan, Zainab; Levine, Mitchell Ah; Thabane, Lehana
Article retraction is a measure taken by journals or authors where there is evidence of research misconduct or error, redundancy, plagiarism or unethical research. Recently, the retraction of scientific publications has been on the rise. In this survey, we aimed to describe the characteristics and distribution of retracted articles and the reasons for retractions. We searched retracted articles on the PubMed database and Retraction Watch website from 1980 to February 2016. The primary outcomes were the characteristics and distribution of retracted articles and the reasons for retractions. The secondary outcomes included how article retractions were handled by journals and how to improve the journal practices toward article retractions. We included 1,339 retracted articles. Most retracted articles had six authors or fewer. Article retraction was most common in the USA (26%), Japan (11%) and Germany (10%). The main reasons for article retraction were misconduct (51%, n = 685) and error (14%, n = 193). There were 66% (n = 889) of retracted articles having male senior or corresponding authors. Of the articles retracted after August 2010, 63% (n = 567) retractions were reported on Retraction Watch. Large discrepancies were observed in the ways that different journals handled article retractions. For instance, articles were completely withdrawn from some journals, while in others, articles were still available with no indication of retraction. Likewise, some retraction notices included a detailed account of the events that led to article retraction, while others only consisted of a statement indicating the article retraction. The characteristics, geographic distribution and reasons for retraction of published articles involving human research participants were examined in this survey. More efforts are needed to improve the consistency and transparency of journal practices toward article retractions.
Boote, Jonathan D; Dalgleish, Mary; Freeman, Janet; Jones, Zena; Miles, Marianne; Rodgers, Helen
It is good practice for the public to be involved in developing research ideas into grant applications. Some positive accounts of this process have been published, but little is known about when their reactions are negative and when researchers' ideas are abandoned. To present a case study account of when an academic-led idea for funding was not supported by stroke survivors and carers who were asked to contribute to its development, together with a reflection on the implications of the case from all the stakeholders involved. A reflective case study of a research idea, developed by an academic researcher, on which stakeholders were consulted. University researchers, clinicians, public involvement managers, and stroke survivors and carers from the NIHR's Stroke Research Network. Although the idea met with the approval of health professionals, who were keen to develop it into a funding bid, the stroke survivors and carers did not think the idea worth pursuing. This lack of patient and carer support led to the idea being abandoned. Reflecting on this, those involved in the consultation believed that the savings accrued from abandoning the idea, in terms of ensuring that public money is not wasted, should be seen as an important benefit of public involvement in the research process. Little is known about the role of the public in the abandonment of research ideas. We recommend that further research is undertaken into this important contribution that patients and the public can make to health research. © 2012 John Wiley & Sons Ltd.
George, Asha S; Mehra, Vrinda; Scott, Kerry; Sriram, Veena
Community participation is a major principle of people centered health systems, with considerable research highlighting its intrinsic value and strategic importance. Existing reviews largely focus on the effectiveness of community participation with less attention to how community participation is supported in health systems intervention research. To explore the extent, nature and quality of community participation in health systems intervention research in low- and middle-income countries. We searched for peer-reviewed, English language literature published between January 2000 and May 2012 through four electronic databases. Search terms combined the concepts of community, capability/participation, health systems research and low- and middle-income countries. The initial search yielded 3,092 articles, of which 260 articles with more than nominal community participation were identified and included. We further excluded 104 articles due to lower levels of community participation across the research cycle and poor description of the process of community participation. Out of the remaining 160 articles with rich community participation, we further examined 64 articles focused on service delivery and governance within health systems research. Most articles were led by authors in high income countries and many did not consistently list critical aspects of study quality. Articles were most likely to describe community participation in health promotion interventions (78%, 202/260), even though they were less participatory than other health systems areas. Community involvement in governance and supply chain management was less common (12%, 30/260 and 9%, 24/260 respectively), but more participatory. Articles cut across all health conditions and varied by scale and duration, with those that were implemented at national scale or over more than five years being mainstreamed by government. Most articles detailed improvements in service availability, accessibility and
Impact of previously disadvantaged land-users on sustainable agricultural ... about previously disadvantaged land users involved in communal farming systems ... of input, capital, marketing, information and land use planning, with effect on ...
Barroso, A.C.O.; Imakuma, K.; Reis, J.S.B. Jr.
courses within the USP grid. 3) The fact that the Brazilian Council for Scientific and Technological Development - CNPq has a range of research productivity fellowships for people who achieve a certain sustained level of publications. Depending on the researcher's classification, this mechanism includes a monthly income addition plus small funds for expenditures in traveling and laboratory consumables. Items a and b have caused many IPEN employees start to work towards graduate education at USP (IPEN). As they take most of the disciplines in subjects related to nuclear, which are taught by senior researchers / professors of IPEN, they end up performing their degree research work in fields that, most of the times, are related to the current work of their advisors at IPEN. Retired researchers usually keep the professor status and activities, probably because of their strong research group links, constructed over the years, but also because to have students is possibly the most important lever to keep up the indexes to maintain the CNPq productivity fellowship. This dynamic network is a powerful natural mechanism to transfer knowledge from retiring experts and also to disseminate nuclear knowledge, since IPEN has a diversified portfolio of disciplines that is also of interest to other students of the USP community. Based on the co-authorship of publications involving people from IPEN, collected annually from 2000 up to 2005, the social network evidenced by these data bases was analyzed. For the network 'photography' of each year a set of indicators were computed: a participation index of retirees in the publications of IPEN (no. of publications involving retirees / total no. of publications); a partnership index measuring the 'social capillarity' of the average collaborating retiree (no. of current workers that co-authored / no. of retired co-authors); a publication productivity index for the retired researchers; and some SN indexes, such as, diameter of the network
Pandya-Wood, Raksha; Barron, Duncan S; Elliott, Jim
Researchers who conduct studies in health and social care are encouraged to involve the public as early as possible in the process of designing their studies. Before their studies are allowed to start researchers must seek approval from a Research Ethics Committee, which will assess whether the study is going to be safe and ethical for patients or healthy volunteers to take part in. The process of ethical review does not consider how researchers work with patients and the public early on to design their studies. Furthermore, there is no requirement for researchers to seek ethical approval for public involvement. However, in our work advising researchers about public involvement we have found that the ways in which researchers involve the public in the design of their studies are sometimes unintentionally unethical, and this is the focus of our paper. We have observed ten areas where ethical issues may arise because of the actions researchers may or may not take and which might consequently have a negative impact. Therefore, we have used these observations to develop a "framework" to help researchers and the public work together at the early design stage in ways that are ethical. Our intention for the framework is to help researchers be mindful of these ten areas and how easily ethical issues can arise. The framework suggests some ways to overcome the potential issues in each of the ten areas. The ten areas are: 1) Allocating sufficient time for public involvement; 2) Avoiding tokenism; 3) Registering research design stage public involvement work with NHS Research & Development Trust Office at earliest opportunity; 4) Communicating clearly from the outset; 5) Entitling public contributors to stop their involvement for any unstated reasons; 6) Operating fairness of opportunity; 7) Differentiating qualitative research methods and public involvement activities; 8) Working sensitively; 9) Being conscious of confidentiality and 10) Valuing, acknowledging and rewarding
Crocker, Joanna C; Boylan, Anne-Marie; Bostock, Jennifer; Locock, Louise
There are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals. To explore the views of PPI contributors involved in health research regarding the impact of PPI on research, whether and how it should be assessed. Qualitative interview study. Thirty-eight PPI contributors involved in health research across the UK. Participants felt that PPI has a beneficial impact on health research. They described various impactful roles, which we conceptualize as the 'expert in lived experience', the 'creative outsider', the 'free challenger', the 'bridger', the 'motivator' and the 'passive presence'. Participants generally supported assessing the impact of PPI, while acknowledging the challenges and concerns about the appropriateness and feasibility of measurement. They expressed a range of views about what impacts should be assessed, by whom and how. Individual feedback on impact was seen as an important driver of improved impact and motivation to stay involved. While there appears to be widespread support for PPI impact assessment among PPI contributors, their views on what to assess and how are diverse. PPI contributors should be involved as equal partners in debates and decisions about these issues. Individual feedback on impact may increase PPI contributors' potential impact and their motivation to stay involved. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.
Millenky, Megan; Mage, Caroline
Involvement in the juvenile justice system has tremendous costs for the individuals within it, as well as for society. Such involvement may damage a child's relationships with friends and family, negatively affect mental health, and interrupt the academic progress and work experience that should accumulate during adolescence. On the societal…
Gaillard, Segolene; Malik, Salma; Preston, Jenny; Escalera, Begonya Nafria; Dicks, Pamela; Touil, Nathalie; Mardirossian, Sandrine; Claverol-Torres, Joana; Kassaï, Behrouz
Children and young people are seen as fundamental to the design and delivery of clinical research as active and reflective participants. In Europe, involvement of children and young people in clinical research is promoted extensively in order to engage young people in research as partners and to give them a voice to raise their own issues or opinions and for their involvement in planning and decision making in addition to learning research skills. Children and young people can be trained in clinical research through participation in young person advisory groups (YPAGs). Members of YPAGs assist other children and young people to learn about clinical research and share their experience and point of view with researchers, thereby possibly influencing all phases of research including the development and prioritization of research questions, design and methods, recruitment plans, and strategies for results dissemination. In the long term, the expansion of YPAGs in Europe will serve as a driving force for refining pediatric clinical research. It will help in a better definition of research projects according to the patients' needs. Furthermore, direct engagement of children and young people in research will be favorable to both researchers and young people. © 2018 Société Française de Pharmacologie et de Thérapeutique.
Skeith, Leslie; Carrier, Marc; Shivakumar, Sudeep; Langlois, Nicole; Le Gal, Gregoire; Harris, Ilene; Gonsalves, Carol
Several barriers exist for training and retention of clinician scientists, including difficulty in navigating research-related tasks in the workplace and insufficient mentorship. Our aim was to identify what core research knowledge and skills are important for the success of clinician scientists in thrombosis research, and trainees' perceived confidence in those skills, in order to develop a targeted educational intervention. A pre-tested online survey was administered to trainees and research faculty of the Canadian thrombosis research network, CanVECTOR, between September 2016 and June 2017. The importance (research faculty) and confidence (trainees) of 45 research knowledge/skills were measured using a 5-point Likert scale. The survey response rate was 49% (28/57) for research faculty and 100% (10/10) for trainees. All research faculty rated developing a good research question, grant writing and writing strategies for successful publication as 'very' or 'extremely' important for trainees to learn to better transition in becoming independent researchers. Other important areas included practical aspects of research. A qualitative thematic analysis of open text responses identified 'time management' and 'leadership and teamwork' as additional important research skills. Confidence reported for each topic varied across trainees. There were three research knowledge and/or skills that ≥75% of research faculty deemed highly important and ≥50% of trainees reported lacking confidence in: grant writing, the peer-review grant process, and knowledge translation strategies. Developing a good research question, communicating research ideas and results and the practical aspects of research are important areas to focus future efforts in thrombosis research training. Copyright © 2017 Elsevier Ltd. All rights reserved.
Goodwin, Elizabeth; Boddy, Kate; Tatnell, Lynn; Hawton, Annie
Over recent years, public involvement in health research has expanded considerably. However, public involvement in designing and conducting health economics research is seldom reported. Here we describe the development, delivery and assessment of an approach for involving people in a clearly defined piece of health economics research: selecting health states for valuation in estimating quality-adjusted life-years (QALYs). This involvement formed part of a study to develop a condition-specific preference-based measure of health-related quality of life, the Multiple Sclerosis Impact Scale (MSIS-8D), and the work reported here relates to the identification of plausible, or realistic, health states for valuation. An Expert Panel of three people with multiple sclerosis (MS) was recruited from a local involvement network, and two health economists designed an interactive task that enabled the Panel to identify health states that were implausible, or unlikely to be experienced. Following some initial confusion over terminology, which was resolved by discussion with the Panel, the task worked well and can be adapted to select health states for valuation in the development of any preference-based measure. As part of the involvement process, five themes were identified by the Panel members and the researchers which summarised our experiences of public involvement in this health economics research example: proportionality, task design, prior involvement, protectiveness and partnerships. These are described in the paper, along with their practical implications for involving members of the public in health economics research. Our experience demonstrates how members of the public and health economists can work together to improve the validity of health economics research. Plain Language Summary It has become commonplace to involve members of the public in health service research. However, published reports of involving people in designing health economics research are rare. We
Charles, Pajarita; Spielfogel, Jill; Gorman-Smith, Deborah; Schoeny, Michael; Henry, David; Tolan, Patrick
Despite agreement on the value of father involvement in children’s lives, research has been limited due to the exclusion of fathers in studies, questionable validity of mothers’ reports on father involvement, and simple measures of fathering behavior. Our study extends previous research by comparing reports of father involvement using robust, multidimensional father involvement measures. Data from 113 fathers and 126 mothers reporting on 221 children were used to assess father involvement. Results indicate that fathers reported significantly higher levels of involvement than mothers reported. Findings from hierarchical linear models suggest that race/ethnicity and mothers’ reports of positive relationship quality were associated with smaller discrepancies in reports of father involvement, whereas nonmarried partnerships, older children, father residence, and biological status predicted larger discrepancies. Our study demonstrates the importance of obtaining father involvement reports directly from fathers and why father involvement should be assessed as a multidimensional construct to examine fathering behavior. PMID:29515272
Previous research has consistently demonstrated a relationship between gang membership and involvement in illegal substances. In addition, researchers have noted that gang members are frequently more heavily involved in drug sales, which often lead to increases in violent behaviors. Most of this research, however, is either cross-sectional or…
Asena ALTIN GÜLOVA
Full Text Available One of the increasingly momentous topics in organisation studies is emotional labor. The direction towards which emotional labor affects the job involvement of service workers has also been studied and stated that this direction might change based on the choice of labor behaviour. The concept of "supervisor support" refers to the close, intimate and understanding attitude of the superior to the subordinates. As a result of the study conducted on student affairs office employees of three state universities in the Aegean Region (n=127 a positive significant relationship among three emotional labor behaviour and job involvement was discerned and an increase in parallel with supervisory support was displayed.
Snape, D; Kirkham, J; Preston, J; Popay, J; Britten, N; Collins, M; Froggatt, K; Gibson, A; Lobban, F; Wyatt, K; Jacoby, A
Objective There is growing interest in the potential benefits of public involvement (PI) in health and social care research. However, there has been little examination of values underpinning PI or how these values might differ for different groups with an interest in PI in the research process. We aimed to explore areas of consensus and conflict around normative, substantive and process-related values underpinning PI. Design Mixed method, three-phase, modified Delphi study, conducted as part of a larger multiphase project. Setting The UK health and social care research community. Participants Stakeholders in PI in research, defined as: clinical and non-clinical academics, members of the public, research managers, commissioners and funders; identified via research networks, online searches and a literature review. Results We identified high levels of consensus for many normative, substantive and process-related issues. However, there were also areas of conflict in relation to issues of bias and representativeness, and around whether the purpose of PI in health and social care research is to bring about service change or generate new knowledge. There were large differences by group in the percentages endorsing the ethical justification for PI and the argument that PI equalises power imbalances. With regard to practical implementation of PI, research support infrastructures were reported as lacking. Participants reported shortcomings in the uptake and practice of PI. Embedding PI practice and evaluation in research study designs was seen as fundamental to strengthening the evidence base. Conclusions Our findings highlight the extent to which PI is already embedded in research. However, they also highlight a need for ‘best practice’ standards to assist research teams to understand, implement and evaluate PI. These findings have been used in developing a Public Involvement Impact Assessment Framework (PiiAF), which offers guidance to researchers and members of the
Thornton, Hazel; Edwards, Adrian; Elwyn, Glyn
This paper offers 'consumer-led' reflections by steering group members of a patient-centred research study involving consumer advocates, patients' associations and patients, throughout the whole study, from pre- to post-study phases. ORIGINAL STUDY DESIGN: The study: 'Shared decision making and risk communication in general practice' incorporated systematic reviews, psychometric evaluation of outcome measures, and quantitative, qualitative and health economic analyses of a cluster randomized trial of professional skill development, all informed by consumer and patient engagement. The work was produced by a wide collaboration led by researchers from the Department of General Practice, University of Wales College of Medicine, Cardiff, including a consumers' advisory group and a patients' association. The study participants were 20 general practitioners from Gwent, their practice staff, and almost 800 patients at these practices. Consumers and patients contributed to several stages of the research from inception and design, securing of funding, implementation of the protocol, and interpretation and dissemination of the findings. 'Patient involvement' research initiatives that include an equally wide variety of 'user' participants as 'health-professional' participants, accountable to a 'Health in Partnership' funded project, require a user-led viewpoint to be presented and disseminated. This paper presents reflections on the processes of the research, the interpretations of study findings by the involved parties, and notes how this model is fundamental to effective research in the field of patient-centred health care if future practice, policy and research are to change.
Friedrich, Jon M.
Engaging freshman and sophomore students in meaningful scientific research is challenging because of their developing skill set and their necessary time commitments to regular classwork. A project called the Chondrule Analysis Project was initiated to engage first- and second-year students in an initial research experience and also accomplish…
Balmer, Claire; Griffiths, Frances; Dunn, Janet
To discuss the issues and challenges that may occur when using participant-produced photographs in nursing research. The place of visual representation in society is increasingly being recognized and there is a growing discussion on the advantages of implementing visual methods, such as photography, in health and illness research. Integrating photographs has much potential for both nurse researchers and participants but it remains a novel method of gathering qualitative data and many aspects have had little consideration in the nursing and medical literature. This paper presents a discussion of some of the issues that may arise when using photographs as data. It draws on examples of the insights and experiences we had when we asked study participants to produce photographs to complement their interviews designed to explore their experience of living after cancer. Discussion paper This paper is based on our own experiences and supported by literature and theory. Disseminating this research has prompted much interest from nurses and clinical staff. This paper should highlight some of the factors that may need to be addressed before employing such a novel method, thus ensuring the research process is positive and the outcome relevant for all parties. Examples are used here to illustrate practical, ethical and philosophical issues around the research plan, creating and interpreting photographic data, confidentiality and copyright and analysing and disseminating photographs produced for research. © 2015 John Wiley & Sons Ltd.
Iliffe, Steve; McGrath, Terry; Mitchell, Douglas
(i) To describe patient and public involvement (PPI) in a network promoting research in dementia and neurodegenerative diseases, in terms of activity at the different stages of the research cycle and within the different levels of the research network. (ii) To use case studies to try and answer the question: what benefits (if any) does PPI in research bring to the research process? PPI in health research is a central part of government policy, but the evidence base underpinning it needs strengthening. PPI allows exploration of feasibility, acceptability and relevance of hypotheses, assists in the precise definition of research questions and increases accrual to studies. However, the measurement of outcomes is methodologically difficult, because the impact of lay researchers may occur through team interactions and be difficult to untangle from the efforts of professional researchers. Opportunities for PPI in rapidly progressive diseases may be limited, and involvement of people with marked cognitive impairment is particularly challenging. (i) Description of PPI within the DeNDRoN network. (ii) Case studies of three research projects which asked for extra help from centrally organized PPI. PPI in research projects on the DeNDRoN portfolio may function at different levels, occurring at project, local research network and national level. Case studies of three research projects show different roles for PPI in research and different functions for centrally organized PPI, including contribution to remedial action in studies that are not recruiting to target, solving problems because of the complexity and sensitivity of the research topic, and linking researchers to PPI resources. The case studies suggest that centrally organized PPI can have 'diagnostic' and remedial functions in studies that are struggling to recruit and serve as reinforcement for study-level PPI in the complex and sensitive research topics that are typical in neurodegenerative diseases research. PPI may
Thornton, H.; Edwards, A.; Elwyn, G.
OBJECTIVE: This paper offers 'consumer-led' reflections by steering group members of a patient-centred research study involving consumer advocates, patients' associations and patients, throughout the whole study, from pre- to post-study phases. ORIGINAL STUDY DESIGN: The study: 'Shared decision
Feb 1, 2016 ... University Hospital, DK-5000 Odense, Denmark, 3Center for Global Health, Institute of Clinical Research, University of Southern Denmark, DK-5000. Odense .... BHP is a Danish-Guinean Demographic Surveillance Site with a study-area .... variables such as age groups, previous military duty, history of.
Jun 24, 2015 ... related immunosuppression, previous history of TB, and pause in treatment . In Brazil, researchers .... treatment, use of traditional medicines or herbs, history of TB drug side effects and treatment delay). ..... therapy for pulmonary tuberculosis in Lima Ciudad, Peru. International journal of tuberculosis and ...
Travers, R; Wilson, M G; Flicker, S; Guta, A; Bereket, T; McKay, C; van der Meulen, A; Cleverly, S; Dickie, M; Globerman, J; Rourke, S B
Drawing on the Greater Involvement of People with HIV/AIDS (GIPA) principle, the HIV/AIDS movement began to "democratize" research in Canada in the mid-1990s. To date, there is little evidence about the success of the community-based research (CBR) movement in relation to the implementation of GIPA. We draw on findings from a larger study examining barriers and facilitating factors in relation to HIV-related CBR in Ontario, Canada. An online survey was completed by 39 senior managers in Ontario AIDS service organizations (ASOs). Twenty-five in-depth, semi-structured interviews were then conducted to further explore the survey findings. Survey respondents reported that, compared to researchers and frontline service providers, people living with HIV/AIDS (PLWHA) tended to be the least involved in all stages (input, process and outcome) of CBR projects. AIDS service organizations with a mandate that included serving rural and urban communities reported even lower levels of PLWHA involvement in CBR. Qualitative data reveal complex barriers that make meaningful PLWHA engagement in CBR difficult, including: HIV-related stigma; health-related challenges; "credentialism"; lack of capacity to engage in research; other issues taking priority; and mistrust of researchers. Facilitating factors included valuing lived experience; training and mentoring opportunities; financial compensation; trust building; and accommodating PLWHA's needs. While there is strong support for the GIPA principles in theory, practice lags far behind.
Devonport, Tracey J; Nicholls, Wendy; Johnston, Lynne H; Gutteridge, Robin; Watt, Angela
This article presents a reflective account of Patient and Public Involvement (PPI) in the development of obesity and binge eating research. We established Patient Advisory Groups (PAGs) at two English regional National Health Service (NHS) weight management services. PPI was evaluated as follows: (i) PAG members completed a Post Participation Evaluation Questionnaire, (ii) PAG meetings captured group discussion on PPI involvement, (iii) practitioner and researchers produced written reflections on PPI and (iv) sources one to three were consolidated during reflections that took place via e-mail and telephone correspondence between researchers and practitioners, culminating in a summary SKYPE meeting between one practitioner and one researcher involved in the PAGs. Results in the form of reflections suggest guidelines on undertaking PPI were helpful with regard 'what to do', but less helpful on 'how'. For example, suggestions for the management of interpersonal factors such as eliciting self-disclosure and managing power differentials are insufficiently addressed in existing guidelines. The present case study illustrated how interpersonal considerations can help or hinder the optimal use of PPI. Recommendations for practitioners and researchers planning PPI are offered.
Beck, Cheryl Tatano; Watson, Sue
Nine percent of new mothers in the United States who participated in the Listening to Mothers II Postpartum Survey screened positive for meeting the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition criteria for posttraumatic stress disorder after childbirth. Women who have had a traumatic birth experience report fewer subsequent children and a longer length of time before their second baby. Childbirth-related posttraumatic stress disorder impacts couples' physical relationship, communication, conflict, emotions, and bonding with their children. The purpose of this study was to describe the meaning of women's experiences of a subsequent childbirth after a previous traumatic birth. Phenomenology was the research design used. An international sample of 35 women participated in this Internet study. Women were asked, "Please describe in as much detail as you can remember your subsequent pregnancy, labor, and delivery following your previous traumatic birth." Colaizzi's phenomenological data analysis approach was used to analyze the stories of the 35 women. Data analysis yielded four themes: (a) riding the turbulent wave of panic during pregnancy; (b) strategizing: attempts to reclaim their body and complete the journey to motherhood; (c) bringing reverence to the birthing process and empowering women; and (d) still elusive: the longed-for healing birth experience. Subsequent childbirth after a previous birth trauma has the potential to either heal or retraumatize women. During pregnancy, women need permission and encouragement to grieve their prior traumatic births to help remove the burden of their invisible pain.
Cripps, Kayla; Zyromski, Brett
Adolescence is a critical period of development. Previous research suggests parent involvement in school directly impacts student success. However, different types of parental involvement and the efforts of middle school personnel to educate parents about these effective practices have received scant attention in the literature. The level and type…
Scientists from five Swedish universities were interviewed about open second cycle education. Research groups and scientists collaborate closely with industry, and the selection of scientists for the study was made in relation to an interest in developing technology-enhanced open education, indicated by applications for funding from the Knowledge…
Kocher, Susie; Lombardo, Anne; Sweitzer, Rick A.
The University of California Cooperative Extension used social media to solicit donations to support research on the Pacific fisher, a rare forest-dwelling weasel, conducted by UC scientists. The social media campaign included blog and Facebook postings, news releases, and tweets requesting donations of single socks. Socks were donated from around…
... presenting the prospect of direct benefit to the individual subjects. 97.405 Section 97.405 Education Office... the prospect of direct benefit to the individual subjects. ED conducts or funds research in which the... holds out the prospect of direct benefit for the individual subject, or by a monitoring procedure that...
... subject, or by a monitoring procedure which is not likely to contribute to the well-being of the subject, only if the IRB finds that— (a) The risk represents a minor increase over minimal risk; (b) The... Education PROTECTION OF HUMAN SUBJECTS Additional ED Protections for Children Who Are Subjects in Research...
Kim, Kyung Hi
This research, based on a case study of vulnerable children in Korea, used a mixed methods transformative approach to explore strategies to support and help disadvantaged children. The methodological approach includes three phases: a mixed methods contextual analysis, a qualitative dominant analysis based on Sen's capability approach and critical…
Roseland, Denise; Volkov, Boris B.; Callow-Heusser, Catherine
In contrast to typical National Science Foundation program evaluations, the Utah State Math Science Partnership-Research, Evaluation and Technical Assistance Project (MSP-RETA) provided technical assistance (TA) in two forms: direct TA for up to 10 projects a year, and professional development sessions for a larger number of project staff. Not…
...), nursing women, or children. 26.1703 Section 26.1703 Protection of Environment ENVIRONMENTAL PROTECTION... 40 Protection of Environment 1 2010-07-01 2010-07-01 false Prohibition of reliance on research... intentional exposure of human subjects who are pregnant women (and therefore their fetuses), nursing women, or...
Goto, K.; Bianco-Simeral, S.
Although the effects of pedagogical strategies using collaborative learning on students' perceived learning outcomes have been studied, little has been examined about possible benefits and challenges in collaborating with the campus community in a food science research project conducted by nutrition majors. We examined the effects of involving…
Yager, E. M.; Bradley-Eitel, K.
The focus of this CAREER award is to better understand and predict the mechanics of sediment transport, to link research and education through courses and shared field sites, and to increase female interest in STEM fields. To accomplish the education component of this proposal we have focused on the following three activities: 1) a Keystone course on the scientific method, 2) a Women Outside with Science (WOWS) camp and 3) a permanent field site for research and education on river processes. In the Keystone Course, students investigated the impact of roughness addition, in sediment-starved river reaches (e.g. downstream of dams), on the retention of gravel used for spawning. They developed research questions and hypotheses, designed and conducted a set of scaled laboratory flume experiments, analyzed their data and wrote a draft manuscript of their results. Student feedback was overwhelmingly positive on the merits of this course, which included hands-on learning of the following: basic sediment transport and fluvial geomorphology, applied statistics, laboratory methods, and scientific writing skills. Students sometimes struggled when flume experiments did not progress as planned, and in the analysis and interpretation of complex data. Some of the students in the course have reanalyzed data, conducted additional experiments and are currently rewriting the manuscript for submission to a peer-reviewed journal. Such a course fundamentally links research and teaching, and provides an introduction to research for advanced undergraduates or beginning graduate students. We have also run one summer WOWS camp, which was a ten day camping and inquiry based research experience for 20 female junior-high and high-school students. The girls studied climate change and water related issues, worked on a restoration project on the Little Salmon River, met with a fish biologist and did fish habitat surveys and studied water quality along the North Fork of the Payette River while on a
Academic Librarians Would Benefit from Instruction on Conducting Research. A Review of: Kennedy, M. R., & Brancolini, K. R. (2012. Academic librarian research: A survey of attitudes, involvement, and perceived capabilities. College & Research Libraries, 73(5, 431-448.
Annie M. Hughes
Full Text Available Objectives – To survey and ascertain the level of confidence academic librarians demonstrate with regard to performing and consuming research, as well as to gather information in order to plan a curriculum that would offer professional continuing education programming for librarians interested in enhancing their research skills.Design – Web-based survey of academic librarians on their level of confidence with regard to performing and consuming research.Setting – Various email lists with academic librarians as subscribers.Subjects – 918 self-selected academic librarians who subscribe to email lists.Methods – The authors chose to gather a convenience sample of academic librarians by sending a survey via various email lists. A link to an informed consent notice was sent via the request for participation and then linked to the survey. The survey consisted of 19 questions and gathered information regarding four areas: current research practices, self-evaluation of confidence in research practice, research courses in which the participants participated either during their library and information studies (LIS programs or through other means, and demographic information and information related to support provided by the librarians’ home institutions. The authors adapted their survey from other previously published surveys, and it was pre-tested for its effectiveness and reviewed by the Institutional Review Board. Question 10 included a confidence scale from 1-5 with 1 being “Not at All Confident” and 5 being “Very Confident.” The confidence scale was used to capture respondents’ self-perceptions of their research design expertise. Various statistical tests were performed.Main Results – The authors received 918 responses to their call for participation, with 809 completing the full survey; incomplete responses were not excluded. Results indicate that the vast majority of academic librarians are focused on staying current with
Andrew J. Mowen; Alan R. Graefe; Randy J. Virden
While previous research suggests that place attachment and activity involvement impact visitor perceptions, it has not examined the simultaneous effects of these affective constructs. This study develops a typology of both place attachment and activity involvement. It examines variations between attachment-involvement levels and visitor evaluations of quality. Results...
Tierney, Edel; McEvoy, Rachel; O'Reilly-de Brún, Mary; de Brún, Tomas; Okonkwo, Ekaterina; Rooney, Michelle; Dowrick, Chris; Rogers, Anne; MacFarlane, Anne
There have been recent important advances in conceptualizing and operationalizing involvement in health research and health-care service development. However, problems persist in the field that impact on the scope for meaningful involvement to become a routine - normalized - way of working in primary care. In this review, we focus on current practice to critically interrogate factors known to be relevant for normalization - definition, enrolment, enactment and appraisal. Ours was a multidisciplinary, interagency team, with community representation. We searched EBSCO host for papers from 2007 to 2011 and engaged in an iterative, reflexive approach to sampling, appraising and analysing the literature following the principles of a critical interpretive synthesis approach and using Normalization Process Theory. Twenty-six papers were chosen from 289 papers, as a purposeful sample of work that is reported as service user involvement in the field. Few papers provided a clear working definition of service user involvement. The dominant identified rationale for enrolling service users in primary care projects was linked with policy imperatives for co-governance and emancipatory ideals. The majority of methodologies employed were standard health services research methods that do not qualify as research with service users. This indicates a lack of congruence between the stated aims and methods. Most studies only reported positive outcomes, raising questions about the balance or completeness of the published appraisals. To improve normalization of meaningful involvement in primary care, it is necessary to encourage explicit reporting of definitions, methodological innovation to enhance co-governance and dissemination of research processes and findings. © 2014 The Authors Health Expectations Published by John Wiley & Sons Ltd.
Lounsbury, David W; Hirsch, Gary B; Vega, Chawntel; Schwartz, Carolyn E
The field of quality-of-life (QOL) research would benefit from learning about and integrating systems science approaches that model how social forces interact dynamically with health and affect the course of chronic illnesses. Our purpose is to describe the systems science mindset and to illustrate the utility of a system dynamics approach to promoting QOL research in chronic disease, using diabetes as an example. We build a series of causal loop diagrams incrementally, introducing new variables and their dynamic relationships at each stage. These causal loop diagrams demonstrate how a common set of relationships among these variables can generate different disease and QOL trajectories for people with diabetes and also lead to a consideration of non-clinical (psychosocial and behavioral) factors that can have implications for program design and policy formulation. The policy implications of the causal loop diagrams are discussed, and empirical next steps to validate the diagrams and quantify the relationships are described.
Besides the policy driven support which the JRC gives to the European Commission and its Member States, the nuclear activities of the JRC also fulfil the Research and Development obligations as enshrined in the EURATOM Treaty. These have for objectives to develop and assemble knowledge in the field of nuclear energy and concern basic actinide research, nuclear data and nuclear measurements, radiation monitoring and radionuclides in the environment, health and nuclear medicine, management of spent fuel and waste, safety of reactors and fuel cycle and nuclear safeguards and non proliferation. The European Union currently imports 50% of its energy and, going by the present trend, this may increase to 70% within 20 years. One third of the electricity in Europe is currently been produced via nuclear fission and the move to innovative reactor systems holds great promise. In May 2006, the European Atomic Energy Community became a Party to the Framework Agreement for International Collaboration on Research and Development of Generation IV Nuclear Energy Systems (GIF Framework Agreement). The 'Generation IV' initiative concerns concepts for nuclear energy systems that can be operated in a manner that will provide a competitive and reliable supply of energy, while satisfactorily addressing nuclear safety, waste, proliferation and public perception concerns. The JRC with its strong international dimension is not only the implementing agent for EURATOM in the Generation IV international forum, but also participates actively in related Research and Development projects. The Research and Development projects are focused on fuel development, reprocessing and irradiation testing, fuel cladding interaction and corrosion, basic data for fuel and reprocessing, reprocessing and waste treatment. In this paper the Research and Development the nuclear activities of the JRC will be presented especially those related to its participation to GIF
Kobayashi, Eriko; Satoh, Nobunori
To assess the attitudes of the Japanese general public towards pharmacogenomics research and a DNA bank for identifying genomic markers associated with ADRs and their willingness to donate DNA samples, we conducted a national survey for 1,103 Japanese adults from the general public, not a patient population. The response rate was 36.8%. The majority of the respondents showed a positive attitude towards pharmacogenomics research (81.0%) and a DNA bank (70.4%). Considering fictitious clinical situations such as taking medications and experiencing ADRs, the willingness to donate DNA samples when experiencing ADRs (61.7%) was higher than when taking medications (45.3%). Older generations were significantly associated with a decreased willingness to donate (OR = 0.45, CI 0.28-0.72 in 50s. OR = 0.49, CI: 0.31-0.77 in 60s). Positive attitudes towards pharmacogenomics research, a DNA bank, blood/bone marrow/organ donation were significantly associated with an increased willingness. However, the respondents had the following concerns regarding a DNA bank: the confidentiality of their personal information, the manner by which research results were utilized and simply the use of their own DNA for research. In order to attain public understanding to overcome these concerns, a process of public awareness should be put into place to emphasize the beneficial aspects of identifying genomic markers associated with ADRs and to address these concerns raised in our study. Further study is needed to assess the willingness of actual patients taking medications in real situations, since the respondents in our study were from the general public, not a patient population, and their willingness was assessed on the condition of assuming that they were patients taking medications.
Implementation and assessment of a yeast orphan gene research project: involving undergraduates in authentic research experiences and progressing our understanding of uncharacterized open reading frames.
Bowling, Bethany V; Schultheis, Patrick J; Strome, Erin D
Saccharomyces cerevisiae was the first eukaryotic organism to be sequenced; however, little progress has been made in recent years in furthering our understanding of all open reading frames (ORFs). From October 2012 to May 2015 the number of verified ORFs had only risen from 75.31% to 78%, while the number of uncharacterized ORFs had decreased from 12.8% to 11% (representing > 700 genes still left in this category; http://www.yeastgenome.org/genomesnapshot). Course-based research has been shown to increase student learning while providing experience with real scientific investigation; however, implementation in large, multi-section courses presents many challenges. This study sought to test the feasibility and effectiveness of incorporating authentic research into a core genetics course, with multiple instructors, to increase student learning and progress our understanding of uncharacterized ORFs. We generated a module-based annotation toolkit and utilized easily accessible bioinformatics tools to predict gene function for uncharacterized ORFs within the Saccharomyces Genome Database (SGD). Students were each assigned an uncharacterized ORF, which they annotated using contemporary comparative genomics methodologies, including multiple sequence alignment, conserved domain identification, signal peptide prediction and cellular localization algorithms. Student learning outcomes were measured by quizzes, project reports and presentations, as well as a post-project questionnaire. Our results indicate that the authentic research experience had positive impacts on students' perception of their learning and their confidence to conduct future research. Furthermore, we believe that creation of an online repository and adoption and/or adaptation of this project across multiple researchers and institutions could speed the process of gene function prediction. Copyright © 2015 John Wiley & Sons, Ltd.
Evans, Joy; Hsieh, Peggy Pei-Hsuan; Robinson, Daniel H.
Previously, Robinson, McKay, Katayama, and Fan (1998) examined women's involvement in six educational psychology journals ("American Educational Research Journal," "Contemporary Educational Psychology," "Educational Psychologist," "Educational Psychology Review," "Journal of Experimental Education," and "Journal of Educational Psychology") from…
Hudon, Catherine; Loignon, Christine; Grabovschi, Cristina; Bush, Paula; Lambert, Mireille; Goulet, Émilie; Boyer, Sophie; De Laat, Marianne; Fournier, Nathalie
Improving the knowledge and competencies of healthcare professionals is crucial to better address the specific needs of persons living in poverty and avoid stigmatization. This study aimed to explore the needs and expectations of persons living in poverty and healthcare professionals in terms of medical training regarding poverty and its effects on health and healthcare. We conducted a participatory action research study using photovoice, a method using photography, together with merging of knowledge and practice, an approach promoting dialogue between different sources of knowledge. Nineteen healthcare professionals and persons from an international community organization against poverty participated in the study. The first phase included 60 meetings and group sessions to identify the perceived barriers between persons living in poverty and healthcare teams. In the second phase, sub-committees deployed action plans in academic teaching units to overcome barriers identified in the first phase. Data were analysed through thematic analysis, using NVivo, in collaboration with five non-academic co-researchers. Four themes in regard to medical training were highlighted: improving medical students' and residents' knowledge on poverty and the living conditions of persons living in poverty; improving their understanding of the reality of those people; improving their relational skills pertaining to communication and interaction with persons living in poverty; improving their awareness and capacity for self-reflection. At the end of the second phase, actions were undertaken such as improving knowledge of the living conditions of persons living in poverty by posting social assistance rates, and tailoring interventions to patients' reality by including sociodemographic information in electronic medical records. Our findings also led to a participatory research project aiming to improve the skills and competency of residents and health professionals in regard to the quality of
Full Text Available Patient and public involvement (PPI is advocated in clinical trials yet evidence on how to optimise its impact is limited. We explored researchers' and PPI contributors' accounts of the impact of PPI within trials and factors likely to influence its impact.Semi-structured qualitative interviews with researchers and PPI contributors accessed through a cohort of randomised clinical trials. Analysis of transcripts of audio-recorded interviews was informed by the principles of the constant comparative method, elements of content analysis and informant triangulation.We interviewed 21 chief investigators, 10 trial managers and 17 PPI contributors from 28 trials. The accounts of informants within the same trials were largely in agreement. Over half the informants indicted PPI had made a difference within a trial, through contributions that influenced either an aspect of a trial, or how researchers thought about a trial. According to informants, the opportunity for PPI to make a difference was influenced by two main factors: whether chief investigators had goals and plans for PPI and the quality of the relationship between the research team and the PPI contributors. Early involvement of PPI contributors and including them in responsive (e.g. advisory groups and managerial (e.g. trial management groups roles were more likely to achieve impact compared to late involvement and oversight roles (e.g. trial steering committees.Those seeking to enhance PPI in trials should develop goals for PPI at an early stage that fits the needs of the trial, plan PPI implementation in accordance with these goals, invest in developing good relationships between PPI contributors and researchers, and favour responsive and managerial roles for contributors in preference to oversight-only roles. These features could be used by research funders in judging PPI in trial grant applications and to inform policies to optimise PPI within trials.
Frew, Paula M; Archibald, Matthew; Martinez, Nina; del Rio, Carlos; Mulligan, Mark J
The HIV/AIDS pandemic continues to challenge the African American community with disproportionate rates of infection, particularly among young women ages 25 to 34 years. Development of a preventive HIV vaccine may bring a substantial turning point in this health crisis. Engagement of the African American community is necessary to improve awareness of the effort and favorably influence attitudes and referent norms. The Theory of Reasoned Action (TRA) may be a useful framework for exploration of community engagement outcomes including future attendance, community mobilization, and study participation. Within the context of HIV vaccine outreach, we conducted a cross-sectional survey in early 2007 with 175 African-American adults (>/= 18 years). Confirmatory factor analysis and structural equation modeling were performed and the findings support the potential of the model in understanding behavioral intentions toward HIV vaccine research.
Full Text Available Writing policy that applies to First Nations, Inuit and Métis peoples in Canada has become more interactive as communities and their representative organizations press for practical recognition of an Aboriginal right of self-determination. When the policy in development is aimed at supporting “respect for human dignity” as it is in the case of ethics of research involving humans, the necessity of engaging the affected population becomes central to the undertaking.
Maman Joyce Dogba
Full Text Available Despite the growing interest in understanding the psycho-social impact of rare genetic diseases, few studies examine this concept and even fewer seek to obtain feedback from families who have lived the experience. The aim of this project was to involve families of children living with osteogenesis imperfecta (OI in the development of a tool to assess the impact of OI on the lives of patients and their families.This project used an integrated knowledge translation approach in which knowledge users (clinicians and people living with OI and their families were consulted throughout the four steps of development, that is: content mapping, item generation, tool appraisal and pre-testing of the questionnaires. The International Classification of Functioning and Health was used as a framework for content mapping. Based on a scoping review we selected two validated tools to use as a basis for developing the questionnaire. The final parent self-report version measured six domains: experience of diagnosis; use of health services; use of social and psychological support services; expectations about tertiary specialized centers; and socio-demographic information.A total of 27 out of 40 families receiving care at the Shriners Hospital for Children-Canada and invited to participate in the pre-test returned the completed questionnaires. In more than two-thirds of families (69%; n = 18 OI was suspected either at or within the first 3 months after birth. Up to 46% of families consulted between 3 and 5 doctors (46%; n = 12 prior to final diagnosis. The use of services by families varied from 0 to 16 consultations, 0 to 9 exploratory examinations and 1 to 10 types of allied health services. In the 12 months prior to the study, fewer than a quarter of children had been admitted, for treatment, for hospital stays of longer than 8 hours or to an emergency department (24% and 9% respectively. Only 29% of parents received psychological support.This joint development
Lawn, Sharon; Venning, Anthony; Winsall, Megan; Jones, Gabrielle M; Wyld, Kaisha; Damarell, Raechel A; Antezana, Gaston; Schrader, Geoffrey; Smith, David; Collin, Philippa; Bidargaddi, Niranjan
Background Despite the potential of technology-based mental health interventions for young people, limited uptake and/or adherence is a significant challenge. It is thought that involving young people in the development and delivery of services designed for them leads to better engagement. Further research is required to understand the role of participatory approaches in design of technology-based mental health and well-being interventions for youth. Objective To investigate consumer involvement processes and associated outcomes from studies using participatory methods in development of technology-based mental health and well-being interventions for youth. Methods Fifteen electronic databases, using both resource-specific subject headings and text words, were searched describing 2 broad concepts-participatory research and mental health/illness. Grey literature was accessed via Google Advanced search, and relevant conference Web sites and reference lists were also searched. A first screening of titles/abstracts eliminated irrelevant citations and documents. The remaining citations were screened by a second reviewer. Full text articles were double screened. All projects employing participatory research processes in development and/or design of (ICT/digital) technology-based youth mental health and well-being interventions were included. No date restrictions were applied; English language only. Data on consumer involvement, research and design process, and outcomes were extracted via framework analysis. Results A total of 6210 studies were reviewed, 38 full articles retrieved, and 17 included in this study. It was found that consumer participation was predominantly consultative and consumerist in nature and involved design specification and intervention development, and usability/pilot testing. Sustainable participation was difficult to achieve. Projects reported clear dichotomies around designer/researcher and consumer assumptions of effective and acceptable
Snape, D; Kirkham, J; Britten, N; Froggatt, K; Gradinger, F; Lobban, F; Popay, Jennie; Wyatt, K; Jacoby, Ann
Objective To explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research. Background Internationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured. Design Mixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project. Sample Clinical and non-clinical academics, members of the public, research managers, commissioners and funders. Findings This study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards. Conclusions This study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers
Kobayashi, Eriko; Sakurada, Tomoya; Ueda, Shiro; Satoh, Nobunori
To assess the attitude of Japanese patients towards pharmacogenomics research and a DNA bank for identifying genomic markers associated with adverse drug reactions (ADRs) and their willingness to donate DNA samples, we conducted a survey of 550 male and female patients. The majority of the respondents showed a positive attitude towards pharmacogenomics research (87.6%) and a DNA bank (75.1%). The willingness to donate DNA samples when experiencing severe ADRs (55.8%) was higher than when taking medications (40.4%). Positive attitudes towards a DNA bank and organ donation were significantly associated with an increased willingness to donate. Though the level of positive attitude in the patient population was higher than that in the general public in our former study (81.0 and 70.4%, respectively), the level of the willingness of patients to donate was 40.4% when taking medications and 55.8% when experiencing severe ADRs which was lower than that of the general public in our former study (45.3 and 61.7%). The results suggested that the level of true willingness in the patient population was lower than that of the general public considering the fictitious situation presented to the public (to suppose that they were patients receiving medication). It is important to assess the willingness of patients who are true potential donors, not the general public.
Price, Amy; Schroter, Sara; Snow, Rosamund; Hicks, Melissa; Harmston, Rebecca; Staniszewska, Sophie; Parker, Sam; Richards, Tessa
While documented plans for patient and public involvement (PPI) in research are required in many grant applications, little is known about how frequently PPI occurs in practice. Low levels of reported PPI may mask actual activity due to limited PPI reporting requirements. This research analysed the frequency and types of reported PPI in the presence and absence of a journal requirement to include this information. A before and after comparison of PPI reported in research papers published in The BMJ before and 1 year after the introduction of a journal policy requiring authors to report if and how they involved patients and the public within their papers. Between 1 June 2013 and 31 May 2014, The BMJ published 189 research papers and 1 (0.5%) reported PPI activity. From 1 June 2015 to 31 May 2016, following the introduction of the policy, The BMJ published 152 research papers of which 16 (11%) reported PPI activity. Patients contributed to grant applications in addition to designing studies through to coauthorship and participation in study dissemination. Patient contributors were often not fully acknowledged; 6 of 17 (35%) papers acknowledged their contributions and 2 (12%) included them as coauthors. Infrequent reporting of PPI activity does not appear to be purely due to a failure of documentation. Reporting of PPI activity increased after the introduction of The BMJ 's policy, but activity both before and after was low and reporting was inconsistent in quality. Journals, funders and research institutions should collaborate to move us from the current situation where PPI is an optional extra to one where PPI is fully embedded in practice throughout the research process. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.
Horobin, Adele; Brown, George; Higton, Fred; Vanhegan, Stevie; Wragg, Andrew; Wray, Paula; Walker, Dawn-Marie
Members of the public share their views with researchers to improve health and social care research. Lay assessing is one way of doing this. This is where people, drawing upon personal and general life experience, comment on material, such as grant applications and patient information, to highlight strengths and weaknesses and to suggest improvements. This paper reports on setting up a training programme for lay assessors. Meetings were held between interested public and staff from research organisations. People discussed what lay assessing is, why they want to do it, skills and support needed and if training was wanted. They were invited to form a group to develop the training together. Training was delivered in the East Midlands. People who attended gave their thoughts about it by completing questionnaires and joining a feedback event. The group developed the structure of the training programme together and it oversaw the development of the training content by individual members. People who attended training reported feeling more confident about lay assessing. This was particularly so for those who had not done lay assessing before. They indicated how valuable it was to talk with others at the training. Our findings support the National Institute for Health Research recommendations for improving learning and development for public involvement in research. This project has created a solid base for local research organisations to work together in public involvement training. Lay assessor training is now part of a wider programme of shared resources called the Sharebank. Background Involving members of the public in research can improve its quality and incorporate the needs and views of patients. One method for doing this is lay assessing, where members of the public are consulted to improve research materials. This paper documents the establishment of a pilot training programme for lay assessors. It describes a way of working that embodies a regional, cross
Javier Flórez Miranda
Full Text Available Después de un diagnóstico poco alentador sobre las competencias lecto-escritoras de los estudiantes, fenómeno al que llama: ";Síndrome del pensamiento inmaduro";, el autor propone el uso de los llamados ";signos-herramienta"; de la teoría socio-cultural de Vigotsky. Con base en sus ideas, acerca de la posibilidad de utilizar vías de rodeo para superar algunas dificultades cognitivas de los estudiantes, propone la herramienta de los mapas mentales, cuya eficacia ha probado, durante su práctica docente.
Woolfall, Kerry; Frith, Lucy; Gamble, Carrol; Gilbert, Ruth; Mok, Quen; Young, Bridget
Alternatives to prospective informed consent to enable children with life-threatening conditions to be entered into trials of emergency treatments are needed. Across Europe, a process called deferred consent has been developed as an alternative. Little is known about the views and experiences of those with first-hand experience of this controversial consent process. To inform how consent is sought for future paediatric critical care trials, we explored the views and experiences of parents and practitioners involved in the CATheter infections in CHildren (CATCH) trial, which allowed for deferred consent in certain circumstances. Mixed method survey, interview and focus group study. 275 parents completed a questionnaire; 20 families participated in an interview (18 mothers, 5 fathers). 17 CATCH practitioners participated in one of four focus groups (10 nurses, 3 doctors and 4 clinical trial unit staff). 12 UK children's hospitals. Some parents were momentarily shocked or angered to discover that their child had or could have been entered into CATCH without their prior consent. Although these feelings resolved after the reasons why consent needed to be deferred were explained and that the CATCH interventions were already used in clinical care. Prior to seeking deferred consent for the first few times, CATCH practitioners were apprehensive, although their feelings abated with experience of talking to parents about CATCH. Parents reported that their decisions about their child's participation in the trial had been voluntary. However, mistiming the deferred consent discussion had caused distress for some. Practitioners and parents supported the use of deferred consent in CATCH and in future trials of interventions already used in clinical care. Our study provides evidence to support the use of deferred consent in paediatric emergency medicine; it also indicates the crucial importance of practitioner communication and appropriate timing of deferred consent discussions
Woolfall, Kerry; Frith, Lucy; Gamble, Carrol; Gilbert, Ruth; Mok, Quen; Young, Bridget
Objective Alternatives to prospective informed consent to enable children with life-threatening conditions to be entered into trials of emergency treatments are needed. Across Europe, a process called deferred consent has been developed as an alternative. Little is known about the views and experiences of those with first-hand experience of this controversial consent process. To inform how consent is sought for future paediatric critical care trials, we explored the views and experiences of parents and practitioners involved in the CATheter infections in CHildren (CATCH) trial, which allowed for deferred consent in certain circumstances. Design Mixed method survey, interview and focus group study. Participants 275 parents completed a questionnaire; 20 families participated in an interview (18 mothers, 5 fathers). 17 CATCH practitioners participated in one of four focus groups (10 nurses, 3 doctors and 4 clinical trial unit staff). Setting 12 UK children's hospitals. Results Some parents were momentarily shocked or angered to discover that their child had or could have been entered into CATCH without their prior consent. Although these feelings resolved after the reasons why consent needed to be deferred were explained and that the CATCH interventions were already used in clinical care. Prior to seeking deferred consent for the first few times, CATCH practitioners were apprehensive, although their feelings abated with experience of talking to parents about CATCH. Parents reported that their decisions about their child's participation in the trial had been voluntary. However, mistiming the deferred consent discussion had caused distress for some. Practitioners and parents supported the use of deferred consent in CATCH and in future trials of interventions already used in clinical care. Conclusions Our study provides evidence to support the use of deferred consent in paediatric emergency medicine; it also indicates the crucial importance of practitioner communication
Committees appointed by governments to inquire into specific policy issues often have no further role when the Committee's report is delivered to government, but that is not always so. This paper describes the activities of members of the Australian Committee on human cloning and embryo research (the Lockhart Committee) to inform Parliament and the community about the Committee's recommendations after its report was tabled in Parliament. It explains their participation in the political process as their recommendations were debated and amending legislation was passed by Parliament. It illustrates a method of communication about scientific and policy issues that explores people's concerns and what they 'need to know' to make a judgment; and then responds to questions they raise, with the aim of facilitating discussion, not arguing for one view. The paper considers whether this type of engagement and communication is appropriate and could be used in other policy discussions.
Klemetti, E. W.
eruption. A sampling of the readers of the blog suggests that they represent a wide diversity of backgrounds, ranging from no college education to doctorates. A majority of readers held degrees in a science, however more than 60% had no to little formal geologic training. This suggests that there is a substantial desire for people to take part in geoscience research although they are not formally trained in the discipline. A parallel can be drawn between the use of realtime data and webcams during the Eyjafjallajökull eruption to the role of amateur astronomers in the observation and discovery of astronomical phenomena. However, this role for citizens is new in geosciences, where many times amateur enthusiasts are seen as merely "rock hounds" rather than potential sources of important scientific observation and information. By using geoscience blogging as a framework for drawing citizen participation in observation and interpretation of realtime data available on the internet, real contributions to the discipline can be made by non-specialists. However, trained geoscientists need to engage with the public to help guide and support their endeavors, monitoring for misuse of the data sets and provide the needed context to allow their contributions to be legitimate.
Hagen, S. C.; Stephens, S. H.; DeLorme, D. E.; Ruple, D.; Graham, L.
Sea level rise (SLR) has the potential to have a myriad of deleterious effects on coastal ecology and human infrastructure. Stakeholders, including managers of coastal resources, must be aware of potential consequences of SLR and adjust their plans accordingly to protect and preserve the resources under their care. Members of the public, particularly those who live or work in coastal areas, should also be informed about the results of scientific research on the effects of SLR. However, research results are frequently published in venues or formats to which resource managers and the broader public have limited access. It is imperative for scientists to move beyond traditional publication venues in order to more effectively disseminate the results of their research (Dennison, W. 2007, Estu. Coast. Shelf Sci. 77, 185). One potentially effective way to advance public access to research is to incorporate stakeholder involvement into the research project process in order to target study objectives and tailor communication products toward stakeholder needs (Lemos, M. & Morehouse, B. 2005, Glob. Env. Chg. 15, 57). However, it is important to manage communication and clarify participant expectations during this type of research (Gawith, M. et al. 2009, Glob. Env. Chg. 19, 113). This presentation describes the process being undertaken by an ongoing 5-year multi-disciplinary NOAA-funded project, Ecological Effects of Sea Level Rise in the Northern Gulf of Mexico (EESLR-NGOM), to improve accessibility and utility of scientific research results through stakeholder engagement. The EESLR-NGOM project is assessing the ecological risks from SLR along the Mississippi, Alabama and Florida Panhandle coasts, coastal habitats, and floodplains. It has incorporated stakeholder involvement throughout the research process so as to better target and tailor the emerging research products to meet resource managers' needs, as well as to facilitate eventual public dissemination of results. An
Sotis, J J
Since the human embryonic stem cell research involves destruction of human embryos and, therefore, hinges on the fundamental question of the status of the embryo, it is essential to examine this status carefully in order to establish fitting guidelines for research. The US National Institutes of Health has proposed its own guidelines on the matter recently (1999). The document, rooted in current pluralistic perspectives in moral philosophy (or bioethics), is criticised in this paper as morally inadequate. The argumentation of the criticism stems from the theological perspective on human personhood, which focuses on a continuity of personal identity from embryos to adult human beings. An additional concern for the author is the moral complicity in which the research dependent upon the destruction of human embryonic life is sanctioned.
Background Recruiting minorities into research studies requires special attention, particularly when studies involve “extra-vulnerable” participants with multiple vulnerabilities, e.g., pregnant women, the fetuses/neonates of ethnic minorities, children in refugee camps, or cross-border migrants. This study retrospectively analyzed submissions to the Ethics Committee of the Faculty of Tropical Medicine (FTM-EC) in Thailand. Issues related to the process and outcomes of proposal review, and the main issues for which clarification/revision were requested on studies, are discussed extensively. Methods The study data were extracted from proposals and amendments submitted to the FTM-EC during the period October 2009 – September 2012, and then analyzed qualitatively and quantitatively. The main issues for clarification/revision were analyzed by thematic content analysis. Results 373 proposals were submitted; 44 studies involved minority groups with 21 extra-vulnerable minorities. All clinical and 2/3 of non-clinical studies submitted for initial review underwent full-board review. For combined clinical and non-clinical study submissions, 92.1% were referred back to the investigators and approved after clarification/revision, while 2.7% were deferred due to major/critical changes, and 2.1% not approved due to substantial violations of ethical principles. The main issues needing clarification/revision differed between all studies and those involving minorities: participant information sheet (62.2% vs. 86.4%), informed consent/assent form (51.2% vs. 86.4%), and research methodology (80.7% vs. 84.1%), respectively. The main ethical issues arising during the meetings, regarding studies involving minorities, included ensuring no exploitation, coercion, or pressure on the minority to participate; methodology not affecting their legal status; considering ethnicity and cultural structure; and providing appropriate compensation. Conclusion Delays in the approval or non
O'Reilly-de Brún, Mary; MacFarlane, Anne; de Brún, Tomas; Okonkwo, Ekaterina; Bonsenge Bokanga, Jean Samuel; Manuela De Almeida Silva, Maria; Ogbebor, Florence; Mierzejewska, Aga; Nnadi, Lovina; van den Muijsenbergh, Maria; van Weel-Baumgarten, Evelyn; van Weel, Chris
The aim of this research was to involve migrants and other key stakeholders in a participatory dialogue to develop a guideline for enhancing communication in cross-cultural general practice consultations. In this paper, we focus on findings about the use of formal versus informal interpreters because dialogues about these issues emerged as central to the identification of recommendations for best practice. This qualitative case study involved a Participatory Learning and Action (PLA) research methodology. The sample comprised 80 stakeholders: 51 from migrant communities; 15 general practitioners (GPs) and general practice staff; 7 established migrants as peer researchers; 5 formal, trained interpreters; and 2 service planners from the national health authority. Galway, Ireland. There was 100% consensus across stakeholder groups that while informal interpreters have uses for migrants and general practice staff, they are not considered acceptable as best practice. There was also 100% consensus that formal interpreters who are trained and working as per a professional code of practice are acceptable as best practice. Policymakers and service planners need to work in partnership with service providers and migrants to progress the implementation of professional, trained interpreters as a routine way of working in general practice. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.
de Freitas, Cláudia; Dos Reis, Vanessa; Silva, Susana; Videira, Paula A; Morava, Eva; Jaeken, Jaak
Public and patient involvement in the design of people-centred care and research is vital for communities whose needs are underserved, as are people with rare diseases. Innovations devised collectively by patients, caregivers, professionals and other members of the public can foster transformative change toward more responsive services and research. However, attempts to involve lay and professional stakeholders in devising community-framed strategies to address the unmet needs of rare diseases are lacking. In this study, we engaged with the community of Congenital Disorders of Glycosylation (CDG) to assess its needs and elicit social innovations to promote people-centred care and research. Drawing on a qualitative study, we conducted three think tanks in France with a total of 48 participants, including patients/family members (n = 18), health care professionals (n = 7), researchers (n = 7) and people combining several of these roles (n = 16). Participants came from 20 countries across five continents. They were selected from the registry of the Second World Conference on CDG through heterogeneity and simple random sampling. Inductive and deductive approaches were employed to conduct interpretational analysis using open, axial and selective coding, and the constant-comparison method to facilitate the emergence of categories and core themes. The CDG community has unmet needs for information, quality health care, psychosocial support and representation in decision-making concerned with care and research. According to participants, these needs can be addressed through a range of social innovations, including peer-support communities, web-based information resources and a CDG expertise platform. This is one of the few studies to engage lay and professional experts in needs assessment and innovation for CDG at a global level. Implementing the innovations proposed by the CDG community is likely to have ethical, legal and social implications associated with the
A G Vethuizen
Full Text Available The aim of this article is to propose some principles and practices for truth-seeking during research into violent conflict. To achieve this aim, an argument is deployed by analysing the theoretical concepts “truth”, “myth” and “oral culture” as sources of knowledge. This conceptual analysis precedes a discussion on community-based participatory research (CBPR as a research methodology to access the knowledge of lived experiences embedded in the oral culture of the San community of Platfontein, near Kimberley, South Africa. It was found that CBPR contains good practices to use in research to judge the probable truth about disputes. The CBPR process is ideal for determining the accuracy of data in the context of a specific culture, considering the norms, spiritual influences and personal considerations of knowledge-holders that accompany a unique cosmology. A variety and equity of worldviews and perspectives of what happened during violent conflict successfully challenges hegemonic power relationships, paradigms and narratives, ultimately leading to informed judgements of what is probably true about a conflict. CBPR with the San of Platfontein revealed principles that can be used as guidelines for researching disputes where oral culture is involved.
Bredberg, David; Holmquist, Johan
Recent research on links between dimensions of consumer-based brand equity, as well as links to consumer involvement, has shown that it is a significant predictor of purchase behavior. The purpose of this dissertation is to explore the affect brands have on consumer involvement. We attempt to investigate how consumer-based brand equity affects the level of consumer involvement. Based on consumer behavior theory and previous research of these areas, gathered primary data (an empirical investig...
PURPOSE: The purpose of this paper is to investigate different types of patient involvement in Denmark, and to discuss the potential implications of pursuing several strategies for patient involvement simultaneously. DESIGN/METHODOLOGY/APPROACH: The paper presents a preliminary framework for anal......PURPOSE: The purpose of this paper is to investigate different types of patient involvement in Denmark, and to discuss the potential implications of pursuing several strategies for patient involvement simultaneously. DESIGN/METHODOLOGY/APPROACH: The paper presents a preliminary framework...... for analysis of patient involvement in health care. This framework is used to analyze key governance features of patient involvement in Denmark based on previous research papers and reports describing patient involvement in Danish health care. FINDINGS: Patient involvement is important in Denmark...... be identified when pursuing the strategies at the same time. RESEARCH LIMITATIONS/IMPLICATIONS: Because of the chosen research approach, the research results may lack generalizability. Therefore, researchers are encouraged to test the proposed framework further. PRACTICAL IMPLICATIONS: The paper includes...
Full Text Available BACKGROUND: Drosophila heart tube is a feasible model for cardiac physiological research. However, obtaining Drosophila electrocardiograms (ECGs is difficult, due to the weak signals and limited contact area to apply electrodes. This paper presents a non-invasive Gallium-Indium (GaIn based recording system for Drosophila ECG measurement, providing the heart rate and heartbeat features to be observed. This novel, high-signal-quality system prolongs the recording time of insect ECGs, and provides a feasible platform for research on the molecular mechanisms involved in cardiovascular diseases. METHODS: In this study, two types of electrode, tungsten needle probes and GaIn electrodes, were used respectively to noiselessly conduct invasive and noninvasive ECG recordings of Drosophila. To further analyze electrode properties, circuit models were established and simulated. By using electromagnetic shielded heart signal acquiring system, consisted of analog amplification and digital filtering, the ECG signals of three phenotypes that have different heart functions were recorded without dissection. RESULTS AND DISCUSSION: The ECG waveforms of different phenotypes of Drosophila recorded invasively and repeatedly with n value (n>5 performed obvious difference in heart rate. In long period ECG recordings, non-invasive method implemented by GaIn electrodes acts relatively stable in both amplitude and period. To analyze GaIn electrode, the correctness of GaIn electrode model established by this paper was validated, presenting accuracy, stability, and reliability. CONCLUSIONS: Noninvasive ECG recording by GaIn electrodes was presented for recording Drosophila pupae ECG signals within a limited contact area and signal strength. Thus, the observation of ECG changes in normal and SERCA-depleted Drosophila over an extended period is feasible. This method prolongs insect survival time while conserving major ECG features, and provides a platform for
Linking neuroscientific research on decision making to the educational context of novice students assigned to a multiple-choice scientific task involving common misconceptions about electrical circuits
Full Text Available Functional magnetic resonance imaging was used to identify the brain-based mechanisms of uncertainty and certainty associated with answers to multiple-choice questions involving common misconceptions about electric circuits. Twenty-two (22 scientifically novice participants (humanities and arts college students were asked, in an fMRI study, whether or not they thought the light bulbs in images presenting electric circuits were lighted up correctly, and if they were certain or uncertain of their answers. When participants reported that they were unsure of their responses, analyses revealed significant activations in brain areas typically involved in uncertainty (anterior cingulate cortex, anterior insula cortex, and superior/dorsomedial frontal cortex and in the left middle/superior temporal lobe. Certainty was associated with large bilateral activations in the occipital and parietal regions usually involved in visuospatial processing. Correct-and-certain answers were associated with activations that suggest a stronger mobilization of visual attention resources when compared to incorrect-and-certain answers. These findings provide insights into brain-based mechanisms of uncertainty that are activated when common misconceptions, identified as such by science education research literature, interfere in decision making in a school-like task. We also discuss the implications of these results from an educational perspective.
Casati, Sara; Monti, Paolo; Bonino, Ferruccio
From 2007 to 2009 Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, one of the major public research hospitals in Italy, has invested on a participatory action to promote a good practice of informed consent. The project focused on the improvement and innovation of informed consent considered as a participated act through the involvement of all the actors at stake. The main purpose was to improve the informative practices through the participatory innovation of institutional and organizational elements as conditions of possibility. Therefore the project has pursued the involvement of managers, healthcare professionals, patients and their associations in the institutional governance of informed consent. The involvement of citizens and patients within the whole process meant to put them in charge not just as actors or final evaluators of a good practice, but as co-authors in defining standards, tools and conditions for a good practice. Several actions were taken, including a phase of analysis which involved 20 patients from 8 Associations, a phase of innovation and education where 113 patients and citizens worked together with clinicians from 53 Units in deliberative laboratories, the institution of a multidisciplinary committee inclusive of representatives from 6 associations of patients.The project has produced different outcomes: new institutional guidelines adopted by the hospital; the renewal of consent forms and procedures as part of an explicit shared informative process; an increased implementation of institutional standards of good informative practice; the measure and communication of the outcomes of care and their bench-marking; bottom-up building of paths of validation; the creation of participatory electronic tools; an innovative education on the field for patients and clinicians.
Shimmin, Carolyn; Wittmeier, Kristy D M; Lavoie, Josée G; Wicklund, Evan D; Sibley, Kathryn M
The concept of patient engagement in health research has received growing international recognition over recent years. Yet despite some critical advancements, we argue that the concept remains problematic as it negates the very real complexities and context of people's lives. Though patient engagement conceptually begins to disrupt the identity of "researcher," and complicate our assumptions and understandings around expertise and knowledge, it continues to essentialize the identity of "patient" as a homogenous group, denying the reality that individuals' economic, political, cultural, subjective and experiential lives intersect in intricate and multifarious ways. Patient engagement approaches that do not consider the simultaneous interactions between different social categories (e.g. race, ethnicity, Indigeneity, gender, class, sexuality, geography, age, ability, immigration status, religion) that make up social identity, as well as the impact of systems and processes of oppression and domination (e.g. racism, colonialism, classism, sexism, ableism, homophobia) exclude the involvement of individuals who often carry the greatest burden of illness - the very voices traditionally less heard in health research. We contend that in order to be a more inclusive and meaningful approach that does not simply reiterate existing health inequities, it is important to reconceptualize patient engagement through a health equity and social justice lens by incorporating a trauma-informed intersectional analysis. This article provides key concepts to the incorporation of a trauma-informed intersectional analysis and important questions to consider when developing a patient engagement strategy in health research training, practice and evaluation. In redefining the identity of both "patient" and "researcher," spaces and opportunities to resist and renegotiate power within the intersubjective relations can be recognized and addressed, in turn helping to build trust, transparency and
Dudley, Louise; Gamble, Carrol; Allam, Alison; Bell, Philip; Buck, Deborah; Goodare, Heather; Hanley, Bec; Preston, Jennifer; Walker, Alison; Williamson, Paula; Young, Bridget
Training in patient and public involvement (PPI) is recommended, yet little is known about what training is needed. We explored researchers' and PPI contributors' accounts of PPI activity and training to inform the design of PPI training for both parties. We used semi-structured qualitative interviews with researchers (chief investigators and trial managers) and PPI contributors, accessed through a cohort of clinical trials, which had been funded between 2006 and 2010. An analysis of transcripts of audio-recorded interviews drew on the constant comparative method. We interviewed 31 researchers and 17 PPI contributors from 28 trials. Most researchers could see some value in PPI training for researchers, although just under half had received such training themselves, and some had concerns about the purpose and evidence base for PPI training. PPI contributors were evenly split in their perceptions of whether researchers needed training in PPI. Few PPI contributors had themselves received training for their roles. Many informants across all groups felt that training PPI contributors was unnecessary because they already possessed the skills needed. Informants were also concerned that training would professionalise PPI contributors, limiting their ability to provide an authentic patient perspective. However, informants welcomed informal induction 'conversations' to help contributors understand their roles and support them in voicing their opinions. Informants believed that PPI contributors should be confident, motivated, intelligent, focussed on helping others and have relevant experience. Researchers looked for these qualities when selecting contributors, and spoke of how finding 'the right' contributor was more important than accessing 'the right' training. While informants were broadly receptive to PPI training for researchers, they expressed considerable reluctance to training PPI contributors. Providers of training will need to address these reservations. Our
Zirakparvar, N. A.; Sessa, J.; Ustunisik, G. K.; Nadeau, P. A.; Flores, K. E.; Ebel, D. S.
preparation in that postdoctoral research scientists are directly involved in the clinical preparation of the teacher candidates7. In this program, professional educators and senior scientists guide and work closely with the postdoctoral scientists in developing lessons and field experiences for the teacher candidates. This exposes the postdoctoral scientists to pedagogical techniques. Furthermore, postdoctoral scientists make regular visits to partner schools and share their research interests with high school science students8. Regular assessments about the quality of the postdoctoral scientist's teaching, in the form of course evaluations and informal discussions with the teacher candidates and professional educators, further augments the postdoctoral scientists teaching skills. These experiences can ultimately improve university level science teaching, should the postdoctoral scientists find positions within a university setting. Here, five postdoctoral researchers present self-studies of changing instructional practice born of their involvement in clinical teacher preparation in the AMNH-MAT program.
Goehring, L.; Carlsen, W.; Fisher, C. R.; Kerlin, S.; Trautmann, N.; Petersen, W.
Science education reform since the mid-1990's has called for a "new way of teaching and learning about science that reflects how science itself is done, emphasizing inquiry as a way of achieving knowledge and understanding about the world" (NRC, 1996). Scientists and engineers, experts in inquiry thinking, have been called to help model these practices for students and demonstrate scientific habits of mind. The question, however, is "how best to involve these experts?" given the very real challenges of limited availability of scientists, varying experience with effective pedagogy, widespread geographic distribution of schools, and the sheer number of students involved. Technology offers partial solutions to enable Student-Scientist Interactions (SSI). The FLEXE Project has developed online FLEXE Forums to support efficient, effective SSIs, making use of web-based and database technology to facilitate communication between students and scientists. More importantly, the FLEXE project has approached this question of "how best to do this?" scientifically, combining program evaluation with hypothesis-based research explicitly testing the effects of such SSIs on student learning and attitudes towards science. FLEXE Forums are designed to showcase scientific practices and habits of mind through facilitated interaction between students and scientists. Through these Forums, students "meet" working scientists and learn about their research and the environments in which they work. Scientists provide students with intriguing "real-life" datasets and challenge students to analyze and interpret the data through guiding questions. Students submit their analyses to the Forum, and scientists provide feedback and connect the instructional activity with real-life practice, showcasing their activities in the field. In the FLEXE project, Forums are embedded within inquiry-based instructional units focused on essential learning concepts, and feature the deep-sea environment in contrast
In recognition of the need to widen the scope of fatherhood scholarship, this article centered on examining paternal involvement but in a socio- cultural context and developmental stage that has headed little attention in previous research. An attempt was made to investigate the nature of paternal involvement (ways, desires ...
[ETHICAL CONDUCT FOR RESEARCH INVOLVING INDIGENOUS PEOPLE IN FRANCE: A COMMENT OF THE CNRS ETHICS COMMITTEE OPINION ON THE IMPERATIVE OF FAIRNESS IN THE RELATIONSHIP BETWEEN RESEARCHERS AND INDIGENOUS PEOPLES].
Burelli, Thomas; Bambridge, Tamatoa
Historically, scientific research and colonization process have maintained very close ties. In order to frame research involving indigenous peoples and to avoid situations of abuse, some States have developed very detailed ethicalframeworks. In France, there are no ethicalframework comparable to those observed in particular in Anglo-Saxon countries like Canada. Extensive discussions were conducted by the Ethics Committee of the CNRS leading to the adoption of an opinion of a high quality but which appears largely unknown and under-exploited. This opinion deals with "the delicate question of the rights of local and indigenous populations during the research projected conducted with their support in developed and developing countries (DCs)". In this paper, we propose to analyze how this opinion can be considered remarkable because it recognizes the current challenges of research projects involving indigenous people, but also because of his recommendations. We still see that the scope of its recommendations is however limited so far although some encouraging experiences like the recent adoption of the CRIOBE centre code of ethics in French Polynesia can be observed.
Full Text Available The aim of this work is to analyze the influence of study field, expertise and recreational activities participation in Torrance Tests of Creative Thinking (TTCT, 1974 performance. Several hypotheses were postulated to explore the possible effects of previous knowledge in TTCT verbal and TTCT figural university students’ outcomes. Participants in this study included 418 students from five study fields: Psychology;Philosophy and Literature, Music; Engineering; and Journalism and Advertising (Communication Sciences. Results found in this research seem to indicate that there in none influence of the study field, expertise and recreational activities participation in neither of the TTCT tests. Instead, the findings seem to suggest some kind of interaction between certain skills needed to succeed in specific studies fields and performance on creativity tests, such as the TTCT. These results imply that TTCT is a useful and valid instrument to measure creativity and that some cognitive process involved in innovative thinking can be promoted using different intervention programs in schools and universities regardless the students study field.
Roberts, Steven O.; Vukovic, Rose K.
Previous research served as the platform for this study's research question: Does math anxiety mediate the relation between parental involvement and mathematics achievement? The primary purpose of this study was to examine this mediation model in a sample of at-risk second graders. Due to previous research, the investigators hypothesized that math…
Macpherson, D S; Snow, R; Lofgren, R P
To determine the frequency of tests done in the year before elective surgery that might substitute for preoperative screening tests and to determine the frequency of test results that change from a normal value to a value likely to alter perioperative management. Retrospective cohort analysis of computerized laboratory data (complete blood count, sodium, potassium, and creatinine levels, prothrombin time, and partial thromboplastin time). Urban tertiary care Veterans Affairs Hospital. Consecutive sample of 1109 patients who had elective surgery in 1988. At admission, 7549 preoperative tests were done, 47% of which duplicated tests performed in the previous year. Of 3096 previous results that were normal as defined by hospital reference range and done closest to the time of but before admission (median interval, 2 months), 13 (0.4%; 95% CI, 0.2% to 0.7%), repeat values were outside a range considered acceptable for surgery. Most of the abnormalities were predictable from the patient's history, and most were not noted in the medical record. Of 461 previous tests that were abnormal, 78 (17%; CI, 13% to 20%) repeat values at admission were outside a range considered acceptable for surgery (P less than 0.001, frequency of clinically important abnormalities of patients with normal previous results with those with abnormal previous results). Physicians evaluating patients preoperatively could safely substitute the previous test results analyzed in this study for preoperative screening tests if the previous tests are normal and no obvious indication for retesting is present.
Parsons, Suzanne; Starling, Bella; Mullan-Jensen, Christine; Tham, Su-Gwan; Warner, Kay; Wever, Kim
To explore European-based pharmaceutical industry professionals' beliefs about patient and public involvement (PPI) in medicines research and development (R&D). Pharmaceutical companies in the UK, Poland and Spain. 21 pharmaceutical industry professionals, four based in the UK, five with pan-European roles, four based in Spain and eight based in Poland. Qualitative interview study (telephone and face-to-face, semistructured interviews). All interviews were audio taped, translated (where appropriate) and transcribed for analysis using the Framework approach. 21 pharmaceutical industry professionals participated. Key themes were: beliefs about (1) whether patients and the public should be involved in medicines R&D; (2) the barriers and facilitators to PPI in medicines R&D and (3) how the current relationships between the pharmaceutical industry, patient organisations and patients influence PPI in medicines R&D. Although interviewees appeared positive about PPI, many were uncertain about when, how and which patients to involve. Patients and the public's lack of knowledge and interest in medicines R&D, and the pharmaceutical industry's lack of knowledge, interest and receptivity to PPI were believed to be key challenges to increasing PPI. Interviewees also believed that relationships between the pharmaceutical industry, patient organisations, patients and the public needed to change to facilitate PPI in medicines R&D. Existing pharmaceutical industry codes of practice and negative media reporting of the pharmaceutical industry were also seen as negative influences on these relationships. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Granados, C. E.; Martin, F.
A valve which permits the maintenance of an installation vacuum when electric current fails is described. It also lets the air in the previous vacuum bomb to prevent the oil ascending in the vacuum tubes. (Author)
Poppe, Michaela; Zitek, Andreas; Scheikl, Sigrid; Heidenreich, Andrea; Kurz, Roman; Schrittwieser, Martin; Muhar, Susanne
Due to immense technological and economic developments, human activities producing greenhouse gases, destructing ecosystems, changing landscapes and societies are influencing the world to such a degree, that the environment and human well-being are significantly affected. This results in a need to educate citizens towards a scientific understanding of complex socio-environmental systems. The OECD programme for international student assessment (PISA - http://www.pisa.oecd.org) investigated in detail the science competencies of 15-year-old students in 2006. The report documented that teenagers in OECD countries are mostly well aware of environmental issues but often know little about their causes or options to tackle these challenges in the future. For the integration of science with school learning and involving young people actively into scientific research Sparkling Science projects are funded by the Federal Ministry of Science and Research in Austria. Within the Sparkling Science Project "FlussAu:WOW!" (http://www.sparklingscience.at/de/projekte/574-flussau-wow-/) scientists work together with 15 to 18-year-old students of two Austrian High Schools over two years to assess the functions and processes in near natural and anthropogenically changed river floodplains. Within the first year of collaboration students, teachers and scientists elaborated on abiotic, biotic and spatial indicators for assessing and evaluating the ecological functionality of riverine systems. After a theoretical introduction students formulated research questions, hypotheses and planned and conducted field work in two different floodplain areas in Lower Austria. From the second year on, students are going to develop qualitative models on processes in river floodplain systems by means of the learning software "DynaLearn". The "DynaLearn" software is an engaging, interactive, hierarchically structured learning environment that was developed within the EU-FP7 project "DynaLearn" (http
Williams, Janet L; Faucett, W Andrew; Smith-Packard, Bethanny; Wagner, Monisa; Williams, Marc S
Whole genome sequencing (WGS) is being used for evaluation of individuals with undiagnosed disease of suspected genetic origin. Implementing WGS into clinical practice will place an increased burden upon care teams with regard to pre-test patient education and counseling about results. To quantitate the time needed for appropriate pre-test evaluation of participants in WGS testing, we documented the time spent by our clinical research group on various activities related to program preparation, participant screening, and consent prior to WGS. Participants were children or young adults with autism, intellectual or developmental disability, and/or congenital anomalies, who have remained undiagnosed despite previous evaluation, and their biologic parents. Results showed that significant time was spent in securing allocation of clinical research space to counsel participants and families, and in acquisition and review of participant's medical records. Pre-enrollment chart review identified two individuals with existing diagnoses resulting in savings of $30,000 for the genome sequencing alone, as well as saving hours of personnel time for genome interpretation and communication of WGS results. New WGS programs should plan for costs associated with additional pre-test administrative planning and patient evaluation time that will be required to provide high quality care.
Ezra S Simon
Full Text Available Parent-Teacher Associations and other community groups can play a significant role in helping to establish and run refugee schools; their involvement can also help refugee adults adjust to their changed circumstances.
Burns, K E A; Rizvi, L; Smith, O M; Lee, Y; Lee, J; Wang, M; Brown, M; Parker, M; Premji, A; Leung, D; Hammond Mobilio, M; Gotlib-Conn, L; Nisenbaum, R; Santos, M; Li, Y; Mehta, S
To assess the feasibility of conducting a randomized trial comparing two strategies [physician (MD) vs. non-physician (non-MD)] for approaching substitute decision makers (SDMs) for research and to evaluate SDMs' experiences in being approached for consent. A pilot mixed methods study of first encounters with SDMs. Of 137 SDMs (162 eligibility events), 67 and 70 were randomized to MD and non-MD introductions, respectively. Eighty SDMs (98 events) provided consent and 21 SDMs (24 events) declined consent for studies, including 2 SDMs who provided and declined consent. We identified few missed introductions [4/52 (7.7 %)] and protocol violations [6/117 (5.1 %)], high comfort, satisfaction and acceptance scores and similar consent rates in both arms. SDMs provided consent significantly more often when a patient update was provided in the MD arm. Most SDMs (85.7 %) felt that physician involvement was inconsequential and preferred physician time to be dedicated to patient care; however, SDM experiences were closely related to their recall of being approached and recall was poor. SDMs highlighted 7 themes of importance to them in research surrogate decision-making. SDMs prioritized the personal attributes of the person approaching them over professional designation and preferred physician time to be dedicated to patient care. A mixed methods design evaluated intervention fidelity and provided the rationale for not proceeding to a larger trial, despite achieving all feasibility metrics in the pilot trial. NCT01232621.
Singer, E.; Edwards, K. J.
The Center for Dark Energy Biosphere Investigations (C-DEBI) was established as a National Science and Technology Center (NTC) funded by NSF in 2009. Its mission is to explore life beneath the seafloor and make transformative discoveries that advance science, benefit society, and inspire people of all ages and origins. Thanks to the multi-institutional character of C-DEBI, the Center has not only started a collaborative framework for experimental and exploratory research, but also targets education programs at the K-12, undergraduate, graduate and postdoctoral levels involving biogeochemists, microbiologists, geochemists and geologists. An example for this is the introduction of deep biosphere research into the K-12 classroom. In this context, C-DEBI has collaborated with teachers from the Animo Leadership High School in Inglewood, which is ranked 27th within California and has a total minority enrollment of 99%, to adapt Marine Biology classes and introduce latest Deep Biosphere Science discoveries. Three high school students participated in a pilot project over 6 months to gain hands-on experience in an ongoing study in a Marine Microbiology laboratory at University of Southern California. Graduate and postdoctoral students from the Departments of Biological and Earth Sciences supervised theory, praxis and project design, which was aimed at culturing strains of Marinobacter, one of the most ubiquitous marine microbial genera, and preparing extracted DNA for sequencing using the latest Ion Torrent Technology. Students learned about the interdisciplinary global context of the study and gained experience in laboratory procedures, including basic aseptical techniques, molecular biology methods, and cutting-edge sequencing Technology, as well as problem-solving and creative thinking in project preparation and conduction. This hands-on training included discussions about the 'Whys' and 'Hows' in today's research with respect to their specific project, but also from a
... participants' previous participation in government programs and ensure that the past record is acceptable prior... information is designed to be 100 percent automated and digital submission of all data and certifications is... government programs and ensure that the past record is acceptable prior to granting approval to participate...
Nysangaliev, A.N.; Kuspangaliev, T.K.
Tengiz petroleum deposit previous study is described. Some consideration about structure of productive formation, specific characteristic properties of petroleum-bearing collectors are presented. Recommendation on their detail study and using of experience on exploration and development of petroleum deposit which have analogy on most important geological and industrial parameters are given. (author)
Nijkamp, J. W.; Korteweg, F. J.; Holm, J. P.; Timmer, A.; Erwich, J. J. H. M.; van Pampus, M. G.
Objective: A history of foetal death is a risk factor for complications and foetal death in subsequent pregnancies as most previous risk factors remain present and an underlying cause of death may recur. The purpose of this study was to evaluate subsequent pregnancy outcome after foetal death and to
Fisak, B; Peterson, R D; Tantleff-Dunn, S; Molnar, J M
The purpose of this study was to replicate and expand upon previous research that has examined the potential association between vegetarianism and disordered eating. Limitations of previous research studies are addressed, including possible low reliability of measures of eating pathology within vegetarian samples, use of only a few dietary restraint measures, and a paucity of research examining potential differences in body image and food choice motives of vegetarians versus nonvegetarians. Two hundred and fifty-six college students completed a number of measures of eating pathology and body image, and a food choice motives questionnaire. Interestingly, no significant differences were found between vegetarians and nonvegetarians in measures of eating pathology or body image. However, significant differences in food choice motives were found. Implications for both researchers and clinicians are discussed.
The aim of this study was to identify influences on the job satisfaction of previously disadvantaged school principals in North-West Province. Evans's theory of job satisfaction, morale and motivation was useful as a conceptual framework. A mixedmethods explanatory research design was important in discovering issues with ...
McNeal, Ralph B., Jr.
Previous research shows inconsistent relationships between parent involvement and academic achievement and often asks why such inconsistencies occur. The research proposes a theoretical model that separates parent involvement into those practices linking parents to children and those practices linking parents to other adults in the school…
Weiss, M.; Sýkorová, Zuzana; Garnica, S.; Riess, K.; Martos, F.; Krause, C.; Oberwinkler, F.; Bauer, R.; Redecker, D.
Roč. 6, č. 2 (2011), s. 1-7 E-ISSN 1932-6203 Institutional research plan: CEZ:AV0Z60050516 Keywords : Sebacinales * endophytes * mycorrhiza Subject RIV: EF - Botanics Impact factor: 4.092, year: 2011
Bentley, R Alexander; Acerbi, Alberto; Ormerod, Paul; Lampos, Vasileios
For the 20(th) century since the Depression, we find a strong correlation between a 'literary misery index' derived from English language books and a moving average of the previous decade of the annual U.S. economic misery index, which is the sum of inflation and unemployment rates. We find a peak in the goodness of fit at 11 years for the moving average. The fit between the two misery indices holds when using different techniques to measure the literary misery index, and this fit is significantly better than other possible correlations with different emotion indices. To check the robustness of the results, we also analysed books written in German language and obtained very similar correlations with the German economic misery index. The results suggest that millions of books published every year average the authors' shared economic experiences over the past decade.
Bentley, R. Alexander; Acerbi, Alberto; Ormerod, Paul; Lampos, Vasileios
For the 20th century since the Depression, we find a strong correlation between a ‘literary misery index’ derived from English language books and a moving average of the previous decade of the annual U.S. economic misery index, which is the sum of inflation and unemployment rates. We find a peak in the goodness of fit at 11 years for the moving average. The fit between the two misery indices holds when using different techniques to measure the literary misery index, and this fit is significantly better than other possible correlations with different emotion indices. To check the robustness of the results, we also analysed books written in German language and obtained very similar correlations with the German economic misery index. The results suggest that millions of books published every year average the authors' shared economic experiences over the past decade. PMID:24416159
Chandlee, George O.; Woolford, Barbara
Previous experience in manned space flight programs can be used to compile a data base of human factors lessons learned for the purpose of developing aids in the future design of inhabited spacecraft. The objectives are to gather information available from relevant sources, to develop a taxonomy of human factors data, and to produce a data base that can be used in the future for those people involved in the design of manned spacecraft operations. A study is currently underway at the Johnson Space Center with the objective of compiling, classifying, and summarizing relevant human factors data bearing on the lessons learned from previous manned space flights. The research reported defines sources of data, methods for collection, and proposes a classification for human factors data that may be a model for other human factors disciplines.
Spent fuel and high level waste: Chemical durability and performance under simulated repository conditions. Results of a coordinated research project 1998-2004. Part 2: Results of a previously unpublished CRP: Performance of high level waste forms and packages under repository conditions. Results of a co-ordinated research project 1991-1998
The objective of the CRP (Coordinated Research Projekt) on the 'Performance of High Level Waste Forms and Packages under Repository Conditions' was to contribute to the development and implementation of proper and sound technologies for HLW and spent fuel management. Special emphasis was given to the identification of various waste form properties and the study of their long term durability in simulated repository conditions. Another objective was to promote the co-operation and exchange of information between Member States on experimental concerning behaviour of the waste form. The CRP was composed of research contracts and agreements with Argentina, Australia, Belgium, Canada, China, Czech Republic, Finland, France, Germany, India, Japan, Russia, and the United States of America. The publication includes 14 individual contributions of the participants to the CRP, which are indexed separately.
Naqui, SZH; Lovell, SJ; Lovell, ME
INTRODUCTION We noted a report that more significant symptoms may be expressed after second whiplash injuries by a suggested cumulative effect, including degeneration. We wondered if patients were underestimating the severity of their earlier injury. PATIENTS AND METHODS We studied recent medicolegal reports, to assess subjects with a second whiplash injury. They had been asked whether their earlier injury was worse, the same or lesser in severity. RESULTS From the study cohort, 101 patients (87%) felt that they had fully recovered from their first injury and 15 (13%) had not. Seventy-six subjects considered their first injury of lesser severity, 24 worse and 16 the same. Of the 24 that felt the violence of their first accident was worse, only 8 had worse symptoms, and 16 felt their symptoms were mainly the same or less than their symptoms from their second injury. Statistical analysis of the data revealed that the proportion of those claiming a difference who said the previous injury was lesser was 76% (95% CI 66–84%). The observed proportion with a lesser injury was considerably higher than the 50% anticipated. CONCLUSIONS We feel that subjects may underestimate the severity of an earlier injury and associated symptoms. Reasons for this may include secondary gain rather than any proposed cumulative effect. PMID:18201501
Napierała, Marta; Kulza, Maksymilian; Wachowiak, Anna; Jabłecka, Katarzyna; Florek, Ewa
Currently very popular in the market of tobacco products have gained electronic cigarettes (ang. E-cigarettes). These products are considered to be potentially less harmful in compared to traditional tobacco products. However, current reports indicate that the statements of the producers regarding to the composition of the e- liquids not always are sufficient, and consumers often do not have reliable information on the quality of the product used by them. This paper contain a review of previous reports on the composition of e-cigarettes and their impact on health. Most of the observed health effects was related to symptoms of the respiratory tract, mouth, throat, neurological complications and sensory organs. Particularly hazardous effects of the e-cigarettes were: pneumonia, congestive heart failure, confusion, convulsions, hypotension, aspiration pneumonia, face second-degree burns, blindness, chest pain and rapid heartbeat. In the literature there is no information relating to passive exposure by the aerosols released during e-cigarette smoking. Furthermore, the information regarding to the use of these products in the long term are not also available.
[An intergenerational health promotion program involving older adults in urban areas. "Research of Productivity by Intergenerational Sympathy (REPRINTS)": first-year experience and short-term effects].
Fujiwara, Yoshinori; Nishi, Mariko; Watanabe, Naoki; Lee, Sangyoon; Inoue, Kazuko; Yoshida, Hiroto; Sakuma, Naoko; Kureta, Youichi; Ishii, Kenji; Uchida, Hayato; Kakuno, Fumihiko; Shinkai, Shoji
We have launched a new intervention study, called "Research of Productivity by Intergenerational Sympathy (REPRINTS)" in which senior volunteers engage in reading picture books to children. The "REPRINTS" program consistently involves social roles and intellectual activity, two higher-level functional capacities. This study reported findings and problems experienced through "REPRINTS" during the first year, ascertained potential effectiveness of social activity, and proposed methods for continued activity. Basic concepts of "REPRINTS"program include "contribution to society", "life-long learning", and "group activity." Sixty seven volunteers and 74 controls, all aged 60 years and over living in three areas, ie., Chuo-ku, central Tokyo, Kawasaki city, suburb of Tokyo and Nagahama city, a local city, participated in a baseline health check-up in June, 2004. After completion of 3-month training seminars (once a week, 2 hr per session), volunteers visited public elementary schools and kindergartens in groups of 6-10 persons for 6 months. They were assessed again by follow-up health check-up in March, 2005. At baseline, the proportion of those who had no grand children (41.8% vs. 20.3%, P= 0.006), average school years (13.4 +/- 2.5 vs. 12.3 +/- 2.5 years, P= 0.008), having any experience of volunteer activities (79.1% vs. 52.7%, P=0.001), and an usual walking speed (86.7 +/- 12.3 vs. 81.3 +/- 12.9 m/min, P=0.012) were significantly higher in volunteers than in controls. There was no significant difference in other baseline characteristics between the two groups. At follow-up, social network scores for 56 volunteers were significantly improved: frequency of contact with grandchildren and others around neighborhood and size of circles of friends and acquaintances were increased, as compared to controls. Social support scores for the volunteers significantly decreased in the receiving aspect, while increased in the giving aspect. In addition, consciousness of loving
I am a primary health care (PHC) coordinator working with the May Day Rural project, a local NGO involved in integrated approaches and programs with rural communities in the Ga District of the Greater-Accra region in Ghana. When we talk about the community development approach we must first and foremost recognize that we are talking about women, because in the developing world frequent childbirths mean that her burden of mortality is higher than a man's; her workload is extremely heavy--whether in gardening, farming, other household duties, caring for the sick, or the rearing of children; she has a key role in PHC and community development, because men are always looking for greener pastures elsewhere, leaving the women behind. Women's concerns are critical in most health care projects and women and children are their main beneficiaries. Why not include women in the management team, project design, implementation and evaluation processes? That is what the May Day Rural project is practicing, encouraging women's participation and creating a relationship of trust. full text
Davies, Andrea; Dobscha, Susan; Geiger, Susi
that the transition into parenthood can be difficult for men due to their lack of a physical connection to the pregnancy, a perception that the baby industry is not designed for them, the continuance of male stereotypes in the media, and also the time available to men to become involved in consumption activities......-natal data. Data revealed that men, according to their partner’s perceptions, used consumption as a virtual umbilical cord, although levels of consumption involvement varied from co-involvement for most purchases, to limited involvement, and/or involvement for ‘large’ items, particularly travel systems...... and technical items. This research also revealed that men partook in highly masculinized forms of “nesting,” and in general shunned pregnancy book reading; although some did engage in “research” activities such as searching the internet for product safety information. We conclude from this study...
Maraldo, Maja V; Aznar, Marianne C; Vogelius, Ivan R
PURPOSE: The involved node radiation therapy (INRT) strategy was introduced for patients with Hodgkin lymphoma (HL) to reduce the risk of late effects. With INRT, only the originally involved lymph nodes are irradiated. We present treatment outcome in a retrospective analysis using this strategy...... to 36 Gy). Patients attended regular follow-up visits until 5 years after therapy. RESULTS: The 4-year freedom from disease progression was 96.4% (95% confidence interval: 92.4%-100.4%), median follow-up of 50 months (range: 4-71 months). Three relapses occurred: 2 within the previous radiation field......, and 1 in a previously uninvolved region. The 4-year overall survival was 94% (95% confidence interval: 88.8%-99.1%), median follow-up of 58 months (range: 4-91 months). Early radiation therapy toxicity was limited to grade 1 (23.4%) and grade 2 (13.8%). During follow-up, 8 patients died, none from HL, 7...
Mar 2, 2015 ... Joseph Daniels1,&, Ruth Nduati1,2, James Kiarie1,3, Carey Farquhar1,4,5 .... or basic science research career (Socio-Behavioral Research, .... a research environment that supports knowledge sharing to develop research ...
Mehmet Emin Öztürk
Full Text Available Individuals with Disabilities Education Act (IDEA gives many rights to parents with special needs in terms of involvement and participation. Given the importance of family involvement in the special education process, and federal legislation that increasingly mandated and supported such involvement over time, considerable research has focused on the multiple ways that relationships between schools and families in the special education decision making process have played out. Educational professionals should create a positive climate for CLD families so that they feel more comfortable and therefore are able to participate more authentically and meaningfully.
Oct 24, 2017 ... Health Insurance Programme (TISHIP) in Nigeria: a case study of ... University Medical Centre staff responses showed a satisfactory scheme implementation. ... benefits. Previous studies revealed that students barely visit.
Jul 23, 2013 ... 1Department of Family Medicine, Faculty of Medicine, Suez Canal University, Egypt. &Corresponding ... Results: Hundred family physicians were included in the study. They were previously ..... organization. There was a ...
Apr 16, 2012 ... We chose to include male students in our study because previous studies have shown widespread lack of knowledge of the disease .... masculinity. ... The last few years have seen widespread use of internet social media.
The article surveys the scientific results of previous research into the contribution of the sun to climatic alterations. The author concludes that there is evidence of eight cold periods after the last ice age and that the alterations largely were due to climate effects from the sun. However, these effects are only causing a fraction of the registered global warming. It is assumed that the human activities are contributing to the rest of the greenhouse effect
Ormary Barberi Ruiz
Full Text Available The statements presented in this article represents a preliminary version of the proposed model of pre-professional practices (PPP of the National University of Education (UNAE of Ecuador, an urgent institutional necessity is revealed in the descriptive analyzes conducted from technical support - administrative (reports, interviews, testimonials, pedagogical foundations of UNAE (curricular directionality, transverse axes in practice, career plan, approach and diagnostic examination as subject nature of the pre professional practice and the demand of socio educational contexts where the practices have been emerging to resize them. By relating these elements allowed conceiving the modeling of the processes of the pre-professional practices for the development of professional skills of future teachers through four components: contextual projective, implementation (tutoring, accompaniment (teaching couple and monitoring (meetings at the beginning, during and end of practice. The initial training of teachers is inherent to teaching (academic and professional training, research and links with the community, these are fundamental pillars of Ecuadorian higher education.
Tanabe, M; Iwase, T; Okumura, Y; Yoshida, A; Masuda, N; Nakatsukasa, K; Shien, T; Tanaka, S; Komoike, Y; Taguchi, T; Arima, N; Nishimura, R; Inaji, H; Ishitobi, M
Breast-conserving surgery is a standard treatment for early breast cancer. For ipsilateral breast tumor recurrence (IBTR) after breast-conserving surgery, salvage mastectomy is the current standard surgical procedure. However, it is not rare for patients with IBTR who have received salvage mastectomy to develop local recurrence. In this study, we examined the risk factors of local recurrence after salvage mastectomy for IBTR. A total of 118 consecutive patients who had histologically confirmed IBTR without distant metastases and underwent salvage mastectomy without irradiation for IBTR between 1989 and 2008 were included from eight institutions in Japan. The risk factors of local recurrence were assessed. The median follow-up period from salvage mastectomy for IBTR was 4.6 years. Patients with pN2 or higher on diagnosis of the primary tumor showed significantly poorer local recurrence-free survival than those with pN0 or pN1 at primary tumor (p mastectomy for IBTR. Further research and validation studies are needed. (UMIN-CTR number UMIN000008136). Copyright © 2016 Elsevier Ltd. All rights reserved.
Sep 7, 2012 ... disease has contributed to its low priority on the national. ... common presentation of esophageal cancer leading to its diagnosis is .... evidence of distant node involvement located around the celiac and/or para-aortic areas.
Jul 14, 2016 ... 9.44), government employment by occupation (AOR=2.23, 95%CI: ... Conclusion: Male involvement in PMTCT programme was low in the study area. ..... Gondar woreda health offices for their assistance and permission to.
A descriptive qualitative research design was used to determine whether participants ... simulation as a teaching method; a manikin offering effective learning; confidence ..... Tesch R. Qualitative Research: Analysis Types and Software Tools.
research process, as part of which students must find and appraise evidence from research. This highlights that teaching research methodology is inclined towards equipping students ... Students believed that evidence-based practice was vital, yet their understanding of the concept was restricted when compared with the.
Literature search and review of research involving radioisotopes conducted by Dr. G.E. Burch at Charity Hospital in New Orleans, Louisiana under the auspices of Tulane University during the 1940s,1950s, and 1960s
Brooks, F.; Curtis, E.C.; Forrester, G.; Roth, V.; Spickard, J.; Webster, B.; Engle, J.; Perkins, L.; Powell, S.
This report presents a synopsis of research performed by Dr. G.E. Burch during the 1940s, 1950s, and 1960s at Charity Hospital in New Orleans, Louisiana. Four technical experts have reviewed twenty-seven research published in peer-reviewed research journals and proceedings by Dr. Burch and his colleagues between the years 1946 and 1968. The papers were grouped prior to the review into three categories represented in this report by the following chapter titles: Studies Involving Human Subjects; Isotopic Studies Not Involving Human or Canine Subjects; and Studies Involving Dogs as Test Models. The experts' reviews addressed five areas. What, if Any, Is the Scientific Value of the Research on Which These Studies Are Based?; Did the Research Provide Medicine with New and Useful Information?; What Contributions Did This Research Make to Patient Care or to the Understanding of the Disease Process?; What Was Known Medically about Matters Addressed by This Research at the Time It Was Being Conducted? and Is There Documentation That Shows Informed Consent?
Turtle, Kellie; McElearney, Aisling; Scott, Joanne
Children's right to participate as enshrined in Article 12 of the United Nations Convention on the Rights of the Child is increasingly evident in the rhetoric of policy documents as well as in practice and research with children and young people. Children's participation in research is being facilitated in a range of creative ways, including as…
Kynigos, Chronis; Psycharis, Giorgos
The paper describes a study of the contexts of six teams, expert in research and development of digital media for learning mathematics, who cross-experimented in classrooms with the use of each other's artefacts. Contextual issues regarding the designed tasks and technologies, the socio-systemic milieu and the ways in which the researchers worked…
If interviews are to be considered embodied experiences, than the potential influence of the embodied researcher must be explored. A focus on specific attributes such as age or ethnicity belies the complex and negotiated space that both researcher and participant inhabit simultaneously. Drawing on empirical research with stroke survivors in an ethnically mixed area of Indonesia, this paper highlights the importance of considering embodiment as a specific methodological concern. Three specific interactions are described and analysed, illustrating the active nature of the embodied researcher in narrative production and development. The intersectionality of embodied features is evident, alongside their fluctuating influence in time and place. These interactions draw attention to the need to consider the researcher within the interview process and the subsequent analysis and presentation of narrative findings. The paper concludes with a reinforcement of the importance of ongoing and meaningful reflexivity in research, a need to consider the researcher as the other participant, and specifically a call to engage with and present the dynamic nature of embodiment.
South, Annabelle; Hanley, Bec; Gafos, Mitzy; Cromarty, Ben; Stephens, Richard; Sturgeon, Kate; Scott, Karen; Cragg, William J; Tweed, Conor D; Teera, Jacqueline; Vale, Claire L
Patient and public involvement (PPI) in studies carried out by the UK Medical Research Council Clinical Trials Unit (MRC CTU) at University College London varies by research type and setting. We developed a series of case studies of PPI to document and share good practice. We used purposive sampling to identify studies representing the scope of research at the MRC CTU and different approaches to PPI. We carried out semi-structured interviews with staff and patient representatives. Interview notes were analysed descriptively to categorise the main aims and motivations for involvement; activities undertaken; their impact on the studies and lessons learned. We conducted 19 interviews about ten case studies, comprising one systematic review, one observational study and 8 randomised controlled trials in HIV and cancer. Studies were either open or completed, with start dates between 2003 and 2011. Interviews took place between March and November 2014 and were updated in summer 2015 where there had been significant developments in the study (i.e. if the study had presented results subsequent to the interview taking place). A wide range of PPI models, including representation on trial committees or management groups, community engagement, one-off task-focused activities, patient research partners and participant involvement had been used. Overall, interviewees felt that PPI had a positive impact, leading to improvements, for example in the research question; study design; communication with potential participants; study recruitment; confidence to carry out or complete a study; interpretation and communication of results; and influence on future research. A range of models of PPI can benefit clinical studies. Researchers should consider different approaches to PPI, based on the desired impact and the people they want to involve. Use of multiple models may increase the potential impacts of PPI in clinical research.
Di Leo, Alberto; Marrelli, Daniele; Roviello, Franco; Bernini, Marco; Minicozzi, AnnaMaria; Giacopuzzi, Simone; Pedrazzani, Corrado; Baiocchi, Luca Gian; de Manzoni, Giovanni
The aim of lymphadenectomy is to clear all the metastatic nodes achieving a complete removal of the tumor; nevertheless, its role in gastric cancer has been very much debated. The frequency of node metastasis in each lymphatic station according to the International Gastric Cancer Association, was studied in 545 patients who underwent D2 or D3 lymphadenectomy from June 1988 to December 2002. Upper third early cancers have shown an involvement of N2 celiac nodes in 25%. In advanced cancers, there was a high frequency of metastasis in the right gastroepiploic (from 10% in T2 to 50% in T4) and in the paraaortic nodes (26% in T2, 32% in T3, 38 % in T4). N3 left paracardial nodes involvement was observed in an important share of middle third tumors (17% in T3, 36% in T4). Splenic hilum nodes metastasis were common in T3 and T4 cancers located in the upper (39%) and middle (17%) stomach. N2 nodal involvement was frequent in lower third advanced cancers. Metastasis in M left paracardial and short gastric nodes were observed in a small percentage of cases. Given the nodal diffusion in our gastric cancer patients, extended lymphadenectomy is still a rationale to obtain radical resection.
Jul 20, 2016 ... Abstract. Introduction: In sub Saharan Africa, childbirth remains a challenge that creates the need for additional screening tools. Maternal pelvis height, which is currently in use by automotive engineers has previously been shown to have significant associations with various childbirth related outcomes and ...
retention in a newly established medical school in Tanzania. Previous studies found that small salaries, limited career options, heavy teaching loads, growing enrolment and the absence of equipment and support staff were the main barriers to retain faculty staff. These factors have been confirmed by the study at CUHAS ...
[2,3] The definition of a rural-origin student. (ROS) has come under some debate, but for the purpose of this study ... The language of teaching and learning for students not studying in their mother tongue has been seen to pose problems ... trend towards e-learning. Students not previously exposed to this level of technology ...
Jun 24, 2015 ... They also attempted to evaluate the determinants of journal choice and perceived barriers to academic writing among. Nigerian academicians. Respondents were academicians used in the context of this study to mean anyone involved in academic writing. Such persons must have written and published at ...
for occupational therapy education programmes to become more responsive to the local context, and to facilitate graduate attributes such as resilience and ... facilitate students' ability to examine institutional systems that hinder .... Only two participants were involved ... in their practice settings and that other health.
One of the guiding principles of the teaching and performance of a medical intervention is to 'firstly do no harm'. Gaining access to a patient's circulatory system for the purpose of administering fluid and/or medications is commonly achieved through a procedure that involves piercing of the skin with a needle and inserting a ...
Mar 5, 2013 ... the Ministry of Health and Social Welfare, The Gambia. These were collected routinely .... and are poorly educated with little or no dietary awareness. In many .... the media involvement in chronic diseases prevention and management ..... Global Brand for Young Adults: Implication for International. Tobacco ...
May 20, 2016 ... level of burnout among oral hygiene students at UWC. Background. University students are exposed to a multitude of stressors that may impact on their performance. The nature of health sciences education generally involves early engagement with patients and communities, which may add to the stressors ...
West, Philip T., Ed.
Summarizes findings from two studies: 93 professors of educational administration ranked citizen involvement and school district information programs high as public relations strategies and an analysis of both mail and telephone surveys conducted concurrently affirmed the advantages of the telephone survey. (MLF)
Nov 15, 2017 ... content validity was cross-checked by a Reproductive health expert. Qualitative Data were ... and the generated result were triangulated with the quantitative results. ... were Involved in premarital sexual practice because of their desire for sexual ... (30.9%) of them were regular Khat users (Table 3).
Jan 30, 2017 ... cross-sectional study involving women attending antenatal clinic at selected clinics of Nairobi .... had ASB, giving a prevalence of 21.5%(95 CI range 19.1- ..... technical advice in proposal development, in-process consultation.
Nov 30, 2017 ... Data were summarized using proportions and presented using tables, charts and figures. Results: .... availability of anti-rabies vaccines at the health facilities, source of vaccines .... person was involved in carrying and preparing of meat of a dog that ..... Rabies Encephalitis in Malaria-Endemic Area,. Malawi ...
if and how a communication skills course should be included in the undergraduate curriculum; possible education strategies to improve dental communication between students and patients; and involvement of faculty in future communication education. Data from the interview guided the development of the questionnaire ...
Oct 21, 2012 ... There was an association (P<0.05) between intestinal parasitic infection and place of residence, agro-ecological location, family size, water source, .... This was a cross-sectional survey that involved interviewing of the HIV/AIDS patients using structured a questionnaire and also laboratory analysis.
Feb 16, 2012 ... prerequisite for marriages among religious leaders in Sokoto, North Western Nigeria ... Methods: This was a descriptive cross-sectional study involving 158 ... such as mobilising people for various medical, social, cultural and religious .... In Malaysia, the possibility of making the HIV test a compulsory pre-.
May 6, 2014 ... facilitate and support articulation between the ECT mid-level worker qualification and the professional B EMC degree. Methods. The researchers used an exploratory, sequential mixed-method design, which is characterised by a qualitative phase of research followed by a quantitative phase. This design is ...
supports medical education and research at institutions in 12 ... (CBE). CapacityPlus, led by IntraHealth International, is the USAID-funded ... acquire public health, clinical, and/or research skills, usually through applied learning in a .... If students were evaluated, indicate the type of student (i.e. medical, dental, nursing, etc.) ...
Jan 24, 2017 ... and the specific rotavirus VP4 (P-types) and VP7 (G-types) determined. Results: The .... Centre for Virus Research (CVR) of the Kenya Medical Research. Institute (KEMRI) ... rotavirus dsRNA was run on 10% polyacrylamide resolving gels using a large format .... What is known about this topic. •. Rotavirus is ...
Following the Kyoto demands the budgets allocated to the renewable energies researches are more and more important. Among these energies the biomass is very popular in Japan because it does not increase the carbon dioxide level in the atmosphere. Since the years 1990 the Japan implemented three ministries to promote the biomass energy in the country. This document presents the biomass situation in the world and more specially in the Japan and the researches programs with the NEDO, the New Energy and Industrial Technology Development Organization). (A.L.B.)
de Barcellos, Marcia Dutra; Kügler, Jens Oliver; Scholderer, Joachim
, foods, household appliances, alcoholic beverages) and on two involvement dimensions (interest and importance). The results indicate that in three of the four super-categories the predominant source of variation in product involvement were the attributes of the products, not the product category...... they belong to. Only for foods, the traditional conceptualisation of involvement held. The findings suggest that parts of previous research on involvement may have to be re-interpreted and that future research should adopt more complex conceptualisations of involvement. From a managerial point of view...
Tozer, Rosemary; Atkin, Karl; Wenham, Aniela
Adult siblings of people with autism and a learning disability have hitherto been largely overlooked by research, policy and practice in the UK. As part of a qualitative study focussing on adult siblings, we met twelve people with autism plus severe learning disability with their brother or sister. Individually tailored resources were used to make…
Youssef, Saoussen S.
Since the early 1900s, the traditional thinking about education and school role in the USA has shifted to view schools as non-isolated entities from the larger society where schooling should be re-energized with help from the society, which includes student homes and communities. This mixed approach action research study evolves around improving…
Proyer, R.T.; Ruch, W.; Ali, N.S.; Al-Olimat, H. S.; Amemiya, T.; Adal, T.A.; Ansari, S. A.; Arhar, Š.; Asem, G.; Baudin, N.; Bawab, S.; Bergen, D.; Brdar, I.; Brites, R.; Brunner-Sciarra, M.; Carrell, A.; Dios, H.C.; Celik, M.; Ceschi, G.; Chang, K.; Cheryomukhin, A.; Chik, M.P.Y.; Chlopicki, W.; Cranney, J.; Dahourou, D.; Doosje, S.; Dore, M.; El-Arousy, N.; Ficková, E.; Führ, M.; Gallivan, J.; Geling, H.; Germikova, L.; Goh, A.; Gonzáles, R.D.; Ho, S.K.; Hřebíčková, Martina; Jaime, B.; Hertzberg Kaare, B.; Kamble, S.; Kazarian, S.; Kerkkänen, P.; Klementová, M.; Kobozeva, I.M.; Kovjanic, S.; Kumaraswamy, N.; Lampert, M.; Liao, Ch.; Levesque, M.; Loizou, L.; Loving, R.D.; Lyttle, J.; Machline, V.C.; McGoldrick, S.; McRorie, M.; Min, L.; Mottus, R.; Munyae, M.; Navia, C.E.; Nkhalamba, M.; Pedrini, P.P.; Petkova, M.; Platt, T.; Popa, D-E.; Radomska, A.; Rashid, T.; Rawlings, D.; Rubio, V.J.; Samson, A.C.; Sarid, O.; Shams, S.; Sisokohm, S.; Smári, J.; Sneddon, I.; Snikhovska, I.; Stephanenko, E.A.; Stokenberga, L.; Stuer, B.; Tanoto, Y.S.R.; Tapia, L.; Taylor, J.; Thibault, P.; Thompson, A.; Thőrn, H.; Toyota, H.; Ujlaky, J.; Vanno, V.; van der Westhuizen, B.; Wijayathilake, D.; Wong, P.S.O.; Wycoff, E.B.; Yeun, E.J.
Roč. 22, 1/2 (2009), s. 253-279 ISSN 0933-1719 R&D Projects: GA ČR GA406/07/1561 Institutional research plan: CEZ:AV0Z70250504 Keywords : cross -cultural comparisons * gelotophobia * humor * multi-national study Subject RIV: AN - Psychology Impact factor: 0.771, year: 2009
Moret-Hartman, M.; van der Wilt, G.J.; Grin, J.
The Dutch Health Care Insurance Board (HCIB) commissions research to guide their policy recommendations. However, the studies conducted do not always yield relevant information. This may result from differences in problem definitions held by the HCIB and target populations. To compensate these
Bochud, Murielle; Currat, Christine; Chapatte, Laurence; Roth, Cindy; Mooser, Vincent
We aimed to evaluate the interest of adult inpatients and selected outpatients in engaging in a large, real-life, hospital-based, genomic medicine research project and in receiving clinically actionable incidental findings. Within the framework of the cross-sectional Institutional Biobank of Lausanne, Switzerland, a total of 25721 patients of the CHUV University Hospital were systematically invited to grant researchers access to their biomedical data and to donate blood for future analyses, including whole-genome sequencing. Multivariable logistic regression analysis was used to identify personal factors, including age, gender, religion, ethnicity, citizenship, education level and mode of admission, associated with willingness to participate in this genomic research project and with interest in receiving clinically actionable incidental findings. The overall participation rate was 79% (20343/25721). Participation rate declined progressively with age, averaging 83%, 75%, 67% and 62% in patients aged rate, but not with higher willingness to receive incidental findings within the population who had agreed to participate. A large proportion of adult patients, even among the elderly, are willing to actively participate and receive incidental findings in this systematic hospital-based precision and genomic medicine research program with broad consent.
Oct 25, 2017 ... stigma and superstition are known to lead to frequent presentation .... The limited documented research on challenges to help-seeking behaviour for cancer ..... to touch your breast  that breast self-examination may cause.
Oct 2, 2015 ... thought to prevent infection, but recent research has proven otherwise. In addition ... One patient had ophthalmalgia and was exposed to. Kaiy for one year and ... migraine, ear infections, tuberculosis, bone fractures, epilepsy,.
Jul 12, 2016 ... multiple risk factors provides support for multiple-behavior interventions as ... consumption) with smoking therefore needs further research. As such this study .... restaurants, in bars, and on a statewide basis. They preferred to.
The mini-clinical-evaluation exercise (mini-CEX) is a way of assessing the clinical ... Ethical approval for this study was obtained from the Medical Health. Research ..... mini-CEX assessment and feedback session, the greater the likelihood of.
Apr 14, 2016 ... Qualitative data, content analysis approach was used. Results: Overall 422 .... Study design: A mixed method cross-sectional design using both quantitative and qualitative research methods as described by. Hanson et al  ...
Subjects covered in this section are: (1) PCAST panel promotes energy research cooperation; (2) Letter issued by ANS urges funding balance in FFTF restart consideration and (3) FESAC panel releases report on priorities and balance
Research. December 2017, Vol. 9, No. 4 AJHPE 171. During curriculum development, teachers ... Ideally, examiners need an educational method to determine ..... A major focus of this study was addressing the human resource gap when.
Treichler, Emily B H; Evans, Eric A; Johnson, J Rock; O'Hare, Mary; Spaulding, William D
Consumer involvement has gained greater prominence in serious mental illness (SMI) because of the harmonious forces of new research findings, psychiatric rehabilitation, and the recovery movement. Previously conceived subdomains of consumer involvement include physical involvement, social involvement, and psychological involvement. We posit a fourth subdomain, organizational involvement. We have operationally defined organizational involvement as the involvement of mental health consumers in activities and organizations that are relevant to the mental health aspect of their identities from an individual to a systemic level across arenas relevant to mental health. This study surveyed adults with SMI regarding their current level of organizational involvement along with their preferences and beliefs about organizational involvement. Additionally, a path model was conducted to understand the relationships between domains of consumer involvement. Although participants reported wanting to be involved in identified organizational involvement activities and believing it was important to be involved in these kinds of activities, organizational involvement was low overall. The path model indicated that psychological involvement among other factors influence organizational involvement, which informed our suggestions to improve organizational involvement among people with SMI. Successful implementation must be a thoroughly consumer-centered approach creating meaningful and accessible involvement opportunities. Our study and prior studies indicate that organizational involvement and other subdomains of consumer involvement are key to the health and wellbeing of consumers, and therefore greater priority should be given to interventions aimed at increasing these essential domains. (c) 2015 APA, all rights reserved).
Learmonth, Yvonne C; Motl, Robert W
Much research has been undertaken to establish the important benefits of physical activity in persons with multiple sclerosis (MS). There is disagreement regarding the strength of this research, perhaps because the majority of studies on physical activity and its benefits have not undergone initial and systematic feasibility testing. We aim to address the feasibility processes that have been examined within the context of physical activity interventions in MS. A systematic scoping review was conducted based on a literature search of five databases to identify feasibility processes described in preliminary studies of physical activity in MS. We read and extracted methodology from each study based on the following feasibility metrics: process (e.g. recruitment), resource (e.g. monetary costs), management (e.g. personnel time requirements) and scientific outcomes (e.g. clinical/participant reported outcome measures). We illustrate the use of the four feasibility metrics within a randomised controlled trial of a home-based exercise intervention in persons with MS. Twenty-five studies were identified. Resource feasibility (e.g. time and resources) and scientific outcomes feasibility (e.g. clinical outcomes) methodologies were applied and described in many studies; however, these metrics have not been systematically addressed. Metrics related to process feasibility (e.g. recruitment) and management feasibility (e.g. human and data management) are not well described within the literature. Our case study successfully enabled us to address the four feasibility metrics, and we provide new information on management feasibility (i.e. estimate data completeness and estimate data entry) and scientific outcomes feasibility (i.e. determining data collection materials appropriateness). Our review highlights the existing research and provides a case study which assesses important metrics of study feasibility. This review serves as a clarion call for feasibility trials that will
Brabers, A.E.M.; Rademakers, J.J.D.J.M.; Groenewegen, P.P.; Dijk, L. van; Jong, J.D. de
Patients vary in their preferences towards involvement in medical decision-making. Previous research, however, gives no clear explanation for this observed variation in their involvement. One possible explanation might be health literacy. Health literacy refers to personal characteristics and social
Smeltzer, Suzanne C; Sharts-Hopko, Nancy C; Cantrell, Mary Ann; Heverly, Mary Ann; Wise, Nancy; Jenkinson, Amanda
Support for research strongly predicts doctoral program faculty members' research productivity. Although academic administrators affect such support, their views of faculty members' use of support are unknown. We examined academic administrators' perceptions of institutional support and their perceptions of the effects of teaching doctoral students on faculty members' scholarship productivity and work-life balance. An online survey was completed by a random sample of 180 deans/directors of schools of nursing and doctoral programs directors. Data were analyzed with descriptive statistics, chi-square analysis, and analysis of variance. Deans and doctoral program directors viewed the level of productivity of program faculty as high to moderately high and unchanged since faculty started teaching doctoral students. Deans perceived better administrative research supports, productivity, and work-life balance of doctoral program faculty than did program directors. Findings indicate the need for greater administrative support for scholarship and mentoring given the changes in the composition of doctoral program faculty. Copyright © 2017 Elsevier Inc. All rights reserved.
Full Text Available Members of the genus Vibrio include many pathogens of humans and marine animals that share genetic information via horizontal gene transfer. Hence, the Vibrio pan-genome carries the potential to establish new pathogenic strains by sharing virulence determinants, many of which have yet to be characterized. Here, we investigated the virulence properties of Vibrio proteolyticus, a Gram-negative marine bacterium previously identified as part of the Vibrio consortium isolated from diseased corals. We found that V. proteolyticus causes actin cytoskeleton rearrangements followed by cell lysis in HeLa cells in a contact-independent manner. In search of the responsible virulence factor involved, we determined the V. proteolyticus secretome. This proteomics approach revealed various putative virulence factors, including active type VI secretion systems and effectors with virulence toxin domains; however, these type VI secretion systems were not responsible for the observed cytotoxic effects. Further examination of the V. proteolyticus secretome led us to hypothesize and subsequently demonstrate that a secreted hemolysin, belonging to a previously uncharacterized clan of the leukocidin superfamily, was the toxin responsible for the V. proteolyticus-mediated cytotoxicity in both HeLa cells and macrophages. Clearly, there remains an armory of yet-to-be-discovered virulence factors in the Vibrio pan-genome that will undoubtedly provide a wealth of knowledge on how a pathogen can manipulate host cells.
May 18, 2017 ... available to populations of developing countries [2-5]. In 2013, in. Western and Central Europe and ..... initiation among the infected persons in the community. Addressing stigma and educating ... Lifespan/Tufts/Brown Center for AIDS Research (P30AI042853). Tables. Table 1: Baseline characteristics of ...
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Mar 14, 2017 ... R Ebrahim,1 MSc (Dent); H Julie,2 MPH, MCur, PhD. 1 Extended ... and research is applied to develop and sustain society.. Methods .... service they want, not the service we want to give whether they want it or. Co math. G.
Nov 24, 2017 ... Page number not for citation purposes. 1. Prevalence and determinants of common mental ..... illnesses were smoke cigarette in the last 3 months that make prevalence of tobacco use 38.2%. ..... Okasha A, Karam E.Mental health services and research in the. Arab world. Acta Psychiatrica Scandinavica.
Apr 21, 2014 ... Prospective assessment of the risk of obstructive sleep apnea in ... Faculty of Clinical Sciences, College of Medicine, University of .... University Teaching Hospital Health Research Ethics Committee ... BANG, Berlin questionnaire and the American Society of .... The epidemiology of adult obstructive sleep.
Research. May 2016, Vol. 8, No. 1 AJHPE 37. Students who enrol in occupational therapy (OT) at the. University of Kwa Zulu-Natal (UKZN), Durban, South Africa ... The latter may include becoming familiar with the disintegrating social systems in primary .... They also lacked the skills needed to adapt sessions and failed to ...
Jun 22, 2015 ... collaboration with Makerere University, School of Public Health. We acknowledge The Family Health Research and Development Centre. (FHRDC) Uganda. Supported by Bill & Melinda Gates Institute for. Population & Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, ...
However, a focus on competence alone is inadequate to produce graduates who are capable of adapting to the changing needs of health systems. While knowledge and technical ... shared their responses to guided questions. There were three sessions; after each session the researcher aggregated participant responses ...
Jan 31, 2014 ... by Hazarika in a population-based study in India. The researcher noted that patients' preference to the private health facilities was due mainly to their dissatisfaction with the services in the public health facilities . Furthermore, the quality of the services in the private health facilities could also be a major ...
Mar 20, 2018 ... student health professionals in various institutions, both in South Africa. (SA) and internationally. ... field include dentists, dental therapists and oral hygienists in training, .... The College of Health Sciences at UKZN has four schools: clinical ..... Journal of Emerging Trends in Educational Research and Policy ...
Sep 14, 2017 ... Abstract. Introduction: Medical and dental students are a high-risk group for hepatitis B virus (HBV) infection which is an ... The Pan African Medical Journal - ISSN 1937-8688. ... Research ... in the College of Health Sciences and clinical students (years four to .... Hepatology International.2017 Jan; 11(1):.
Jan 19, 2015 ... One research assistant was available to assist the learners and to answer questions while they completed the questionnaires during a classroom period. ..... PubMed | Google Scholar. 4. Hall PA, Holmqvist M, Sherry SB. Risky adolescent sexual behaviour: A psychological perspective for primary care.
López-Fernández, Hugo; Araújo, José E; Jorge, Susana; Glez-Peña, Daniel; Reboiro-Jato, Miguel; Santos, Hugo M; Fdez-Riverola, Florentino; Capelo, José L
2D-gel electrophoresis is widely used in combination with MALDI-TOF mass spectrometry in order to analyze the proteome of biological samples. For instance, it can be used to discover proteins that are differentially expressed between two groups (e.g. two disease conditions, case vs. control, etc.) thus obtaining a set of potential biomarkers. This procedure requires a great deal of data processing in order to prepare data for analysis or to merge and integrate data from different sources. This kind of work is usually done manually (e.g. copying and pasting data into spreadsheet files), which is highly time consuming and distracts the researcher from other important, core tasks. Moreover, engaging in a repetitive process in a non-automated, handling-based manner is prone to error, thus threatening reliability and reproducibility. The objective of this paper is to present S2P, an open source software to overcome these drawbacks. S2P is implemented in Java on top of the AIBench framework, and relies on well-established open source libraries to accomplish different tasks. S2P is an AIBench based desktop multiplatform application, specifically aimed to process 2D-gel and MALDI-mass spectrometry protein identification-based data in a computer-aided, reproducible manner. Different case studies are presented in order to show the usefulness of S2P. S2P is open source and free to all users at http://www.sing-group.org/s2p. Through its user-friendly GUI interface, S2P dramatically reduces the time that researchers need to invest in order to prepare data for analysis. Copyright © 2017 Elsevier B.V. All rights reserved.
R. Sh. Saitgareev
Full Text Available Heart Transplantation (HTx to date remains the most effective and radical method of treatment of patients with end-stage heart failure. The defi cit of donor hearts is forcing to resort increasingly to the use of different longterm mechanical circulatory support systems, including as a «bridge» to the follow-up HTx. According to the ISHLT Registry the number of recipients underwent cardiopulmonary bypass surgery increased from 40% in the period from 2004 to 2008 to 49.6% for the period from 2009 to 2015. HTx performed in repeated patients, on the one hand, involves considerable technical diffi culties and high risks; on the other hand, there is often no alternative medical intervention to HTx, and if not dictated by absolute contradictions the denial of the surgery is equivalent to 100% mortality. This review summarizes the results of a number of published studies aimed at understanding the immediate and late results of HTx in patients, previously underwent open heart surgery. The effect of resternotomy during HTx and that of the specifi c features associated with its implementation in recipients previously operated on open heart, and its effects on the immediate and long-term survival were considered in this review. Results of studies analyzing the risk factors for perioperative complications in repeated recipients were also demonstrated. Separately, HTx risks after implantation of prolonged mechanical circulatory support systems were examined. The literature does not allow to clearly defi ning the impact factor of earlier performed open heart surgery on the course of perioperative period and on the prognosis of survival in recipients who underwent HTx. On the other hand, subject to the regular fl ow of HTx and the perioperative period the risks in this clinical situation are justifi ed as a long-term prognosis of recipients previously conducted open heart surgery and are comparable to those of patients who underwent primary HTx. Studies
Leading survey and research report for fiscal 1999. New technology based on functions involved in intracellular protein transport; 1999 nendo saibonai tanpakushitsu yuso kino riyo gijutsu kenkyu hokokusho
An intercellular transport technology (artificial manipulation of an intracellular protein transport system in eucaryotes) is studied for the accumulation of cytotoxic proteins, whose expression has so far been difficult, and activated proteins, which have avoided decomposition, in appropriate intracellular minute organs. The aim is to construct a system to allow foreign proteins high in productivity and quality to express themselves for production in eucaryotes. Basic surveys were conducted of the intracellular biological functions of single-membrane organelles (endoplasmic reticulum, peroxisome, vacuole/lysosome, and Golgi body), the molecular mechanism of protein transport to each organelle, and protein activation and quality control, and element technologies were extracted. For the development of novel pharmaceuticals making use of the intracellular protein transport technology, an activated protein production system was built and a search was made for transport activity impeding substances. Research tasks relative to the development of the new technologies were isolated, such as the visualization of intercellular transport. A survey was made of the market for pharmaceuticals, cosmetics, enzymes, and visualizing equipment (fluorescence microscope provided with new functions), etc. (NEDO)
Janssen, Anna; Shaw, Tim; Nagrial, Adnan; Pene, Christopher; Rabbets, Melanie; Carlino, Matteo; Zachulski, Clare; Phillips, Jane; Birnbaum, Robert; Gandhi, Tejal; Harnett, Paul
Improving patient care for individuals with lung cancer is a priority due to the increasing burden of the disease globally. One way this can be done is by improving patient self-management capabilities through increasing their self-efficacy. This can improve positive outcomes for patients with chronic conditions and increase their ability to manage the challenges of such illnesses. Unfortunately, patients with chronic conditions often struggle to travel far from home to engage with patient education events, a common means of improving self-efficacy. The development of more accessible tools for improving patient self-efficacy is required to increase quality of life for patients with chronic conditions. To evaluate the feasibility of delivering symptom identification and management information to patients with advanced lung cancer using an online program. This article describes a pre-post test study to evaluate a Qstream online learning platform to improve patient self-efficacy for managing advanced lung cancer symptoms. Undertaking this program should increase participant knowledge about the side-effects they may experience as a result of their treatment and in turn increase help-seeking behavior and self-efficacy for the participant cohort. Quantitative data collected by the Qstream platform on the completion rates of participants will be used as a tool to evaluate the intervention. Additionally, validated scales will be used to collect data on patient self-efficacy. Qualitative data will also be collected via an exit survey and thematic content analysis of semi-structured interviews. The research is in the preliminary stages but thus far a protocol has been approved in support of the project. Additionally, advisory committee members have been identified and initial meetings have been undertaken. Development of new approaches for increasing patient understanding of their care is important to ensure high quality care continues to be delivered in the clinical setting.
Jesús M. Ibáñez
Full Text Available The TOMO-ETNA experiment was devised to image of the crust underlying the volcanic edifice and, possibly, its plumbing system by using passive and active refraction/reflection seismic methods. This experiment included activities both on-land and offshore with the main objective of obtaining a new high-resolution seismic tomography to improve the knowledge of the crustal structures existing beneath the Etna volcano and northeast Sicily up to Aeolian Islands. The TOMO ETNA experiment was divided in two phases. The first phase started on June 15, 2014 and finalized on July 24, 2014, with the withdrawal of two removable seismic networks (a Short Period Network and a Broadband network composed by 80 and 20 stations respectively deployed at Etna volcano and surrounding areas. During this first phase the oceanographic research vessel “Sarmiento de Gamboa” and the hydro-oceanographic vessel “Galatea” performed the offshore activities, which includes the deployment of ocean bottom seismometers (OBS, air-gun shooting for Wide Angle Seismic refraction (WAS, Multi-Channel Seismic (MCS reflection surveys, magnetic surveys and ROV (Remotely Operated Vehicle dives. This phase finished with the recovery of the short period seismic network. In the second phase the Broadband seismic network remained operative until October 28, 2014, and the R/V “Aegaeo” performed additional MCS surveys during November 19-27, 2014. Overall, the information deriving from TOMO-ETNA experiment could provide the answer to many uncertainties that have arisen while exploiting the large amount of data provided by the cutting-edge monitoring systems of Etna volcano and seismogenic area of eastern Sicily.
Biss, Renée K; Campbell, Karen L; Hasher, Lynn
Previously relevant information can disrupt the ability of older adults to remember new information. Here, the researchers examined whether prior irrelevant information, or distraction, can also interfere with older adults' memory for new information. Younger and older adults first completed a 1-back task on pictures that were superimposed with distracting words. After a delay, participants learned picture-word paired associates and memory was tested using picture-cued recall. In 1 condition (high interference), some pairs included pictures from the 1-back task now paired with new words. In a low-interference condition, the transfer list used all new items. Older adults had substantially lower cued-recall performance in the high- compared with the low-interference condition. In contrast, younger adults' performance did not vary across conditions. These findings suggest that even never-relevant information from the past can disrupt older adults' memory for new associations.
Goodwin, Sarah Christine
This research study examined the correlation between student achievement and parent's perceptions of their involvement in their child's schooling. Parent participants completed the Parent Involvement Project Parent Questionnaire. Results slightly indicated parents of students with higher level of achievement perceived less demand or invitations…
Full Text Available One-third of the 4,225 protein-coding genes of Escherichia coli K-12 remain functionally unannotated (orphans. Many map to distant clades such as Archaea, suggesting involvement in basic prokaryotic traits, whereas others appear restricted to E. coli, including pathogenic strains. To elucidate the orphans' biological roles, we performed an extensive proteomic survey using affinity-tagged E. coli strains and generated comprehensive genomic context inferences to derive a high-confidence compendium for virtually the entire proteome consisting of 5,993 putative physical interactions and 74,776 putative functional associations, most of which are novel. Clustering of the respective probabilistic networks revealed putative orphan membership in discrete multiprotein complexes and functional modules together with annotated gene products, whereas a machine-learning strategy based on network integration implicated the orphans in specific biological processes. We provide additional experimental evidence supporting orphan participation in protein synthesis, amino acid metabolism, biofilm formation, motility, and assembly of the bacterial cell envelope. This resource provides a "systems-wide" functional blueprint of a model microbe, with insights into the biological and evolutionary significance of previously uncharacterized proteins.
Hu, Pingzhao; Janga, Sarath Chandra; Babu, Mohan; Díaz-Mejía, J Javier; Butland, Gareth; Yang, Wenhong; Pogoutse, Oxana; Guo, Xinghua; Phanse, Sadhna; Wong, Peter; Chandran, Shamanta; Christopoulos, Constantine; Nazarians-Armavil, Anaies; Nasseri, Negin Karimi; Musso, Gabriel; Ali, Mehrab; Nazemof, Nazila; Eroukova, Veronika; Golshani, Ashkan; Paccanaro, Alberto; Greenblatt, Jack F; Moreno-Hagelsieb, Gabriel; Emili, Andrew
One-third of the 4,225 protein-coding genes of Escherichia coli K-12 remain functionally unannotated (orphans). Many map to distant clades such as Archaea, suggesting involvement in basic prokaryotic traits, whereas others appear restricted to E. coli, including pathogenic strains. To elucidate the orphans' biological roles, we performed an extensive proteomic survey using affinity-tagged E. coli strains and generated comprehensive genomic context inferences to derive a high-confidence compendium for virtually the entire proteome consisting of 5,993 putative physical interactions and 74,776 putative functional associations, most of which are novel. Clustering of the respective probabilistic networks revealed putative orphan membership in discrete multiprotein complexes and functional modules together with annotated gene products, whereas a machine-learning strategy based on network integration implicated the orphans in specific biological processes. We provide additional experimental evidence supporting orphan participation in protein synthesis, amino acid metabolism, biofilm formation, motility, and assembly of the bacterial cell envelope. This resource provides a "systems-wide" functional blueprint of a model microbe, with insights into the biological and evolutionary significance of previously uncharacterized proteins.
Ishikawa, Tetsuo; Tokonami, Shinji; Yasuoka, Yumi; Shinogi, Masaki; Nagahama, Hiroyuki; Omori, Yasutaka; Kawada, Yusuke
The relationship between radon anomalies and earthquakes has been studied for more than 30 years. However, most of the studies dealt with radon in soil gas or in groundwater. Before the 1995 Hyogoken-Nanbu earthquake, an anomalous increase of atmospheric radon was observed at Kobe Pharmaceutical University. The increase was well fitted with a mathematical model related to earthquake fault dynamics. This paper reports the significance of this observation, reviewing previous studies on radon anomaly before earthquakes. Groundwater/soil radon measurements for earthquake prediction began in 1970's in Japan as well as foreign countries. One of the most famous studies in Japan is groundwater radon anomaly before the 1978 Izu-Oshima-kinkai earthquake. We have recognized the significance of radon in earthquake prediction research, but recently its limitation was also pointed out. Some researchers are looking for a better indicator for precursors; simultaneous measurements of radon and other gases are new trials in recent studies. Contrary to soil/groundwater radon, we have not paid much attention to atmospheric radon before earthquakes. However, it might be possible to detect precursors in atmospheric radon before a large earthquake. In the next issues, we will discuss the details of the anomalous atmospheric radon data observed before the Hyogoken-Nanbu earthquake. (author)
Helen, Onakpoya Oluwatoyin; Ajite, K. O.; Oyelami, O. A.; Asaleye, C. M.; Adeoye, A. O.
Bone infarction involving the orbit in sickle cell disease is not common. Bilateral orbital infarction in a previously undiagnosed sickle cell hemoglobinopathy has not been previously reported. In this report, we present a case of an 11-year-old previously undiagnosed sickle cell disease Nigerian girl with severe acute bilateral orbital infarction and retinal detachment to highlight that hemoglobinopathy induced orbital infarction should be considered in African children with acute onset proptosis with or without previous history of sickle cell hemoglobinopathy. PMID:23901183
Full Text Available A large body of literature claims that corporate sustainable development is a cross-functional challenge, which requires all functional units to be involved. However, it remains uncertain to what extent and in which way different corporate functions are actually involved in corporate sustainability management. To bridge this research gap, our paper draws on a concept of involvement introduced in the field of consumer behavior. Based on this previous research, our paper distinguishes two components of involvement: first, a cognitive-affective component, incorporating being affected by sustainability issues and being supportive of corporate sustainability; and second, a behavioral component, represented by the application of sustainability management tools. We use this concept to empirically analyze the involvement of corporate functions in sustainability management and find considerable differences in large German companies. Whereas public relations and strategic management are heavily involved, finance, accounting and management control appear not to be involved. A multinomial logistic regression shows that the cognitive-affective component significantly influences the behavioral component, with a functional unit being affected influencing the application of tools the most. Building on the model proposed, the paper provides implications on how to increase a functional unit’s involvement in sustainability management.
Bradford, Scott A.; Harvey, Ronald W.
Contamination of groundwater by enteric pathogens has commonly been associated with disease outbreaks. Proper management and treatment of pathogen sources are important prerequisites for preventing groundwater contamination. However, non-point sources of pathogen contamination are frequently difficult to identify, and existing approaches for pathogen detection are costly and only provide semi-quantitative information. Microbial indicators that are readily quantified often do not correlate with the presence of pathogens. Pathogens of emerging concern and increasing detections of antibiotic resistance among bacterial pathogens in groundwater are topics of growing concern. Adequate removal of pathogens during soil passage is therefore critical for safe groundwater extraction. Processes that enhance pathogen transport (e.g., high velocity zones and preferential flow) and diminish pathogen removal (e.g., reversible retention and enhanced survival) are of special concern because they increase the risk of groundwater contamination, but are still incompletely understood. Improved theory and modeling tools are needed to analyze experimental data, test hypotheses, understand coupled processes and controlling mechanisms, predict spatial and/or temporal variability in model parameters and uncertainty in pathogen concentrations, assess risk, and develop mitigation and best management approaches to protect groundwater.
Bradford, Scott A.; Harvey, Ronald W.
Contamination of groundwater by enteric pathogens has commonly been associated with disease outbreaks. Proper management and treatment of pathogen sources are important prerequisites for preventing groundwater contamination. However, non-point sources of pathogen contamination are frequently difficult to identify, and existing approaches for pathogen detection are costly and only provide semi-quantitative information. Microbial indicators that are readily quantified often do not correlate with the presence of pathogens. Pathogens of emerging concern and increasing detections of antibiotic resistance among bacterial pathogens in groundwater are topics of growing concern. Adequate removal of pathogens during soil passage is therefore critical for safe groundwater extraction. Processes that enhance pathogen transport (e.g., high velocity zones and preferential flow) and diminish pathogen removal (e.g., reversible retention and enhanced survival) are of special concern because they increase the risk of groundwater contamination, but are still incompletely understood. Improved theory and modeling tools are needed to analyze experimental data, test hypotheses, understand coupled processes and controlling mechanisms, predict spatial and/or temporal variability in model parameters and uncertainty in pathogen concentrations, assess risk, and develop mitigation and best management approaches to protect groundwater.
Santucci, Richard; Eisenberg, Lauren
We evaluated the success rate of direct vision internal urethrotomy as a treatment for simple male urethral strictures. A retrospective chart review was performed on 136 patients who underwent urethrotomy from January 1994 through March 2009. The Kaplan-Meier method was used to analyze stricture-free probability after the first, second, third, fourth and fifth urethrotomy. Patients with complex strictures (36) were excluded from the study for reasons including previous urethroplasty, neophallus or previous radiation, and 24 patients were lost to followup. Data were available for 76 patients. The stricture-free rate after the first urethrotomy was 8% with a median time to recurrence of 7 months. For the second urethrotomy stricture-free rate was 6% with a median time to recurrence of 9 months. For the third urethrotomy stricture-free rate was 9% with a median time to recurrence of 3 months. For procedures 4 and 5 stricture-free rate was 0% with a median time to recurrence of 20 and 8 months, respectively. Urethrotomy is a popular treatment for male urethral strictures. However, the performance characteristics are poor. Success rates were no higher than 9% in this series for first or subsequent urethrotomy during the observation period. Most of the patients in this series will be expected to experience failure with longer followup and the expected long-term success rate from any (1 through 5) urethrotomy approach is 0%. Urethrotomy should be considered a temporizing measure until definitive curative reconstruction can be planned. 2010 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.
Gächter, Simon; Herrmann, Benedikt
Understanding the proximate and ultimate sources of human cooperation is a fundamental issue in all behavioural sciences. In this paper, we review the experimental evidence on how people solve cooperation problems. Existing studies show without doubt that direct and indirect reciprocity are important determinants of successful cooperation. We also discuss the insights from a large literature on the role of peer punishment in sustaining cooperation. The experiments demonstrate that many people are 'strong reciprocators' who are willing to cooperate and punish others even if there are no gains from future cooperation or any other reputational gains. We document this in new one-shot experiments, which we conducted in four cities in Russia and Switzerland. Our cross-cultural approach allows us furthermore to investigate how the cultural background influences strong reciprocity. Our results show that culture has a strong influence on positive and in especially strong negative reciprocity. In particular, we find large cross-cultural differences in 'antisocial punishment' of pro-social cooperators. Further cross-cultural research and experiments involving different socio-demographic groups document that the antisocial punishment is much more widespread than previously assumed. Understanding antisocial punishment is an important task for future research because antisocial punishment is a strong inhibitor of cooperation.
Fatores de exposição, experiência no trânsito e envolvimentos anteriores em acidentes de trânsito entre estudantes universitários de cursos na área da saúde, Ponta Grossa, PR, Brasil Factors of exposure, experience in the traffic and previous involvements in traffic accidents among college students of health courses, Ponta Grossa, PR, Brazil
Valéria Beatris Labiak
demographic profile, besides characterizing the exposure and antecedents in traffic accidents, of college students of Health courses of the State University of Ponta Grossa - PR, in 2005. A questionnaire, answered by the students anonymously, was used, whose sample included 624 academics. The studied variables were: demographic and socioeconomic characteristics, exposure factors and experience in the traffic, use of the seat belt and antecedents in traffic accidents. The students' profile was characterized as follows: the majority is of the female sex (66.67%, with ages ranging between 18 and 23 years, living with the family and with income equal to or below 10 minimum wages. In relation to the age they learned how to drive, the largest frequency in the masculine sex was between 15 and 17 years and in the feminine sex, 18 years or above. A significant number of subjects, from both sexes, reported having learned to drive when they were less than 14 years of age. The association between the use of the belt and the place occupied in the car (driver, passenger of the front seat and passenger of the back seat, according to the sex, revealed that the use of the device does not depend on the sex. The association between involvement in traffic accidents and sex indicated a predisposition in the masculine sex.
... 22 Foreign Relations 1 2010-04-01 2010-04-01 false Certain aliens previously removed. 40.91... IMMIGRANTS UNDER THE IMMIGRATION AND NATIONALITY ACT, AS AMENDED Aliens Previously Removed § 40.91 Certain aliens previously removed. (a) 5-year bar. An alien who has been found inadmissible, whether as a result...
Paglieroni, David W.; Beer, N Reginald
A system that applies attribute and topology based change detection to networks of objects that were detected on previous scans of a structure, roadway, or area of interest. The attributes capture properties or characteristics of the previously detected objects, such as location, time of detection, size, elongation, orientation, etc. The topology of the network of previously detected objects is maintained in a constellation database that stores attributes of previously detected objects and implicitly captures the geometrical structure of the network. A change detection system detects change by comparing the attributes and topology of new objects detected on the latest scan to the constellation database of previously detected objects.
Full Text Available Previous research suggests that action language is comprehended by activating the motor system. We report a study, investigating a critical question in this research field: Do negative sentences activate the motor system? Participants were exposed to sentences in the affirmation and negation forms while the zygomatic muscle activity on the left side of the face was continuously measured (Electromyography technique: EMG. Sentences were descriptions of emotional expressions that mapped either directly upon the zygomatic muscle (e.g., ‘I am smiling’ or did not (e.g., ‘I am frowning’. Reading sentences involving the negation of the activity of a specific muscle (zygomatic major - I am not smiling is shown to lead to the inhibition of this muscle. Reading sentences involving the affirmative form instead (I am smiling leads to the activation of zygomatic mucle. In contrast, sentences describing an activity that is irrelevant to the zygomatic muscle (e.g., ‘I am frowning’ or ‘I am not frowning’ produce no muscle activity. These results extend the range of simulation models to negation and by implication to an abstract domain. We discuss how this research contributes to the grounding of abstract and concrete concepts.
Development of a Decision Aid for Cardiopulmonary Resuscitation Involving Intensive Care Unit Patients' and Health Professionals' Participation Using User-Centered Design and a Wiki Platform for Rapid Prototyping: A Research Protocol
Heyland, Daren Keith; Ebell, Mark H; Dupuis, Audrey; Lavoie-Bérard, Carole-Anne; Légaré, France; Archambault, Patrick Michel
Background Cardiopulmonary resuscitation (CPR) is an intervention used in cases of cardiac arrest to revive patients whose heart has stopped. Because cardiac arrest can have potentially devastating outcomes such as severe neurological deficits even if CPR is performed, patients must be involved in determining in advance if they want CPR in the case of an unexpected arrest. Shared decision making (SDM) facilitates discussions about goals of care regarding CPR in intensive care units (ICUs). Patient decision aids (DAs) are proven to support the implementation of SDM. Many patient DAs about CPR exist, but they are not universally implemented in ICUs in part due to lack of context and cultural adaptation. Adaptation to local context is an important phase of implementing any type of knowledge tool such as patient DAs. User-centered design supported by a wiki platform to perform rapid prototyping has previously been successful in creating knowledge tools adapted to the needs of patients and health professionals (eg, asthma action plans). This project aims to explore how user-centered design and a wiki platform can support the adaptation of an existing DA for CPR to the local context. Objective The primary objective is to use an existing DA about CPR to create a wiki-based DA that is adapted to the context of a single ICU and tailorable to individual patient’s risk factors while employing user-centered design. The secondary objective is to document the use of a wiki platform for the adaptation of patient DAs. Methods This study will be conducted in a mixed surgical and medical ICU at Hôtel-Dieu de Lévis, Quebec, Canada. We plan to involve all 5 intensivists and recruit at least 20 alert and oriented patients admitted to the ICU and their family members if available. In the first phase of this study, we will observe 3 weeks of daily interactions between patients, families, intensivists, and other allied health professionals. We will specifically observe 5 dyads of
Ciesielska, Malgorzata; Westenholz, Ann
to free-riding. There are six levels of commercial involvement in open source communities, and each of them is characterized by a different dilemma. Originality/value – The paper sheds light on the various level of involvement of business in open source movement and emphasize that the popularized “open......Purpose – The purpose of this paper is to contribute to the literature about the commercial involvement in open source software, levels of this involvement and consequences of attempting to mix various logics of action. Design/methodology/approach – This paper uses the case study approach based...... on mixed methods: literature reviews and news searches, electronic surveys, qualitative interviews and observations. It combines discussions from several research projects as well as previous publications to present the scope of commercial choices within open source software and their consequences...
McNutt, M. K.
The responsible conduct of research requires that all involved in the research enterprise - researchers, sponsors, reviewers, publishers, and communicators - adhere to a set of integrity principles to protect the public's investment. Given the increasing complexity and globalization of the research enterprise, the National Academies recently re-examined and updated its integrity recommendations for researchers in the report Fostering Integrity in Research, with sponsorship from the National Science Foundation. Major departures from the previous recommendations 25-years earlier are the recognition that practices that were previously classified as merely questionable are indeed detrimental to the responsible conduct of research. Furthermore, the report concludes that there has been insufficient effort to respond to the threats that lapses in research integrity pose to the quality of research products and the reputation of researchers as deserving of the public trust. It recommends the creation of an independent, non-profit entity dedicated to promoting research integrity by serving as a resource and clearing house for expertise, advice, materials, and best practices on fostering research integrity and responding to allegations of research misconduct.
Megan M Langille
Full Text Available We describe a case of pediatric neuromyelitis optica (NMO with muscle and lung involvement in addition to central nervous system disease. Our patient initially presented with features of area postrema syndrome, then subsequently with optic neuritis. The patient also had recurrent hyperCKemia that responded to corticosteroids. Finally, axillary and hilar adenopathy with pulmonary consolidation were noted as well and responded to immunomodulation. Our case highlights multisystem involvement in NMO including non-infectious pulmonary findings which have not been described in the pediatric population previously.
This document presents aggregate statistics on trucks involved in traffic accidents in 2008. The : statistics are derived from the Trucks Involved in Fatal Accidents (TIFA) file, compiled by the : University of Michigan Transportation Research Instit...
This document presents aggregate statistics on buses involved in traffic accidents in 2007. The : statistics are derived from the Buses Involved in Fatal Accidents (BIFA) file, compiled by the : University of Michigan Transportation Research Institut...
This document presents aggregate statistics on trucks involved in traffic accidents in 2007. The : statistics are derived from the Trucks Involved in Fatal Accidents (TIFA) file, compiled by the : University of Michigan Transportation Research Instit...
Hansen, Jeppe Oute; Petersen, Anders; Huniche, Lotte
This article gives an account of aspects of a multi-sited field study of involvement of relatives in Danish psychiatry. By following metaphors of involvement across three sites of the psychiatric systema family site, a clinical site and a policy sitethe first author (J.O.) investigated how...... theoretical perspective laid out by Ernesto Laclau and Chantal Mouffe, the aim of this study is to show how the dominant discourse about involvement at the political and clinical sites is constituted by understandings of mentally ill individuals and by political objectives of involvement. The analysis...... the responsibility toward the mental health of the ill individual as well as toward the psychological milieu of the family....
Safety and immunogenicity of 2010-2011 H1N12009-containing trivalent inactivated influenza vaccine in children 12-59 months of age previously given AS03-adjuvanted H1N12009 pandemic vaccine: a PHAC/CIHR Influenza Research Network (PCIRN) study.
Langley, Joanne M; Scheifele, David W; Quach, Caroline; Vanderkooi, Otto G; Ward, Brian; McNeil, Shelly; Dobson, Simon; Kellner, James D; Kuhn, Susan; Kollman, Tobias; MacKinnon-Cameron, Donna; Smith, Bruce; Li, Yan; Halperin, Scott A
Concern arose in 2010 that reactogenicity, particularly febrile seizures, to influenza A/H1N1-containing 2010-2011 trivalent seasonal inactivated influenza vaccine (TIV) could occur in young children who had been previously immunized and/or infected with the pandemic strain. We conducted a pre-season study of 2010-2011 TIV safety and immunogenicity in children 12-59 months of age to inform public health decision making. Children immunized with 1 or 2 doses of the pandemic vaccine, with or without the 2009-10 TIV, received 1 or 2 doses of 2010-11 TIV in an observational, multicentre Canadian study. Standard safety monitoring was enhanced by a telephone call at ~24 h post-TIV when adverse events were expected to peak. Summary safety reports were rapidly reported to public health before the launch of public programs. TIV immunogenicity was assessed day 0, and 21 days after final vaccination. Clinical Trials Registration NCT01180621. Among 207 children, a general adverse event was reported by 60.9% of children post-dose one and by 58.3% post-dose two. Only severe fever (>38.5°C) was more common in two-dose compared to one dose recipients (16.7%, n=4 v. 1.0%, n=2). At baseline 99.0% of participants had A/H1N1 hemagglutinin inhibition (HAI) titers ≥10, and 85.5% had a protective titer of ≥40 (95% CI 80.0, 90.0). Baseline geometric mean titers (GMT) were higher in recipients of a 2-dose schedule of pandemic vaccine compared to one-dose recipients: 153.1 (95% CI 126.2, 185.7) v. 78.8 ((58.1, 106.8, pvaccine immunogenicity were exceeded for A/H1N1 and H3N2, but responses to the B antigen were poor. No correlations between reactogenicity and either baseline high influenza titers or serologic response to revaccination were evident. Infants and toddlers who received AS03-adjuvanted A/H1N1 2009 vaccine up to 11 months earlier retained high titers in the subsequent season but re-exposure to A/H1N1 2009 antigen in TIV resulted in no unusual adverse effects and 100% were sero
... 49 Transportation 2 2010-10-01 2010-10-01 false Previously authorized packaging. 173.23 Section... REQUIREMENTS FOR SHIPMENTS AND PACKAGINGS Preparation of Hazardous Materials for Transportation § 173.23 Previously authorized packaging. (a) When the regulations specify a packaging with a specification marking...
... 28 Judicial Administration 1 2010-07-01 2010-07-01 false Incorporation of papers previously filed... CARRYING ON ACTIVITIES WITHIN THE UNITED STATES Registration Statement § 10.5 Incorporation of papers previously filed. Papers and documents already filed with the Attorney General pursuant to the said act and...
... SECURITIES AND EXCHANGE COMMISSION Sunshine Act Meeting FEDERAL REGISTER CITATION OF PREVIOUS ANNOUNCEMENT: STATUS: Closed meeting. PLACE: 100 F Street, NE., Washington, DC. DATE AND TIME OF PREVIOUSLY ANNOUNCED MEETING: Thursday, December 9, 2010 at 2 p.m. CHANGE IN THE MEETING: Time change. The closed...
Fromhage, Lutz; Schneider, Jutta M.
In several animal species, females discriminate against previous mates in subsequent mating decisions, increasing the potential for multiple paternity. In spiders, female choice may take the form of selective sexual cannibalism, which has been shown to bias paternity in favor of particular males. If cannibalistic attacks function to restrict a male's paternity, females may have little interest to remate with males having survived such an attack. We therefore studied the possibility of female discrimination against previous mates in sexually cannibalistic Argiope bruennichi, where females almost always attack their mate at the onset of copulation. We compared mating latency and copulation duration of males having experienced a previous copulation either with the same or with a different female, but found no evidence for discrimination against previous mates. However, males copulated significantly shorter when inserting into a used, compared to a previously unused, genital pore of the female.
Persichetti, Paolo; Cagli, Barbara; Simone, Pierfranco; Cogliandro, Annalisa; Fortunato, Lucio; Altomare, Vittorio; Trodella, Lucio
The most common surgical approach in case of local tumor recurrence after quadrantectomy and radiotherapy is salvage mastectomy. Breast reconstruction is the subsequent phase of the treatment and the plastic surgeon has to operate on previously irradiated and manipulated tissues. The medical literature highlights that breast reconstruction with tissue expanders is not a pursuable option, considering previous radiotherapy a contraindication. The purpose of this retrospective study is to evaluate the influence of previous radiotherapy on 2-stage breast reconstruction (tissue expander/implant). Only patients with analogous timing of radiation therapy and the same demolitive and reconstructive procedures were recruited. The results of this study prove that, after salvage mastectomy in previously irradiated patients, implant reconstruction is still possible. Further comparative studies are, of course, advisable to draw any conclusion on the possibility to perform implant reconstruction in previously irradiated patients.
Multi-tissue RNA-seq and transcriptome characterisation of the spiny dogfish shark (Squalus acanthias provides a molecular tool for biological research and reveals new genes involved in osmoregulation.
Full Text Available The spiny dogfish shark (Squalus acanthias is one of the most commonly used cartilaginous fishes in biological research, especially in the fields of nitrogen metabolism, ion transporters and osmoregulation. Nonetheless, transcriptomic data for this organism is scarce. In the present study, a multi-tissue RNA-seq experiment and de novo transcriptome assembly was performed in four different spiny dogfish tissues (brain, liver, kidney and ovary, providing an annotated sequence resource. The characterization of the transcriptome greatly increases the scarce sequence information for shark species. Reads were assembled with the Trinity de novo assembler both within each tissue and across all tissues combined resulting in 362,690 transcripts in the combined assembly which represent 289,515 Trinity genes. BUSCO analysis determined a level of 87% completeness for the combined transcriptome. In total, 123,110 proteins were predicted of which 78,679 and 83,164 had significant hits against the SwissProt and Uniref90 protein databases, respectively. Additionally, 61,215 proteins aligned to known protein domains, 7,208 carried a signal peptide and 15,971 possessed at least one transmembrane region. Based on the annotation, 81,582 transcripts were assigned to gene ontology terms and 42,078 belong to known clusters of orthologous groups (eggNOG. To demonstrate the value of our molecular resource, we show that the improved transcriptome data enhances the current possibilities of osmoregulation research in spiny dogfish by utilizing the novel gene and protein annotations to investigate a set of genes involved in urea synthesis and urea, ammonia and water transport, all of them crucial in osmoregulation. We describe the presence of different gene copies and isoforms of key enzymes involved in this process, including arginases and transporters of urea and ammonia, for which sequence information is currently absent in the databases for this model species. The
Multi-tissue RNA-seq and transcriptome characterisation of the spiny dogfish shark (Squalus acanthias) provides a molecular tool for biological research and reveals new genes involved in osmoregulation.
Chana-Munoz, Andres; Jendroszek, Agnieszka; Sønnichsen, Malene; Kristiansen, Rune; Jensen, Jan K; Andreasen, Peter A; Bendixen, Christian; Panitz, Frank
The spiny dogfish shark (Squalus acanthias) is one of the most commonly used cartilaginous fishes in biological research, especially in the fields of nitrogen metabolism, ion transporters and osmoregulation. Nonetheless, transcriptomic data for this organism is scarce. In the present study, a multi-tissue RNA-seq experiment and de novo transcriptome assembly was performed in four different spiny dogfish tissues (brain, liver, kidney and ovary), providing an annotated sequence resource. The characterization of the transcriptome greatly increases the scarce sequence information for shark species. Reads were assembled with the Trinity de novo assembler both within each tissue and across all tissues combined resulting in 362,690 transcripts in the combined assembly which represent 289,515 Trinity genes. BUSCO analysis determined a level of 87% completeness for the combined transcriptome. In total, 123,110 proteins were predicted of which 78,679 and 83,164 had significant hits against the SwissProt and Uniref90 protein databases, respectively. Additionally, 61,215 proteins aligned to known protein domains, 7,208 carried a signal peptide and 15,971 possessed at least one transmembrane region. Based on the annotation, 81,582 transcripts were assigned to gene ontology terms and 42,078 belong to known clusters of orthologous groups (eggNOG). To demonstrate the value of our molecular resource, we show that the improved transcriptome data enhances the current possibilities of osmoregulation research in spiny dogfish by utilizing the novel gene and protein annotations to investigate a set of genes involved in urea synthesis and urea, ammonia and water transport, all of them crucial in osmoregulation. We describe the presence of different gene copies and isoforms of key enzymes involved in this process, including arginases and transporters of urea and ammonia, for which sequence information is currently absent in the databases for this model species. The transcriptome
Reisenwitz, T H; Wimbish, G J
The elderly or senior citizen is a large and growing market segment that purchases a disproportionate amount of health care products, particularly nonprescription products. This study attempts to examine the elderly's level of involvement (high versus low) and their purchase decision process regarding nonprescription or over-the-counter (OTC) products. Frequencies and percentages are calculated to indicate level of involvement as well as purchase decision behavior. Previous research is critiqued and managerial implications are discussed.
Krabbendam, A.; Colins, O.F.; Doreleijers, T.A.H.; van der Molen, E.; Beekman, A.T.F.; Vermeiren, R.R.J.M.
This longitudinal study investigated the predictive value of trauma and mental health problems for the development of antisocial personality disorder (ASPD) and borderline personality disorder (BPD) in previously detained women. The participants were 229 detained adolescent females who were assessed
Payload specialist Reinhard Furrer shows evidence of previous blood sampling while Wubbo J. Ockels, Dutch payload specialist (only partially visible), extends his right arm after a sample has been taken. Both men show bruises on their arms.
Choice of contraception after previous operative delivery at a family planning clinic in Northern Nigeria. Amina Mohammed‑Durosinlorun, Joel Adze, Stephen Bature, Caleb Mohammed, Matthew Taingson, Amina Abubakar, Austin Ojabo, Lydia Airede ...
Previous utilization of service does not improve timely booking in antenatal care: Cross sectional study ... Journal Home > Vol 24, No 3 (2010) > ... Results: Past experience on antenatal care service utilization did not come out as a predictor for ...
Navandar, Archit; Veiga, Santiago; Torres, Gonzalo; Chorro, David; Navarro, Enrique
Although the kicking skill is influenced by limb dominance and sex, how a previous hamstring injury affects kicking has not been studied in detail. Thus, the objective of this study was to evaluate the effect of sex and limb dominance on kicking in limbs with and without a previous hamstring injury. 45 professional players (males: n=19, previously injured players=4, age=21.16 ± 2.00 years; females: n=19, previously injured players=10, age=22.15 ± 4.50 years) performed 5 kicks each with their preferred and non-preferred limb at a target 7m away, which were recorded with a three-dimensional motion capture system. Kinematic and kinetic variables were extracted for the backswing, leg cocking, leg acceleration and follow through phases. A shorter backswing (20.20 ± 3.49% vs 25.64 ± 4.57%), and differences in knee flexion angle (58 ± 10o vs 72 ± 14o) and hip flexion velocity (8 ± 0rad/s vs 10 ± 2rad/s) were observed in previously injured, non-preferred limb kicks for females. A lower peak hip linear velocity (3.50 ± 0.84m/s vs 4.10 ± 0.45m/s) was observed in previously injured, preferred limb kicks of females. These differences occurred in the backswing and leg-cocking phases where the hamstring muscles were the most active. A variation in the functioning of the hamstring muscles and that of the gluteus maximus and iliopsoas in the case of a previous injury could account for the differences observed in the kicking pattern. Therefore, the effects of a previous hamstring injury must be considered while designing rehabilitation programs to re-educate kicking movement.
Chen, Chien-Cheng; Chiu, Su-Fen
Past researchers have found that motivating job characteristics can increase employee display of organizational citizenship behavior (OCB). In this study, the authors extended previous research by investigating the mediating process of job involvement in the relationship between job characteristics and OCB. The authors collected data from 323 employees and their supervisors from 7 companies in Taiwan. Results show that, through the mediating process of job involvement, the 3 job characteristics (i.e., task identity, task significance, and autonomy) positively influenced the display of an employee's OCB, whereas skill variety had a negative effect on OCB. The authors discuss implications of their findings, contributions, limitations, and future research directions.
Meyer, M.; Hunnius, S.; Elk, M. van; Ede, F.L. van; Bekkering, H.
When we are engaged in a joint action, we need to integrate our partner's actions with our own actions. Previous research has shown that in adults the involvement of one's own motor system is enhanced during observation of an action partner as compared to during observation of an individual actor.
Stalker, Kirsten Ogilvie; Brunner, Richard; Maguire, Roseann; Mitchell, June
Promoting parental participation plays a significant role in education policies across Britain. Previous research has identified various barriers to involving disabled parents. This paper reports findings from part of a study examining disabled parents' engagement in their children's education, which focused on good practice. Twenty-four case…
Goncalves-Pereira, Manuel; van Wijngaarden, Bob; Xavier, Miguel; Papoila, Ana L.; Caldas-de-Almeida, Jose M.; Schene, Aart H.
Background: Despite the achievements of previous research, caregiving assessments in severe mental illness should be crossculturally validated in order to define risk groups or to evaluate family work. This study reports on the psychometric properties of the European version of the Involvement
Introduction Mutation, amplification or dysregulation of the EGFR family leads to uncontrolled division and predisposes to cancer. Inhibiting the EGFR represents a form of targeted cancer therapy. Case report We report the case of 79 year old gentlemen with a history of skin cancer involving the left ear who had radiation and surgical excision. He had presented with recurrent lymph node in the left upper neck. We treated him with radiation therapy concurrently with Cetuximab. He developed a skin rash over the face and neck area two weeks after starting Cetuximab, which however spared the previously irradiated area. Conclusion The etiology underlying the sparing of the previously irradiated skin maybe due to either decrease in the population of EGFR expressing cells or decrease in the EGFR expression. We raised the question that "Is it justifiable to use EGFR inhibitors for patients having recurrence in the previously irradiated field?" We may need further research to answer this question which may guide the physicians in choosing appropriate drug in this scenario. PMID:20478052
... eye involvement. Nonretinal and Retinal Eye Findings Facial angiofibromas may involve the eyelids of individuals with TSC, ... the hamartomas have many blood vessels (as are angiofibromas of the skin). Less than half of the ...
Ooi, Poh Veh
Secondary recurrent miscarriage (RM) is defined as three or more consecutive pregnancy losses after delivery of a viable infant. Previous reports suggest that a firstborn male child is associated with less favourable subsequent reproductive potential, possibly due to maternal immunisation against male-specific minor histocompatibility antigens. In a retrospective cohort study of 85 cases of secondary RM we aimed to determine if secondary RM was associated with (i) gender of previous child, maternal age, or duration of miscarriage history, and (ii) increased risk of pregnancy complications. Fifty-three women (62.0%; 53\\/85) gave birth to a male child prior to RM compared to 32 (38.0%; 32\\/85) who gave birth to a female child (p=0.002). The majority (91.7%; 78\\/85) had uncomplicated, term deliveries and normal birth weight neonates, with one quarter of the women previously delivered by Caesarean section. All had routine RM investigations and 19.0% (16\\/85) had an abnormal result. Fifty-seven women conceived again and 33.3% (19\\/57) miscarried, but there was no significant difference in failure rates between those with a previous male or female child (13\\/32 vs. 6\\/25, p=0.2). When patients with abnormal results were excluded, or when women with only one previous child were considered, there was still no difference in these rates. A previous male birth may be associated with an increased risk of secondary RM but numbers preclude concluding whether this increases recurrence risk. The suggested association with previous male birth provides a basis for further investigations at a molecular level.
Ooi, Poh Veh
Secondary recurrent miscarriage (RM) is defined as three or more consecutive pregnancy losses after delivery of a viable infant. Previous reports suggest that a firstborn male child is associated with less favourable subsequent reproductive potential, possibly due to maternal immunisation against male-specific minor histocompatibility antigens. In a retrospective cohort study of 85 cases of secondary RM we aimed to determine if secondary RM was associated with (i) gender of previous child, maternal age, or duration of miscarriage history, and (ii) increased risk of pregnancy complications. Fifty-three women (62.0%; 53\\/85) gave birth to a male child prior to RM compared to 32 (38.0%; 32\\/85) who gave birth to a female child (p=0.002). The majority (91.7%; 78\\/85) had uncomplicated, term deliveries and normal birth weight neonates, with one quarter of the women previously delivered by Caesarean section. All had routine RM investigations and 19.0% (16\\/85) had an abnormal result. Fifty-seven women conceived again and 33.3% (19\\/57) miscarried, but there was no significant difference in failure rates between those with a previous male or female child (13\\/32 vs. 6\\/25, p=0.2). When patients with abnormal results were excluded, or when women with only one previous child were considered, there was still no difference in these rates. A previous male birth may be associated with an increased risk of secondary RM but numbers preclude concluding whether this increases recurrence risk. The suggested association with previous male birth provides a basis for further investigations at a molecular level.
Pais, Alexandre; Valero, Paola
We discuss contemporary theories in mathematics education in order to do research on research. Our strategy consists of analysing discursively and ideologically recent key publications addressing the role of theory in mathematics education research. We examine how the field fabricates its object...... of research by deploying Foucault’s notion of bio-politics - mainly to address the object “learning” - and Žižek’s ideology critique - to address the object “mathematics”. These theories, which have already been used in the field to research teaching and learning, have a great potential to contribute...... to a reflexivity of research on its discourses and effects. Furthermore, they enable us to present a clear distinction between what has been called the sociopolitical turn in mathematics education research and what we call a positioning of mathematics education (research) practices in the Political....
Schreiber, Tina; Windisch, Wolfram
In sarcoidosis, muscle involvement is common, but mostly asymptomatic. Currently, little is known about respiratory muscle and diaphragm involvement and function in patients with sarcoidosis. Reduced inspiratory muscle strength and/or a reduced diaphragm function may contribute to exertional dyspnea, fatigue and reduced health-related quality of life. Previous studies using volitional and non-volitional tests demonstrated a reduced inspiratory muscle strength in sarcoidosis compared to control subjects, and also showed that respiratory muscle function may even be significantly impaired in a subset of patients. Areas covered: This review examines the evidence on respiratory muscle involvement and its implications in sarcoidosis with emphasis on pathogenesis, diagnosis and treatment of respiratory muscle dysfunction. The presented evidence was identified by a literature search performed in PubMed and Medline for articles about respiratory and skeletal muscle function in sarcoidosis through to January 2018. Expert commentary: Respiratory muscle involvement in sarcoidosis is an underdiagnosed condition, which may have an important impact on dyspnea and health-related quality of life. Further studies are needed to understand the etiology, pathogenesis and extent of respiratory muscle involvement in sarcoidosis.
Brehm Johansen, Mette
hospitals. During the last 25 years, patient involvement and quality improvement have become connected in Danish healthcare policy. However, the ideal of involving patients in quality improvement is described in very general terms and with only few specific expectations of how it is to be carried out...... in practice, as I show in the thesis. In the patient involvement literature, the difficulties of getting patient involvement in quality improvement to have in an impact on the planning and development of healthcare services is, for example, ascribed to conceptual vagueness of patient involvement, differences...... in perspectives, values and understandings between patients and healthcare professionals, or the lack of managerial attention and prioritization....
Lips, Irene M.; Vonk, Ernest J.A.; Koster, Mariska E.Y.; Houwing, Ronald H.
Erlotinib is an epidermal growth factor receptor inhibitor prescribed to patients with locally advanced or metastasized non-small cell lung carcinoma after failure of at least one earlier chemotherapy treatment. Approximately 75% of the patients treated with erlotinib develop acneiform skin rashes. A patient treated with erlotinib 3 months after finishing concomitant treatment with chemotherapy and radiotherapy for non-small cell lung cancer is presented. Unexpectedly, the part of the skin that had been included in his previously radiotherapy field was completely spared from the erlotinib-induced acneiform skin rash. The exact mechanism of erlotinib-induced rash sparing in previously irradiated skin is unclear. The underlying mechanism of this phenomenon needs to be explored further, because the number of patients being treated with a combination of both therapeutic modalities is increasing. The therapeutic effect of erlotinib in the area of the previously irradiated lesion should be assessed. (orig.)
in different jurisdictions use previous judicial decisions in their argument, we need to move beyond the concept of precedent to a wider notion, which would embrace practices and theories in legal systems outside the Common law tradition. This article presents the concept of ‘reasoning with previous decisions...... law method’, but they are no less rational and intellectually sophisticated. The reason for the rather conceited attitude of some comparatists is in the dominance of the common law paradigm of precedent and the accompanying ‘case law method’. If we want to understand how courts and lawyers......’ as such an alternative and develops its basic models. The article first points out several shortcomings inherent in limiting the inquiry into reasoning with previous decisions by the common law paradigm (1). On the basis of numerous examples provided in section (1), I will present two basic models of reasoning...
Rojas-Martínez, Rosalba; Basto-Abreu, Ana; Aguilar-Salinas, Carlos A; Zárate-Rojas, Emiliano; Villalpando, Salvador; Barrientos-Gutiérrez, Tonatiuh
To compare the prevalence of previously diagnosed diabetes in 2016 with previous national surveys and to describe treatment and its complications. Mexico's national surveys Ensa 2000, Ensanut 2006, 2012 and 2016 were used. For 2016, logistic regression models and measures of central tendency and dispersion were obtained. The prevalence of previously diagnosed diabetes in 2016 was 9.4%. The increase of 2.2% relative to 2012 was not significant and only observed in patients older than 60 years. While preventive measures have increased, the access to medical treatment and lifestyle has not changed. The treatment has been modified, with an increase in insulin and decrease in hypoglycaemic agents. Population aging, lack of screening actions and the increase in diabetes complications will lead to an increase on the burden of disease. Policy measures targeting primary and secondary prevention of diabetes are crucial.
von Knobelsdorff-Brenkenhoff, Florian; Trauzeddel, Ralf Felix; Schulz-Menger, Jeanette
Cardiovascular magnetic resonance (CMR) is a versatile non-invasive imaging modality that serves a broad spectrum of indications in clinical cardiology and has proven evidence. Most of the numerous applications are appropriate in patients with previous cardiovascular surgery in the same manner as in non-surgical subjects. However, some specifics have to be considered. This review article is intended to provide information about the application of CMR in adults with previous cardiovascular surgery. In particular, the two main scenarios, i.e. following coronary artery bypass surgery and following heart valve surgery, are highlighted. Furthermore, several pictorial descriptions of other potential indications for CMR after cardiovascular surgery are given.
Fredricks, Jennifer A.; Simpkins, Sandra D.
The goal of this volume is to show how organized activities provide an ideal setting for developing a deeper understanding of peer relations, as well as offering a context for a more positive study of peers. The chapters in this volume focus on youth 10 to 18 years of age. In this introductory chapter we first describe the reasons why organized…
McNeal, Ralph B., Jr.
Researchers focusing on parent involvement continue to concentrate their efforts on the relationship between involvement and student performance in isolation of the school context in which involvement occurs. This research outlines an ecology of involvement and how this social context affects parent involvement and student performance. Relying on…
Edwards, M.J.; Hirsch, R.M.; Broadwater, J.R.; Netscher, D.T.; Ames, F.C.
Squamous cell carcinoma (SCC) arising in previously burned or irradiated skin was reviewed in 66 patients treated between 1944 and 1986. Healing of the initial injury was complicated in 70% of patients. Mean interval from initial injury to diagnosis of SCC was 37 years. The overwhelming majority of patients presented with a chronic intractable ulcer in previously injured skin. The regional relapse rate after surgical excision was very high, 58% of all patients. Predominant patterns of recurrence were in local skin and regional lymph nodes (93% of recurrences). Survival rates at 5, 10, and 20 years were 52%, 34%, and 23%, respectively. Five-year survival rates in previously burned and irradiated patients were not significantly different (53% and 50%, respectively). This review, one of the largest reported series, better defines SCC arising in previously burned or irradiated skin as a locally aggressive disease that is distinct from SCC arising in sunlight-damaged skin. An increased awareness of the significance of chronic ulceration in scar tissue may allow earlier diagnosis. Regional disease control and survival depend on surgical resection of all known disease and may require radical lymph node dissection or amputation
Background: A previous ceasarean section is an important variable that influences patient management in subsequent pregnancies. A trial of vaginal delivery in such patients is a feasible alternative to a secondary section, thus aiding to reduce the ceasarean section rate and its associated co-morbidities. Objective: To ...
... of Substantially Equivalent State Law § 1710.552 Previously accepted state filings. (a) Materials... and contracts or agreements contain notice of purchaser's revocation rights. In addition see § 1715.15..., unless the developer is obligated to do so in the contract. (b) If any such filing becomes inactive or...
The aim of this study was to identify influences on the job satisfaction of previously disadvantaged ..... I am still riding the cloud … I hope it lasts. .... as a way of creating a climate and culture in schools where individuals are willing to explore.
Ronit, Andreas; Berg, Ronan M G; Bruunsgaard, Helle
Non-serotype b strains of Haemophilus influenzae are extremely rare causes of acute bacterial meningitis in immunocompetent individuals. We report a case of acute bacterial meningitis in a 14-year-old boy, who was previously healthy and had been immunised against H influenzae serotype b (Hib...
An 8-year-old previously healthy female presented with a 3 weeks history of headache, neck stiffness, deafness, fever and vomiting and was diagnosed with cryptococcal meningitis. She had documented hearing loss and was referred to tertiary-level care after treatment with fluconazole did not improve her neurological ...
New Hyades polarimetry and field star photometry have been obtained to check the Hyades reddening, which was found to be nonzero in a previous paper. The new Hyades polarimetry implies essentially zero reddening; this is also true of polarimetry published by Behr (which was incorrectly interpreted in the previous paper). Four photometric techniques which are presumed to be insensitive to blanketing are used to compare the Hyades to nearby field stars; these four techniques also yield essentially zero reddening. When all of these results are combined with others which the author has previously published and a simultaneous solution for the Hyades, Coma, and M67 reddenings is made, the results are E (B-V) =3 +- 2 (sigma) mmag, -1 +- 3 (sigma) mmag, and 46 +- 6 (sigma) mmag, respectively. No support for a nonzero Hyades reddening is offered by the new results. When the newly obtained reddenings for the Hyades, Coma, and M67 are compared with results from techniques given by Crawford and by users of the David Dunlap Observatory photometric system, no differences between the new and other reddenings are found which are larger than about 2 sigma. The author had previously found that the M67 main-sequence stars have about the same blanketing as that of Coma and less blanketing than the Hyades; this conclusion is essentially unchanged by the revised reddenings
Rapid fish stock depletion in previously unexploited seamounts: the case of Beryx splendens from the Sierra Leone Rise (Gulf of Guinea) ... A spectral analysis and red-noise spectra procedure (REDFIT) algorithm was used to identify the red-noise spectrum from the gaps in the observed time-series of catch per unit effort by ...
... 18 Conservation of Power and Water Resources 1 2010-04-01 2010-04-01 false Previously submitted material. 154.302 Section 154.302 Conservation of Power and Water Resources FEDERAL ENERGY REGULATORY... concurrently with the rate change filing. There must be furnished to the Director, Office of Energy Market...
In the '98-'99 period some process cells of the EUREX pant will be dismantled, in order to place there the liquid wastes conditioning plant 'CORA'. This report resumes the previous activities (plant rinsing campaigns and inactive Cell 014 dismantling), run in the past three years and the drawn experience [it
Obstructive pulmonary disease in patients with previous tuberculosis: Pathophysiology of a community-based cohort. B.W. Allwood, R Gillespie, M Galperin-Aizenberg, M Bateman, H Olckers, L Taborda-Barata, G.L. Calligaro, Q Said-Hartley, R van Zyl-Smit, C.B. Cooper, E van Rikxoort, J Goldin, N Beyers, E.D. Bateman ...
Ryan, Charles J.; Smith, Matthew R.; de Bono, Johann S.; Molina, Arturo; Logothetis, Christopher J.; de Souza, Paul; Fizazi, Karim; Mainwaring, Paul; Piulats, Josep M.; Ng, Siobhan; Carles, Joan; Mulders, Peter F. A.; Basch, Ethan; Small, Eric J.; Saad, Fred; Schrijvers, Dirk; van Poppel, Hendrik; Mukherjee, Som D.; Suttmann, Henrik; Gerritsen, Winald R.; Flaig, Thomas W.; George, Daniel J.; Yu, Evan Y.; Efstathiou, Eleni; Pantuck, Allan; Winquist, Eric; Higano, Celestia S.; Taplin, Mary-Ellen; Park, Youn; Kheoh, Thian; Griffin, Thomas; Scher, Howard I.; Rathkopf, Dana E.; Boyce, A.; Costello, A.; Davis, I.; Ganju, V.; Horvath, L.; Lynch, R.; Marx, G.; Parnis, F.; Shapiro, J.; Singhal, N.; Slancar, M.; van Hazel, G.; Wong, S.; Yip, D.; Carpentier, P.; Luyten, D.; de Reijke, T.
Abiraterone acetate, an androgen biosynthesis inhibitor, improves overall survival in patients with metastatic castration-resistant prostate cancer after chemotherapy. We evaluated this agent in patients who had not received previous chemotherapy. In this double-blind study, we randomly assigned
Tilford, J M; Robbins, J M; Shema, S J; Farmer, F L
To examine the healthcare utilization and costs of previously uninsured rural children. Four years of claims data from a school-based health insurance program located in the Mississippi Delta. All children who were not Medicaid-eligible or were uninsured, were eligible for limited benefits under the program. The 1987 National Medical Expenditure Survey (NMES) was used to compare utilization of services. The study represents a natural experiment in the provision of insurance benefits to a previously uninsured population. Premiums for the claims cost were set with little or no information on expected use of services. Claims from the insurer were used to form a panel data set. Mixed model logistic and linear regressions were estimated to determine the response to insurance for several categories of health services. The use of services increased over time and approached the level of utilization in the NMES. Conditional medical expenditures also increased over time. Actuarial estimates of claims cost greatly exceeded actual claims cost. The provision of a limited medical, dental, and optical benefit package cost approximately $20-$24 per member per month in claims paid. An important uncertainty in providing health insurance to previously uninsured populations is whether a pent-up demand exists for health services. Evidence of a pent-up demand for medical services was not supported in this study of rural school-age children. States considering partnerships with private insurers to implement the State Children's Health Insurance Program could lower premium costs by assembling basic data on previously uninsured children.
Karam, Amer; Stempel, Michelle; Cody, Hiram S; Port, Elisa R
Sentinel lymph node (SLN) biopsy is the standard of care for axillary staging in breast cancer, but many clinical scenarios questioning the validity of SLN biopsy remain. Here we describe our experience with reoperative-SLN (re-SLN) biopsy after previous mastectomy. Review of the SLN database from September 1996 to December 2007 yielded 20 procedures done in the setting of previous mastectomy. SLN biopsy was performed using radioisotope with or without blue dye injection superior to the mastectomy incision, in the skin flap in all patients. In 17 of 20 patients (85%), re-SLN biopsy was performed for local or regional recurrence after mastectomy. Re-SLN biopsy was successful in 13 of 20 patients (65%) after previous mastectomy. Of the 13 patients, 2 had positive re-SLN, and completion axillary dissection was performed, with 1 having additional positive nodes. In the 11 patients with negative re-SLN, 2 patients underwent completion axillary dissection demonstrating additional negative nodes. One patient with a negative re-SLN experienced chest wall recurrence combined with axillary recurrence 11 months after re-SLN biopsy. All others remained free of local or axillary recurrence. Re-SLN biopsy was unsuccessful in 7 of 20 patients (35%). In three of seven patients, axillary dissection was performed, yielding positive nodes in two of the three. The remaining four of seven patients all had previous modified radical mastectomy, so underwent no additional axillary surgery. In this small series, re-SLN was successful after previous mastectomy, and this procedure may play some role when axillary staging is warranted after mastectomy.
Hazard perception is an essential part of the driving task. There are clear indications that insufficient skills in perceiving hazards play an important role in the occurrence of crashes, especially those involving novice drivers. Proper hazard perception not only consists of scanning and perceiving
Tobi, Hilde; Kampen, Jarl K.
Many of today’s global scientific challenges require the joint involvement of researchers from different disciplinary backgrounds (social sciences, environmental sciences, climatology, medicine, etc.). Such interdisciplinary research teams face many challenges resulting from differences in training
T. I. Zlobina
Full Text Available Joint involvement in syphilis has been considered as casuistry in recent years. At the same time, the high incidence of primary syphilis and the notified cases of late neurosyphilis may suggest that joint involvement in this disease is by no means always verified. Traditionally there are two forms of syphilitic arthritis: primary synovial (involving the articular membranes and sac and primary bone (involving the articular bones and cartilages ones. The paper describes the authors' clinical case of the primary bone form of articular syphilis in a 34-year-old man.
Galvez, Carlos; Navarro-Martinez, Jose; Bolufer, Sergio; Lirio, Francisco; Mafe, Juan Jose; Rivera, Maria Jesus; Roca, Joaquin; Baschwitz, Benno
Surgical resection of a contralateral recurrence of non-small cell lung cancer (NSCLC) is indicated in patients without evidence of disseminated disease and considered functionally operable. General anesthesia and double-lumen intubation involves one lobe ventilation in a patient treated with a previous lobectomy, thus increasing the risks of ventilator-induced injuries and the morbidity. Awake procedures facilitate the surgery decreasing the anesthetic and surgical times, keeping the diaphragm motion and diminishing the ventilator-induced injuries into the remaining contralateral lobe. We present a 43-year-old woman with a previous left-lower lobectomy for a 3.1-cm mucinous adenocarcinoma 15 months before without nodal involvement, who presents a right-lower lobe 8-mm cavitated nodule, with evident radiological growth and fine-needle aspiration concordant with mucinous adenocarcinoma. We suggest an awake procedure with locoregional epidural anesthesia.
Sabate, Josep M.; Gomez, Antonio; Torrubia, Sofia; Salinas, Teresa; Clotet, Montse; Lerma, Enrique
Lupus panniculitis is an unusual immunological disease that characteristically affects the subcutaneous fat and occurs in 2% of patients with systemic lupus erythematosus. We report a case of lupus panniculitis involving the breast, which represents a very uncommon location. Mammographically, it presented as a suspicious irregular mass involving the subcutaneous fat pad with skin thickening. High echogenicity constituted the most relevant sonographic finding. To the best of our knowledge, the magnetic resonance (MR) features have not been previously described. High signal intensity was found on both T1- and T2-weighted precontrast MR images. A dynamic contrast-enhanced study revealed a suspicious focal mass with irregular margins and rim enhancement, with a type 3 time-signal intensity curve. Differential diagnosis with carcinoma and fat necrosis and the value of core biopsy are discussed. (orig.)
Hrgović, Z; Bukovic, D; Mrcela, M; Hrgović, I; Siebzehnrübl, E; Karelovic, D
The case of 36-year-old tercipare is described who developed choriocharcinoma in a previous pregnancy. During the first term labour the patient developed cardiac arrest, so reanimation and sectio cesarea was performed. A male new-born was delivered in good condition, but even after intensive therapy and reanimation occurred death of parturient woman with picture of disseminate intravascular coagulopathia (DIK). On autopsy and on histology there was no sign of malignant disease, so it was not possible to connect previous choricarcinoma with amniotic fluid embolism. Maybe was place of choriocarcinoma "locus minoris resistentiae" which later resulted with failure in placentation what was hard to prove. On autopsy we found embolia of lung with a microthrombosis of terminal circulation with punctiformis bleeding in mucous, what stands for DIK.
Akturk, Halis Kaan; Yasa, Seda
Wolfram syndrome (WFS) is a rare autosomal recessive disease with non-autoimmune childhood onset insulin dependent diabetes and optic atrophy. WFS type 2 (WFS2) differs from WFS type 1 (WFS1) with upper intestinal ulcers, bleeding tendency and the lack ofdiabetes insipidus. Li-fespan is short due to related comorbidities. Only a few familieshave been reported with this syndrome with the CISD2 mutation. Here we report two siblings with a clinical diagnosis of WFS2, previously misdiagnosed with type 1 diabetes mellitus and diabetic retinopathy-related blindness. We report possible additional clinical and laboratory findings that have not been pre-viously reported, such as asymptomatic hypoparathyroidism, osteomalacia, growth hormone (GH) deficiency and hepatomegaly. Even though not a requirement for the diagnosis of WFS2 currently, our case series confirm hypogonadotropic hypogonadism to be also a feature of this syndrome, as reported before. © Polish Society for Pediatric Endocrinology and Diabetology.
Rajesh, Bhagavatheeswaran; Ashalatha, Radhakrishnan [Sree Chitra Tirunal Institute for Medical Sciences and Technology, Department of Neurology, Trivandrum, Kerala (India); Kesavadas, Chandrasekharan; Thomas, Bejoy [Sree Chitra Tirunal Institute for Medical Sciences and Technology, Department of Imaging Sciences and Interventional Radiology, Trivandrum, Kerala (India)
Rasmussen encephalitis (RE) is a rare devastating disease of childhood causing progressive neurological deficits and intractable seizures, typically affecting one hemisphere. Characteristic MRI features include progressive unihemispheric focal cortical atrophy and grey- or white-matter high-signal changes and basal ganglion involvement, particularly of the caudate nucleus. To analyse the pattern of involvement of different brain structures in a series of patients with RE and to attempt clinical correlation. We reviewed the medical records and neuroimaging data of 12 patients diagnosed with RE satisfying the European Consensus Statement diagnostic criteria. The disease manifested as seizures in all patients and was refractory; epilepsia partialis continua was a notable feature (nine patients). Hemiparesis of varying grades was noted in all but one patient; none had extrapyramidal signs. Neuroimaging showed cortical involvement in the insular/periinsular regions in 11 patients. Caudate atrophy was noted in ten patients. Putaminal atrophy was seen in nine patients, six of whom had additional hyperintense signal changes. Our study highlights frequent putaminal atrophy and signal changes in RE, which suggests a more extensive basal ganglion involvement than emphasized previously. Recognition of putaminal changes may be a useful additional tool in the radiological diagnosis of RE. (orig.)
Rajesh, Bhagavatheeswaran; Ashalatha, Radhakrishnan; Kesavadas, Chandrasekharan; Thomas, Bejoy
Rasmussen encephalitis (RE) is a rare devastating disease of childhood causing progressive neurological deficits and intractable seizures, typically affecting one hemisphere. Characteristic MRI features include progressive unihemispheric focal cortical atrophy and grey- or white-matter high-signal changes and basal ganglion involvement, particularly of the caudate nucleus. To analyse the pattern of involvement of different brain structures in a series of patients with RE and to attempt clinical correlation. We reviewed the medical records and neuroimaging data of 12 patients diagnosed with RE satisfying the European Consensus Statement diagnostic criteria. The disease manifested as seizures in all patients and was refractory; epilepsia partialis continua was a notable feature (nine patients). Hemiparesis of varying grades was noted in all but one patient; none had extrapyramidal signs. Neuroimaging showed cortical involvement in the insular/periinsular regions in 11 patients. Caudate atrophy was noted in ten patients. Putaminal atrophy was seen in nine patients, six of whom had additional hyperintense signal changes. Our study highlights frequent putaminal atrophy and signal changes in RE, which suggests a more extensive basal ganglion involvement than emphasized previously. Recognition of putaminal changes may be a useful additional tool in the radiological diagnosis of RE. (orig.)
Aranguren, María; Consejo Nacional de Investigaciones Científicas y Técnicas CONICET
The aim of this work is to analyze the influence of study field, expertise and recreational activities participation in Torrance Tests of Creative Thinking (TTCT, 1974) performance. Several hypotheses were postulated to explore the possible effects of previous knowledge in TTCT verbal and TTCT figural university students’ outcomes. Participants in this study included 418 students from five study fields: Psychology;Philosophy and Literature, Music; Engineering; and Journalism and Advertisin...
Lee, Eun Hye; Cha, Joo Hee; Han, Dae Hee; Choi, Young Ho; Hwang, Ki Tae; Ryu, Dae Sik; Kwak, Jin Ho; Moon, Woo Kyung
We wanted to improve the quality of subsequent screening by reviewing the previous screening of breast cancer patients. Twenty-four breast cancer patients who underwent previous screening were enrolled. All 24 took mammograms and 15 patients also took sonograms. We reviewed the screening retrospectively according to the BI-RADS criteria and we categorized the results into false negative, true negative, true positive and occult cancers. We also categorized the causes of false negative cancers into misperception, misinterpretation and technical factors and then we analyzed the attributing factors. Review of the previous screening revealed 66.7% (16/24) false negative, 25.0% (6/24) true negative, and 8.3% (2/24) true positive cancers. False negative cancers were caused by the mammogram in 56.3% (9/16) and by the sonogram in 43.7% (7/16). For the false negative cases, all of misperception were related with mammograms and this was attributed to dense breast, a lesion located at the edge of glandular tissue or the image, and findings seen on one view only. Almost all misinterpretations were related with sonograms and attributed to loose application of the final assessment. To improve the quality of breast screening, it is essential to overcome the main causes of false negative examinations, including misperception and misinterpretation. We need systematic education and strict application of final assessment categories of BI-RADS. For effective communication among physicians, it is also necessary to properly educate them about BI-RADS
Full Text Available The aims of the present research are: 1 to know that product buying decision possibly occurs, 2 to know how product buying decision occurs on Lazada e-commerce’s customers, 3 how previous buyers’ comments can increase product buying decision on Lazada e-commerce. This research utilizes qualitative research method. Qualitative research is a research that investigates other researches and makes assumption or discussion result so that other analysis results can be made in order to widen idea and opinion. Research result shows that product which has many ratings and reviews will trigger other buyers to purchase or get that product. The conclusion is that product buying decision may occur because there are some processes before making decision which are: looking for recognition and searching for problems, knowing the needs, collecting information, evaluating alternative, evaluating after buying. In those stages, buying decision on Lazada e-commerce is supported by price, promotion, service, and brand.
This handbook on parent involvement, designed to be used with preschool programs, was developed by the Jefferson County Public Schools in Lakewood, Colorado. Included are: (1) a general statement about parent involvement in an early childhood program, (2) a description of the Jefferson County Early Childhood Program, (3) a description of the…
Full Text Available Mucoceles are cysts that can develop after facial bone fractures, especially those involving the frontal sinuses. Despite being rare, mucoceles can result in serious delayed sequelae. We present a case of a frontal mucocele that developed two years after extensive facial trauma following a motor vehicle crash (MVC and review the emergency department (ED evaluation and treatment of mucocele. Early recognition, appropriate imaging, and an interdisciplinary approach are essential for managing these rare sequelae of facial trauma.
EuDaly, Megan; Kraus, Chadd K.
Mucoceles are cysts that can develop after facial bone fractures, especially those involving the frontal sinuses. Despite being rare, mucoceles can result in serious delayed sequelae. We present a case of a frontal mucocele that developed two years after extensive facial trauma following a motor vehicle crash (MVC) and review the emergency department (ED) evaluation and treatment of mucocele. Early recognition, appropriate imaging, and an interdisciplinary approach are essential for managing ...
The PACARDO research project: youthful drug involvement in Central America and the Dominican Republic Proyecto de investigación PACARDO: el consumo de drogas entre la juventud en Centroamérica y la República Dominicana
Catherine M. Dormitzer
Full Text Available OBJECTIVE: To estimate the occurrence and school-level clustering of drug involvement among school-attending adolescent youths in each of seven countries in Latin America, drawing upon evidence from the PACARDO research project, a multinational collaborative epidemiological research study. METHODS: During 1999-2000, anonymous self-administered questionnaires on drug involvement and related behaviors were administered to a cross-sectional, nationally representative sample that included a total of 12 797 students in the following seven countries: Costa Rica (n= 1 702, the Dominican Republic (n= 2 023, El Salvador (n= 1 628, Guatemala (n= 2 530, Honduras (n= 1 752, Nicaragua (n= 1 419, and Panama (n= 1 743. (The PACARDO name concatenates PA for Panamá,CA for Centroamérica,and RDO for República Dominicana. Estimates for exposure opportunity and actual use of alcohol, tobacco, inhalants, marijuana, cocaine (crack/coca paste, amphetamines and methamphetamines, tranquilizers, ecstasy, and heroin were assessed via responses about questions on age of first chance to try each drug, and first use. Logistic regression models accounting for the complex survey design were used to estimate the associations of interest. RESULTS: Cumulative occurrence estimates for alcohol, tobacco, inhalants, marijuana, and illegal drug use for the overall sample were, respectively: 52%, 29%, 5%, 4%, and 5%. In comparison to females, males were more likely to use alcohol, tobacco, inhalants, marijuana, and illegal drugs; the odds ratio estimates were 1.3, 2.1, 1.6, 4.1, and 3.2, respectively. School-level clustering was noted in all countries for alcohol and tobacco use; it was also noted in Costa Rica, El Salvador, Guatemala, and Panama for illegal drug use. CONCLUSIONS: This report sheds new light on adolescent drug experiences in Panama, the five Spanish-heritage countries of Central America, and the Dominican Republic, and presents the first estimates of school
Rivas Flores, José Ignacio; Pérez Ferra, Miguel; Leite-Méndez, Analía Elizabeth; Quijano López, Rocío; Núñez, Claudio
This paper is part of a research project about how students of teacher education elaborate their professional identity. Through a inquiry on their life stories, the research aims to understand and analyse the experiences of these students along their primary and secondary education, their experiences in university classrooms, and the incidence of these experiences, as well as those generated in schools, in the early years of his teaching career. The project, called “the professional identity ...
Khawaja, Iram; Mørck, Line Lerche
involvement by the researcher, which challenges traditional perspectives onresearch and researcher positioning. A key point in this regard is the importance ofconstant awareness of and reflection on the multiple ways in which one's positioningas a researcher influences the research process. Studying the other...
Kim, Taik-Kun; Cha, Sang Hoon; Chung, Kyoo Byung; Kim, Jung Hyuck; Kim, Baek Hyun; Chung, Hwan Hoon [Department of Diagnostic Radiology, Korea University College of Medicine, Ansan Hospital, 516 Kojan-Dong, Ansan City, Kyungki-Do 425-020 (Korea); Eun, Baik-Lin [Department of Pediatrics, Korea University College of Medicine, Seoul (Korea)
A previously healthy 24-day-old boy presented with a 2-day history of fever and had a convulsion on the day of admission. MRI showed abnormal signal in the thalami, caudate nuclei and central white matter. Acute necrotising encephalopathy was diagnosed, other causes having been excluded after biochemical and haematological analysis of blood, urine and CSF. He recovered, but with spastic quadriparesis. At the age of 28 months, he suffered sudden deterioration of consciousness and motor weakness of his right limbs. MRI was consistent with an acute cerebrovascular accident. Angiography showed bilateral middle cerebral artery stenosis or frank occlusion with numerous lenticulostriate collateral vessels consistent with moyamoya disease. (orig.)
Hau, I D; Russ, W R; Bronson, F
An exact copy of the detector model generated for Cyltran was reproduced as an MCNP input file and the detection efficiency was calculated similarly with the methodology used in previous experimental measurements and simulation of a 280 cm(3) HPGe detector. Below 1000 keV the MCNP data correlated to the Cyltran results within 0.5% while above this energy the difference between MCNP and Cyltran increased to about 6% at 4800 keV, depending on the electron cut-off energy.
Crawford, Clare; Burns, Jan; Fernie, Bruce A
Existing evidence suggests that people with intellectual disabilities are vulnerable to low self-esteem leading to additional psychosocial issues such as social exclusion and stress. Previous research into the involvement of Special Olympics (SO) of people with intellectual disabilities has indicted positive psychosocial outcomes. Involvement in sport is known generally to have psychological and social benefits. This study aimed to compare the psychosocial impact of involvement in sport through the SO to no or limited sports involvement, for a sample of people with intellectual disabilities. A cross sectional design was employed comparing three groups, SO, Mencap Sports, and Mencap No Sports on the variables: Self-esteem, quality of life, stress levels and social networks. One hundred and one participants were recruited either through the SO or Mencap. Data were collected through the completion of validated questionnaires by one to one interviews with the participants. Analysis revealed that self-esteem, quality of life, and stress were all significantly associated with SO involvement. Logistic regression analysis was used to explore whether scores on these variables were able to predict group membership. Self-esteem was found to be a significant predictor of group membership, those in the SO having the highest self-esteem. The findings provide further evidence of a positive association between sport involvement and increased psychological wellbeing, especially for those involved in the SO. The implications of these findings for practice and future research into the relationship between sport and psychological wellbeing within the learning disabled population are considered. Copyright © 2015 Elsevier Ltd. All rights reserved.
Marsh, Jackie; Bishop, Julia C.
This paper reports on a number of challenges faced in tracing contributors to research projects that were originally conducted many decades previously. The need to trace contributors in this way arises in projects which focus on involving research participants in previous studies who have not been maintained on a database, or with whom the…
Results of 1001 observing nights shed new light on our Galaxy  Summary A team of astronomers from Denmark, Switzerland and Sweden  has achieved a major breakthrough in our understanding of the Milky Way, the galaxy in which we live. After more than 1,000 nights of observations spread over 15 years, they have determined the spatial motions of more than 14,000 solar-like stars residing in the neighbourhood of the Sun. For the first time, the changing dynamics of the Milky Way since its birth can now be studied in detail and with a stellar sample sufficiently large to allow a sound analysis. The astronomers find that our home galaxy has led a much more turbulent and chaotic life than previously assumed. PR Photo 10a/04: Distribution on the sky of the observed stars. PR Photo 10b/04: Stars in the solar neigbourhood and the Milky Way galaxy (artist's view). PR Video Clip 04/04: The motions of the observed stars during the past 250 million years. Unknown history Home is the place we know best. But not so in the Milky Way - the galaxy in which we live. Our knowledge of our nearest stellar neighbours has long been seriously incomplete and - worse - skewed by prejudice concerning their behaviour. Stars were generally selected for observation because they were thought to be "interesting" in some sense, not because they were typical. This has resulted in a biased view of the evolution of our Galaxy. The Milky Way started out just after the Big Bang as one or more diffuse blobs of gas of almost pure hydrogen and helium. With time, it assembled into the flattened spiral galaxy which we inhabit today. Meanwhile, generation after generation of stars were formed, including our Sun some 4,700 million years ago. But how did all this really happen? Was it a rapid process? Was it violent or calm? When were all the heavier elements formed? How did the Milky Way change its composition and shape with time? Answers to these and many other questions are 'hot' topics for the
Muhammad Abid Malik; Guoyuan Sang
The current research investigates the notion that Chinese students are orally less involved in the classroom as compared to international students. Most of the previous research on this topic focuses on the Chinese students in English language classes or those studying in other countries where the language barrier and foreign culture might influence such behaviour. Using observations, this research compares two Chinese and two international classes in a Chinese university to investigate this ...