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Sample records for research involved semi-structured

  1. Getting involved in research.

    Science.gov (United States)

    Banner, Davina; Grant, Lyle G

    2011-01-01

    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.

  2. Systematic methodological review: developing a framework for a qualitative semi-structured interview guide.

    Science.gov (United States)

    Kallio, Hanna; Pietilä, Anna-Maija; Johnson, Martin; Kangasniemi, Mari

    2016-12-01

    To produce a framework for the development of a qualitative semi-structured interview guide. Rigorous data collection procedures fundamentally influence the results of studies. The semi-structured interview is a common data collection method, but methodological research on the development of a semi-structured interview guide is sparse. Systematic methodological review. We searched PubMed, CINAHL, Scopus and Web of Science for methodological papers on semi-structured interview guides from October 2004-September 2014. Having examined 2,703 titles and abstracts and 21 full texts, we finally selected 10 papers. We analysed the data using the qualitative content analysis method. Our analysis resulted in new synthesized knowledge on the development of a semi-structured interview guide, including five phases: (1) identifying the prerequisites for using semi-structured interviews; (2) retrieving and using previous knowledge; (3) formulating the preliminary semi-structured interview guide; (4) pilot testing the guide; and (5) presenting the complete semi-structured interview guide. Rigorous development of a qualitative semi-structured interview guide contributes to the objectivity and trustworthiness of studies and makes the results more plausible. Researchers should consider using this five-step process to develop a semi-structured interview guide and justify the decisions made during it. © 2016 John Wiley & Sons Ltd.

  3. Community Involvement in TB Research

    NARCIS (Netherlands)

    M. van der Werf (Marloes); S.G. Heumann (Silke); E.M.H. Mitchell

    2011-01-01

    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

  4. Ethics in research involving prisoners.

    Science.gov (United States)

    Pont, Jörg

    2008-01-01

    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.

  5. Situating and Constructing Diversity in Semi-Structured Interviews

    Directory of Open Access Journals (Sweden)

    Michele J. McIntosh

    2015-08-01

    Full Text Available Although semi-structured interviews (SSIs are used extensively in research, scant attention is given to their diversity, underlying assumptions, construction, and broad applications to qualitative and mixed-method research. In this three-part article, we discuss the following: (a how the SSI is situated historically including its evolution and diversification, (b the principles of constructing SSIs, and (c how SSIs are utilized as a stand-alone research method, and as strategy within a mixed-method design.

  6. "Only your blood can tell the story"--a qualitative research study using semi-structured interviews to explore the hepatitis B related knowledge, perceptions and experiences of remote dwelling Indigenous Australians and their health care providers in northern Australia.

    Science.gov (United States)

    Davies, Jane; Bukulatjpi, Sarah; Sharma, Suresh; Davis, Joshua; Johnston, Vanessa

    2014-11-28

    Hepatitis B is endemic in the Indigenous communities of the Northern Territory of Australia and significantly contributes to liver-related morbidity and mortality. It is recognised that low health literacy levels, different worldviews and English as a second language all contribute to the difficulties health workers often have in explaining biomedical health concepts, relevant to hepatitis B infection, to patients. The aim of this research project was to explore the knowledge, perceptions and experiences of remote dwelling Indigenous adults and their health care providers relating to hepatitis B infection with a view to using this as the evidence base to develop a culturally appropriate educational tool. The impetus for this project came from health clinic staff at a remote community in Arnhem Land in the Northern Territory, in partnership with a visiting specialist liver clinic from the Royal Darwin Hospital. Participants were clinic patients with hepatitis B (n = 12), community members (n = 9) and key informants (n = 13); 25 were Indigenous individuals.A participatory action research project design was used with purposive sampling to identify participants. Semi-structured interviews were undertaken to explore: current understanding of hepatitis B, desire for knowledge, and perspectives on how people could acquire the information needed. All individuals were offered the use of an interpreter. The data were examined using deductive and inductive thematic analysis. Low levels of biomedical knowledge about Hepatitis B, negative perceptions of Hepatitis B, communication (particularly language) and culture were the major themes that emerged from the data. Accurate concepts grounded in Indigenous culture such as "only your blood can tell the story" were present but accompanied by a feeling of disempowerment due to perceived lack of "medical" understanding, and informed partnerships between caregiver and patient. Culturally appropriate discussions in a

  7. Visual mining of semi-structured data

    CERN Multimedia

    CERN. Geneva; Posada, Jorge; Quartulli, Marco

    2013-01-01

    Background Vicomtech is visiting CERN to expose their activities and explore possible lines of collaboration. As part of the programme they will be offering a presentation, staged in three parts: Presentation of Vicomtech – Seán Gaines Descriptions of technologies and specialities – Dr. Jorge Posada Details on projects related to the development of visually-based algorithms for intelligent storage, processing, visualization and interaction with Big Data, for massive sources of information. – Dr. Marco Quartulli. The full programme to the visit is here Abstract Mining semi-structured data is fundamental for archive monitoring, understanding and exploitation. Typical analysis systems are based on a three-tiered architecture, in which efficient databases feed highly parallelised application servers that in turn feed client user interfaces. Yet the sharing of analysis, content identification and semantic level summarization tasks among the two bot...

  8. The impact of consumer involvement in research: an evaluation of consumer involvement in the London Primary Care Studies Programme.

    Science.gov (United States)

    Wyatt, Katrina; Carter, Mary; Mahtani, Vinita; Barnard, Angela; Hawton, Annie; Britten, Nicky

    2008-06-01

    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.

  9. Involving Nepali academics in health research

    DEFF Research Database (Denmark)

    Neupane, Dinesh; van Teijlingen, E; Khanal, V

    2013-01-01

    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....

  10. Parent Involvement in Homework: A Research Synthesis

    Science.gov (United States)

    Patall, Erika A.; Cooper, Harris; Robinson, Jorgianne Civey

    2008-01-01

    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)…

  11. Pharmacists' views on involvement in pharmacy practice research: Strategies for facilitating participation.

    Science.gov (United States)

    Armour, Carol; Brillant, Martha; Krass, Ines

    2007-01-01

    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.

  12. Pharmacists’ views on involvement in pharmacy practice research: Strategies for facilitating participation.

    Directory of Open Access Journals (Sweden)

    Armour C

    2007-06-01

    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

  13. Pediatric oncologists' attitudes towards involving adolescents in decision-making concerning research participation.

    Science.gov (United States)

    de Vries, Martine C; Wit, Jan M; Engberts, Dirk P; Kaspers, Gertjan J L; van Leeuwen, Evert

    2010-07-15

    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.

  14. Methodological issues involved in conducting qualitative research ...

    African Journals Online (AJOL)

    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 ...

  15. Patient involvement in research priorities (PIRE)

    DEFF Research Database (Denmark)

    Piil, Karin; Jarden, Mary

    2016-01-01

    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...

  16. Probability of major depression diagnostic classification using semi-structured versus fully structured diagnostic interviews.

    Science.gov (United States)

    Levis, Brooke; Benedetti, Andrea; Riehm, Kira E; Saadat, Nazanin; Levis, Alexander W; Azar, Marleine; Rice, Danielle B; Chiovitti, Matthew J; Sanchez, Tatiana A; Cuijpers, Pim; Gilbody, Simon; Ioannidis, John P A; Kloda, Lorie A; McMillan, Dean; Patten, Scott B; Shrier, Ian; Steele, Russell J; Ziegelstein, Roy C; Akena, Dickens H; Arroll, Bruce; Ayalon, Liat; Baradaran, Hamid R; Baron, Murray; Beraldi, Anna; Bombardier, Charles H; Butterworth, Peter; Carter, Gregory; Chagas, Marcos H; Chan, Juliana C N; Cholera, Rushina; Chowdhary, Neerja; Clover, Kerrie; Conwell, Yeates; de Man-van Ginkel, Janneke M; Delgadillo, Jaime; Fann, Jesse R; Fischer, Felix H; Fischler, Benjamin; Fung, Daniel; Gelaye, Bizu; Goodyear-Smith, Felicity; Greeno, Catherine G; Hall, Brian J; Hambridge, John; Harrison, Patricia A; Hegerl, Ulrich; Hides, Leanne; Hobfoll, Stevan E; Hudson, Marie; Hyphantis, Thomas; Inagaki, Masatoshi; Ismail, Khalida; Jetté, Nathalie; Khamseh, Mohammad E; Kiely, Kim M; Lamers, Femke; Liu, Shen-Ing; Lotrakul, Manote; Loureiro, Sonia R; Löwe, Bernd; Marsh, Laura; McGuire, Anthony; Mohd Sidik, Sherina; Munhoz, Tiago N; Muramatsu, Kumiko; Osório, Flávia L; Patel, Vikram; Pence, Brian W; Persoons, Philippe; Picardi, Angelo; Rooney, Alasdair G; Santos, Iná S; Shaaban, Juwita; Sidebottom, Abbey; Simning, Adam; Stafford, Lesley; Sung, Sharon; Tan, Pei Lin Lynnette; Turner, Alyna; van der Feltz-Cornelis, Christina M; van Weert, Henk C; Vöhringer, Paul A; White, Jennifer; Whooley, Mary A; Winkley, Kirsty; Yamada, Mitsuhiko; Zhang, Yuying; Thombs, Brett D

    2018-06-01

    Different diagnostic interviews are used as reference standards for major depression classification in research. Semi-structured interviews involve clinical judgement, whereas fully structured interviews are completely scripted. The Mini International Neuropsychiatric Interview (MINI), a brief fully structured interview, is also sometimes used. It is not known whether interview method is associated with probability of major depression classification.AimsTo evaluate the association between interview method and odds of major depression classification, controlling for depressive symptom scores and participant characteristics. Data collected for an individual participant data meta-analysis of Patient Health Questionnaire-9 (PHQ-9) diagnostic accuracy were analysed and binomial generalised linear mixed models were fit. A total of 17 158 participants (2287 with major depression) from 57 primary studies were analysed. Among fully structured interviews, odds of major depression were higher for the MINI compared with the Composite International Diagnostic Interview (CIDI) (odds ratio (OR) = 2.10; 95% CI = 1.15-3.87). Compared with semi-structured interviews, fully structured interviews (MINI excluded) were non-significantly more likely to classify participants with low-level depressive symptoms (PHQ-9 scores ≤6) as having major depression (OR = 3.13; 95% CI = 0.98-10.00), similarly likely for moderate-level symptoms (PHQ-9 scores 7-15) (OR = 0.96; 95% CI = 0.56-1.66) and significantly less likely for high-level symptoms (PHQ-9 scores ≥16) (OR = 0.50; 95% CI = 0.26-0.97). The MINI may identify more people as depressed than the CIDI, and semi-structured and fully structured interviews may not be interchangeable methods, but these results should be replicated.Declaration of interestDrs Jetté and Patten declare that they received a grant, outside the submitted work, from the Hotchkiss Brain Institute, which was jointly funded by the Institute and Pfizer. Pfizer was the

  17. NETMARK: A Schema-less Extension for Relational Databases for Managing Semi-structured Data Dynamically

    Science.gov (United States)

    Maluf, David A.; Tran, Peter B.

    2003-01-01

    Object-Relational database management system is an integrated hybrid cooperative approach to combine the best practices of both the relational model utilizing SQL queries and the object-oriented, semantic paradigm for supporting complex data creation. In this paper, a highly scalable, information on demand database framework, called NETMARK, is introduced. NETMARK takes advantages of the Oracle 8i object-relational database using physical addresses data types for very efficient keyword search of records spanning across both context and content. NETMARK was originally developed in early 2000 as a research and development prototype to solve the vast amounts of unstructured and semi-structured documents existing within NASA enterprises. Today, NETMARK is a flexible, high-throughput open database framework for managing, storing, and searching unstructured or semi-structured arbitrary hierarchal models, such as XML and HTML.

  18. The SQL++ Query Language: Configurable, Unifying and Semi-structured

    OpenAIRE

    Ong, Kian Win; Papakonstantinou, Yannis; Vernoux, Romain

    2014-01-01

    NoSQL databases support semi-structured data, typically modeled as JSON. They also provide limited (but expanding) query languages. Their idiomatic, non-SQL language constructs, the many variations, and the lack of formal semantics inhibit deep understanding of the query languages, and also impede progress towards clean, powerful, declarative query languages. This paper specifies the syntax and semantics of SQL++, which is applicable to both JSON native stores and SQL databases. The SQL++ sem...

  19. Lay involvement in the analysis of qualitative data in health services research: a descriptive study.

    Science.gov (United States)

    Garfield, S; Jheeta, S; Husson, F; Jacklin, A; Bischler, A; Norton, C; Franklin, B D

    2016-01-01

    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

  20. Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: Results of a survey

    Directory of Open Access Journals (Sweden)

    Vale Claire L

    2012-01-01

    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

  1. Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: results of a survey.

    Science.gov (United States)

    Vale, Claire L; Thompson, Lindsay C; Murphy, Claire; Forcat, Silvia; Hanley, Bec

    2012-01-13

    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

  2. Bioethical Principles of Biomedical Research Involving Animals

    Directory of Open Access Journals (Sweden)

    Bakir Mehić

    2011-08-01

    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[1].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[2]. 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

  3. [The semi-structured interview: at the border of public health and anthropology].

    Science.gov (United States)

    Imbert, Geneviève

    2010-09-01

    The interview is the tool for data collection the most used in the context of research conducted in health sciences, human sciences and social sciences. After completing some generalities about the different types of interviews, the focus is on semi-structured interview during its various stages including the processing and data analysis, this from the return of a lived experience of research in work on the border of the field of public health and that of anthropology. If this approach and contextualized the semistructured interview may a priori appear specific, the reader interested in the development of qualitative research in a humanistic perspective and the implementation of multidisciplinary strategies to ascertain its universal character.

  4. Involving the public in mental health and learning disability research: Can we, should we, do we?

    Science.gov (United States)

    Paul, C; Holt, J

    2017-10-01

    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

  5. Research Education: Perspectives and subjective processes involved in educational research

    Directory of Open Access Journals (Sweden)

    Harm H. Tillema

    2009-10-01

    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.

  6. Ethical issues in neonatal research involving human subjects.

    Science.gov (United States)

    Fleischman, Alan R

    2016-06-01

    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.

  7. Partnering Research Involving Mentoring and Education (PRIME) in Prostate Cancer

    National Research Council Canada - National Science Library

    Price, Marva M

    2006-01-01

    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...

  8. Partnering Research Involving Mentoring and Education (PRIME) in Prostate Cancer

    National Research Council Canada - National Science Library

    Price, Marva M

    2008-01-01

    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...

  9. Partnering Research Involving Mentoring and Education (PRIME) in Prostate Cancer

    National Research Council Canada - National Science Library

    Price, Marva M

    2007-01-01

    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...

  10. Accessible Article: Involving People with Learning Disabilities in Research

    Science.gov (United States)

    Garbutt, Ruth; Tattersall, John; Dunn, Jo; Boycott-Garnett, Rachel

    2010-01-01

    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.)

  11. Enhancing public involvement in assistive technology design research.

    Science.gov (United States)

    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

    2015-05-01

    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.

  12. Salutogenic service user involvement in nursing research: a case study.

    Science.gov (United States)

    Mjøsund, Nina Helen; Vinje, Hege Forbech; Eriksson, Monica; Haaland-Øverby, Mette; Jensen, Sven Liang; Kjus, Solveig; Norheim, Irene; Portaasen, Inger-Lill; Espnes, Geir Arild

    2018-05-12

    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.

  13. Strata: typed semi-structured data in DokuWiki

    NARCIS (Netherlands)

    Wanders, B.; te Brinke, Steven

    2014-01-01

    A semantic wiki is a wiki that has a model of the knowledge contained in its pages. Currently, semantic wikis are not adopted by a large user base, because most implementations are research prototypes that implement their own wiki engine. To increase familiarity with semantic wikis and quick

  14. Barriers and incentives of CCS deployment in China. Results from semi-structured interviews

    International Nuclear Information System (INIS)

    Dapeng, Liang; Weiwei, Wu

    2009-01-01

    From March to July of 2008, we conducted semi-structured interviews with 31 experts from the Chinese government, scientific institutes and industrial sectors. This paper summarizes the experts' opinions and draws conclusions about four crucial aspects that influence CO 2 capture and storage (CCS) deployment in China: technology research and experience accumulation, finance support, market development and policy and system. According to interviews result, technological improvement is necessary to cut down on CO 2 capture cost and decrease technological uncertainty. Then, to make some rational policies and systems, with elements such as a carbon tax and clean electricity pricing, to drive power plants to adopt CO 2 capture technology. Furthermore, financial incentive in both the long term and the short term, such as subsidies and CDM, will be important for CCS incentives, encouraging enterprises' enthusiasm for CCS and their capacity to enact it. Lastly, CCS deployment should be conducted under a market-oriented framework in the long term, so a business model and niche market deployment should be considered in advance. Among these aspects, policy and system is more complex than other three aspects, to resolve this obstacle, the innovation on electricity market and government decision model for climate change is crucial. (author)

  15. A Reliable Sounding Board: Parent Involvement in Students' Academic and Career Decision Making

    Science.gov (United States)

    Simmons, Andrew N.

    2008-01-01

    With concern over parental involvement in students' academic lives on the rise, research is needed to provide guidance for advisors and parents. In this article, student-parent interactions about academic and career decisions are examined. Data come from the Brown University Office of Institutional Research and semi-structured interviews with…

  16. Ethical issues in research involving children and young people

    International Nuclear Information System (INIS)

    Scally, Andy

    2014-01-01

    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

  17. Students' Involvement in Faculty Research: Ethical and Methodological Issues

    Directory of Open Access Journals (Sweden)

    Linda M. Ferguson

    2004-12-01

    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.

  18. The modern Russian teacher: Studying awareness with the use of the semi-structured interview

    Directory of Open Access Journals (Sweden)

    Ilyushin, Leonid S.

    2017-03-01

    Full Text Available This research is based on the ideas of Humanistic-Existential Psychology, a positive approach to personal growth, and modern educational concepts concerning the dynamics of professional and social identity in the stratum of secondary and primary school teachers. The goal of the study is to get an objective picture of the professional and personal changes among Russian teachers under the conditions of school modernization. We offer a detailed model of the semi-structured interview with modern teachers, in combination with observation. The interview consists of 63 questions divided into 9 topics, and deals with issues related to what their professional activities mean to the teachers; the teachers’ evaluation of professional dynamics; their attitude toward various aspects of professional life; and their general world outlook and values. We also briefly describe a pre-interview “warm-up” strategy. This stage of the research resulted in the successful pilot use of the research methodology, and data sufficient to evaluate the initial trends of the analysis of all the data. The study’s main conclusions concern the observation technique, which offers a significant increase in the potential of the interview method, mainly through providing the ability to interpret non-verbal reactions, the level of openness, and the teacher’s trust in the dialogue. Moreover, we must note that, when we asked teachers to answer complicated written questions, their answers, judgments, and arguments varied greatly, regardless of their professional and personal characteristics (employment history, qualification category, the subject they teach, type of school, etc.

  19. Involving lay People in Research and Professional Development Through Gaming

    DEFF Research Database (Denmark)

    Magnussen, Rikke

    2017-01-01

    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...

  20. Committees for Ethics in Research involving human subjects.

    Science.gov (United States)

    Hossne, William Saad; Vieira, Sonia; De Freitas, Corina Bontempo Duca

    2008-01-01

    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.

  1. Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries

    Directory of Open Access Journals (Sweden)

    LeGrandeur Jane

    2010-03-01

    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

  2. Start Time and Duration Distribution Estimation in Semi-Structured Processes

    NARCIS (Netherlands)

    Wombacher, Andreas; Iacob, Maria Eugenia

    Semi-structured processes are business workflows, where the execution of the workflow is not completely controlled by a workflow engine, i.e., an implementation of a formal workflow model. Examples are workflows where actors potentially have interaction with customers reporting the result of the

  3. Start time and duration distribution estimation in semi-structured processes

    NARCIS (Netherlands)

    Wombacher, Andreas; Iacob, Maria Eugenia

    Semi-structured processes are business workflows, where the execution of the workflow is not completely controlled by a workflow engine, i.e., an implementation of a formal workflow model. Examples are workflows where actors potentially have interaction with customers reporting the result of the

  4. Why seek treatment for temporomandibular disorder pain complaints? A study based on semi-structured interviews

    NARCIS (Netherlands)

    Rollman, A.; Gorter, R.C.; Visscher, C.M.; Naeije, M.

    2013-01-01

    AIMS: To identify potential predictors of self-reported sleep bruxism (SB) within children's family and school environments. METHODS: A Aims: To assess possible differences between care seekers and non-care seekers with temporomandibular disorder (TMD) pain complaints, by using semi-structured

  5. Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement)

    DEFF Research Database (Denmark)

    Gove, Dianne; Diaz-Ponce, Ana; Georges, Jean

    2018-01-01

    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...

  6. The benefits of patient involvement for translational research

    NARCIS (Netherlands)

    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

  7. The Benefits of Patient Involvement for Translational Research

    NARCIS (Netherlands)

    Scheer, L. van der; Garcia, E.; Laan, A.L. van der; Burg, S. van der; Boenink, M.

    2017-01-01

    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

  8. Student involvement and research for the nuclear industry

    International Nuclear Information System (INIS)

    Ginniff, M.E.

    1980-01-01

    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)

  9. Experiences of living with dementia: qualitative content analysis of semi-structured interviews.

    Science.gov (United States)

    Mazaheri, Monir; Eriksson, Lars E; Heikkilä, Kristiina; Nasrabadi, Alireza Nikbakht; Ekman, Sirkka-Liisa; Sunvisson, Helena

    2013-11-01

    To describe people's experiences of living with dementia in Iran. A knowledge gap exists regarding the experiences of living with dementia in nonWestern contexts. This gap may be especially apparent within the Iranian context, where dementia research is relatively new. Deeper understanding about context-related experiences of dementia is a prerequisite for nurses' ability to provide adequate and meaningful care. Qualitative, cross-sectional design. Qualitative content analysis of semi-structured interviews with people living with dementia in urban Iran (six women and nine men; 60-87 years old). The participants experienced their condition as a state of forgetfulness that was accompanied by losses and dependency on others. They wanted to feel good about themselves and feel important, but they continually struggled with matters such as a loss of accountability, feelings of futility and the frustration of others. Economic dependency and a lack of economic resources were sources of feelings of futility. Experiences of living with dementia in Iran included a substantial struggle to stay connected to the social world and to deal with dramatic life changes, aspects of living with dementia that seem to be universal. However, the feelings of financial burden and the experience of being nagged for their shortfalls by family members have seldom been described in other studies and seem to represent a cultural aspect of their experience. The results of the study call for further nursing efforts in supporting people living with dementia in their struggle with their altered lives and in retaining their connections to everyday life. Furthermore, their family members might benefit from specific nursing interventions including information about dementia and advice on how to help the family members with dementia to interact with others while exercising their individual strengths. © 2013 John Wiley & Sons Ltd.

  10. The Greater Involvement of People Living with AIDS principle: theory versus practice in Ontario's HIV/AIDS community-based research sector.

    Science.gov (United States)

    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

    2008-07-01

    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.

  11. Participatory action research: involving students in parent education.

    Science.gov (United States)

    Fowler, Cathrine; Wu, Cynthia; Lam, Winsome

    2014-01-01

    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.

  12. Regulating hematology/oncology research involving human participants.

    Science.gov (United States)

    Kapp, Marshall B

    2002-12-01

    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 [47]. 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 [48].

  13. Strategies for involving undergraduates in mentored research (Invited)

    Science.gov (United States)

    Marin-Spiotta, E.

    2013-12-01

    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

  14. Experiences of service users involved in recruitment for nursing courses: A phenomenological research study.

    Science.gov (United States)

    Stevens, Katie; Bernal, Cathy; Devis, Kate; Southgate, Andrew

    2017-11-01

    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.

  15. INVOLVING CHILDREN AND THEIR PARENTS IN RESEARCH DESIGN.

    Science.gov (United States)

    Hibberd, Suzannah

    2016-09-01

    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

  16. Increasing User Involvement in Health Care and Health Research Simultaneously

    DEFF Research Database (Denmark)

    Kaltoft, Mette Kjer; Nielsen, Jesper Bo; Salkeld, Glenn

    2014-01-01

    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...

  17. Monetary Channels in Brazil through the Lens of a Semi-Structural Model

    OpenAIRE

    André Minella; Nelson F. Souza-Sobrinho

    2009-01-01

    We develop and estimate a medium-size, semi-structural model for Brazil's economy during the inflation targeting period. The model captures key features of the economy, and allows us to investigate the transmission mechanisms of monetary policy. We decompose the monetary channels into household interest rate, firm interest rate, and exchange rate channels. We find that the household interest rate channel plays the most important role in explaining output dynamics after a monetary policy shock...

  18. People involved in radiation research and protection - an historical perspective

    International Nuclear Information System (INIS)

    Toussaint, L.F.

    2010-01-01

    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.

  19. Trends in research involving human beings in Brazil

    Directory of Open Access Journals (Sweden)

    Ricardo Eccard da Silva

    2015-02-01

    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.

  20. Embedding a Recovery Orientation into Neuroscience Research: Involving People with a Lived Experience in Research Activity.

    Science.gov (United States)

    Stratford, Anthony; Brophy, Lisa; Castle, David; Harvey, Carol; Robertson, Joanne; Corlett, Philip; Davidson, Larry; Everall, Ian

    2016-03-01

    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.

  1. Conflicts of interest in research involving human beings.

    Science.gov (United States)

    Greco, Dirceu; Diniz, Nilza Maria

    2008-01-01

    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

  2. Assessment of Semi-Structured Clinical Interview for Mobile ‎Phone ‎Addiction Disorder

    Directory of Open Access Journals (Sweden)

    Seyyed Salman Alavi

    2016-06-01

    Full Text Available Objective: The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR classified mobile phone addiction disorder under ‎‎"impulse control disorder not elsewhere classified". This study surveyed the ‎diagnostic criteria of DSM-IV-TR for the diagnosis of mobile phone ‎addiction in correspondence with Iranian society and culture.‎Method: Two hundred fifty students of Tehran universities were entered into this ‎descriptive-analytical and cross-sectional study. Quota sampling method ‎was used. At first, semi- structured clinical interview (based on DSM-IV-‎TR was performed for all the cases, and another specialist re-evaluated the ‎interviews. Data were analyzed using content validity, inter-scorer reliability (Kappa coefficient and test-retest via SPSS18 software.Results: The content validity of the semi- structured clinical interview matched the ‎DSM –IV-TR criteria for behavioral addiction. Moreover, their content was ‎appropriate, and two items, including "SMS pathological use" and "High ‎monthly cost of using the mobile phone” were added to promote its validity. ‎Internal reliability (Kappa and test –retest reliability were 0.55 and r = 0.4 ‎‎(p<0. 01 respectively.‎Conclusion: The results of this study revealed that semi- structured diagnostic criteria of ‎DSM-IV-TR are valid and reliable for diagnosing mobile phone addiction, ‎and this instrument is an effective tool to diagnose this disorder.‎

  3. The use of semi-structured interviews for the characterisation of farmer irrigation practices

    Science.gov (United States)

    O'Keeffe, Jimmy; Buytaert, Wouter; Mijic, Ana; Brozović, Nicholas; Sinha, Rajiv

    2016-05-01

    For the development of sustainable and realistic water security, generating information on the behaviours, characteristics, and drivers of users, as well as on the resource itself, is essential. In this paper we present a methodology for collecting qualitative and quantitative data on water use practices through semi-structured interviews. This approach facilitates the collection of detailed information on actors' decisions in a convenient and cost-effective manner. Semi-structured interviews are organised around a topic guide, which helps lead the conversation in a standardised way while allowing sufficient opportunity for relevant issues to emerge. In addition, they can be used to obtain certain types of quantitative data. While not as accurate as direct measurements, they can provide useful information on local practices and users' insights. We present an application of the methodology on farmer water use in two districts in the state of Uttar Pradesh in northern India. By means of 100 farmer interviews, information was collected on various aspects of irrigation practices, including irrigation water volumes, irrigation cost, water source, and their spatial variability. Statistical analyses of the information, along with data visualisation, are also presented, indicating a significant variation in irrigation practices both within and between districts. Our application shows that semi-structured interviews are an effective and efficient method of collecting both qualitative and quantitative information for the assessment of drivers, behaviours, and their outcomes in a data-scarce region. The collection of this type of data could significantly improve insights on water resources, leading to more realistic management options and increased water security in the future.

  4. Patient Involvement in Safe Delivery: A Qualitative Study

    OpenAIRE

    Olfati, Forozun; Asefzadeh, Saeid; Changizi, Nasrin; Keramat, Afsaneh; Yunesian, Masud

    2015-01-01

    Introduction: Patient involvement in safe delivery planning is considered important yet not widely practiced. The present study aimed at identifythe factors that affect patient involvementin safe delivery, as recommended by parturient women. Methods: This study was part of a qualitative research conducted by content analysis method and purposive sampling in 2013. The data were collected through 63 semi-structured interviews in4 hospitalsand analyzed using thematic content analysis. The partic...

  5. What Difference Does Patient and Public Involvement Make and What Are Its Pathways to Impact? Qualitative Study of Patients and Researchers from a Cohort of Randomised Clinical Trials.

    Directory of Open Access Journals (Sweden)

    Louise Dudley

    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.

  6. Assessment of Semi-Structured Clinical Interview for Mobile Phone Addiction Disorder.

    Science.gov (United States)

    Alavi, Seyyed Salman; Mohammadi, Mohammad Reza; Jannatifard, Fereshteh; Mohammadi Kalhori, Soroush; Sepahbodi, Ghazal; BabaReisi, Mohammad; Sajedi, Sahar; Farshchi, Mojtaba; KhodaKarami, Rasul; Hatami Kasvaee, Vahid

    2016-04-01

    The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) classified mobile phone addiction disorder under "impulse control disorder not elsewhere classified". This study surveyed the diagnostic criteria of DSM-IV-TR for the diagnosis of mobile phone addiction in correspondence with Iranian society and culture. Two hundred fifty students of Tehran universities were entered into this descriptive-analytical and cross-sectional study. Quota sampling method was used. At first, semi- structured clinical interview (based on DSM-IV-TR) was performed for all the cases, and another specialist reevaluated the interviews. Data were analyzed using content validity, inter-scorer reliability (Kappa coefficient) and test-retest via SPSS18 software. The content validity of the semi- structured clinical interview matched the DSM-IV-TR criteria for behavioral addiction. Moreover, their content was appropriate, and two items, including "SMS pathological use" and "High monthly cost of using the mobile phone" were added to promote its validity. Internal reliability (Kappa) and test-retest reliability were 0.55 and r = 0.4 (pphone addiction, and this instrument is an effective tool to diagnose this disorder.

  7. Assessment of Semi-Structured Clinical Interview for Mobile Phone Addiction Disorder

    Science.gov (United States)

    Alavi, Seyyed Salman; Jannatifard, Fereshteh; Mohammadi Kalhori, Soroush; Sepahbodi, Ghazal; BabaReisi, Mohammad; Sajedi, Sahar; Farshchi, Mojtaba; KhodaKarami, Rasul; Hatami Kasvaee, Vahid

    2016-01-01

    Objective: The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR) classified mobile phone addiction disorder under “impulse control disorder not elsewhere classified”. This study surveyed the diagnostic criteria of DSM-IV-TR for the diagnosis of mobile phone addiction in correspondence with Iranian society and culture. Method: Two hundred fifty students of Tehran universities were entered into this descriptive-analytical and cross-sectional study. Quota sampling method was used. At first, semi- structured clinical interview (based on DSM-IV-TR) was performed for all the cases, and another specialist reevaluated the interviews. Data were analyzed using content validity, inter-scorer reliability (Kappa coefficient) and test-retest via SPSS18 software. Results: The content validity of the semi- structured clinical interview matched the DSM–IV-TR criteria for behavioral addiction. Moreover, their content was appropriate, and two items, including “SMS pathological use” and “High monthly cost of using the mobile phone” were added to promote its validity. Internal reliability (Kappa) and test–retest reliability were 0.55 and r = 0.4 (pmobile phone addiction, and this instrument is an effective tool to diagnose this disorder. PMID:27437008

  8. Semi-structured Interview Measure of Stigma (SIMS) in psychosis: Assessment of psychometric properties.

    Science.gov (United States)

    Wood, Lisa; Burke, Eilish; Byrne, Rory; Enache, Gabriela; Morrison, Anthony P

    2016-10-01

    Stigma is a significant difficulty for people who experience psychosis. To date, there have been no outcome measures developed to examine stigma exclusively in people with psychosis. The aim of this study was develop and validate a semi-structured interview measure of stigma (SIMS) in psychosis. The SIMS is an eleven item measure of stigma developed in consultation with service users who have experienced psychosis. 79 participants with experience of psychosis were recruited for the purposes of this study. They were administered the SIMS alongside a battery of other relevant outcome measures to examine reliability and validity. A one-factor solution was identified for the SIMS which encompassed all ten rateable items. The measure met all reliability and validity criteria and illustrated good internal consistency, inter-rater reliability, test retest reliability, criterion validity, construct validity, sensitivity to change and had no floor or ceiling effects. The SIMS is a reliable and valid measure of stigma in psychosis. It may be more engaging and acceptable than other stigma measures due to its semi-structured interview format. Crown Copyright © 2016. Published by Elsevier B.V. All rights reserved.

  9. Children with Autism Understand Indirect Speech Acts: Evidence from a Semi-Structured Act-Out Task.

    Directory of Open Access Journals (Sweden)

    Mikhail Kissine

    Full Text Available Children with Autism Spectrum Disorder are often said to present a global pragmatic impairment. However, there is some observational evidence that context-based comprehension of indirect requests may be preserved in autism. In order to provide experimental confirmation to this hypothesis, indirect speech act comprehension was tested in a group of 15 children with autism between 7 and 12 years and a group of 20 typically developing children between 2:7 and 3:6 years. The aim of the study was to determine whether children with autism can display genuinely contextual understanding of indirect requests. The experiment consisted of a three-pronged semi-structured task involving Mr Potato Head. In the first phase a declarative sentence was uttered by one adult as an instruction to put a garment on a Mr Potato Head toy; in the second the same sentence was uttered as a comment on a picture by another speaker; in the third phase the same sentence was uttered as a comment on a picture by the first speaker. Children with autism complied with the indirect request in the first phase and demonstrated the capacity to inhibit the directive interpretation in phases 2 and 3. TD children had some difficulty in understanding the indirect instruction in phase 1. These results call for a more nuanced view of pragmatic dysfunction in autism.

  10. Clinical research data sharing: what an open science world means for researchers involved in evidence synthesis.

    Science.gov (United States)

    Ross, Joseph S

    2016-09-20

    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.

  11. Building large collections of Chinese and English medical terms from semi-structured and encyclopedia websites.

    Science.gov (United States)

    Xu, Yan; Wang, Yining; Sun, Jian-Tao; Zhang, Jianwen; Tsujii, Junichi; Chang, Eric

    2013-01-01

    To build large collections of medical terms from semi-structured information sources (e.g. tables, lists, etc.) and encyclopedia sites on the web. The terms are classified into the three semantic categories, Medical Problems, Medications, and Medical Tests, which were used in i2b2 challenge tasks. We developed two systems, one for Chinese and another for English terms. The two systems share the same methodology and use the same software with minimum language dependent parts. We produced large collections of terms by exploiting billions of semi-structured information sources and encyclopedia sites on the Web. The standard performance metric of recall (R) is extended to three different types of Recall to take the surface variability of terms into consideration. They are Surface Recall (R(S)), Object Recall (R(O)), and Surface Head recall (R(H)). We use two test sets for Chinese. For English, we use a collection of terms in the 2010 i2b2 text. Two collections of terms, one for English and the other for Chinese, have been created. The terms in these collections are classified as either of Medical Problems, Medications, or Medical Tests in the i2b2 challenge tasks. The English collection contains 49,249 (Problems), 89,591 (Medications) and 25,107 (Tests) terms, while the Chinese one contains 66,780 (Problems), 101,025 (Medications), and 15,032 (Tests) terms. The proposed method of constructing a large collection of medical terms is both efficient and effective, and, most of all, independent of language. The collections will be made publicly available.

  12. Farming Systems Involving Fruit Crops Production And Research In ...

    African Journals Online (AJOL)

    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 ...

  13. Involving people with early-stage dementia in qualitative research about their lifeworld perspectives

    DEFF Research Database (Denmark)

    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...

  14. The use of semi-structured interviews for collection of qualitative and quantitative data in hydrological studies

    Science.gov (United States)

    O'Keeffe, Jimmy; Buytaert, Wouter; Mijic, Ana; Brozovic, Nicholas

    2015-04-01

    To build an accurate, robust understanding of the environment, it is important to not only collect information describing its physical characteristics, but also the drivers which influence it. As environmental change, from increasing CO2 levels to decreasing water levels, is often heavily influenced by human activity, gathering information on anthropogenic as well as environmental variables is extremely important. This can mean collecting qualitative, as well as quantitative information. In reality studies are often bound by financial and time constraints, limiting the depth and detail of the research. It is up to the researcher to determine what the best methodology to answer the research questions is likely to be. Here we present a methodology of collecting qualitative and quantitative information in tandem for hydrological studies through the use of semi-structured interviews. This is applied to a case study in two districts of Uttar Pradesh, North India, one of the most intensely irrigated areas of the world. Here, decreasing water levels exacerbated by unchecked water abstraction, an expanding population and government subsidies, have put the long term resilience of the farming population in doubt. Through random selection of study locations, combined with convenience sampling of the participants therein, we show how the data collected can provide valuable insight into the drivers which have led to the current water scenario. We also show how reliable quantitative information can, using the same methodology, be effectively and efficiently extracted for modelling purposes, which along with developing an understanding of the characteristics of the environment is vital in coming up with realistic and sustainable solutions for water resource management in the future.

  15. Ethical issues in Alzheimer's disease research involving human subjects.

    Science.gov (United States)

    Davis, Dena S

    2017-12-01

    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.

  16. Clinical research involving minors in international and serbian regulations.

    Science.gov (United States)

    Planojević, Nina; Zivojinović, Dragica

    2013-07-01

    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.

  17. Improving industrial designers work process by involving user research

    DEFF Research Database (Denmark)

    Dai, Zheng; Ómarsson, Ólafur

    2011-01-01

    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...

  18. TOXICOLOGICAL RESEARCH INVOLVING HUMANS: ETHICAL AND REGULATORY CONSIDERATIONS

    Science.gov (United States)

    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...

  19. Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya

    Science.gov (United States)

    Jao, Irene; Kombe, Francis; Mwalukore, Salim; Bull, Susan; Parker, Michael; Kamuya, Dorcas; Molyneux, Sassy

    2015-01-01

    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

  20. A semi-structured English oral proficiency test for certification of teachers in South Africa

    Directory of Open Access Journals (Sweden)

    Carol A. Puhl

    2013-02-01

    Full Text Available South Africa has eleven official languages, but English is by far the most commonly used medium of instruction in schools. It is therefore essential that the English proficiency of preservice teachers be accurately assessed by means of a valid, reliable and feasible assessment instrument. As there are so many tertiary institutions responsible for teacher certification in the country, standards of oral assessment vary widely. This paper describes a semi-structured oral proficiency test, designed to meet these needs. Possibilities for further development of the test are explored Suid-Afrika erken elf amptelike tale, maar Engels is die medium wat verreweg die meeste in skole gebruik word Dit is dus noodsaaklik dat onderwysstudente se taalvaardigheid in Engels akkuraat gemeet moet kan word dm. v. 'n geldige, betroubare en toepaslike meetinstrument. Die feit dat so baie tersiere inrigtings in Suid-Afrika betrokke is by die sertifisering van onderwysers, lei onvermydelik tot groot skommelinge in standaarde. Hierdie artikel beskryf 'n semigestruktureerde mondelinge taalvaardigheidstoets wat ontwikkel is om in die behoeftes te voorsien. Moontlikhede vir die verdere ontwikkeling van die toets word ondersoek.

  1. Situational awareness for unmanned ground vehicles in semi-structured environments

    Science.gov (United States)

    Goodsell, Thomas G.; Snorrason, Magnus; Stevens, Mark R.

    2002-07-01

    Situational Awareness (SA) is a critical component of effective autonomous vehicles, reducing operator workload and allowing an operator to command multiple vehicles or simultaneously perform other tasks. Our Scene Estimation & Situational Awareness Mapping Engine (SESAME) provides SA for mobile robots in semi-structured scenes, such as parking lots and city streets. SESAME autonomously builds volumetric models for scene analysis. For example, a SES-AME equipped robot can build a low-resolution 3-D model of a row of cars, then approach a specific car and build a high-resolution model from a few stereo snapshots. The model can be used onboard to determine the type of car and locate its license plate, or the model can be segmented out and sent back to an operator who can view it from different viewpoints. As new views of the scene are obtained, the model is updated and changes are tracked (such as cars arriving or departing). Since the robot's position must be accurately known, SESAME also has automated techniques for deter-mining the position and orientation of the camera (and hence, robot) with respect to existing maps. This paper presents an overview of the SESAME architecture and algorithms, including our model generation algorithm.

  2. Incremental Ontology-Based Extraction and Alignment in Semi-structured Documents

    Science.gov (United States)

    Thiam, Mouhamadou; Bennacer, Nacéra; Pernelle, Nathalie; Lô, Moussa

    SHIRIis an ontology-based system for integration of semi-structured documents related to a specific domain. The system’s purpose is to allow users to access to relevant parts of documents as answers to their queries. SHIRI uses RDF/OWL for representation of resources and SPARQL for their querying. It relies on an automatic, unsupervised and ontology-driven approach for extraction, alignment and semantic annotation of tagged elements of documents. In this paper, we focus on the Extract-Align algorithm which exploits a set of named entity and term patterns to extract term candidates to be aligned with the ontology. It proceeds in an incremental manner in order to populate the ontology with terms describing instances of the domain and to reduce the access to extern resources such as Web. We experiment it on a HTML corpus related to call for papers in computer science and the results that we obtain are very promising. These results show how the incremental behaviour of Extract-Align algorithm enriches the ontology and the number of terms (or named entities) aligned directly with the ontology increases.

  3. Semi-structured interview is a reliable and feasible tool for selection of doctors for general practice specialist training

    DEFF Research Database (Denmark)

    Isaksen, Jesper; Hertel, Niels Thomas; Kjær, Niels Kristian

    2013-01-01

    In order to optimise the selection process for admission to specialist training in family medicine, we developed a new design for structured applications and selection interviews. The design contains semi-structured interviews, which combine individualised elements from the applications...... with standardised behaviour-based questions. This paper describes the design of the tool, and offers reflections concerning its acceptability, reliability and feasibility....

  4. Communicating Research Through Student Involvement in Phenological Investigations

    Science.gov (United States)

    Sparrow, E. B.; Kopplin, M.; Gazal, R. M.; Robin, J. H.; Boger, R. A.

    2011-12-01

    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

  5. Research Involving Health Providers and Managers: Ethical Issues Faced by Researchers Conducting Diverse Health Policy and Systems Research in Kenya.

    Science.gov (United States)

    Molyneux, Sassy; Tsofa, Benjamin; Barasa, Edwine; Nyikuri, Mary Muyoka; Waweru, Evelyn Wanjiku; Goodman, Catherine; Gilson, Lucy

    2016-12-01

    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.

  6. Involving disabled children and young people as partners in research: a systematic review.

    Science.gov (United States)

    Bailey, S; Boddy, K; Briscoe, S; Morris, C

    2015-07-01

    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

  7. Status, challenges and facilitators of consumer involvement in Australian health and medical research

    Directory of Open Access Journals (Sweden)

    Girgis Afaf

    2010-11-01

    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.

  8. Models and impact of patient and public involvement in studies carried out by the Medical Research Council Clinical Trials Unit at University College London: findings from ten case studies.

    Science.gov (United States)

    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

    2016-07-29

    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.

  9. Patient involvement in research programming and implementation: a responsive evaluation of the Dialogue Model for research agenda setting

    NARCIS (Netherlands)

    Abma, T.A.; Pittens, C.A.C.M.; Visse, M.; Elberse, J.E.; Broerse, J.E.W.

    2015-01-01

    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

  10. A little more conversation please? Qualitative study of researchers' and patients' interview accounts of training for patient and public involvement in clinical trials.

    Science.gov (United States)

    Dudley, Louise; Gamble, Carrol; Allam, Alison; Bell, Philip; Buck, Deborah; Goodare, Heather; Hanley, Bec; Preston, Jennifer; Walker, Alison; Williamson, Paula; Young, Bridget

    2015-04-27

    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

  11. E-Learning: A Means to Increase Learner Involvement in Research

    Science.gov (United States)

    de Beer, Marie; Mason, Roger B.

    2014-01-01

    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…

  12. 75 FR 62738 - Revisions to EPA's Rule on Protections for Subjects in Human Research Involving Pesticides...

    Science.gov (United States)

    2010-10-13

    ... 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...

  13. Consumer and community involvement in health and medical research: evaluation by online survey of Australian training workshops for researchers.

    Science.gov (United States)

    McKenzie, Anne; Alpers, Kirsten; Heyworth, Jane; Phuong, Cindy; Hanley, Bec

    2016-01-01

    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

  14. Power to the people: To what extent has public involvement in applied health research achieved this?

    Science.gov (United States)

    Green, Gill

    2016-01-01

    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

  15. Involving users with learning difficulties in health improvement: lessons from inclusive learning disability research.

    Science.gov (United States)

    Walmsley, Jan

    2004-03-01

    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.

  16. Methods for Involving Older People in Health Research-A Review of the Literature.

    Science.gov (United States)

    Schilling, Imke; Gerhardus, Ansgar

    2017-11-29

    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.

  17. HPV vaccine decision making in pediatric primary care: a semi-structured interview study

    Directory of Open Access Journals (Sweden)

    Feemster Kristen A

    2011-08-01

    Full Text Available Abstract Background Despite national recommendations, as of 2009 human papillomavirus (HPV vaccination rates were low with Methods Between March and June, 2010, we conducted qualitative interviews with 20 adolescent-mother-clinician triads (60 individual interviews directly after a preventive visit with the initial HPV vaccine due. Interviews followed a guide based on published HPV literature, involved 9 practices, and continued until saturation of the primary themes was achieved. Purposive sampling balanced adolescent ages and practice type (urban resident teaching versus non-teaching. Using a modified grounded theory approach, we analyzed data with NVivo8 software both within and across triads to generate primary themes. Results The study population was comprised of 20 mothers (12 Black, 9 Conclusions Programs to improve HPV vaccine delivery in primary care should focus on promoting effective parent-clinician communication. Research is needed to evaluate strategies to help clinicians engage reluctant parents and passive teens in discussion and measure the impact of distinct clinician decision making approaches on HPV vaccine delivery.

  18. Can the impact of public involvement on research be evaluated? A mixed methods study.

    Science.gov (United States)

    Barber, Rosemary; Boote, Jonathan D; Parry, Glenys D; Cooper, Cindy L; Yeeles, Philippa; Cook, Sarah

    2012-09-01

      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.

  19. Can the impact of public involvement on research be evaluated? A mixed methods study

    Science.gov (United States)

    Barber, Rosemary; Boote, Jonathan D; Parry, Glenys D; Cooper, Cindy L; Yeeles, Philippa; Cook, Sarah

    2011-01-01

    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

  20. Research Attitudes and Involvement among Medical Students and Students of Allied Health Occupations.

    Science.gov (United States)

    Delin, Catherine R.

    1994-01-01

    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…

  1. Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis.

    Science.gov (United States)

    Tuffrey-Wijne, Irene; Butler, Gary

    2010-06-01

    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.

  2. Consumer and community involvement in health and medical research: evaluation by online survey of Australian training workshops for researchers

    OpenAIRE

    McKenzie, Anne; Alpers, Kirsten; Heyworth, Jane; Phuong, Cindy; Hanley, Bec

    2016-01-01

    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...

  3. Ethical issues when involving people newly diagnosed with dementia in research.

    Science.gov (United States)

    Holland, Suzanne; Kydd, Angela

    2015-03-01

    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.

  4. Pediatric oncologists' attitudes towards involving adolescents in decision-making concerning research participation.

    NARCIS (Netherlands)

    Vries, M.C. de; Wit, J.M.; Engberts, D.P.; Kaspers, G.J.L.; Leeuwen, E. van

    2010-01-01

    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

  5. 78 FR 10538 - Protections for Subjects in Human Research Involving Pesticides

    Science.gov (United States)

    2013-02-14

    ... 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...

  6. Patient involvement in a scientific advisory process: setting the research agenda for medical products.

    NARCIS (Netherlands)

    Elberse, J.E.; Pittens, C.A.C.M.; de Cock Buning, J.T.; Broerse, J.E.W.

    2012-01-01

    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

  7. The construct of food involvement in behavioral research: scale development and validation.

    Science.gov (United States)

    Bell, Rick; Marshall, David W

    2003-06-01

    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.

  8. Facilitating the Involvement of People with Aphasia in Stroke Research by Developing Communicatively Accessible Research Resources

    Science.gov (United States)

    Pearl, Gill; Cruice, Madeline

    2017-01-01

    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…

  9. A clash of paradigms? Western and indigenous views on health research involving Aboriginal peoples.

    Science.gov (United States)

    Campbell, Theresa Diane

    2014-07-01

    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

  10. Framing the Undergraduate Research Experience: Discovery Involvement in Retailing Undergraduate Education

    Science.gov (United States)

    Sternquist, Brenda; Huddleston, Patricia; Fairhurst, Ann

    2018-01-01

    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…

  11. ORGANIC RESEARCH AND STAKEHOLDERS INVOLVEMENT: THE IFOAM EU REGIONAL GROUP CONTRIBUTION

    OpenAIRE

    Gonzalvez, Mr V; Schlueter, Mr M; Slabe, Ms A; Schmid, Mr O

    2006-01-01

    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

  12. The power of symbolic capital in patient and public involvement in health research.

    Science.gov (United States)

    Locock, Louise; Boylan, Anne-Marie; Snow, Rosamund; Staniszewska, Sophie

    2017-10-01

    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.

  13. The Human Rights Context for Ethical Requirements for Involving People with Intellectual Disability in Medical Research

    Science.gov (United States)

    Iacono, T.; Carling-Jenkins, R.

    2012-01-01

    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…

  14. 76 FR 5735 - Revisions to EPA's Rule on Protections for Subjects in Human Research Involving Pesticides

    Science.gov (United States)

    2011-02-02

    ... 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...

  15. Involving People with Lived Experience of Homelessness in Electronic Health Records Research

    Directory of Open Access Journals (Sweden)

    Serena Luchenski

    2017-04-01

    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.

  16. Undergraduate Research Involving Deaf and Hard-of-Hearing Students in Interdisciplinary Science Projects

    Directory of Open Access Journals (Sweden)

    Todd Pagano

    2015-05-01

    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.

  17. Community perspectives on research consent involving vulnerable children in Western Kenya.

    Science.gov (United States)

    Vreeman, Rachel; Kamaara, Eunice; Kamanda, Allan; Ayuku, David; Nyandiko, Winstone; Atwoli, Lukoye; Ayaya, Samuel; Gisore, Peter; Scanlon, Michael; Braitstein, Paula

    2012-10-01

    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.

  18. The Article Idea Chart: A participatory action research tool to aid involvement in dissemination

    Directory of Open Access Journals (Sweden)

    Cheryl Forchuk

    2014-06-01

    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

  19. Do Research Intermediaries Reduce Perceived Coercion to Enter Research Trials Among Criminally Involved Substance Abusers?

    Science.gov (United States)

    Festinger, David S; Dugosh, Karen L; Croft, Jason R; Arabia, Patricia L; Marlowe, Douglas B

    2011-01-01

    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.

  20. Partners in projects: preparing for public involvement in health and social care research.

    Science.gov (United States)

    Parkes, Jacqueline H; Pyer, Michelle; Wray, Paula; Taylor, Jane

    2014-09-01

    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.

  1. Public involvement in research within care homes: benefits and challenges in the APPROACH study.

    Science.gov (United States)

    Froggatt, Katherine; Goodman, Claire; Morbey, Hazel; Davies, Sue L; Masey, Helen; Dickinson, Angela; Martin, Wendy; Victor, Christina

    2016-12-01

    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.

  2. Involving citizens in priority setting for public health research: Implementation in infection research.

    Science.gov (United States)

    Rawson, Timothy M; Castro-Sánchez, Enrique; Charani, Esmita; Husson, Fran; Moore, Luke S P; Holmes, Alison H; Ahmad, Raheelah

    2018-02-01

    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.

  3. Medical staff involvement in nursing homes: development of a conceptual model and research agenda.

    Science.gov (United States)

    Shield, Renée; Rosenthal, Marsha; Wetle, Terrie; Tyler, Denise; Clark, Melissa; Intrator, Orna

    2014-02-01

    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.

  4. An Observational Study of Children's Involvement in Informed Consent for Exome Sequencing Research.

    Science.gov (United States)

    Miller, Victoria A; Werner-Lin, Allison; Walser, Sarah A; Biswas, Sawona; Bernhardt, Barbara A

    2017-02-01

    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.

  5. Children's Decision-Making Involvement About Research Participation: Associations With Perceived Fairness and Self-Efficacy.

    Science.gov (United States)

    Miller, Victoria A; Feudtner, Chris; Jawad, Abbas F

    2017-04-01

    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.

  6. Data collection using open access technology in multicentre operational research involving patient interviews.

    Science.gov (United States)

    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

    2017-03-21

    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.

  7. Being useful: achieving indigenous youth involvement in a community-based participatory research project in Alaska

    Directory of Open Access Journals (Sweden)

    Tara Ford

    2012-05-01

    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.

  8. A devolved model for public involvement in the field of mental health research: case study learning.

    Science.gov (United States)

    Moule, Pam; Davies, Rosie

    2016-12-01

    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.

  9. The Significance of Benefit Perceptions for the Ethics of HIV Research Involving Adolescents in Kenya.

    Science.gov (United States)

    Rennie, Stuart; Groves, Allison K; Hallfors, Denise Dion; Iritani, Bonita J; Odongo, Fredrick S; Luseno, Winnie K

    2017-10-01

    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.

  10. Improving Hawaiian and Filipino involvement in clinical research opportunities: qualitative findings from Hawai'i.

    Science.gov (United States)

    Gollin, Lisa X; Harrigan, Rosanne C; Calderón, José L; Perez, John; Easa, David

    2005-01-01

    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.

  11. Tagline: Information Extraction for Semi-Structured Text Elements in Medical Progress Notes

    Science.gov (United States)

    Finch, Dezon Kile

    2012-01-01

    Text analysis has become an important research activity in the Department of Veterans Affairs (VA). Statistical text mining and natural language processing have been shown to be very effective for extracting useful information from medical documents. However, neither of these techniques is effective at extracting the information stored in…

  12. 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).

    Science.gov (United States)

    Boote, Jonathan D; Twiddy, Maureen; Baird, Wendy; Birks, Yvonne; Clarke, Clare; Beever, Daniel

    2015-10-01

    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.

  13. Semi-structured interview is a reliable and feasible tool for selection of doctors for general practice specialist training.

    Science.gov (United States)

    Isaksen, Jesper Hesselbjerg; Hertel, Niels Thomas; Kjær, Niels Kristian

    2013-09-01

    In order to optimise the selection process for admission to specialist training in family medicine, we developed a new design for structured applications and selection interviews. The design contains semi-structured interviews, which combine individualised elements from the applications with standardised behaviour-based questions. This paper describes the design of the tool, and offers reflections concerning its acceptability, reliability and feasibility. We used a combined quantitative and qualitative evaluation method. Ratings obtained by the applicants in two selection rounds were analysed for reliability and generalisability using the GENOVA programme. Applicants and assessors were randomly selected for individual semi-structured in-depth interviews. The qualitative data were analysed in accordance with the grounded theory method. Quantitative analysis yielded a high Cronbach's alpha of 0.97 for the first round and 0.90 for the second round, and a G coefficient of the first round of 0.74 and of the second round of 0.40. Qualitative analysis demonstrated high acceptability and fairness and it improved the assessors' judgment. Applicants reported concerns about loss of personality and some anxiety. The applicants' ability to reflect on their competences was important. The developed selection tool demonstrated an acceptable level of reliability, but only moderate generalisability. The users found that the tool provided a high degree of acceptability; it is a feasible and useful tool for -selection of doctors for specialist training if combined with work-based assessment. Studies on the benefits and drawbacks of this tool compared with other selection models are relevant. not relevant. not relevant.

  14. Patient and public involvement in primary care research - an example of ensuring its sustainability.

    Science.gov (United States)

    Jinks, Clare; Carter, Pam; Rhodes, Carol; Taylor, Robert; Beech, Roger; Dziedzic, Krysia; Blackburn, Steven; Hughes, Rhian; Ong, Bie Nio

    2016-01-01

    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.

  15. Involving Latina/o parents in patient-centered outcomes research: Contributions to research study design, implementation and outcomes.

    Science.gov (United States)

    Pérez Jolles, Mónica; Martinez, Maria; Garcia, San Juanita; Stein, Gabriela L; Thomas, Kathleen C

    2017-10-01

    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.

  16. Institutional Oversight of Occupational Health and Safety for Research Programs Involving Biohazards.

    Science.gov (United States)

    Dyson, Melissa C; Carpenter, Calvin B; Colby, Lesley A

    2017-06-01

    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.

  17. How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation.

    Science.gov (United States)

    Wilson, Patricia; Mathie, Elspeth; Poland, Fiona; Keenan, Julia; Howe, Amanda; Munday, Diane; Kendall, Sally; Cowe, Marion; Staniszewska, Sophie; Goodman, Claire

    2018-04-01

    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.

  18. Institutional ethical review and ethnographic research involving injection drug users: a case study.

    Science.gov (United States)

    Small, Will; Maher, Lisa; Kerr, Thomas

    2014-03-01

    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.

  19. [Suffering at work among medical students: qualitative study using semi-structured interviews].

    Science.gov (United States)

    Le Provost, A-S; Loddé, B; Pietri, J; De Parscau, L; Pougnet, L; Dewitte, J-D; Pougnet, R

    2018-01-01

    Suffering at work among health professionals is a hot topic. Medical students, doctors of tomorrow, are far from being spared. Prevalence of anxiety and mood disorders range from 20.3 to 69 % for the former and from 12 to 30 % for the latter. The purpose of this article is to determine these factors by qualitative research, according to medical students' points of view. It is a qualitative study using semistructured interviews. The analysis is done according to the Grounded Theory. 12 medical students are interviewed. They expressed difficulties at work and positive factors. Three major themes are identified in selective coding: occupational factors, " study " factors and individual factors. All themes are both a source of well-being and ill-being according to the situations specified in the results. Studying medicine includes positive and negative aspects. Abandonment issues, lack of recognition and insufficient coaching emerge from our study. Screening of suffering at work should be systematic for medical students.

  20. Reporting of ethical protection in recent oral and maxillofacial surgery research involving human subjects.

    Science.gov (United States)

    Pitak-Arnnop, P; Sader, R; Hervé, C; Dhanuthai, K; Bertrand, J-Ch; Hemprich, A

    2009-07-01

    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.

  1. Musings on privacy issues in health research involving disaggregate geographic data about individuals

    Directory of Open Access Journals (Sweden)

    AbdelMalik Philip

    2009-07-01

    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.

  2. Research involving subjects with Alzheimer's disease in Italy: the possible role of family members.

    Science.gov (United States)

    Porteri, Corinna; Petrini, Carlo

    2015-03-04

    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.

  3. Musings on privacy issues in health research involving disaggregate geographic data about individuals.

    Science.gov (United States)

    Boulos, Maged N Kamel; Curtis, Andrew J; Abdelmalik, Philip

    2009-07-20

    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.

  4. Action research methodology in clinical pharmacy: how to involve and change.

    Science.gov (United States)

    Nørgaard, Lotte Stig; Sørensen, Ellen Westh

    2016-06-01

    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.

  5. Involving Communities in Deciding What Benefits They Receive in Multinational Research.

    Science.gov (United States)

    Wendler, David; Shah, Seema

    2015-10-01

    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.

  6. Involving healthcare professionals and family carers in setting research priorities for end-of-life care.

    Science.gov (United States)

    Diffin, Janet; Spence, Michael; Spencer, Rebecca; Mellor, Peter; Grande, Gunn

    2017-02-02

    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.

  7. Involving mental health service users in suicide-related research: a qualitative inquiry model.

    Science.gov (United States)

    Lees, David; Procter, Nicholas; Fassett, Denise; Handley, Christine

    2016-03-01

    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.

  8. A Research Framework for Understanding the Practical Impact of Family Involvement in the Juvenile Justice System: The Juvenile Justice Family Involvement Model.

    Science.gov (United States)

    Walker, Sarah Cusworth; Bishop, Asia S; Pullmann, Michael D; Bauer, Grace

    2015-12-01

    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.

  9. Teaching Earth Sciences as an interdisciplinary subject: Novel module design involving research literature

    Science.gov (United States)

    Tong, Vincent C. H.

    2010-05-01

    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

  10. Building managed primary care practice networks to deliver better clinical care: a qualitative semi-structured interview study.

    Science.gov (United States)

    Pawa, Jasmine; Robson, John; Hull, Sally

    2017-11-01

    Primary care practices are increasingly working in larger groups. In 2009, all 36 primary care practices in the London borough of Tower Hamlets were grouped geographically into eight managed practice networks to improve the quality of care they delivered. Quantitative evaluation has shown improved clinical outcomes. To provide insight into the process of network implementation, including the aims, facilitating factors, and barriers, from both the clinical and managerial perspectives. A qualitative study of network implementation in the London borough of Tower Hamlets, which serves a socially disadvantaged and ethnically diverse population. Nineteen semi-structured interviews were carried out with doctors, nurses, and managers, and were informed by existing literature on integrated care and GP networks. Interviews were recorded and transcribed, and thematic analysis used to analyse emerging themes. Interviewees agreed that networks improved clinical care and reduced variation in practice performance. Network implementation was facilitated by the balance struck between 'a given structure' and network autonomy to adopt local solutions. Improved use of data, including patient recall and peer performance indicators, were viewed as critical key factors. Targeted investment provided the necessary resources to achieve this. Barriers to implementing networks included differences in practice culture, a reluctance to share data, and increased workload. Commissioners and providers were positive about the implementation of GP networks as a way to improve the quality of clinical care in Tower Hamlets. The issues that arose may be of relevance to other areas implementing similar quality improvement programmes at scale. © British Journal of General Practice 2017.

  11. Canadian governance of health research involving human subjects: is anybody minding the store?

    Science.gov (United States)

    McDonald, M

    2001-01-01

    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.

  12. What Researchers Should Know and be Able to do When Contemplating Involvement in Education and Outreach

    Science.gov (United States)

    Ridky, R. W.

    2004-12-01

    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

  13. Involving older people in research: practical considerations when using the authenticity criteria in constructivist inquiry

    Science.gov (United States)

    Wilson, Christine Brown; Clissett, Philip

    2011-01-01

    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

  14. Public and patient involvement in quantitative health research: A statistical perspective.

    Science.gov (United States)

    Hannigan, Ailish

    2018-06-19

    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.

  15. Novel participatory methods of involving patients in research: naming and branding a longitudinal cohort study, BRIGHTLIGHT.

    Science.gov (United States)

    Taylor, Rachel M; Mohain, Jasjeet; Gibson, Faith; Solanki, Anita; Whelan, Jeremy; Fern, Lorna A

    2015-03-14

    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

  16. Involvement and emancipation of the worker. Action research in a university hospital.

    Science.gov (United States)

    Bolis, Ivan; Brunoro, Claudio; Sznelwar, Laerte Idal

    2012-01-01

    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.

  17. Managing Ethical Problems in Qualitative Research Involving Vulnerable Populations, Using a Pilot Study

    Directory of Open Access Journals (Sweden)

    Evalina van Wijk RN, PhD

    2013-02-01

    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.

  18. Potential of semi-structural and non-structural adaptation strategies to reduce future flood risk: case study for the Meuse

    Directory of Open Access Journals (Sweden)

    J. K. Poussin

    2012-11-01

    Full Text Available Flood risk throughout Europe has increased in the last few decades, and is projected to increase further owing to continued development in flood-prone areas and climate change. In recent years, studies have shown that adequate undertaking of semi-structural and non-structural measures can considerably decrease the costs of floods for households. However, there is little insight into how such measures can decrease the risk beyond the local level, now and in the future. To gain such insights, a modelling framework using the Damagescanner model with land-use and inundation maps for 2000 and 2030 was developed and applied to the Meuse river basin, in the region of Limburg, in the southeast of the Netherlands. The research suggests that annual flood risk may increase by up to 185% by 2030 compared with 2000, as a result of combined land-use and climate changes. The independent contributions of climate change and land-use change to the simulated increase are 108% and 37%, respectively. The risk-reduction capacity of the implementation of spatial zoning measures, which are meant to limit and regulate developments in flood-prone areas, is between 25% and 45%. Mitigation factors applied to assess the potential impact of three mitigation strategies (dry-proofing, wet-proofing, and the combination of dry- and wet-proofing in residential areas show that these strategies have a risk-reduction capacity of between 21% and 40%, depending on their rate of implementation. Combining spatial zoning and mitigation measures could reduce the total increase in risk by up to 60%. Policy implications of these results are discussed. They focus on the undertaking of effective mitigation measures, and possible ways to increase their implementation by households.

  19. INVOLVING STUDENTS IN RESEARCH AS A FORM OF INTEGRATION OF ENGINEERING WITH MATHEMATICAL EDUCATION

    Directory of Open Access Journals (Sweden)

    Viktor M. Fedoseyev

    2016-03-01

    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

  20. Biomedical research involving patients with disorders of consciousness: ethical and legal dimensions

    Directory of Open Access Journals (Sweden)

    Michele Farisco

    2014-09-01

    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

  1. Librarian involvement in a nutrition undergraduate research course: preparing nutrition students for evidence-based practice.

    Science.gov (United States)

    Smith, Susan C; Penumetcha, Meera

    2010-01-01

    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.

  2. Tea, talk and technology: patient and public involvement to improve connected health 'wearables' research in dementia.

    Science.gov (United States)

    Hassan, Lamiece; Swarbrick, Caroline; Sanders, Caroline; Parker, Angela; Machin, Matt; Tully, Mary P; Ainsworth, John

    2017-01-01

    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

  3. Chronic kidney disease in Nicaragua: a qualitative analysis of semi-structured interviews with physicians and pharmacists.

    Science.gov (United States)

    Ramirez-Rubio, Oriana; Brooks, Daniel R; Amador, Juan Jose; Kaufman, James S; Weiner, Daniel E; Scammell, Madeleine Kangsen

    2013-04-16

    Northwestern Nicaragua has a high prevalence of chronic kidney disease (CKD) of unknown cause among young adult men. In addition, frequent occurrence of urinary tract infections (UTI) among men and a dysuria syndrome described by sugarcane workers as "chistata" are both reported. This study examines health professionals´ perceptions regarding etiology of these conditions and their treatment approaches, including use of potentially nephrotoxic medications. Nineteen in-person semi-structured interviews were conducted in November 2010 among ten physicians and nine pharmacists practicing in the region. Health professionals perceived CKD as a serious and increasing problem in the region, primarily affecting young men working as manual laborers. All interviewees regarded occupational and environmental exposure to sun and heat, and dehydration as critical factors associated with the occurrence of CKD. These factors were also considered to play a role in the occurrence of chistata in the region. Health professionals indicated that reluctance among workers to hydrate might be influenced by perceptions of water contamination. Symptoms often were treated with non-steroidal anti-inflammatory drugs (NSAIDs), diuretics and antibiotics. Physicians acknowledged that the diagnosis of UTI usually was not based on microbial culture and opined that the use of potentially nephrotoxic medications may be contributing to CKD. Interviews provided evidence suggesting that medications such as diuretics, antibiotics and NSAIDs are widely used and sold over the counter for symptoms that may be related to dehydration and volume depletion. These factors, alone or in combination, may be possible contributors to kidney damage. Acute kidney damage coupled with volume depletion and exposures including medications and infectious agents should be further evaluated as causal factors for CKD in this region.

  4. Patients' Perspectives on the Prevention and Treatment of Peritonitis in Peritoneal Dialysis: A Semi-Structured Interview Study.

    Science.gov (United States)

    Campbell, Denise J; Craig, Jonathan C; Mudge, David W; Brown, Fiona G; Wong, Germaine; Tong, Allison

    ♦ BACKGROUND: Peritoneal dialysis (PD) is recommended for adults with residual kidney function and without significant comorbidities. However, peritonitis is a serious and common complication that is associated with hospitalization, pain, catheter loss, and death. This study aims to describe the beliefs, needs, and experiences of PD patients about peritonitis, to inform the training, support, and care of these patients. ♦ METHODS: Qualitative semi-structured interviews were conducted with 29 patients from 3 renal units in Australia who had previous or current experience of PD. The interviews were conducted between November 2014 and November 2015. Transcripts were analyzed thematically. ♦ RESULTS: We identified 4 themes: constant vigilance for prevention (conscious of vulnerability, sharing responsibility with family, demanding attention to detail, ambiguity of detecting infection, ineradicable inhabitation, jeopardizing PD success); invading harm (life-threatening, wreaking internal damage, debilitating pain, losing control and dignity); incapacitating lifestyle interference (financial strain, isolation and separation, exacerbating burden on family); and exasperation with hospitalization (dread of hospital admission, exposure to infection, gruelling follow-up schedule, exposure to harm). ♦ CONCLUSIONS: Patients perceived that peritonitis could threaten their health, treatment modality, and lifestyle, which motivated vigilance and attention to hygiene. They felt a loss of control due to debilitating symptoms including pain and having to be hospitalized, and they were uncertain about how to monitor for signs of peritonitis. Providing patients with education about the causes and signs of peritonitis and addressing their concerns about lifestyle impact, financial impact, hospitalization, and peritonitis-related anxieties may improve treatment satisfaction and outcomes for patients requiring PD. Copyright © 2016 International Society for Peritoneal Dialysis.

  5. Priorities for methodological research on patient and public involvement in clinical trials: A modified Delphi process.

    Science.gov (United States)

    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

    2017-12-01

    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.

  6. Correction of refractive errors in rhesus macaques (Macaca mulatta) involved in visual research.

    Science.gov (United States)

    Mitchell, Jude F; Boisvert, Chantal J; Reuter, Jon D; Reynolds, John H; Leblanc, Mathias

    2014-08-01

    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.

  7. Learning to work together - lessons from a reflective analysis of a research project on public involvement.

    Science.gov (United States)

    Howe, A; Mathie, E; Munday, D; Cowe, M; Goodman, C; Keenan, J; Kendall, S; Poland, F; Staniszewska, S; Wilson, P

    2017-01-01

    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

  8. Evaluating public involvement in research design and grant development: Using a qualitative document analysis method to analyse an award scheme for researchers.

    Science.gov (United States)

    Baxter, Susan; Muir, Delia; Brereton, Louise; Allmark, Christine; Barber, Rosemary; Harris, Lydia; Hodges, Brian; Khan, Samaira; Baird, Wendy

    2016-01-01

    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

  9. Undergraduate Student Involvement in International Research - The IRES Program at MAX-lab, Sweden

    Science.gov (United States)

    Briscoe, William; O'Rielly, Grant; Fissum, Kevin

    2014-03-01

    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.

  10. Assessment of personality-related levels of functioning: A pilot study of clinical assessment of the DSM-5 Level of Personality Functioning based on a semi-structured interview

    DEFF Research Database (Denmark)

    Thylstrup, Birgitte; Simonsen, Sebastian; Nemery, Caroline

    2016-01-01

    was to test the Clinical Assessment of the Level of Personality Functioning Scale [CALF], a semi-structured clinical interview, designed to assess the Level of Personality Functioning Scale of the DSM-5 (Section III) by applying strategies similar to what characterizes assessments in clinical practice....... Methods: The inter-rater reliability of the assessment of the four domains and the total impairment in the Level of Personality Functioning Scale were measured in a patient sample that varied in terms of severity and type of pathology. Ratings were done independently by the interviewer and two experts who...... watched a videotaped interview. Results: Inter-rater reliability coefficients varied between domains and were not sufficient for clinical practice, but may support the use of the interview to assess the dimensions of personality functioning for research purposes. Conclusions: While designed to measure...

  11. Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review.

    Science.gov (United States)

    Lander, Jonas; Hainz, Tobias; Hirschberg, Irene; Bossert, Sabine; Strech, Daniel

    2016-01-01

    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.

  12. The current structure of key actors involved in research on land and soil degradation

    Science.gov (United States)

    Escadafal, Richard; Barbero, Celia; Exbrayat, Williams; Marques, Maria Jose; Ruiz, Manuel; El Haddadi, Anass; Akhtar-Schuster, Mariam

    2013-04-01

    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

  13. Methodological issues involved in conducting qualitative research on support for nurses directly involved with women who chose to terminate their pregnancy

    Directory of Open Access Journals (Sweden)

    Antoinette Gmeiner

    2001-11-01

    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.

  14. Assessing the Influence of Researcher-Partner Involvement on the Process and Outcomes of Participatory Research in Autism Spectrum Disorder and Neurodevelopmental Disorders: A Scoping Review

    Science.gov (United States)

    Jivraj, Jamil; Sacrey, Lori-Ann; Newton, Amanda; Nicholas, David; Zwaigenbaum, Lonnie

    2014-01-01

    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…

  15. Consumer involvement in dietary guideline development: opinions from European stakeholders.

    Science.gov (United States)

    Brown, Kerry A; Hermoso, Maria; Timotijevic, Lada; Barnett, Julie; Lillegaard, Inger Therese L; Řehůřková, Irena; Larrañaga, Ainhoa; Lončarević-Srmić, Azra; Andersen, Lene Frost; Ruprich, Jiří; Fernández-Celemín, Laura; Raats, Monique M

    2013-05-01

    The involvement of consumers in the development of dietary guidelines has been promoted by national and international bodies. Yet, few best practice guidelines have been established to assist with such involvement. Qualitative semi-structured interviews explored stakeholders' beliefs about consumer involvement in dietary guideline development. Interviews were conducted in six European countries: the Czech Republic, Germany, Norway, Serbia, Spain and the UK. Seventy-seven stakeholders were interviewed. Stakeholders were grouped as government, scientific advisory body, professional and academic, industry or non-government organisations. Response rate ranged from 45 % to 95 %. Thematic analysis was conducted with the assistance of NVivo qualitative software. Analysis identified two main themes: (i) type of consumer involvement and (ii) pros and cons of consumer involvement. Direct consumer involvement (e.g. consumer organisations) in the decision-making process was discussed as a facilitator to guideline communication towards the end of the process. Indirect consumer involvement (e.g. consumer research data) was considered at both the beginning and the end of the process. Cons to consumer involvement included the effect of vested interests on objectivity; consumer disinterest; and complications in terms of time, finance and technical understanding. Pros related to increased credibility and trust in the process. Stakeholders acknowledged benefits to consumer involvement during the development of dietary guidelines, but remained unclear on the advantage of direct contributions to the scientific content of guidelines. In the absence of established best practice, clarity on the type and reasons for consumer involvement would benefit all actors.

  16. Current practice of public involvement activities in biomedical research and innovation: a systematic qualitative review.

    Science.gov (United States)

    Lander, Jonas; Hainz, Tobias; Hirschberg, Irene; Strech, Daniel

    2014-01-01

    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.

  17. A Case Study of Ethnic Minorities as Tourism Entrepreneurs: Their Involvement in Sustainable Tourism Development

    Directory of Open Access Journals (Sweden)

    Ceren Miral

    2013-07-01

    Full Text Available Most tourism activities excluding the e-tourism activities as matter of their nature (service taker and provider take place face to face between people. In addition tourism activities encourage bonding people both for tourists and the tourism services providers. Tourism creates cohesion for many different cultural groups. One of the cities in Turkey, Izmir is a good example with including too many culturally oriented groups such as Levantines, Greek, Jewish, rarely Armenians. In this paper there are two research questions are hold; how is being the other (ethnic minority as tourism entrepreneurs in tourism industry in Izmir and their involvement in sustainable tourism development is investigated and if tourism activities help connecting different cultural groups together and closer is investigated. So regarding these research questions, the research methodology in this paper is qualitative. For that reason, semi structured interview technique is applied to people are belong to different cultural groups and identities whom entrepreneurs in tourism industry. Semi structured interview technique is a commonly used an interview method depending on providing deep understanding of participants` perceptions, thoughts and behaviors. In general, understanding of the other brings feeling respect to others` cultural beliefs and lifestyle and this will make peace and harmony to where they live together. As a result, with the light of these research questions being the other entrepreneurship in sustainable tourism development in Izmir is evaluated. Furthermore, in this research is tried to indicate the advantageous and disadvantageous and importance of different cultural groups for sustainable tourism development

  18. Ethics education in research involving human beings in undergraduate medicine curriculum in Brazil.

    Science.gov (United States)

    Novaes, Maria Rita Garbi; Guilhem, Dirce; Barragan, Elena; Mennin, Stewart

    2013-12-01

    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

  19. Forced migrants involved in setting the agenda and designing research to reduce impacts of complex emergencies: combining Swarm with patient and public involvement.

    Science.gov (United States)

    Brainard, Julii Suzanne; Al Assaf, Enana; Omasete, Judith; Leach, Steve; Hammer, Charlotte C; Hunter, Paul R

    2017-01-01

    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

  20. Evaluating patient and public involvement in health research: from theoretical model to practical workshop.

    Science.gov (United States)

    Gibson, Andy; Welsman, Jo; Britten, Nicky

    2017-10-01

    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.

  1. "…Their Opinions Mean Something": Care Staff's Attitudes to Health Research Involving People with Intellectual Disabilities

    Science.gov (United States)

    Hall, Natalie; Durand, Marie-Anne; Mengoni, Silvana E.

    2017-01-01

    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…

  2. Involving the public in epidemiological public health research: a qualitative study of public and stakeholder involvement in evaluation of a population-wide natural policy experiment.

    Science.gov (United States)

    Anderson de Cuevas, Rachel; Nylén, Lotta; Burström, Bo; Whitehead, Margaret

    2018-04-20

    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

  3. [Conceptual and methodological issues involved in the research field of diagnostic reasoning].

    Science.gov (United States)

    Di Persia, Francisco N

    2016-05-01

    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.

  4. Online health information search and evaluation: observations and semi-structured interviews with college students and maternal health experts.

    Science.gov (United States)

    Kim, Hyojin; Park, Sun-Young; Bozeman, Ingrid

    2011-09-01

    While the Internet is a popular source of health information, health seekers' inadequate skills to locate and discern quality information pose a potential threat to their healthcare decision-making. We aimed to examine health information search and appraisal behaviours among young, heavy users of the Internet. In study 1, we observed and interviewed 11 college students about their search strategies and evaluation of websites. In study 2, three health experts evaluated two websites selected as the best information sources in study 1. Familiarity with health websites and confidence in search strategies were major factors affecting search and evaluation behaviours. Website quality was mostly judged by aesthetics and peripheral cues of source credibility and message credibility. In contrast to users' favourable website evaluation, the experts judged the websites to be inappropriate and untrustworthy. Our results highlight a critical need to provide young health seekers with resources and training that are specifically geared toward health information search and appraisal. The role of health seekers' knowledge and involvement with the health issue in search effort and success warrants future research. © 2011 The authors. Health Information and Libraries Journal © 2011 Health Libraries Group.

  5. Critical Entanglement: Research on Culturally and Linguistically Diverse Parental Involvement in Special Education 2000-2010

    Science.gov (United States)

    Cobb, Cam

    2014-01-01

    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…

  6. The Investigation of Research-Based Home Parental Involvement Practices, Parental Style, and Student Achievement

    Science.gov (United States)

    Colson, Myron Jamal

    2010-01-01

    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…

  7. Service user involvement enhanced the research quality in a study using interpretative phenomenological analysis - the power of multiple perspectives.

    Science.gov (United States)

    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

    2017-01-01

    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.

  8. 21 CFR 56.110 - Expedited review procedures for certain kinds of research involving no more than minimal risk...

    Science.gov (United States)

    2010-04-01

    ... 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...

  9. Involving burn survivors in agenda setting on burn research: an added value?

    NARCIS (Netherlands)

    Broerse, J.E.W.; Zweekhorst, M.B.M.; Van Rensen, A.J.M.L.; De Haan, M.J.M.

    2010-01-01

    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

  10. A SHARED study-the benefits and costs of setting up a health research study involving lay co-researchers and how we overcame the challenges.

    Science.gov (United States)

    Mockford, Carole; Murray, Matt; Seers, Kate; Oyebode, Jan; Grant, Richard; Boex, Sue; Staniszewska, Sophie; Diment, Yvonne; Leach, Jim; Sharma, Uma; Clarke, Rosemary; Suleman, Rashida

    2016-01-01

    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

  11. 77 FR 54584 - Final Action Under the NIH Guidelines for Research Involving Recombinant DNA Molecules (NIH...

    Science.gov (United States)

    2012-09-05

    ... 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...

  12. Improving brain computer interface research through user involvement - The transformative potential of integrating civil society organisations in research projects

    Science.gov (United States)

    Wakunuma, Kutoma; Rainey, Stephen; Hansen, Christian

    2017-01-01

    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

  13. Improving brain computer interface research through user involvement - The transformative potential of integrating civil society organisations in research projects.

    Science.gov (United States)

    Stahl, Bernd Carsten; Wakunuma, Kutoma; Rainey, Stephen; Hansen, Christian

    2017-01-01

    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.

  14. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences.

    NARCIS (Netherlands)

    de Wit, M.P.T.; Abma, T.A.; Koelewijn-van Loon, M.S.; Collins, S.; Kirwan, J

    2013-01-01

    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,

  15. Ethics challenges and guidance related to research involving adolescent post-abortion care: a scoping review.

    Science.gov (United States)

    Zulu, Joseph M; Ali, Joseph; Hallez, Kristina; Kass, Nancy; Michelo, Charles; Hyder, Adnan A

    2018-05-02

    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

  16. The AIR's policy on research involving the irradiation of human subjects

    International Nuclear Information System (INIS)

    Smith, A.N.

    1995-01-01

    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

  17. The required interactions among institutions involved with Research and Development in the power sector

    Energy Technology Data Exchange (ETDEWEB)

    Vieira Filho, X; Medeiros, J C; Szechtman, M [Centro de Pesquisas de Energia Eletrica (CEPEL), Rio de Janeiro, RJ (Brazil)

    1994-12-31

    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.

  18. Parental E-nvolvement: A Phenomenological Research on Electronic Parental Involvement

    Science.gov (United States)

    Sad, Süleyman Nihat; Konca, Ahmet Sami; Özer, Niyazi; Acar, Feride

    2016-01-01

    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…

  19. Working Memory Involvement in Stuttering: Exploring the Evidence and Research Implications

    Science.gov (United States)

    Bajaj, Amit

    2007-01-01

    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…

  20. Missed opportunities for impact in patient and carer involvement: a mixed methods case study of research priority setting.

    Science.gov (United States)

    Snow, R; Crocker, J C; Crowe, S

    2015-01-01

    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

  1. Fathers' Perceived Reasons for Their Underrepresentation in Child Health Research and Strategies to Increase Their Involvement.

    Science.gov (United States)

    Davison, Kirsten K; Charles, Jo N; Khandpur, Neha; Nelson, Timothy J

    2017-02-01

    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.

  2. Setting health research priorities using the CHNRI method: III. Involving stakeholders

    Directory of Open Access Journals (Sweden)

    Sachiyo Yoshida

    2016-06-01

    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.

  3. Leashes and Lies: Navigating the Colonial Tensions of Institutional Ethics of Research Involving Indigenous Peoples in Canada

    Directory of Open Access Journals (Sweden)

    Martha L. Stiegman

    2015-06-01

    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.

  4. Involving students in real-world research: a pilot study for teaching public health and research skills

    Directory of Open Access Journals (Sweden)

    Wilson Nick

    2009-07-01

    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

  5. Emergency planning and preparedness for accidents involving radioactive materials used in medicine, industry, research and teaching

    International Nuclear Information System (INIS)

    1989-01-01

    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

  6. A Comparison of National Policies on Research Involving Human Subjects to Facilitate Review and Approval of Collaborative Research

    Science.gov (United States)

    2008-11-26

    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

  7. Setting health research priorities using the CHNRI method: I. Involving funders

    Directory of Open Access Journals (Sweden)

    Igor Rudan

    2016-06-01

    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?

  8. Institutional Oversight of Occupational Health and Safety for Research Programs Involving Biohazards

    OpenAIRE

    Dyson, Melissa C; Carpenter, Calvin B; Colby, Lesley A

    2017-01-01

    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...

  9. Online social networks for patient involvement and recruitment in clinical research.

    Science.gov (United States)

    Ryan, Gemma Sinead

    2013-01-01

    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.

  10. Informed Consent and Clinical Research Involving Children and Adolescents: Implications of the Revised APA Ethics Code and HIPAA

    Science.gov (United States)

    Fisher, Celia B.

    2004-01-01

    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…

  11. 40 CFR 26.1203 - Prohibition of research involving intentional exposure of any human subject who is a pregnant...

    Science.gov (United States)

    2010-07-01

    ... 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...

  12. 40 CFR 26.203 - Prohibition of research conducted or supported by EPA involving intentional exposure of any human...

    Science.gov (United States)

    2010-07-01

    ... 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...

  13. Strategies to enhance participant recruitment and retention in research involving a community-based population.

    Science.gov (United States)

    McCullagh, Marjorie C; Sanon, Marie-Anne; Cohen, Michael A

    2014-11-01

    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.

  14. Involving High School Students in Computational Physics University Research: Theory Calculations of Toluene Adsorbed on Graphene.

    Science.gov (United States)

    Ericsson, Jonas; Husmark, Teodor; Mathiesen, Christoffer; Sepahvand, Benjamin; Borck, Øyvind; Gunnarsson, Linda; Lydmark, Pär; Schröder, Elsebeth

    2016-01-01

    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.

  15. Techniques involving extreme environment, nondestructive techniques, computer methods in metals research, and data analysis

    International Nuclear Information System (INIS)

    Bunshah, R.F.

    1976-01-01

    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

  16. The Public Health Service guidelines. Governing research involving human subjects: An analysis of the policy-making process

    Science.gov (United States)

    Frankel, M. S.

    1972-01-01

    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.

  17. Updating AP Potential™ Expectancy Tables Involving PSAT/NMSQT® Writing. Research Notes. RN-35

    Science.gov (United States)

    Ewing, Maureen; Camara, Wayne J.; Millsap, Roger E.; Milewski, Glenn B.

    2007-01-01

    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…

  18. Insiders' Perspectives: A Children's Rights Approach to Involving Children in Advising on Adult-Initiated Research

    Science.gov (United States)

    Dunn, Jill

    2015-01-01

    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…

  19. Human Securitability: A Participatory Action Research Study Involving Novice Teachers and Youngsters

    Science.gov (United States)

    Kravale-Paulina, Marite; Olehnovica, Eridiana

    2015-01-01

    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…

  20. The Undergraduate ALFALFA Team: A Model for Involving Undergraduates in Major Legacy Astronomy Research

    Science.gov (United States)

    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

    2015-01-01

    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

  1. Consumer-Involved Participatory Research to Address General Medical Health and Wellness in a Community Mental Health Setting.

    Science.gov (United States)

    Iyer, Sharat P; Pancake, Laura S; Dandino, Elizabeth S; Wells, Kenneth B

    2015-12-01

    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.

  2. Time, science and consensus: the different times involving scientific research, political decision and public opinion

    Directory of Open Access Journals (Sweden)

    José Aparecido de

    2010-01-01

    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.

  3. Feeling and Thinking about Studio Practices: Exploring Dissonance in Semi-Structured Interviews with Students in Higher Education Music

    Science.gov (United States)

    Burwell, Kim

    2017-01-01

    While studio-based instrumental and vocal learning is widely regarded as both important and effective in higher education music, research to date has offered little concrete information about studio practices that students have regarded as ineffective. Two recent case studies investigated what appear to be exceptional instances in which students…

  4. How to capture patients’ concerns and related changes: Comparing the MYCaW questionnaire, semi-structured interview and a priority list of outcome areas

    DEFF Research Database (Denmark)

    Ostenfeld-Rosenthal, Ann; Johannessen, Helle

    2014-01-01

    as rehabilitation after colorectal cancer, a sub-sample of 31 participants completed the MYCaW questionnaire and the priority list and were interviewed before, during and after the treatment period. Setting Treatments were provided in healers’ clinics in Denmark. Main outcome measures For each participant......Objectives To compare the capacity of the MYCaW questionnaire, a priority list of concerns covered by validated questionnaires, and semi-structured interviews to identify patients’ personalized concerns and related changes. Design In a pragmatic trial on the effectiveness of energy healing...... experience with the treatment, while concerns stated in interviews and the priority list remained stable throughout the study; (2) emotional concerns were reported more often in interviews than in MYCaW, physical concerns were predominant in MYCaW, and quality of life was marked as a primary concern most...

  5. An Online Learning Module to Increase Self-Efficacy and Involvement in Care for Patients With Advanced Lung Cancer: Research Protocol.

    Science.gov (United States)

    Janssen, Anna; Shaw, Tim; Nagrial, Adnan; Pene, Christopher; Rabbets, Melanie; Carlino, Matteo; Zachulski, Clare; Phillips, Jane; Birnbaum, Robert; Gandhi, Tejal; Harnett, Paul

    2016-08-08

    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.

  6. Undergraduate research involving human subjects should not be granted ethical approval unless it is likely to be of publishable quality.

    Science.gov (United States)

    Gallagher, Cathal T; McDonald, Lisa J; McCormack, Niamh P

    2014-06-01

    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.

  7. The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study.

    Science.gov (United States)

    Blackburn, Steven; McLachlan, Sarah; Jowett, Sue; Kinghorn, Philip; Gill, Paramjit; Higginbottom, Adele; Rhodes, Carol; Stevenson, Fiona; Jinks, Clare

    2018-01-01

    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

  8. Research involving hot atoms of nucleogenic origin and its practical application

    International Nuclear Information System (INIS)

    Ferrieri, R.A.; Wolf, A.P.

    1990-01-01

    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

  9. The Pulsar Search Collaboratory: Involving High School Students in Astronomical Research -- A Progress Report

    Science.gov (United States)

    Rosen, Rachel; Heatherly, S.; McLauglin, M.; Lorimer, D.

    2010-01-01

    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.

  10. Criticality safety studies involved in actions to improve conditions for storing 'RA' research reactor spent fuel

    International Nuclear Information System (INIS)

    Matausek, M.; Marinkovic, N.

    1998-01-01

    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)

  11. Promoting the inclusion of Afghan women and men in research: reflections from research and community partners involved in implementing a 'proof of concept' project.

    Science.gov (United States)

    Riggs, Elisha; Yelland, Jane; Szwarc, Josef; Casey, Sue; Chesters, Donna; Duell-Piening, Philippa; Wahidi, Sayed; Fouladi, Fatema; Brown, Stephanie

    2015-01-31

    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.

  12. Patient Involvement in Safe Delivery: A Qualitative Study.

    Science.gov (United States)

    Olfati, Forozun; Asefzadeh, Saeid; Changizi, Nasrin; Keramat, Afsaneh; Yunesian, Masud

    2015-09-28

    Patient involvement in safe delivery planning is considered important yet not widely practiced. The present study aimed at identifythe factors that affect patient involvementin safe delivery, as recommended by parturient women. This study was part of a qualitative research conducted by content analysis method and purposive sampling in 2013.The data were collected through 63 semi-structured interviews in4 hospitalsand analyzed using thematic content analysis. The participants in this research were women before discharge and after delivery. Findings were analyzed using Colaizzi's method. Four categories of factors that could affect patient involvement in safe delivery emerged from our analysis: patient-related (true and false beliefs, literacy, privacy, respect for patient), illness-related (pain, type of delivery, patient safety incidents), health care professional-relatedand task-related factors (behavior, monitoring &training), health care setting-related (financial aspects, facilities). More research is needed to explore the factors affecting the participation of mothers. It is therefore, recommended to: 1) take notice of mother education, their husbands, midwives and specialists; 2) provide pregnant women with insurance coverage from the outset of pregnancy, especially during prenatal period; 3) form a labor pain committee consisting of midwives, obstetricians, and anesthesiologists in order to identify the preferred painless labor methods based on the existing facilities and conditions, 4) carry out research on observing patients' privacy and dignity; 5) pay more attention on the factors affecting cesarean.

  13. Ethical practice in internet research involving vulnerable people: lessons from a self-harm discussion forum study (SharpTalk).

    Science.gov (United States)

    Sharkey, Siobhan; Jones, Ray; Smithson, Janet; Hewis, Elaine; Emmens, Tobit; Ford, Tamsin; Owens, Christabel

    2011-12-01

    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.

  14. A research perspective on stakeholder involvement in radioactive waste management State of the art and future prospects

    International Nuclear Information System (INIS)

    Gaston Meskens; Erik Laes; Gilbert Eggermont

    2006-01-01

    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)

  15. Development and testing of a medline search filter for identifying patient and public involvement in health research.

    Science.gov (United States)

    Rogers, Morwenna; Bethel, Alison; Boddy, Kate

    2017-06-01

    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.

  16. A Research Perspective on Stakeholder Involvement in Radioactive Waste Management - State of the Art and Future Prospects

    International Nuclear Information System (INIS)

    Meskens, Gaston; Laes, Erik; Eggermont, Gilbert

    2006-01-01

    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)

  17. From the best results of medical research to therapy involving the context of an individual patient

    Directory of Open Access Journals (Sweden)

    Małgorzata K. Szerla

    2015-01-01

    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.

  18. Developing a spinal cord injury research strategy using a structured process of evidence review and stakeholder dialogue. Part II: Background to a research strategy.

    Science.gov (United States)

    Bragge, P; Piccenna, L; Middleton, J; Williams, S; Creasey, G; Dunlop, S; Brown, D; Gruen, R

    2015-10-01

    Literature review/semi-structured interviews. To develop a spinal cord injury (SCI) research strategy for Australia and New Zealand. Australia. The National Trauma Research Institute Forum approach of structured evidence review and stakeholder consultation was employed. This involved gathering from published literature and stakeholder consultation the information necessary to properly consider the challenge, and synthesising this into a briefing document. A research strategy 'roadmap' was developed to define the major steps and key planning questions to consider; next, evidence from published SCI research strategy initiatives was synthesised with information from four one-on-one semi-structured interviews with key SCI research stakeholders to create a research strategy framework, articulating six key themes and associated activities for consideration. These resources, combined with a review of SCI prioritisation literature, were used to generate a list of draft principles for discussion in a structured stakeholder dialogue meeting. The research strategy roadmap and framework informed discussion at a structured stakeholder dialogue meeting of 23 participants representing key SCI research constituencies, results of which are published in a companion paper. These resources could also be of value in other research strategy or planning exercises. This project was funded by the Victorian Transport Accident Commission and the Australian and New Zealand Spinal Cord Injury Network.

  19. Making patient and public involvement in cancer and palliative research a reality: academic support is vital for success.

    Science.gov (United States)

    Collins, Karen; Boote, Jonathan; Ardron, David; Gath, Jacqui; Green, Tracy; Ahmedzai, Sam H

    2015-06-01

    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.

  20. Research priority setting for health policy and health systems strengthening in Nigeria: the policymakers and stakeholders perspective and involvement.

    Science.gov (United States)

    Uneke, Chigozie Jesse; Ezeoha, Abel Ebeh; Ndukwe, Chinwendu Daniel; Oyibo, Patrick Gold; Onwe, Friday; Aulakh, Bhupinder Kaur

    2013-01-01

    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.

  1. Radiation risk statement in the participant information for a research protocol that involves exposure to ionising radiation

    International Nuclear Information System (INIS)

    Caon, Martin

    2005-01-01

    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

  2. Expanding the Reach of Physics-Engaging Students in Interdisciplinary Research Involving complex, real-world situation

    Science.gov (United States)

    Bililign, Solomon

    2014-03-01

    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.

  3. Mirror, mirror on the wall..... A study into the characteristics of the facilitation of teachers who conduct action research

    NARCIS (Netherlands)

    Cornelissen, L.J.F.

    2008-01-01

    This article investigates the facilitation characteristics of teachers who conduct action research. A framework of the facilitation characteristics was constructed during a cyclic research process of literature research and semi-structured interviews with facilitators, teachers and experts. The

  4. User interface and patient involvement.

    Science.gov (United States)

    Andreassen, Hege Kristin; Lundvoll Nilsen, Line

    2013-01-01

    Increased patient involvement is a goal in contemporary health care, and of importance to the development of patient oriented ICT. In this paper we discuss how the design of patient-user interfaces can affect patient involvement. Our discussion is based on 12 semi-structured interviews with patient users of a web-based solution for patient--doctor communication piloted in Norway. We argue ICT solutions offering a choice of user interfaces on the patient side are preferable to ensure individual accommodation and a high degree of patient involvement. When introducing web-based tools for patient--health professional communication a free-text option should be provided to the patient users.

  5. Strategies to enhance patient recruitment and retention in research involving patients with a first episode of mental illness.

    Science.gov (United States)

    Furimsky, Ivana; Cheung, Amy H; Dewa, Carolyn S; Zipursky, Robert B

    2008-11-01

    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.

  6. Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research.

    Science.gov (United States)

    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

    2018-01-01

    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

  7. Qualitative analysis of factors that increase and reduce involvement in gambling

    Directory of Open Access Journals (Sweden)

    Egidijus

    2015-12-01

    Full Text Available During the rapid development of gambling business, the number of pathological gamblers is increasing as well. The problem of pathological gambling is just as important as alcoholism or drug addiction. However, there is a lack of information and research of this topicin Lithuania. The aim of work: to investigate and analyse the factors that increase or reduce involvement in gambling. Research questions: 1 What factors increase involvement in gambling? 2 What factors reduce involvement in gambling? Critical case sampling was used for selection of the participants. Subjects were required to a have experience of involvement in gambling for at least one year; b have experience of negative impact of gambling on quality of life; c have at least 6 months of gambling abstinence. Five individuals participated in the research; all of them were males who live in Vilnius. Age of the participants varied from 19 to 45. Semi-structured interviews were used to collect data. Interviews were recorded and transcribed verbatim. The matic analysis of the data led to the identification of four major the matic categories: psychological factors; social relations; material well being; quality of life. There search results show that negatyve childhood experience, gambling friends, escaping from various troubles, disputes in family and high financial needs can increase involvement in gambling. Factors that reduce involvement in gambling are: feeling support of social environment, proper evaluation of financial position, awareness of one‘s own addiction to gambling and desire to change life.

  8. A comparative study of contemporary user involvement within healthcare systems across England, Poland and Slovenia.

    Science.gov (United States)

    Lichon, Mateusz; Kavcic, Matic; Masterson, Daniel

    2015-01-01

    The purpose of this paper is to explore how healthcare-users' engagement is perceived, how it occurs and how these perceptions differ between three European countries: England, Poland and Slovenia, using the concepts of voice, choice and coproduction. This comparative, qualitative study is based on a review of legal documents, academic literature and semi-structured interviews conducted in October and November 2011. A research sample consisted of 21 interviewees representing various stakeholders including healthcare-users, doctors and managers. Primary and secondary data were analysed using theoretical thematic analysis. Emerging themes were identified from the interviews and related to the indicators describing healthcare-users' involvement in the voice, choice and coproduction model. Results of the comparative qualitative research suggest that the healthcare-users' influence is strongly grounded in England where the healthcare system and professionals are prepared to include healthcare-users in the decision-making process. In Slovenia, cultural development of healthcare-users' involvement seems to proceed the institutional development. In Poland, institutions are ready to involve healthcare-users in decision-making process although the cultural desirability of involving users among doctors and patients is lacking. The notion of user involvement is increasingly gaining importance and research attention, yet there is still little known about the way cultural, political, historical differences between various European countries influence it. This paper explores this little known area using the original approach of user involvement (Dent et al., 2011) with input from various stakeholders including patients, healthcare representatives and academics.

  9. Waste treatment and immobilization technologies involving inorganic sorbents. Final report of a co-ordinated research programme 1992-1996

    International Nuclear Information System (INIS)

    1997-06-01

    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

  10. Service user involvement in research may lead to contrary rather than collaborative accounts: findings from a qualitative palliative care study.

    Science.gov (United States)

    Forbat, Liz; Hubbard, Gill

    2016-04-01

    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.

  11. Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP.

    Science.gov (United States)

    Cheung, Peter P; de Wit, Maarten; Bingham, Clifton O; Kirwan, John R; Leong, Amye; March, Lyn M; Montie, Pam; Scholte-Voshaar, Marieke; Gossec, Laure

    2016-01-01

    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.

  12. Extent, quality and impact of patient and public involvement in antimicrobial drug development research: A systematic review.

    Science.gov (United States)

    Evans, David; Bird, Emma; Gibson, Andy; Grier, Sally; Chin, Teh Li; Stoddart, Margaret; MacGowan, Alasdair

    2018-02-01

    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.

  13. Parent Involvement Practices of High-Achieving Elementary Science Students

    Science.gov (United States)

    Waller, Samara Susan

    This study addressed a prevalence of low achievement in science courses in an urban school district in Georgia. National leaders and educators have identified the improvement of science proficiency as critical to the future of American industry. The purpose of this study was to examine parent involvement in this school district and its contribution to the academic achievement of successful science students. Social capital theory guided this study by suggesting that students achieve best when investments are made into their academic and social development. A collective case study qualitative research design was used to interview 9 parent participants at 2 elementary schools whose children scored in the exceeds category on the Science CRCT. The research questions focused on what these parents did at home to support their children's academic achievement. Data were collected using a semi-structured interview protocol and analyzed through the categorical aggregation of transcribed interviews. Key findings revealed that the parents invested time and resources in 3 practices: communicating high expectations, supporting and developing key skills, and communicating with teachers. These findings contribute to social change at both the local and community level by creating a starting point for teachers, principals, and district leaders to reexamine the value of parent input in the educational process, and by providing data to support the revision of current parent involvement policies. Possibilities for further study building upon the findings of this study may focus on student perceptions of their parents' parenting as it relates to their science achievement.

  14. Participatory public health systems research: value of community involvement in a study series in mental health emergency preparedness.

    Science.gov (United States)

    McCabe, O Lee; Marum, Felicity; Semon, Natalie; Mosley, Adrian; Gwon, Howard; Perry, Charlene; Moore, Suzanne Straub; Links, Jonathan M

    2012-01-01

    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

  15. Charities' response to the European Commission call of interest for their involvement in the European Research Area

    CERN Document Server

    Sessano, D.

    2003-01-01

    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...

  16. Theoretical Foundations of Research Focused on HIV Prevention Among Substance-Involved Women: A Review of Observational and Intervention Studies.

    Science.gov (United States)

    Auerbach, Judith D; Smith, Laramie R

    2015-06-01

    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.

  17. The development of a semi-structured home interview (CHIF) to directly assess function in cognitively impaired elderly people in two cultures

    Science.gov (United States)

    Hendrie, H. C.; Lane, K. A.; Ogunniyi, A.; Baiyewu, O.; Gureje, O.; Evans, R.; Smith-Gamble, V.; Pettaway, M.; Unverzagt, F. W.; Gao, S.; Hall, K. S.

    2010-01-01

    Background Assessing function is a crucial element in the diagnosis of dementia. This information is usually obtained from key informants. However, reliable informants are not always available. Methods A 10-item semi-structured home interview (the CHIF, or Clinician Home-based Interview to assess Function) to assess function primarily by measuring instrumental activities of daily living directly was developed and tested for inter-rater reliability and validity as part of the Indianapolis–Ibadan dementia project. The primary validity measurements were correlations between scores on the CHIF and independently gathered scores on the Blessed Dementia Scale (from informants) and the Mini-mental State Examination (MMSE). Sensitivities and specificities of scores on the CHIF and receiver operator characteristic (ROC) curves were constructed with dementia as the dependent variable. Results Inter-rater reliability for the CHIF was high (Pearson’s correlation coefficient 0.99 in Indianapolis and 0.87 in Ibadan). Internal consistency, in both samples, was good (Cronbach’s α 0.95 in Indianapolis and 0.83 in Ibadan). Scores on the CHIF correlated well with the Blessed Dementia scores at both sites (−0.71, p < 0.0001 for Indianapolis and −0.56, p < 0.0001 for Ibadan) and with the MMSE (0.75, p < 0.0001 for Indianapolis and 0.44, p < 0.0001 for Ibadan). For all items at both sites, the subjects without dementia performed significantly better than those with dementia. The area under the ROC curve for dementia diagnosis was 0.965 for Indianapolis and 0.925 for Ibadan. Conclusion The CHIF is a useful instrument to assess function directly in elderly participants in international studies, particularly in the absence of reliable informants. PMID:16640794

  18. The Road Less Travelled: An Overview and Example of Constructivist Research in Accounting

    Directory of Open Access Journals (Sweden)

    Charmayne Highfield

    2012-12-01

    Full Text Available This article provides a discussion of the nature of constructivism as a research paradigm within the context of accounting and presents a detailed example of a research study to demonstrate the application of this paradigm. The commentary features a particular emphasis on how the practicalities involved in designing and conducting the research meshed with the philosophy of the research paradigm. The illustrative research project concerns an investigation of organisational justice in the context of fairness in the workplace in public accounting firms. Semi-structured interviews were used to collect data, and textual transcriptions were interpreted using thematic methods and discourse analysis. The aim of the discussion and exemplar is to render constructivist approaches to research in accounting more accessible and apprehensible for researchers unfamiliar with, or new to, this field of qualitative inquiry.

  19. Exploring the characteristics, global distribution and reasons for retraction of published articles involving human research participants: a literature survey.

    Science.gov (United States)

    Li, Guowei; Kamel, Mariam; Jin, Yanling; Xu, Michael Kuan; Mbuagbaw, Lawrence; Samaan, Zainab; Levine, Mitchell Ah; Thabane, Lehana

    2018-01-01

    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.

  20. 'But is it a question worth asking?' A reflective case study describing how public involvement can lead to researchers' ideas being abandoned.

    Science.gov (United States)

    Boote, Jonathan D; Dalgleish, Mary; Freeman, Janet; Jones, Zena; Miles, Marianne; Rodgers, Helen

    2014-06-01

    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.

  1. Community Participation in Health Systems Research: A Systematic Review Assessing the State of Research, the Nature of Interventions Involved and the Features of Engagement with Communities.

    Science.gov (United States)

    George, Asha S; Mehra, Vrinda; Scott, Kerry; Sriram, Veena

    2015-01-01

    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

  2. [Promotion of Mental Health - Technologies for Care: emotional involvement, rteception, co-responsibility and autonomy].

    Science.gov (United States)

    Jorge, Maria Salete Bessa; Pinto, Diego Muniz; Quinderé, Paulo Henrique Dias; Pinto, Antonio Germane Alves; Sousa, Fernando Sérgio Pereira de; Cavalcante, Cinthia Mendonça

    2011-07-01

    Healthcare relations serve as efficient devices for the promotion of mental health and the development of comprehensive practices. This study seeks to analyze the measures that make mental healthcare possible in the daily operations of a Psychosocial Healthcare Center (CAPS). It is qualitative research adopting a critical and reflexive approach conducted in CAPS in the municipality of Sobral in the State of Ceará. Complying with regulations, the study was submitted for analysis by the Committee for Ethics in Research adhering to norms for research involving human beings. For data gathering, conducted between May and July 2008, semi-structured and systematic observation interview techniques were used. The research subjects involved 20 people, distributed into three groups: group I (mental health workers-8); group II (users-7) and group III (relatives of users-5). The material was organized and analyzed using principles of critical hermeneutics. According to the results, in the daily operations of CAPS, the relations of care and its devices (reception, emotional involvement, co-responsibility and autonomy) make the transversal adaptation of psychosocial practices possible. The dialogues were derived from meetings of mental health workers, users and relatives in their quest for healthcare solutions.

  3. Interviews in qualitative research.

    Science.gov (United States)

    Peters, Kath; Halcomb, Elizabeth

    2015-03-01

    Interviews are a common method of data collection in nursing research. They are frequently used alone in a qualitative study or combined with other data collection methods in mixed or multi-method research. Semi-structured interviews, where the researcher has some predefined questions or topics but then probes further as the participant responds, can produce powerful data that provide insights into the participants' experiences, perceptions or opinions.

  4. In the Information Age, do dementia caregivers get the information they need? Semi-structured interviews to determine informal caregivers' education needs, barriers, and preferences.

    Science.gov (United States)

    Peterson, Kendra; Hahn, Howard; Lee, Amber J; Madison, Catherine A; Atri, Alireza

    2016-09-23

    Most patients with dementia or cognitive impairment receive care from family members, often untrained for this challenging role. Caregivers may not access publicly available caregiving information, and caregiver education programs are not widely implemented clinically. Prior large surveys yielded broad quantitative understanding of caregiver information needs, but do not illuminate the in-depth, rich, and nuanced caregiver perspectives that can be gleaned using qualitative methodology. We aimed to understand perspectives about information sources, barriers and preferences, through semi-structured interviews with 27 caregivers. Content analysis identified important themes. We interviewed 19 women, 8 men; mean age 58.5 years; most adult children (15) or spouses (8) of the care recipient. Dementia symptoms often developed insidiously, with delayed disease acknowledgement and caregiver self-identification. While memory loss was common, behavioral symptoms were most troublesome, often initially unrecognized as disease indicators. Emerging themes: 1.) Barriers to seeking information often result from knowledge gaps, rather than reluctance to assume the caregiver role; 2.) Most caregivers currently receive insufficient information. Caregivers are open to many information sources, settings, and technologies, including referrals to other healthcare professionals, print material, and community and internet resources, but expect the primary care provider (PCP) to recommend, endorse, and guide them to specific sources. These findings replicated and expanded on results from previous quantitative surveys and, importantly, revealed a previously unrecognized essential factor: despite receiving insufficient information, caregivers place critical value on their relationship with care recipient PCPs to receive recommendations, guidance and endorsement to sources of caregiving information. Implications include: 1.) Greater public education is needed to help caregivers identify and

  5. Action research as a method for changing patient education practice in a clinical diabetes setting

    DEFF Research Database (Denmark)

    Voigt, Jane Rohde; Hansen, Ulla M.; Glindorf, Mette

    2014-01-01

    with researchers developed and implemented a participatory, group-based diabetes education program in a diabetes clinic in the Danish health care system. The research process included a variety of qualitative methods: workshops, classroom observations, video recordings and semi-structured interviews. These methods......Action research is potentially a useful method for changing clinical practice by involving practitioners in the process of change. The aim of this study was to explore the utility of action research in bridging the gap between research and practice. Diabetes educators in collaboration...... aimed at obtaining contextual sensitivity, allowing dynamic interactions with educators and people with diabetes. Despite challenges, the study demonstrates how action research methods contribute to development and change of diabetes education practice while simultaneously adding knowledge to the action...

  6. Research network involving retired experts as a means to keep alive relevant knowledge - The case of IPEN in Brazil

    International Nuclear Information System (INIS)

    Barroso, A.C.O.; Imakuma, K.; Reis, J.S.B. Jr.

    2007-01-01

    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

  7. Parents' Voice: Concerns, barriers and benefits of Parental Involvement for children with Autism in Malaysia

    OpenAIRE

    R Muralidharan, Gayathri Devi

    2016-01-01

    The involvement of parents at home and in school is a crucial factor in the development of child with autism. This qualitative study explored the similarities and difference between the perceptions of Malaysian parents on parental involvement. The selected participants are parents of children with autism, and are currently enrolled either in a primary government or private school. The present study used semi-structured interviews to examine the participants' views on parental involvement. A t...

  8. A framework for public involvement at the design stage of NHS health and social care research: time to develop ethically conscious standards.

    Science.gov (United States)

    Pandya-Wood, Raksha; Barron, Duncan S; Elliott, Jim

    2017-01-01

    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

  9. Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study.

    Science.gov (United States)

    Crocker, Joanna C; Boylan, Anne-Marie; Bostock, Jennifer; Locock, Louise

    2017-06-01

    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.

  10. Preventing Juvenile Justice Involvement for Young Women: An Introduction to an Evaluation of the PACE Center for Girls. Research Brief

    Science.gov (United States)

    Millenky, Megan; Mage, Caroline

    2016-01-01

    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…

  11. Involving children and young people in clinical research through the forum of a European Young Persons' Advisory Group: needs and challenges.

    Science.gov (United States)

    Gaillard, Segolene; Malik, Salma; Preston, Jenny; Escalera, Begonya Nafria; Dicks, Pamela; Touil, Nathalie; Mardirossian, Sandrine; Claverol-Torres, Joana; Kassaï, Behrouz

    2018-02-19

    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.

  12. Guiding curriculum development of a national research training program in thrombosis medicine: A needs assessment involving faculty and trainees.

    Science.gov (United States)

    Skeith, Leslie; Carrier, Marc; Shivakumar, Sudeep; Langlois, Nicole; Le Gal, Gregoire; Harris, Ilene; Gonsalves, Carol

    2018-02-01

    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.

  13. Involving Members of the Public in Health Economics Research: Insights from Selecting Health States for Valuation to Estimate Quality-Adjusted Life-Year (QALY) Weights.

    Science.gov (United States)

    Goodwin, Elizabeth; Boddy, Kate; Tatnell, Lynn; Hawton, Annie

    2018-04-01

    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

  14. If you come from a well-known organisation, I will trust you: Exploring and understanding the community's attitudes towards healthcare research in Cambodia.

    Science.gov (United States)

    Pol, Sreymom; Fox-Lewis, Shivani; Neou, Leakhena; Parker, Michael; Kingori, Patricia; Turner, Claudia

    2018-01-01

    To explore Cambodian community members' understanding of and attitudes towards healthcare research. This qualitative study generated data from semi-structured interviews and focus group discussions. This study was conducted at a non-governmental paediatric hospital and in nearby villages in Siem Reap province, Cambodia. A total of ten semi-structured interviews and four focus group discussions were conducted, involving 27 participants. Iterative data collection and analysis were performed concurrently. Data were analysed by thematic content analysis and the coding structure was developed using relevant literature. Participants did not have a clear understanding of what activities related to research compared with those for routine healthcare. Key attitudes towards research were responsibility and trust: personal (trust of the researcher directly) and institutional (trust of the institution as a whole). Villagers believe the village headman holds responsibility for community activities, while the village headman believes that this responsibility should be shared across all levels of the government system. It is essential for researchers to understand the structure and relationship within the community they wish to work with in order to develop trust among community participants. This aids effective communication and understanding among all parties, enabling high quality ethical research to be conducted.

  15. Service user involvement in mental health system strengthening in a rural African setting: qualitative study

    OpenAIRE

    Abayneh, Sisay; Lempp, Heidi; Alem, Atalay; Alemayehu, Daniel; Eshetu, Tigist; Lund, Crick; Semrau, Maya; Thornicroft, Graham; Hanlon, Charlotte

    2017-01-01

    Background It is essential to involve service users in efforts to expand access to mental health care in integrated primary care settings in low- and middle-income countries (LMICs). However, there is little evidence from LMICs to guide this process. The aim of this study was to explore barriers to, and facilitators of, service user/caregiver involvement in rural Ethiopia to inform the development of a scalable approach. Methods Thirty nine semi-structured interviews were carried out with pur...

  16. THE ROLE OF SUPERVISOR SUPPORT İN RELATIONS BETWEEN EMOTIONALLABOR AND JOB INVOLVEMENT: A RESEARCH ON UNIVERSITY STUDENTAFFAIRS PERSONNEL

    Directory of Open Access Journals (Sweden)

    Asena ALTIN GÜLOVA

    2013-12-01

    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.

  17. Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study

    Science.gov (United States)

    Snape, D; Kirkham, J; Preston, J; Popay, J; Britten, N; Collins, M; Froggatt, K; Gibson, A; Lobban, F; Wyatt, K; Jacoby, A

    2014-01-01

    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

  18. Evolving the multiple roles of 'patients' in health-care research: reflections after involvement in a trial of shared decision-making.

    Science.gov (United States)

    Thornton, Hazel; Edwards, Adrian; Elwyn, Glyn

    2003-09-01

    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.

  19. Emphasizing Research (Further) in Undergraduate Technical Communication Curricula: Involving Undergraduate Students with an Academic Journal's Publication and Management

    Science.gov (United States)

    Ford, Julie Dyke; Newmark, Julianne

    2011-01-01

    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…

  20. A Classroom-Based Distributed Workflow Initiative for the Early Involvement of Undergraduate Students in Scientific Research

    Science.gov (United States)

    Friedrich, Jon M.

    2014-01-01

    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…

  1. A review of the issues and challenges involved in using participant-produced photographs in nursing research.

    Science.gov (United States)

    Balmer, Claire; Griffiths, Frances; Dunn, Janet

    2015-07-01

    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.

  2. Prostate cancer patients’ experience of involvement in decision-making

    DEFF Research Database (Denmark)

    Løwe Netsey-Afedo, Mette Margrethe; Birkelund, Regner

    2016-01-01

    ’ experiences of being involved in the course of their disease and whether they experience being informed in a relevant way. In Denmark this area remains under investigated. Patient satisfaction, treatment results and patient safety can be improved if patients are involved in decision-making concerning...... sufficiently informed. Method: This study is based on qualitative semi-structured life-world interviews of 6 prostate cancer patients. The interviews were carried out in the participants’ homes during March and April 2014. The interpretation of the data is based on Paul Ricoeur’s phenomenological...

  3. The impact of patient and public involvement in the work of the Dementias & Neurodegenerative Diseases Research Network (DeNDRoN): case studies.

    Science.gov (United States)

    Iliffe, Steve; McGrath, Terry; Mitchell, Douglas

    2013-12-01

    (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

  4. Evolving the multiple roles of 'patients' in health-care research: reflections after involvement in a trial of shared decision-making.

    NARCIS (Netherlands)

    Thornton, H.; Edwards, A.; Elwyn, G.

    2003-01-01

    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

  5. A Qualitative Methodology for Minority Language Media Production Research

    Directory of Open Access Journals (Sweden)

    Enrique Uribe-Jongbloed PhD

    2014-02-01

    Full Text Available This article presents a methodological construction for research on small groups of minority media producers, especially those who are involved in multilingual settings. The set of qualitative tools are explained and their advantages and disadvantages explored, based on the literature on the subject. Then, the debate is contrasted with the practical experience of its application with minority language producers, indigenous and ethnic radio broadcasters in Colombia and audiovisual producers in Wales. The reflection upon the results leads to a final discussion that brings the adjustments required to increase the advantages and diminish the disadvantages of the proposed combined three-step methodology of an interview to the double (ITTD, a day of participant observation, and a final lengthier semi-structured interview.

  6. It's not just 'What' you do, it's also the 'Way' that you do it: Patient and Public Involvement in the Development of Health Research.

    Science.gov (United States)

    Devonport, Tracey J; Nicholls, Wendy; Johnston, Lynne H; Gutteridge, Robin; Watt, Angela

    2018-03-01

    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.

  7. A Preliminary Exploration of Operating Models of Second Cycle/Research Led Open Education Involving Industry Collaboration

    Science.gov (United States)

    Olsson, Ulf

    2014-01-01

    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…

  8. Using Social Media to Involve the Public in Wildlife Research--The SNAMP Fisher Sock Collection Drive

    Science.gov (United States)

    Kocher, Susie; Lombardo, Anne; Sweitzer, Rick A.

    2013-01-01

    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…

  9. 34 CFR 97.405 - Research involving greater than minimal risk but presenting the prospect of direct benefit to the...

    Science.gov (United States)

    2010-07-01

    ... 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...

  10. 34 CFR 97.406 - Research involving greater than minimal risk and no prospect of direct benefit to individual...

    Science.gov (United States)

    2010-07-01

    ... 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...

  11. Community-Involved Learning to Expand Possibilities for Vulnerable Children: A Critical Communicative, Sen's Capability, and Action Research Approach

    Science.gov (United States)

    Kim, Kyung Hi

    2014-01-01

    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…

  12. The Effect of Technical Assistance on Involvement and Use: The Case of a Research, Evaluation, and Technical Assistance Project

    Science.gov (United States)

    Roseland, Denise; Volkov, Boris B.; Callow-Heusser, Catherine

    2011-01-01

    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…

  13. 40 CFR 26.1703 - Prohibition of reliance on research involving intentional exposure of human subjects who are...

    Science.gov (United States)

    2010-07-01

    ...), 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...

  14. Campus Community Involvement in an Experimental Food Research Project Increases Students' Motivation and Improves Perceived Learning Outcomes

    Science.gov (United States)

    Goto, K.; Bianco-Simeral, S.

    2009-01-01

    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…

  15. Using sediment transport and river restoration to link research and education, and promote K-12 female involvement in STEM fields

    Science.gov (United States)

    Yager, E. M.; Bradley-Eitel, K.

    2011-12-01

    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

  16. A critical analysis of the implementation of service user involvement in primary care research and health service development using normalization process theory.

    Science.gov (United States)

    Tierney, Edel; McEvoy, Rachel; O'Reilly-de Brún, Mary; de Brún, Tomas; Okonkwo, Ekaterina; Rooney, Michelle; Dowrick, Chris; Rogers, Anne; MacFarlane, Anne

    2016-06-01

    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.

  17. Understanding social forces involved in diabetes outcomes: a systems science approach to quality-of-life research.

    Science.gov (United States)

    Lounsbury, David W; Hirsch, Gary B; Vega, Chawntel; Schwartz, Carolyn E

    2014-04-01

    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.

  18. Research and development activities of the Joint Research Centre -JRC and its involvement in the development of future nuclear energy systems

    International Nuclear Information System (INIS)

    Schenkel, R.

    2007-01-01

    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

  19. Public involvement in pharmacogenomics research: a national survey on public attitudes towards pharmacogenomics research and the willingness to donate DNA samples to a DNA bank in Japan.

    Science.gov (United States)

    Kobayashi, Eriko; Satoh, Nobunori

    2009-11-01

    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.

  20. 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.

    Science.gov (United States)

    Bowling, Bethany V; Schultheis, Patrick J; Strome, Erin D

    2016-02-01

    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.

  1. Medical education for equity in health: a participatory action research involving persons living in poverty and healthcare professionals.

    Science.gov (United States)

    Hudon, Catherine; Loignon, Christine; Grabovschi, Cristina; Bush, Paula; Lambert, Mireille; Goulet, Émilie; Boyer, Sophie; De Laat, Marianne; Fournier, Nathalie

    2016-04-12

    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

  2. Promoting HIV Vaccine Research in African American Communities: Does the Theory of Reasoned Action Explain Potential Outcomes of Involvement?

    Science.gov (United States)

    Frew, Paula M; Archibald, Matthew; Martinez, Nina; del Rio, Carlos; Mulligan, Mark J

    2007-01-01

    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.

  3. Policy Writing as Dialogue: Drafting an Aboriginal Chapter for Canada's Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans

    Directory of Open Access Journals (Sweden)

    Jeff Reading

    2010-07-01

    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.

  4. Involving Families with Osteogenesis Imperfecta in Health Service Research: Joint Development of the OI/ECE Questionnaire.

    Directory of Open Access Journals (Sweden)

    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

  5. Older peoples experiences involving the decision to transition to an aged care home

    OpenAIRE

    Zamanzadeh Vahid; Pakpour Vahid; Rahmani Azad; Lorraine Chenoweth Lynnette; Mohammadi Eesa

    2016-01-01

    The decision to relocate to an aged care home can is important change in older adults live but little attention has been paid to their experiences of this decision. The study explored older people’s experiences involving the decision to transition to an aged care home. Data were obtained via semi-structured interviews with 17 participants, which were content analyzed. Results: Transition motives, ambiguity, participation in decision making and decision making meaning were four the...

  6. Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions

    Science.gov (United States)

    Lawn, Sharon; Venning, Anthony; Winsall, Megan; Jones, Gabrielle M; Wyld, Kaisha; Damarell, Raechel A; Antezana, Gaston; Schrader, Geoffrey; Smith, David; Collin, Philippa; Bidargaddi, Niranjan

    2015-01-01

    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

  7. Drug quality in South Africa: perceptions of key players involved in medicines distribution.

    Science.gov (United States)

    Patel, Aarti; Norris, Pauline; Gauld, Robin; Rades, Thomas

    2009-01-01

    Substandard medicines contribute to poor public health and affect development, especially in the developing world. However knowledge of how manufacturers, distributors and providers understand the concept of drug quality and what strategies they adopt to ensure drug quality is limited, particularly in the developing world. The purpose of this paper is to explore pharmaceutical manufacturers', distributors' and providers' perceptions of drug quality in South Africa and how they ensure the quality of drugs during the distribution process. The approach taken was qualitative data collection through key informant interviews using a semi-structured interview guide. Transcripts were analysed thematically in Johannesburg, Pretoria and Durban, South Africa. Participants were recruited purposefully from a South African pharmaceutical manufacturer, SA subsidiaries of international manufacturers, national distribution companies, national wholesaler, public and private sector pharmacists, and a dispensing doctor. In total, ten interviews were conducted. Participants described drug quality in terms of the product and the processes involved in manufacturing and handling the product. Participants identified purchasing registered medicines from licensed suppliers, use of standard operating procedures, and audits between manufacturer and distributor and/or provider as key strategies employed to protect medicine quality. Effective communication amongst all stakeholders, especially in terms of providing feedback regarding complaints about medicine quality, appears as a potential area of concern, which would benefit from further research. The paper hightlights that ensuring medicine quality should be a shared responsibility amongst all involved in the distribution process to prevent medicines moving from one distribution system (public) into another (private).

  8. Aspects of Information Architecture involved in process mapping in Military Organizations under the semiotic perspective

    Directory of Open Access Journals (Sweden)

    Mac Amaral Cartaxo

    2016-04-01

    Full Text Available Introduction: The description of the processes to represent the activities in an organization has important call semiotic, It is the flowcharts of uses, management reports and the various forms of representation of the strategies used. The subsequent interpretation of the organization's employees involved in learning tasks and the symbols used to translate the meanings of management practices is essential role for the organization. Objective: The objective of this study was to identify evidence of conceptual and empirical, on aspects of information architecture involved in the mapping process carried out in military organizations under the semiotic perspective. Methodology: The research is characterized as qualitative, case study and the data collection technique was the semi-structured interview, applied to management advisors. Results: The main results indicate that management practices described with the use of pictorial symbols and different layouts have greater impact to explain the relevance of management practices and indicators. Conclusion: With regard to the semiotic appeal, it was found that the impact of a management report is significant due to the use of signs and layout that stimulate further reading by simplifying complex concepts in tables, diagrams summarizing lengthy descriptions.

  9. Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study

    Science.gov (United States)

    Snape, D; Kirkham, J; Britten, N; Froggatt, K; Gradinger, F; Lobban, F; Popay, Jennie; Wyatt, K; Jacoby, Ann

    2014-01-01

    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

  10. Public involvement in pharmacogenomics research: a national survey on patients' attitudes towards pharmacogenomics research and the willingness to donate DNA samples to a DNA bank in Japan.

    Science.gov (United States)

    Kobayashi, Eriko; Sakurada, Tomoya; Ueda, Shiro; Satoh, Nobunori

    2011-05-01

    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.

  11. Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study.

    Science.gov (United States)

    Price, Amy; Schroter, Sara; Snow, Rosamund; Hicks, Melissa; Harmston, Rebecca; Staniszewska, Sophie; Parker, Sam; Richards, Tessa

    2018-03-23

    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.

  12. Co-producing public involvement training with members of the public and research organisations in the East Midlands: creating, delivering and evaluating the lay assessor training programme.

    Science.gov (United States)

    Horobin, Adele; Brown, George; Higton, Fred; Vanhegan, Stevie; Wragg, Andrew; Wray, Paula; Walker, Dawn-Marie

    2017-01-01

    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

  13. Practical strategies and perceptions from community pharmacists following their experiences with conducting pharmacy practice research: a qualitative content analysis.

    Science.gov (United States)

    De Vera, Mary A; Campbell, Natasha K J; Chhina, Harpreet; Galo, Jessica S; Marra, Carlo

    2017-10-26

    While prior research identified barriers to conducting research in community pharmacies, there remains a need to better understand facilitators to ensure successful collaborations between academic researchers and pharmacists. Our objective was to determine the experiences and perspectives of community pharmacists who have recently conducted a pharmacy practice-based research study to gain in-depth understanding of challenges as well as facilitators and identify strategies and solutions. We conducted a qualitative study involving one-on-one semi-structured telephone interviews with community pharmacists following the completion of a practice-based research study in their pharmacies. Interview transcripts were analysed using inductive content analysis involving open coding, creating categories and abstraction into final themes. Eleven pharmacists participated in the qualitative interviews. We identified six major themes including: (1) barriers (e.g. time constraints); (2) facilitators (e.g. ideal pharmacy layout); (3) support and resources from academic researchers (e.g. helpfulness of training, easy-to-use study materials); (4) pharmacist-initiated strategies for conducting research (beyond prior suggestions from researchers); (5) suggestions for future pharmacy practice research; and (6) motivation for conducting pharmacy practice research. These findings informed practical strategies targeted at academic researchers and pharmacists, respectively, to facilitate the conduct of research in community pharmacists across various stages of the research process. Our study adds to better understanding of community pharmacists' perspectives on conducting research and identifies practical solutions that can be readily implemented by academic researchers and pharmacists participating in research. © 2017 Royal Pharmaceutical Society.

  14. How parents and practitioners experience research without prior consent (deferred consent) for emergency research involving children with life threatening conditions: a mixed method study.

    Science.gov (United States)

    Woolfall, Kerry; Frith, Lucy; Gamble, Carrol; Gilbert, Ruth; Mok, Quen; Young, Bridget

    2015-09-18

    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

  15. How parents and practitioners experience research without prior consent (deferred consent) for emergency research involving children with life threatening conditions: a mixed method study

    Science.gov (United States)

    Woolfall, Kerry; Frith, Lucy; Gamble, Carrol; Gilbert, Ruth; Mok, Quen; Young, Bridget

    2015-01-01

    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

  16. Human cloning and stem cell research: engaging in the political process. (Legislation review: prohibition of Human Cloning Act 2002 and the research involving Human Embryos Act).

    Science.gov (United States)

    Skene, Loane

    2008-03-01

    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.

  17. Using the 2010 Eyjafjallajökull eruption as an example of citizen involvement in scientific research

    Science.gov (United States)

    Klemetti, E. W.

    2010-12-01

    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.

  18. Increasing Public Access to Scientific Research through Stakeholder Involvement: Ecological Effects of Sea Level Rise in the Northern Gulf of Mexico

    Science.gov (United States)

    Hagen, S. C.; Stephens, S. H.; DeLorme, D. E.; Ruple, D.; Graham, L.

    2013-12-01

    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

  19. The Impact of the Physical Activity Policy Research Network.

    Science.gov (United States)

    Manteiga, Alicia M; Eyler, Amy A; Valko, Cheryl; Brownson, Ross C; Evenson, Kelly R; Schmid, Thomas

    2017-03-01

    Lack of physical activity is one of the greatest challenges of the 21st century. The Physical Activity Policy Research Network (PAPRN) is a thematic network established in 2004 to identify determinants, implementation, and outcomes of policies that are effective in increasing physical activity. The purpose of this study is to describe the products of PAPRN and make recommendations for future research and best practices. A mixed methods approach was used to obtain both quantitative and qualitative data on the network. First, in 2014, PAPRN's dissemination products from 2004 to 2014 were extracted and reviewed, including 57 publications and 56 presentations. Next, semi-structured qualitative interviews were conducted with 25 key network participants from 17 locations around the U.S. The transcripts were transcribed and coded. The results of the interviews indicated that the research network addressed several components of its mission, including the identification of physical activity policies, determinants of these policies, and the process of policy implementation. However, research focusing on physical activity policy outcomes was limited. Best practices included collaboration between researchers and practitioners and involvement of practitioners in research design, data collection, and dissemination of results. PAPRN is an example of a productive research network and has contributed to both the process and content of physical activity policy research over the past decade. Future research should emphasize physical activity policy outcomes. Additionally, increased partnerships with practitioners for collaborative, cross-sectoral physical activity policy research should be developed. Copyright © 2016 American Journal of Preventive Medicine. All rights reserved.

  20. Interactive emergency communication involving persons in crisis.

    Science.gov (United States)

    Nordby, Halvor; Nøhr, Øyvind

    2009-01-01

    We studied the dialogue between telephone operators at medical emergency communication centres in Norway and parents of children later diagnosed with sudden infant death syndrome. The aim was to understand how the parents experienced the communication with the telephone operators. The qualitative method involved semi-structured interviews. We interviewed six respondents from urban areas and five from rural areas. An important finding was that all the parents were satisfied with the resuscitation instructions they received. It was also perceived as important that the emergency operators expressed empathy and care. We believe that it is not merely the quality of the resuscitation attempts that the operators' efforts should be measured against. It is also important that the operators provide good explanations and express emotional support. Our findings indicate that this will be enormously appreciated, even if callers do not feel that they are capable of performing optimum resuscitation.

  1. Reflections on the United States National Institutes of Health draft guidelines for research involving human pluripotent stem cells--theological perspective.

    Science.gov (United States)

    Sotis, J J

    2000-01-01

    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.

  2. Ethical issues in research involving minority populations: the process and outcomes of protocol review by the Ethics Committee of the Faculty of Tropical Medicine, Mahidol University, Thailand

    Science.gov (United States)

    2013-01-01

    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

  3. Brokering the Research-Practice Gap: A typology.

    Science.gov (United States)

    Neal, Jennifer Watling; Neal, Zachary P; Kornbluh, Mariah; Mills, Kristen J; Lawlor, Jennifer A

    2015-12-01

    Despite widespread recognition of a research-practice gap in multiple service sectors, less is known about how pre-existing communication channels facilitate the flow of information between researchers and practitioners. In the current study, we applied an existing typology of brokerage developed by Gould and Fernandez (Sociol Methodol 19:89-126, 1989) to examine what types of brokerage facilitate information spread between researchers and educational practitioners. Specifically, we conducted semi-structured interviews with 19 school administrators and staff in two public school districts regarding their experiences searching for information about instructional, health, and social skills programs. Using deductive content analysis, we found evidence of all five types of brokerage identified by Gould and Fernandez (1989). However, only three types of brokerage-gatekeepers, representatives, and liaisons-were involved in the flow of information between school administrators and researchers. Moreover, information transfer often occurred in longer chains that involved multiple, distinct types of brokerage. We conclude with the broad implications of our findings for narrowing the research-practice gap by improving researchers' dissemination efforts and practitioners' search for information.

  4. Involving migrants in the development of guidelines for communication in cross-cultural general practice consultations: a participatory learning and action research project.

    Science.gov (United States)

    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

    2015-09-21

    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.

  5. Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation.

    Science.gov (United States)

    de Freitas, Cláudia; Dos Reis, Vanessa; Silva, Susana; Videira, Paula A; Morava, Eva; Jaeken, Jaak

    2017-09-26

    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

  6. A rural community's involvement in the design and usability testing of a computer-based informed consent process for the Personalized Medicine Research Project.

    Science.gov (United States)

    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

    2014-01-01

    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

  7. On truth-telling and storytelling: Truth-seeking during research involving communities with an oral culture and a history of violent conflict

    Directory of Open Access Journals (Sweden)

    A G Vethuizen

    2014-12-01

    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.

  8. Family-Mediated Exercises (FAME): an exploration of participant's involvement in a novel form of exercise delivery after stroke.

    Science.gov (United States)

    Galvin, Rose; Stokes, Emma; Cusack, Tara

    2014-01-01

    Family members and caregivers play a significant supporting role in the rehabilitation process after stroke, a role that may increase with the growing trend of providing stroke rehabilitation in the individual's own home after discharge from the hospital. To explore the impact of family involvement in exercise delivery after stroke from the perspective of the individual with stroke and his or her family member. A qualitative research design was used in which in-depth semi-structured interviews were carried out with participants who had taken part in an 8-week family-mediated exercise program (FAME). A phenomenological theoretical framework and a grounded theory methodology were used to inform the data analysis. Fifteen individuals with acute stroke and 15 designated "family" members participated in the study after completion of an 8-week, individually tailored, family-mediated exercise intervention. An overarching concept of patient-centeredness emerged after data analysis, which detailed the extent to which individuals with stroke and their families felt that their rehabilitation was enhanced by the active role of their families. Four key themes that expanded the concept of patient-centeredness were identified: personalized nature of the reported benefits, therapeutic value of the program, family involvement, and caregiver commitment to program. This research serves to increase our understanding of the role of family members in the rehabilitation process after stroke, particularly in relation to exercise delivery, from the perspective of the individuals with stroke and their family members.

  9. Non-invasive Drosophila ECG recording by using eutectic gallium-indium alloy electrode: a feasible tool for future research on the molecular mechanisms involved in cardiac arrhythmia.

    Directory of Open Access Journals (Sweden)

    Po-Hung Kuo

    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

  10. 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

    Directory of Open Access Journals (Sweden)

    Patrice ePotvin

    2014-01-01

    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.

  11. From actors to authors: a first account about the involvement of patients in the informed consent governance of a major Italian translational research hospital.

    Science.gov (United States)

    Casati, Sara; Monti, Paolo; Bonino, Ferruccio

    2010-01-01

    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.

  12. Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis.

    Science.gov (United States)

    Shimmin, Carolyn; Wittmeier, Kristy D M; Lavoie, Josée G; Wicklund, Evan D; Sibley, Kathryn M

    2017-08-07

    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

  13. Sweat, Skepticism, and Uncharted Territory: A Qualitative Study of Opinions on Data Sharing Among Public Health Researchers and Research Participants in Mumbai, India.

    Science.gov (United States)

    Hate, Ketaki; Meherally, Sanna; Shah More, Neena; Jayaraman, Anuja; Bull, Susan; Parker, Michael; Osrin, David

    2015-07-01

    Efforts to internalize data sharing in research practice have been driven largely by developing international norms that have not incorporated opinions from researchers in low- and middle-income countries. We sought to identify the issues around ethical data sharing in the context of research involving women and children in urban India. We interviewed researchers, managers, and research participants associated with a Mumbai non-governmental organization, as well as researchers from other organizations and members of ethics committees. We conducted 22 individual semi-structured interviews and involved 44 research participants in focus group discussions. We used framework analysis to examine ideas about data and data sharing in general; its potential benefits or harms, barriers, obligations, and governance; and the requirements for consent. Both researchers and participants were generally in favor of data sharing, although limited experience amplified their reservations. We identified three themes: concerns that the work of data producers may not receive appropriate acknowledgment, skepticism about the process of sharing, and the fact that the terrain of data sharing was essentially uncharted and confusing. To increase data sharing in India, we need to provide guidelines, protocols, and examples of good practice in terms of consent, data preparation, screening of applications, and what individuals and organizations can expect in terms of validation, acknowledgment, and authorship. © The Author(s) 2015.

  14. Anthropogenic versus natural processes and pollution in Padana Valley in last years involving new communication/policy strategies and ethical issues in research evaluation

    Science.gov (United States)

    Quattrocchi, Fedora; Vaccaro, Carmela; Boschi, Enzo

    2014-05-01

    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

  15. An alternative path to improving university Earth science teaching and developing the geoscience workforce: Postdoctoral research faculty involvement in clinical teacher preparation

    Science.gov (United States)

    Zirakparvar, N. A.; Sessa, J.; Ustunisik, G. K.; Nadeau, P. A.; Flores, K. E.; Ebel, D. S.

    2013-12-01

    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.

  16. Connecting Physical University Spaces with Research-Based Education Strategy

    Science.gov (United States)

    Carnell, Brent

    2017-01-01

    This paper looks at the link between enhancing education and ensuring an innovative fit-for-purpose estate. It argues that a nuanced approach and joined-up dialogue is needed between university staff whose remit covers these areas. Drawing from fifteen semi-structured interviews with students and staff at a research-intensive university in London,…

  17. Doctoral research on architecture in Nigeria: Exploring domains, extending boundaries

    Directory of Open Access Journals (Sweden)

    Adetokunbo Oluwole Ilesanmi

    2016-03-01

    Full Text Available This paper explored through a literature review, the domains of research in Architecture and the nature of doctoral research, with a view to contributing to the evolving research agenda in the Nigerian context. The research method involved a descriptive and thematic analysis of the titles and abstracts of completed doctoral theses in Architecture in Nigeria, in the last 26 years (1990–2015, complemented by semi-structured interviews with six key informants. The study revealed an emphasis on Housing-related topics (34% relative to other research modules, such as׳ History and Theory׳ (20% and ׳Design and Production׳ (18%. It also reflected the limited coverage and scope of current research, relative to the global terrain, as evidenced in the article titles and contents of 45 Architecture-related Journals. The results of the interviews indicated the strong influence of supervisors׳ areas of interest in the choices of thesis titles. It highlighted reasons for the perceived focus on Housing, which reflect its unique place and multi-disciplinary nature. It concluded that extending the boundaries of architectural research at the doctoral level could be beneficial to the discipline and profession in Nigeria in order to align with global trends, while keeping cognizance of the local contexts.

  18. How can the operating environment for nutrition research be improved in sub-Saharan Africa? The views of African researchers.

    Science.gov (United States)

    Van Royen, Kathleen; Lachat, Carl; Holdsworth, Michelle; Smit, Karlien; Kinabo, Joyce; Roberfroid, Dominique; Nago, Eunice; Garimoi Orach, Christopher; Kolsteren, Patrick

    2013-01-01

    Optimal nutrition is critical for human development and economic growth. Sub-Saharan Africa is facing high levels of food insecurity and only few sub-Saharan African countries are on track to eradicate extreme poverty and hunger by 2015. Effective research capacity is crucial for addressing emerging challenges and designing appropriate mitigation strategies in sub-Saharan Africa. A clear understanding of the operating environment for nutrition research in sub-Saharan Africa is a much needed prerequisite. We collected data on the barriers and requirements for conducting nutrition research in sub-Saharan Africa through semi-structured interviews with 144 participants involved in nutrition research in 35 countries in sub-Saharan Africa. A total of 133 interviews were retained for coding. The main barriers identified for effective nutrition research were the lack of funding due to poor recognition by policymakers of the importance of nutrition research and under-utilisation of research findings for developing policy, as well as an absence of research priority setting from within Africa. Current research topics were perceived to be mainly determined by funding bodies from outside Africa. Nutrition researchers argued for more commitment from policymakers at national level. The low capacity for nutrition research was mainly seen as a consequence of insufficient numbers of nutrition researchers, limited skills and a poor research infrastructure. In conclusion, African nutrition researchers argued how research priorities need to be identified by African stakeholders, accompanied by consensus building to enable creating a problem-driven national research agenda. In addition, it was considered necessary to promote interactions among researchers, and between researchers and policymakers. Multidisciplinary research and international and cross-African collaboration were seen as crucial to build capacity in sub-Saharan nutrition research.

  19. How can the operating environment for nutrition research be improved in sub-Saharan Africa? The views of African researchers.

    Directory of Open Access Journals (Sweden)

    Kathleen Van Royen

    Full Text Available Optimal nutrition is critical for human development and economic growth. Sub-Saharan Africa is facing high levels of food insecurity and only few sub-Saharan African countries are on track to eradicate extreme poverty and hunger by 2015. Effective research capacity is crucial for addressing emerging challenges and designing appropriate mitigation strategies in sub-Saharan Africa. A clear understanding of the operating environment for nutrition research in sub-Saharan Africa is a much needed prerequisite. We collected data on the barriers and requirements for conducting nutrition research in sub-Saharan Africa through semi-structured interviews with 144 participants involved in nutrition research in 35 countries in sub-Saharan Africa. A total of 133 interviews were retained for coding. The main barriers identified for effective nutrition research were the lack of funding due to poor recognition by policymakers of the importance of nutrition research and under-utilisation of research findings for developing policy, as well as an absence of research priority setting from within Africa. Current research topics were perceived to be mainly determined by funding bodies from outside Africa. Nutrition researchers argued for more commitment from policymakers at national level. The low capacity for nutrition research was mainly seen as a consequence of insufficient numbers of nutrition researchers, limited skills and a poor research infrastructure. In conclusion, African nutrition researchers argued how research priorities need to be identified by African stakeholders, accompanied by consensus building to enable creating a problem-driven national research agenda. In addition, it was considered necessary to promote interactions among researchers, and between researchers and policymakers. Multidisciplinary research and international and cross-African collaboration were seen as crucial to build capacity in sub-Saharan nutrition research.

  20. How Can the Operating Environment for Nutrition Research Be Improved in Sub-Saharan Africa? The Views of African Researchers

    Science.gov (United States)

    Van Royen, Kathleen; Lachat, Carl; Holdsworth, Michelle; Smit, Karlien; Kinabo, Joyce; Roberfroid, Dominique; Nago, Eunice; Garimoi Orach, Christopher; Kolsteren, Patrick

    2013-01-01

    Optimal nutrition is critical for human development and economic growth. Sub-Saharan Africa is facing high levels of food insecurity and only few sub-Saharan African countries are on track to eradicate extreme poverty and hunger by 2015. Effective research capacity is crucial for addressing emerging challenges and designing appropriate mitigation strategies in sub-Saharan Africa. A clear understanding of the operating environment for nutrition research in sub-Saharan Africa is a much needed prerequisite. We collected data on the barriers and requirements for conducting nutrition research in sub-Saharan Africa through semi-structured interviews with 144 participants involved in nutrition research in 35 countries in sub-Saharan Africa. A total of 133 interviews were retained for coding. The main barriers identified for effective nutrition research were the lack of funding due to poor recognition by policymakers of the importance of nutrition research and under-utilisation of research findings for developing policy, as well as an absence of research priority setting from within Africa. Current research topics were perceived to be mainly determined by funding bodies from outside Africa. Nutrition researchers argued for more commitment from policymakers at national level. The low capacity for nutrition research was mainly seen as a consequence of insufficient numbers of nutrition researchers, limited skills and a poor research infrastructure. In conclusion, African nutrition researchers argued how research priorities need to be identified by African stakeholders, accompanied by consensus building to enable creating a problem-driven national research agenda. In addition, it was considered necessary to promote interactions among researchers, and between researchers and policymakers. Multidisciplinary research and international and cross-African collaboration were seen as crucial to build capacity in sub-Saharan nutrition research. PMID:23776663

  1. From Local to EXtreme Environments (FLEXE) Student-Scientist Online Forums: hypothesis-based research examining ways to involve scientists in effective science education

    Science.gov (United States)

    Goehring, L.; Carlsen, W.; Fisher, C. R.; Kerlin, S.; Trautmann, N.; Petersen, W.

    2011-12-01

    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

  2. [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].

    Science.gov (United States)

    Burelli, Thomas; Bambridge, Tamatoa

    2015-12-01

    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.

  3. Academic Uses of Video Games: A Qualitative Assessment of Research and Teaching Needs at a Large Research University

    Science.gov (United States)

    Farrell, Shannon L.; Neeser, Amy E.; Bishoff, Carolyn

    2017-01-01

    Academic libraries develop collections and services for scholars who use video games in teaching and research. However, there are no assessments of related information and technology needs. The authors conducted 30 semi-structured interviews to gather data about these needs and understand how the University of Minnesota Libraries can facilitate…

  4. What do pharmaceutical industry professionals in Europe believe about involving patients and the public in research and development of medicines? A qualitative interview study.

    Science.gov (United States)

    Parsons, Suzanne; Starling, Bella; Mullan-Jensen, Christine; Tham, Su-Gwan; Warner, Kay; Wever, Kim

    2016-01-07

    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/

  5. Learning effects of active involvement of secondary school students in scientific research within the Sparkling Science project "FlussAu:WOW!"

    Science.gov (United States)

    Poppe, Michaela; Zitek, Andreas; Scheikl, Sigrid; Heidenreich, Andrea; Kurz, Roman; Schrittwieser, Martin; Muhar, Susanne

    2014-05-01

    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

  6. Talking about living and dying with the oldest old: public involvement in a study on end of life care in care homes

    Directory of Open Access Journals (Sweden)

    Goodman Claire

    2011-11-01

    Full Text Available Abstract Background Public involvement in research on sensitive subjects, such as death and dying, can help to ensure that questions are framed to reflect the interests of their peers, develop a shared understanding of issues raised, and moderate the often unequal power relationship between researcher and participant. This paper describes the contribution and impact of older members of a Public Involvement in Research group (PIRg to a study on living and dying in care homes. Methods A longitudinal study, with a mixed method approach, its aims were to capture key experiences, events and change over one year, of older people resident in participating care homes in the East of England. Residents were interviewed up to three times and their case notes were reviewed four times over the year. Interviews were semi structured, and recorded. Four members of a Public Involvement in Research group (PIRg contributed to preliminary discussions about the research and three were involved with many of the subsequent stages of the research process including the facilitation of discussion groups with residents. Results There were three areas where the involvement of the Public Involvement in Research group (PIRg positively influenced the study process. These were recruitment, governance and safeguarding, and in collaboration with the residents in the care homes, the discussion and interpretation of emergent findings. PIRg members were of similar age to the residents and their involvement provided different and often more reflective insights of the significance of the findings for the participants. There were examples where decision making about the range of PIRg participation was not always negotiable, and this raised issues about power relationships within the team. Nevertheless, PIRg members expressed personal benefit and satisfaction through participating in the research and a commitment to continue to support research with this older age group. Conclusions

  7. Parental involvement

    Directory of Open Access Journals (Sweden)

    Ezra S Simon

    2005-01-01

    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.

  8. Is there a role for physician involvement in introducing research to surrogate decision makers in the intensive care unit? (The Approach trial: a pilot mixed methods study).

    Science.gov (United States)

    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

    2015-01-01

    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.

  9. Research group librarian – a cooperating partner in research?

    Directory of Open Access Journals (Sweden)

    Heidi Kristin Olsen

    2012-11-01

    Full Text Available Academic libraries encounter many challenges when providing services for researchers and it is evident that use of the library in information searches has reduced significantly over time and continues to decrease.However, a study in Norway in 2007, at Vestfold University College (VUC, demonstrated that there is great potential to increase faculty staff’s use of the library’s digital resources with the right form of engagement. The findings led VUC’s library to focus on its services for this particular user group.In 2009, VUC library initiated a study to investigate the possible effects of a librarian participating as a ‘Research Group Librarian’.The research project, in which this new role was tried out, was called ‘Kindergarten space, materiality, learning and meaning-making’. This was a three year project, funded by the Research Council of Norway. There were eight part time researchers involved in this project, two senior researchers and the research group librarian.The study adopted an ethnographic approach. The research group librarian was a fully participating member of the research team throughout the project.The empirical sources for the study included:semi-structured interviews with the project leader and the participating researchers: short individual interviews at the beginning of the project with each of the research group participants; several group interviews with the majority of the research team midway in the project;observation and field notesThe results are presented under the following categories:implications for the researcher; emphasising behaviour in relation to information search and reference management skills;communication and information within, and evolving from, the project;collaboration in writing a review article;implications for the library – internal, and at VUC in general;the librarian’s role – a ‘boundary worker’?The study demonstrated that as a member of a research group a librarian can

  10. Perceptions of Empowerment Within and Across Partnerships in Community-Based Participatory Research: A Dyadic Interview Analysis.

    Science.gov (United States)

    Paradiso de Sayu, Rebecca; Chanmugam, Amy

    2016-01-01

    Although the concept of empowerment is a key principle of community-based participatory research (CBPR), little is known about how academic and community partners perceive empowerment during a CBPR process. CBPR partners' perceptions of the process were explored using semi-structured interviews with both partners in 10 CBPR partnerships that had completed projects addressing social determinants of health. Dyadic interview analysis was employed to understand dynamics within and across partnerships. Five partnerships showed no differences in perceptions of empowerment. Four had minor discrepancies. Only one partnership varied considerably between partners, where the community partner perceived less empowerment regarding determining the study topic and overall control, influence, and respect throughout the process. This article discusses implications of findings for CBPR. Evaluating partners' perceived empowerment throughout a CBPR project might reveal areas to adjust, as not all projects with quantifiably successful outcomes involve processes that are successful in terms of empowerment. © The Author(s) 2015.

  11. Involving Minority High School Students in Cutting Edge Research through C-DEBI, an NSF-National Science and Technology Center

    Science.gov (United States)

    Singer, E.; Edwards, K. J.

    2012-12-01

    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

  12. Problems Encountered during the Scientific Research Process in Graduate Education: The Institute of Educational Sciences

    Science.gov (United States)

    Akyürek, Erkan; Afacan, Özlem

    2018-01-01

    This study was conducted to determine the problems faced by graduate students when conducting scientific research and to make suggestions for solving these problems. The research model was a case study. Semi-structured interviews were conducted with participants in the study with questions about the problems encountered during scientific research…

  13. Secondary Students' Perceptions of an Interactive Mathematics Review Program: An Action Research Study

    Science.gov (United States)

    Wingard, Crystal Burroughs

    2017-01-01

    The present action research study describes an Interactive Mathematics Review Program (IMRP) developed by the participant-researcher to enable remedial algebra students to learn in a cooperative classroom with pedagogy that promoted collaboration and hands-on, active learning. Data are comprised of surveys, field notes, semi-structured interviews,…

  14. Building Connections: An Interpretative Phenomenological Analysis of Qualitative Research Students' Learning Experiences

    Science.gov (United States)

    Cooper, Robin; Fleischer, Anne; Cotton, Fatima A.

    2012-01-01

    This paper describes a phenomenological study in which the authors explored students' experiences learning qualitative research in a variety of academic fields. Semi-structured in-depth interviews were conducted with six participants from various academic fields who had completed at least one post-secondary-school-level qualitative research course…

  15. United States private-sector physicians and pharmaceutical contract research: a qualitative study.

    Science.gov (United States)

    Fisher, Jill A; Kalbaugh, Corey A

    2012-01-01

    There have been dramatic increases over the past 20 years in the number of nonacademic, private-sector physicians who serve as principal investigators on US clinical trials sponsored by the pharmaceutical industry. However, there has been little research on the implications of these investigators' role in clinical investigation. Our objective was to study private-sector clinics involved in US pharmaceutical clinical trials to understand the contract research arrangements supporting drug development, and specifically how private-sector physicians engaged in contract research describe their professional identities. We conducted a qualitative study in 2003-2004 combining observation at 25 private-sector research organizations in the southwestern United States and 63 semi-structured interviews with physicians, research staff, and research participants at those clinics. We used grounded theory to analyze and interpret our data. The 11 private-sector physicians who participated in our study reported becoming principal investigators on industry clinical trials primarily because contract research provides an additional revenue stream. The physicians reported that they saw themselves as trial practitioners and as businesspeople rather than as scientists or researchers. Our findings suggest that in addition to having financial motivation to participate in contract research, these US private-sector physicians have a professional identity aligned with an industry-based approach to research ethics. The generalizability of these findings and whether they have changed in the intervening years should be addressed in future studies. Please see later in the article for the Editors' Summary.

  16. United States private-sector physicians and pharmaceutical contract research: a qualitative study.

    Directory of Open Access Journals (Sweden)

    Jill A Fisher

    Full Text Available There have been dramatic increases over the past 20 years in the number of nonacademic, private-sector physicians who serve as principal investigators on US clinical trials sponsored by the pharmaceutical industry. However, there has been little research on the implications of these investigators' role in clinical investigation. Our objective was to study private-sector clinics involved in US pharmaceutical clinical trials to understand the contract research arrangements supporting drug development, and specifically how private-sector physicians engaged in contract research describe their professional identities.We conducted a qualitative study in 2003-2004 combining observation at 25 private-sector research organizations in the southwestern United States and 63 semi-structured interviews with physicians, research staff, and research participants at those clinics. We used grounded theory to analyze and interpret our data. The 11 private-sector physicians who participated in our study reported becoming principal investigators on industry clinical trials primarily because contract research provides an additional revenue stream. The physicians reported that they saw themselves as trial practitioners and as businesspeople rather than as scientists or researchers.Our findings suggest that in addition to having financial motivation to participate in contract research, these US private-sector physicians have a professional identity aligned with an industry-based approach to research ethics. The generalizability of these findings and whether they have changed in the intervening years should be addressed in future studies. Please see later in the article for the Editors' Summary.

  17. 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.

    Directory of Open Access Journals (Sweden)

    Annie M. Hughes

    2013-06-01

    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

  18. Middle manager involvement in strategy development in not-for profit organizations: the director of nursing perspective--how organizational structure impacts on the role.

    Science.gov (United States)

    Carney, M

    2004-01-01

    An attempt was made to link organizational structure and strategic management and, in the process, to identify how organizational structure impacts on the strategic management role of Directors of Nursing working in acute care hospitals in the Republic of Ireland. Directors of Nursing are recognized as holding a pivotal role in health care delivery. The need for their involvement in strategic management is acknowledged, yet it is not clear if this role is influenced by organizational structure. It is recognized that strategic involvement increases the likelihood that middle managers' initiatives will be in line with top management's concept of corporate strategy. The principal thesis is that organizational members will exercise a higher level of strategic consensus if they have been initially involved in the development of strategy. The study was undertaken in not-for-profit health service organizations, through a series of 25 semi-structured interviews with Directors of Nursing. The review of the literature was undertaken simultaneously with grounded theory analysis of the interviews. This research suggests that structure does impact on the role, conferring both positive benefits and negative consequences. Structure is identified in this study, in terms of organizational hierarchy, and the locus of control pertaining in each organization. Two predominating structure models are discussed and analysed.

  19. Attitudes to and perceptions of research for health science lecturers

    International Nuclear Information System (INIS)

    Williams, Catherine

    2013-01-01

    Introduction: The majority of AHP/nurse lecturers are drawn from clinical practice where the opportunity to undertake research activity is limited. Employment in higher education requires the undertaking of research/scholarly activity as part of their role, but research output from this group is below that from other healthcare academics. This study explores attitudes of AHP's/nurses in one higher educational establishment towards research activity. Method: Ethical approval was obtained from the academic ethics committee. Six focus groups were facilitated using semi structured and open grounded theory approaches. Participants included AHP's/nurses who are now lecturers or teachers in HE. Informed written consent was gained and each session audio recorded and transcribed. NVivo v8 was used to code data and thematic analysis carried out using the OSOP method. Findings: All groups identified previously reported barriers to research, such as lack of time, resources and skills. There was evidence of a perceived hierarchy of research within the university culture, and for some a feeling of inadequacy and inability to reach the higher levels. Those involved in research reported a feeling of isolation which reduced their output. One emergent theme highlighted that some participants did not want to undertake research and had difficulty identifying with it as part of their university role. A minority embraced research as an integral part of their work. Discussion/conclusion: When prompted participants could identify practical solutions to some of the barriers identified such as adapting working practices to release research time. The need for appropriate mentorship for inexperienced researchers is clearly demonstrated in the data however the hierarchy of research presents a barrier to accessing this. The participants are relying upon inexperienced peers for support, leading to a restricted research knowledge pool. The relative immaturity of the professions included may also

  20. Balancing research interests and patient interests: a qualitative study into the intertwinement of care and research in paediatric oncology.

    Science.gov (United States)

    Dekking, Sara A S; van der Graaf, Rieke; Kars, Marijke C; Beishuizen, Auke; de Vries, Martine C; van Delden, Johannes J M

    2015-05-01

    Traditionally, in ethical guidelines and in research ethics literature, care and research are clearly separated based on their different objectives. In contrast, in paediatric oncology, research and care are closely combined. Currently, it is unknown how relevant actors in paediatric oncology perceive this combination of research and care. We conducted a qualitative study into the experiences of those involved in Dutch paediatric oncology with the intertwinement of research and care and the dual role of paediatric oncologists as researchers and treating physicians. A qualitative study approach, using two focus groups and 19 semi-structured, in-depth interviews with paediatric oncologists, research coordinators, parents of children with cancer, and adolescents with cancer. Four themes characterize how actors experience the intertwinement of research and care in paediatric oncology. First, research is considered of major importance, and paediatric oncology professionals convey this message to patients and their parents. Second, there is ambiguity about categorization of studies into cancer therapy as either research or treatment. Third, role conflicts appear within the work of the paediatric oncologists. Finally, the various benefits of combining treatment with research are emphasized. Research is regarded as a fundamental and indispensable characteristic of paediatric oncology practice. Paediatric oncology professionals, parents, and patients have a very positive outlook on combining research and care, but they may not be sufficiently critical with respect to potential conflicts. Increased reflection on how to optimally combine research and care could serve as an important protection of the interests of children with cancer and their parents. © 2015 Wiley Periodicals, Inc.

  1. Experiences of community pharmacists involved in the delivery of a specialist asthma service in Australia.

    Science.gov (United States)

    Emmerton, Lynne M; Smith, Lorraine; LeMay, Kate S; Krass, Ines; Saini, Bandana; Bosnic-Anticevich, Sinthia Z; Reddel, Helen K; Burton, Deborah L; Stewart, Kay; Armour, Carol L

    2012-06-18

    The role of community pharmacists in disease state management has been mooted for some years. Despite a number of trials of disease state management services, there is scant literature into the engagement of, and with, pharmacists in such trials. This paper reports pharmacists' feedback as providers of a Pharmacy Asthma Management Service (PAMS), a trial coordinated across four academic research centres in Australia in 2009. We also propose recommendations for optimal involvement of pharmacists in academic research. Feedback about the pharmacists' experiences was sought via their participation in either a focus group or telephone interview (for those unable to attend their scheduled focus group) at one of three time points. A semi-structured interview guide focused discussion on the pharmacists' training to provide the asthma service, their interactions with health professionals and patients as per the service protocol, and the future for this type of service. Focus groups were facilitated by two researchers, and the individual interviews were shared between three researchers, with data transcribed verbatim and analysed manually. Of 93 pharmacists who provided the PAMS, 25 were involved in a focus group and seven via telephone interview. All pharmacists approached agreed to provide feedback. In general, the pharmacists engaged with both the service and research components, and embraced their roles as innovators in the trial of a new service. Some experienced challenges in the recruitment of patients into the service and the amount of research-related documentation, and collaborative patient-centred relationships with GPs require further attention. Specific service components, such as the spirometry, were well received by the pharmacists and their patients. Professional rewards included satisfaction from their enhanced practice, and pharmacists largely envisaged a future for the service. The PAMS provided pharmacists an opportunity to become involved in an

  2. Experiences of community pharmacists involved in the delivery of a specialist asthma service in Australia

    Directory of Open Access Journals (Sweden)

    Emmerton Lynne M

    2012-06-01

    Full Text Available Abstract Background The role of community pharmacists in disease state management has been mooted for some years. Despite a number of trials of disease state management services, there is scant literature into the engagement of, and with, pharmacists in such trials. This paper reports pharmacists’ feedback as providers of a Pharmacy Asthma Management Service (PAMS, a trial coordinated across four academic research centres in Australia in 2009. We also propose recommendations for optimal involvement of pharmacists in academic research. Methods Feedback about the pharmacists’ experiences was sought via their participation in either a focus group or telephone interview (for those unable to attend their scheduled focus group at one of three time points. A semi-structured interview guide focused discussion on the pharmacists’ training to provide the asthma service, their interactions with health professionals and patients as per the service protocol, and the future for this type of service. Focus groups were facilitated by two researchers, and the individual interviews were shared between three researchers, with data transcribed verbatim and analysed manually. Results Of 93 pharmacists who provided the PAMS, 25 were involved in a focus group and seven via telephone interview. All pharmacists approached agreed to provide feedback. In general, the pharmacists engaged with both the service and research components, and embraced their roles as innovators in the trial of a new service. Some experienced challenges in the recruitment of patients into the service and the amount of research-related documentation, and collaborative patient-centred relationships with GPs require further attention. Specific service components, such as the spirometry, were well received by the pharmacists and their patients. Professional rewards included satisfaction from their enhanced practice, and pharmacists largely envisaged a future for the service. Conclusions The

  3. The Design Social: Framing social research methods for design postgraduates.

    OpenAIRE

    Evans, Martyn

    2010-01-01

    This paper discusses approaches for framing social research methods within postgraduate design curricula, details the responses of postgraduate design students to the possibilities presented by social research methods, and concludes with a case study of the adoption experiences of PhD students in design when engaging with social research methods. Analysis of semi-structured interviews is employed to draw out perceptions and experiences of design postgraduates when engaging with social researc...

  4. [Implementation of telemedicine programs in Spain: experience of the main actors involved in the decision-making process].

    Science.gov (United States)

    Mahtani Chugani, Vinita; Martín Fernández, Roberto Luis; Soto Pedre, Enrique; Yanes López, Virginia; Serrano Aguilar, Pedro

    2009-01-01

    To identify the main benefits and risks related to the implementation of telemedicine programs in Spain, based on the experience of the actors influencing the decision-making process. We performed a qualitative study based on audiotaped semi-structured telephone interviews. Eleven interviews were carried out, and the perspective of four physicians, three administrators, two researchers and two telecommunications industry workers were included. Theoretical sampling was used and thematic inductive analysis was performed. The following factors were identified as necessary to successfully resolve problems by using telemedicine programs: the commitment of the persons involved, technological aspects, economic and institutional support, acceptance by healthcare professionals and patients, the existence of protocols adjusted to the context, the need for information and training prior to the development of telemedicine programs, a forward-looking approach, routine use and full acceptance of telemedicine programs in the organization, and the need to defend equity for professionals and users. Successfully developing a telemedicine program requires a favorable environment in which risk can be foreseen. The main key element seems to be the human factor. The factors identified in this study should be considered when developing strategies to increase the chances of success of telemedicine programs in Spain.

  5. Process evaluation of the health education resource Abre los Ojos for street-involved youth in Medellín

    Directory of Open Access Journals (Sweden)

    John L. Wylie

    2012-02-01

    Full Text Available Objective: Conduct a process evaluation of a health education resource (pamphlet¸ Abre los Ojos, designed for street-involved youth in Medellín. The primary foci of the evaluation were the process of developing the resource and youth’s subsequent perception of the resource. Methodology: Drawing upon both qualitative and quantitative data, a process evaluation was undertaken. Ninety four street-involved youth between the ages of 14–24 years completed surveys about the resource. These semi-structured interviews were key for the information about youth perception of the resource. In addition to individual interviews, prior to resource creation, a series of focus groups were integral for the development of the resource. Results: The process of consulting with the target population through the focus groups was effective in obtaining their ideas and feedback about what type of content they would like to see in a health education resource, and how they wanted that content presented. After distribution, participants described that Abre los Ojos contained information that was valuable and relevant to their experiences. While not a primary focus of this evaluation, the individual interviews were also able to provide some preliminary insight into whether Abre los Ojos was an effective means for participants to increase their knowledge of content included in the resource. Conclusion: The collaborative process of jointly developing the resource content in partnership with the youth proved very worthwhile. While our research team chose to include information about HIV, through focus group dialogue, the youth themselves determined the additional content themes (piercings, use of solvents, and description of life on the street. The resulting resource was well-received by members of the street-involved population who had not been involved in its design.

  6. Developing Teaching Self-Efficacy in Research Institutions: A Study of Award-Winning Professors

    Science.gov (United States)

    Morris, David B.; Usher, Ellen L.

    2011-01-01

    The purpose of this study was to assess the sources of award-wining research professors' (six women; six men) teaching self-efficacy through the framework of Bandura's (1986) social cognitive theory. Semi-structured interviews revealed that mastery experiences and social persuasions were particularly influential sources of self-efficacy and that…

  7. The Value of Emic Research in Sport for Development and Peace Programs

    Science.gov (United States)

    Wahrman, Hillel; Zach, Sima

    2018-01-01

    This paper demonstrates the value of researching the emic perceptions expressed by participants of sport for development and peace (SDP) programs about their program. An Israeli SDP program was chosen which addresses Arab children's educational needs through sport. Ten semi-structured interviews were held with participants: two Jewish male…

  8. Prayer Is a Positive Activity for Children--A Report on Recent Research

    Science.gov (United States)

    Mountain, Vivienne

    2005-01-01

    This article reports on Australian research investigating the meaning and function of prayer for children. Semi-structured interviews were conducted with 60 primary school participants selected from six different schools in Melbourne, reflecting some of the diverse philosophical and religious traditions found in the Australian society. The three…

  9. Participation in environmental health research by placenta donation - a perception study.

    Science.gov (United States)

    Lind, Uffe; Mose, Tina; Knudsen, Lisbeth E

    2007-11-22

    Much environmental health research depends on human volunteers participating with biological samples. The perception study explores why and how people participate in a placenta perfusion study in Copenhagen. The participation implies donation of the placenta after birth and some background information but no follow up. Nineteen semi-structured qualitative interviews were conducted with participants in the placenta perfusion study after donation of placenta. Observation studies were made of recruitment sessions. The interviewed participants are generally in favour of medical research. They participated in the placenta perfusion study due to a belief that societal progress follows medical research. They also felt that participating was a way of giving something back to the Danish health care system. The participants have trust in medical science and scientists, but trust is something which needs to be created through "trust-work". Face-to-face interaction, written information material and informed consent forms play important parts in creating trusting relationships in medical research. Medical research ethics do not only amount to specific types of written information material but should also be seen as a number of trust making performances involving researchers as well as research participants.

  10. [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].

    Science.gov (United States)

    Fujiwara, Yoshinori; Nishi, Mariko; Watanabe, Naoki; Lee, Sangyoon; Inoue, Kazuko; Yoshida, Hiroto; Sakuma, Naoko; Kureta, Youichi; Ishii, Kenji; Uchida, Hayato; Kakuno, Fumihiko; Shinkai, Shoji

    2006-09-01

    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

  11. Involving women.

    Science.gov (United States)

    Agbo, J

    1994-01-01

    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

  12. The Involved Ostrich

    DEFF Research Database (Denmark)

    Davies, Andrea; Dobscha, Susan; Geiger, Susi

    2008-01-01

    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...

  13. Research

    African Journals Online (AJOL)

    ebutamanya

    2015-03-02

    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 ...

  14. IDEA and Family Involvement

    Directory of Open Access Journals (Sweden)

    Mehmet Emin Öztürk

    2017-01-01

    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.

  15. Original Research Original Research

    African Journals Online (AJOL)

    RAGHAVENDRA

    The aim of this study was to identify major feed res composition and ... identification. A semi-structured questionnaire available feed resources. Collected data were analyz indices, one-way ANOVA and Pearson correlation coe software. The first ..... reported by Zewdie (2010) in the Highlands and central rift valley of Ethiopia ...

  16. Research

    African Journals Online (AJOL)

    2012-09-07

    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.

  17. Research

    African Journals Online (AJOL)

    abp

    2016-07-14

    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.

  18. Research

    African Journals Online (AJOL)

    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.

  19. Research

    African Journals Online (AJOL)

    research process, as part of which students must find and appraise evidence from research.[5] 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.

  20. 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

    International Nuclear Information System (INIS)

    Brooks, F.; Curtis, E.C.; Forrester, G.; Roth, V.; Spickard, J.; Webster, B.; Engle, J.; Perkins, L.; Powell, S.

    1994-01-01

    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?

  1. Community-based health and schools of nursing: supporting health promotion and research.

    Science.gov (United States)

    Shannon, Crystal

    2014-01-01

    This article examines the role of community-based schools of nursing in the promotion of public health and research in poverty-stricken areas. This was a three-phase study (questionnaire and key-informants' interviews) that surveyed representatives of prelicensure associate and baccalaureate nursing schools (n=17), nursing-school key informants (n=6) and community leaders (n=10). A 13-question web-based survey and semi-structured interview of key informants elicited data on demographics, nursing program design, exposure of faculty and students to various research and health promotion methods, and beliefs about student involvement. Nursing schools participated minimally in community-based health promotion (CBHP) and community-based participatory research saw reduced need for student involvement in such activities, cited multiple barriers to active community collaboration, and reported restricted community partnerships. CBHP was recognized to be a valuable element of health care and student education, but is obstructed by many barriers. This study suggests that nursing schools are not taking full advantage of relationships with community leaders. Recommendations for action are given. © 2013 Wiley Periodicals, Inc.

  2. Involving Children in the Design and Development of Research Instruments and Data Collection Procedures: A Case Study in Primary Schools in Northern Ireland

    Science.gov (United States)

    Turtle, Kellie; McElearney, Aisling; Scott, Joanne

    2010-01-01

    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…

  3. Investigating the Role of Context in Experimental Research Involving the Use of Digital Media for the Learning of Mathematics: Boundary Objects as Vehicles for Integration

    Science.gov (United States)

    Kynigos, Chronis; Psycharis, Giorgos

    2009-01-01

    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…

  4. Homeless people's access to primary care physiotherapy services: an exploratory, mixed-method investigation using a follow-up qualitative extension to core quantitative research.

    Science.gov (United States)

    Dawes, Jo; Deaton, Stuart; Greenwood, Nan

    2017-06-30

    The purpose of this study was to appraise referrals of homeless patients to physiotherapy services and explore perceptions of barriers to access. This exploratory mixed-method study used a follow-up qualitative extension to core quantitative research design. Over 9 months, quantitative data were gathered from the healthcare records of homeless patients referred to physiotherapy by a general practitioner (GP) practice, including the number of referrals and demographic data of all homeless patients referred. Corresponding physiotherapy records of those people referred to physiotherapy were searched for the outcome of their care. Qualitative semi-structured telephone interviews, based on the quantitative findings, were carried out with staff involved with patient care from the referring GP practice and were used to expand insight into the quantitative findings. Two primary care sites provided data for this study: a GP practice dedicated exclusively to homeless people and the physiotherapy department receiving their referrals. Quantitative data from the healthcare records of 34 homeless patient referrals to physiotherapy were collected and analysed. In addition, five staff involved in patient care were interviewed. 34 referrals of homeless people were made to physiotherapy in a 9-month period. It was possible to match 25 of these to records from the physiotherapy department. Nine (36%) patients did not attend their first appointment; seven (28%) attended an initial appointment, but did not attend a subsequent appointment and were discharged from the service; five (20%) completed treatment and four patients (16%) had ongoing treatment. Semi-structured interviews revealed potential barriers preventing homeless people from accessing physiotherapy services, the complex factors being faced by those making referrals and possible ways to improve physiotherapy access. Homeless people with musculoskeletal problems may fail to access physiotherapy treatment, but opportunities

  5. The complexities of 'otherness': reflections on embodiment of a young White British woman engaged in cross-generation research involving older people in Indonesia.

    Science.gov (United States)

    Norris, Meriel

    2015-05-01

    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.

  6. Lymph node involvement in gastric cancer for different tumor sites and T stage: Italian Research Group for Gastric Cancer (IRGGC) experience.

    Science.gov (United States)

    Di Leo, Alberto; Marrelli, Daniele; Roviello, Franco; Bernini, Marco; Minicozzi, AnnaMaria; Giacopuzzi, Simone; Pedrazzani, Corrado; Baiocchi, Luca Gian; de Manzoni, Giovanni

    2007-09-01

    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.

  7. Clinical governance and research ethics as barriers to UK low-risk population-based health research?

    Directory of Open Access Journals (Sweden)

    Douglas Flora

    2008-11-01

    Full Text Available Abstract Background Since the Helsinki Declaration was introduced in 1964 as a code of practice for clinical research, it has generally been agreed that research governance is also needed in the field of public health and health promotion research. Recently, a range of factors led to the development of more stringent bureaucratic procedures, governing the conduct of low-risk population-based health research in the United Kingdom. Methods Our paper highlights a case study of the application process to medical research ethics committees in the United Kingdom for a study of the promotion of physical activity by health care providers. The case study presented here is an illustration of the challenges in conducting low-risk population-based health research. Results Our mixed-methods approach involved a questionnaire survey of and semi-structured interviews with health professionals (who were all healthy volunteers. Since our study does not involve the participation of either patients or the general population, one would expect the application to the relevant research ethics committees to be a formality. This proved not to be the case! Conclusion Research ethics committees could be counter-productive, rather than protecting the vulnerable in the research process, they can stifle low-risk population-based health research. Research ethics in health services research is first and foremost the responsibility of the researcher(s, and we need to learn to trust health service researchers again. The burden of current research governance regulation to address the perceived ethical problems is neither appropriate nor adequate. Senior researchers/academics need to educate and train students and junior researchers in the area of research ethics, whilst at the same time reducing pressures on them that lead to unethical research, such as commercial funding, inappropriate government interference and the pressure to publish. We propose that non-invasive low

  8. Research

    African Journals Online (AJOL)

    abp

    2015-06-24

    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 ...

  9. Research

    African Journals Online (AJOL)

    for occupational therapy education programmes to become more responsive to the local context, and to facilitate graduate attributes such as resilience[3] and ... facilitate students' ability to examine institutional systems that hinder .... Only two participants were involved ... in their practice settings and that other health.

  10. Research

    African Journals Online (AJOL)

    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 ...

  11. Research

    African Journals Online (AJOL)

    abp

    2013-03-05

    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 ...

  12. Research

    African Journals Online (AJOL)

    2016-05-20

    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 ...

  13. Research.

    Science.gov (United States)

    West, Philip T., Ed.

    1985-01-01

    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)

  14. Research

    African Journals Online (AJOL)

    abp

    2017-11-15

    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).

  15. Research

    African Journals Online (AJOL)

    abp

    2017-01-30

    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.

  16. Research

    African Journals Online (AJOL)

    abp

    2017-11-30

    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 ...

  17. Research

    African Journals Online (AJOL)

    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 ...

  18. Research

    African Journals Online (AJOL)

    abp

    2012-10-21

    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.

  19. Research

    African Journals Online (AJOL)

    raoul

    2012-02-16

    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-.

  20. Differences in Chemical Engineering Student-Faculty Interactions by Student Age and Experience at a Large, Public, Research University

    Science.gov (United States)

    Ciston, Shannon; Sehgal, Sanya; Mikel, Tressa; Carnasciali, Maria-Isabel

    2018-01-01

    Adult undergraduate students aged 25+ in engineering disciplines are an important demographic bringing a wealth of life experience to the classroom. This study uses qualitative data drawn from semi-structured interviews with two groups of undergraduate chemical engineering students at a large, public research university: adult students with…

  1. Public-Private Policy Change and Its Influence on the Linkage of Agricultural Research, Extension and Farmers in Iran

    Science.gov (United States)

    Karamidehkordi, Esmail

    2013-01-01

    Purpose: This article aims to show the linkage of Iranian agricultural research centres with extension and farmers, using three case studies in 1999, 2005 and 2010. Design/methodology/approach: The data were collected through document analyses, structured and semi-structured interviews and observations. Findings: The 1999 and 2005 cases were…

  2. Attitudes, understanding, and concerns regarding medical research amongst Egyptians: A qualitative pilot study

    Directory of Open Access Journals (Sweden)

    Raafat May

    2007-08-01

    Full Text Available Abstract Background Medical research must involve the participation of human subjects. Knowledge of patients' perspectives and concerns with their involvement in research would enhance recruitment efforts, improve the informed consent process, and enhance the overall trust between patients and investigators. Several studies have examined the views of patients from Western countries. There is limited empirical research involving the perspectives of individuals from developing countries. The purpose of this study is to examine the attitudes of Egyptian individuals toward medical research. Such information would help clarify the type and extent of concerns regarding research participation of individuals from cultural, economic, and political backgrounds that differ from those in developed countries. Methods We conducted semi-structured interviews with 15 Egyptian individuals recruited from the outpatient settings (public and private at Ain Shams University in Cairo, Egypt. Interviews were taped, transcribed, and translated. Thematic analysis followed. Results All individuals valued the importance of medical research; however most would not participate in research that involved more than minimal risk. Individuals were comfortable with studies involving surveys and blood sampling, but many viewed drug trials as being too risky. All participants valued the concept of informed consent, as they thought that their permission to be in a research study was paramount. Many participants had discomfort with or difficulty in the understanding several research concepts: randomization, double-blind, and clinical equipoise. Trust in the physicians performing research was important in deciding to participate in clinical research. The small sample size and the selection bias associated with obtaining information from only those who agreed to participate in a research study represent limitations in this study. Conclusion Overall, individuals in our sample recognize

  3. Adapting qualitative research strategies to technology savvy adolescents.

    Science.gov (United States)

    Mason, Deanna Marie; Ide, Bette

    2014-05-01

    To adapt research strategies involving adolescents in a grounded theory qualitative research study by conducting email rather than face-to-face interviews. Adolescent culture relies heavily on text-based communication and teens prefer interactions mediated through technology. Traditional qualitative research strategies need to be rethought when working with adolescents. Adapting interviewing strategies to electronic environments is timely and relevant for researching adolescents. Twenty three adolescents (aged 16-21) were interviewed by email. A letter of invitation was distributed. Potential participants emailed the researcher to convey interest in participating. If the inclusion criteria were met, email interviews were initiated. Participants controlled the interviews through their rate of response to interview questions. A grounded theory methodology was employed. Initial contact with participants reiterated confidentiality and the ability to withdraw from the study at any time. Interviews began with the collection of demographic information and a broad opening based on a semi-structured interview guide. All data were permissible, including text, photos, music, videos or outside media, for example YouTube. The participant was allowed to give direction to the interview after initial questions were posed. Email interviews continued until saturation was reached in the data. Participants were enthusiastic about email interviewing. Attrition did not occur. Email interviewing gave participants more control over the research, decreased power differentials between the adolescent and researcher, allowed the study to be adapted to cultural, linguistic and developmental needs, and maintained confidentiality. As participants said that email communication was slow and they preferred instant messaging, replication in faster-paced media is recommended. Repetition in face-to-face settings is warranted to evaluate how technology may have influenced the findings. Implications for

  4. Research

    African Journals Online (AJOL)

    2014-05-06

    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 ...

  5. Research

    African Journals Online (AJOL)

    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.) ...

  6. Research

    African Journals Online (AJOL)

    abp

    2017-01-24

    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 ...

  7. A comparative analysis of biomedical research ethics regulation systems in Europe and Latin America with regard to the protection of human subjects.

    Science.gov (United States)

    Lamas, Eugenia; Ferrer, Marcela; Molina, Alberto; Salinas, Rodrigo; Hevia, Adriana; Bota, Alexandre; Feinholz, Dafna; Fuchs, Michael; Schramm, Roland; Tealdi, Juan-Carlos; Zorrilla, Sergio

    2010-12-01

    The European project European and Latin American Systems of Ethics Regulation of Biomedical Research Project (EULABOR) has carried out the first comparative analysis of ethics regulation systems for biomedical research in seven countries in Europe and Latin America, evaluating their roles in the protection of human subjects. We developed a conceptual and methodological framework defining 'ethics regulation system for biomedical research' as a set of actors, institutions, codes and laws involved in overseeing the ethics of biomedical research on humans. This framework allowed us to develop comprehensive national reports by conducting semi-structured interviews to key informants. These reports were summarised and analysed in a comparative analysis. The study showed that the regulatory framework for clinical research in these countries differ in scope. It showed that despite the different political contexts, actors involved and motivations for creating the regulation, in most of the studied countries it was the government who took the lead in setting up the system. The study also showed that Europe and Latin America are similar regarding national bodies and research ethics committees, but the Brazilian system has strong and noteworthy specificities.

  8. A Qualitative Study into Dependent Relationships and Voluntary Informed Consent for Research in Pediatric Oncology.

    Science.gov (United States)

    Dekking, Sara A S; van der Graaf, Rieke; Schouten-van Meeteren, Antoinette Y N; Kars, Marijke C; van Delden, Johannes J M

    2016-04-01

    In pediatric oncology, many oncologists invite their own patients to participate in research. Inclusion within a dependent relationship is considered to potentially compromise voluntariness of consent. Currently, it is unknown to what extent those involved in pediatric oncology experience the dependent relationship as a threat to voluntary informed consent, and what they see as safeguards to protect voluntary informed consent within a dependent relationship. We performed a qualitative study among key actors in pediatric oncology to explore their experiences with the dependent relationship and voluntary informed consent. We conducted three focus groups and 25 semi-structured, in-depth interviews with pediatric oncologists, research coordinators, Research Ethics Committee members, parents of children with cancer, and adolescents with cancer. Professionals regarded the dependent relationship both as a potential threat to and as a positive influence on voluntary decision making. Parents and adolescents did not feel as though dependency upon the oncologist influenced their decisions. They valued the involvement of their own physician in the informed consent process. The professionals suggested three strategies to protect voluntariness: emphasizing voluntariness; empowering families; involvement of an independent person. Although the dependent relationship between pediatric oncologists, patients and parents may be problematic for voluntary informed consent, this is not necessarily the case. Moreover, the involvement of treating physicians may even have a positive impact on the informed consent process. Although we studied pediatric oncology, our results may also apply to many other fields of pediatric medicine where research and care are combined, for example, pediatric rheumatology, neurology and nephrology. Clinical trials in these fields are inevitably often designed, initiated and conducted by medical specialists closely involved in patient care.

  9. Utilization of the biomass in Japan: state of the researches and involvement of the enterprises; Utilisation de la biomasse au Japon: etat des recherches et implication des entreprises

    Energy Technology Data Exchange (ETDEWEB)

    Gabet, A.

    2003-09-01

    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.)

  10. Implementing 'translational' biomedical research: convergence and divergence among clinical and basic scientists.

    Science.gov (United States)

    Morgan, Myfanwy; Barry, Christine A; Donovan, Jenny L; Sandall, Jane; Wolfe, Charles D A; Boaz, Annette

    2011-10-01

    Universities are increasingly regarded as key actors in the new 'knowledge economy', with requirements to produce market-oriented knowledge and engage in commercialization. This is of particular significance in the biomedical field, reflecting the perceived gap between success in terms of scientific discoveries and its transformation into products. The dominant discourse attributes this situation to 'blocks' in the translational pathway from 'bench to bedside', leading to policies to 'reengineer' the research enterprise. This study examines a pilot initiative established by the UK's Medical Research Council (MRC). This involved employing a change agent (Research Translator) supported by a small amount of translational funding to promote the culture and practice of translational research at a university/hospital site in England. An ethnographically informed case study involving semi-structured and open exploratory interviews, observation and document review, was conducted in 2008. Analysis and interpretation were informed by Bourdieu's logic of practice applied to science. The requirements of translational research promoted by the Research Translator and its sources of capital (authority, prestige etc) were largely congruent with the 'field' of clinical science. In contrast, translational research diverged from perceptions of 'legitimate' science and requirements for capital accumulation held by the majority of basic scientists who often described this research as 'high risk' and were resistant to the Research Translator's advice. However some differences in motivations and practices were identified within groups of scientists associated with career stage, work environment and specialty. We argue that there are convergent and divergent forces that influence scientists' readiness to adopt a market-oriented translational research model and in turn facilitate or constrain the effectiveness of a knowledge broker. We also identify ways in which current structures and

  11. "My Brother Likes Meeting New People, but Don't Ask Him Any Direct Questions": Involving Adults with Autism plus Learning Disability in a Qualitative Research Project

    Science.gov (United States)

    Tozer, Rosemary; Atkin, Karl; Wenham, Aniela

    2014-01-01

    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…

  12. Implementing a Parental Involvement Program to Improve Parents' Engagement in Their Children's Learning: An Action Research Study

    Science.gov (United States)

    Youssef, Saoussen S.

    2017-01-01

    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…

  13. Breaking ground in cross-cultural research on the fear of being laughted at (gelotophobia): A multi-national study involving 73 countries

    Czech Academy of Sciences Publication Activity Database

    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.

    2009-01-01

    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

  14. Involving stakeholders in policy research should not imply that they control the problem definition: lessons from a case study on new analgesics

    NARCIS (Netherlands)

    Moret-Hartman, M.; van der Wilt, G.J.; Grin, J.

    2009-01-01

    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

  15. High participation rate among 25 721 patients with broad age range in a hospital-based research project involving whole-genome sequencing - the Lausanne Institutional Biobank.

    Science.gov (United States)

    Bochud, Murielle; Currat, Christine; Chapatte, Laurence; Roth, Cindy; Mooser, Vincent

    2017-10-24

    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.

  16. Research

    African Journals Online (AJOL)

    abp

    2017-10-25

    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 [16] that breast self-examination may cause.

  17. Research

    African Journals Online (AJOL)

    ebutamanya

    2015-10-02

    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,.

  18. Research

    African Journals Online (AJOL)

    abp

    2016-07-12

    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.

  19. Research

    African Journals Online (AJOL)

    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.

  20. Research

    African Journals Online (AJOL)

    abp

    2016-04-14

    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 [33] ...

  1. Research

    International Nuclear Information System (INIS)

    1999-01-01

    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

  2. Research

    African Journals Online (AJOL)

    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.

  3. Characteristics of urban parks associated with park use and physical activity: a review of qualitative research.

    Science.gov (United States)

    McCormack, Gavin R; Rock, Melanie; Toohey, Ann M; Hignell, Danica

    2010-07-01

    Given that recent literature reviews on physical activity in urban parks deliberately excluded qualitative findings, we reviewed qualitative research on this topic informed by a published classification scheme based on quantitative research. Twenty-one studies met our inclusion criteria. These studies relied mainly on semi-structured interviews with individuals or in focus groups; only five studies involved in situ observation. Our synthesis aligns with previous quantitative research showing that attributes including safety, aesthetics, amenities, maintenance, and proximity are important for encouraging park use. Furthermore, our synthesis of qualitative research suggests that perceptions of the social environment entwine inextricably with perceptions of the physical environment. If so, physical attributes of parks as well as perceptions of these attributes (formed in relation to broader social contexts) may influence physical activity patterns. Both qualitative and quantitative methods provide useful information for interpreting such patterns, and in particular, when designing and assessing interventions intended to improve the amount and intensity of physical activity. 2010 Elsevier Ltd. All rights reserved.

  4. Medical School Librarians Need More Training to Support their Involvement in Evidence Based Medicine Curricula

    Directory of Open Access Journals (Sweden)

    Aislinn Conway

    2016-04-01

    Full Text Available Objective – To describe the self-perceived role of librarians in developing evidence based medicine (EBM curricula and identify their current and desired level of training to support these activities. Design – Multi-institutional qualitative study. Setting – Nine medical schools in Canada and the United States of America. Subjects – Nine librarians identified by medical school faculty as central to the provision of EBM training for medical students at their institution. Methods – The researchers designed a semi-structured interview schedule based on a review of the literature and their own experiences as librarians teaching EBM. The topics covered were; librarians’ perceptions of their roles in relation to the curriculum, the training required to enable them to undertake these roles, and their professional development needs. The interviews were conducted by telephone and then audio-recorded and transcribed verbatim. The authors present five main themes; curricular design, curricular deployment, curricular assessment, educational training, and professional development. Profiles were developed for each participant based on the latter two themes and from this information common characteristics were identified. Main Results – The participants described the importance of collaboration with faculty and student bodies when designing a curriculum. Information literacy instruction and specifically literature searching and forming a research question were taught by all of the participants to facilitate curricular deployment. Some of the librarians were involved or partly involved in curricular assessment activities such as formulating exam questions or providing feedback on assignments. Educational training of participants varied from informal observation to formal workshops offered by higher education institutions. All librarians indicated a willingness to partake in professional development focused on teaching and EBM. The subjects

  5. Important considerations for feasibility studies in physical activity research involving persons with multiple sclerosis: a scoping systematic review and case study.

    Science.gov (United States)

    Learmonth, Yvonne C; Motl, Robert W

    2018-01-01

    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

  6. Perceptions of academic administrators of the effect of involvement in doctoral programs on faculty members' research and work-life balance.

    Science.gov (United States)

    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.

  7. Research data management and libraries: relationships, activities, drivers and influences.

    Directory of Open Access Journals (Sweden)

    Stephen Pinfield

    Full Text Available The management of research data is now a major challenge for research organisations. Vast quantities of born-digital data are being produced in a wide variety of forms at a rapid rate in universities. This paper analyses the contribution of academic libraries to research data management (RDM in the wider institutional context. In particular it: examines the roles and relationships involved in RDM, identifies the main components of an RDM programme, evaluates the major drivers for RDM activities, and analyses the key factors influencing the shape of RDM developments. The study is written from the perspective of library professionals, analysing data from 26 semi-structured interviews of library staff from different UK institutions. This is an early qualitative contribution to the topic complementing existing quantitative and case study approaches. Results show that although libraries are playing a significant role in RDM, there is uncertainty and variation in the relationship with other stakeholders such as IT services and research support offices. Current emphases in RDM programmes are on developments of policies and guidelines, with some early work on technology infrastructures and support services. Drivers for developments include storage, security, quality, compliance, preservation, and sharing with libraries associated most closely with the last three. The paper also highlights a 'jurisdictional' driver in which libraries are claiming a role in this space. A wide range of factors, including governance, resourcing and skills, are identified as influencing ongoing developments. From the analysis, a model is constructed designed to capture the main aspects of an institutional RDM programme. This model helps to clarify the different issues involved in RDM, identifying layers of activity, multiple stakeholders and drivers, and a large number of factors influencing the implementation of any initiative. Institutions may usefully benchmark their

  8. Research data management and libraries: relationships, activities, drivers and influences.

    Science.gov (United States)

    Pinfield, Stephen; Cox, Andrew M; Smith, Jen

    2014-01-01

    The management of research data is now a major challenge for research organisations. Vast quantities of born-digital data are being produced in a wide variety of forms at a rapid rate in universities. This paper analyses the contribution of academic libraries to research data management (RDM) in the wider institutional context. In particular it: examines the roles and relationships involved in RDM, identifies the main components of an RDM programme, evaluates the major drivers for RDM activities, and analyses the key factors influencing the shape of RDM developments. The study is written from the perspective of library professionals, analysing data from 26 semi-structured interviews of library staff from different UK institutions. This is an early qualitative contribution to the topic complementing existing quantitative and case study approaches. Results show that although libraries are playing a significant role in RDM, there is uncertainty and variation in the relationship with other stakeholders such as IT services and research support offices. Current emphases in RDM programmes are on developments of policies and guidelines, with some early work on technology infrastructures and support services. Drivers for developments include storage, security, quality, compliance, preservation, and sharing with libraries associated most closely with the last three. The paper also highlights a 'jurisdictional' driver in which libraries are claiming a role in this space. A wide range of factors, including governance, resourcing and skills, are identified as influencing ongoing developments. From the analysis, a model is constructed designed to capture the main aspects of an institutional RDM programme. This model helps to clarify the different issues involved in RDM, identifying layers of activity, multiple stakeholders and drivers, and a large number of factors influencing the implementation of any initiative. Institutions may usefully benchmark their activities against the

  9. Still "at risk": An examination of how street-involved young people understand, experience, and engage with "harm reduction" in Vancouver's inner city.

    Science.gov (United States)

    Bozinoff, Nikki; Small, Will; Long, Cathy; DeBeck, Kora; Fast, Danya

    2017-07-01

    Vancouver is an international leader in implementing interventions to reduce harms related to drug use. However, street-involved young people who use drugs continue to be vulnerable to overdose death, hepatitis C (HCV) infection, and high rates of syringe sharing. To better understand this in the context of the intensive public health response, we examined how young people, who are involved in the 'street drug scene', understood, experienced and engaged with harm reduction. Twelve semi-structured interviews were conducted in 2013 with 13 young people (ages 17-28) recruited from the At-Risk Youth Study, a prospective cohort of street-involved and drug-using young people. These interviews were embedded within a larger, eight-year program of ethnographic research and explored participants' understandings of harm reduction, their use of specific services, and their ideas about improving their day-to-day lives. Interviews were transcribed verbatim and a thematic analysis was performed. Young peoples' ideas about harm reduction were diverse and expansive. They articulated the limitations of existing programs, indicating that while they are positioned to reduce the risk of HIV and HCV transmission, they offer little meaningful support to improve young peoples' broader life chances. Young people described strategies to mitigate risk and harm in their own lives, including transitioning to drugs deemed less harmful and attempting to gain access to drug treatment. Finally, young people indicated that spatial considerations (e.g., distance from Vancouver's Downtown Eastside) strongly determined access to services. In Vancouver, a large, well established harm reduction infrastructure seeks to reduce HIV and HCV transmission among street-involved young people. However, young peoples' multiple understandings, experiences and engagements with harm reduction in this setting illustrate the limitations of the existing infrastructure in improving their broader life chances. Copyright

  10. Broadening measures of success: results of a behavioral health translational research training program.

    Science.gov (United States)

    Baldwin, Julie A; Williamson, Heather J; Eaves, Emery R; Levin, Bruce L; Burton, Donna L; Massey, Oliver T

    2017-07-24

    While some research training programs have considered the importance of mentoring in inspiring professionals to engage in translational research, most evaluations emphasize outcomes specific to academic productivity as primary measures of training program success. The impact of such training or mentoring programs on stakeholders and local community organizations engaged in translational research efforts has received little attention. The purpose of this evaluation is to explore outcomes other than traditional academic productivity in a translational research graduate certificate program designed to pair graduate students and behavioral health professionals in collaborative service-learning projects. Semi-structured qualitative interviews with scholars, community mentors, and academic mentors were conducted regarding a translational research program to identify programmatic impacts. Interviews were transcribed and coded by the research team to identify salient themes related to programmatic outcomes. Results are framed using the Translational Research Impact Scale which is organized into three overarching domains of potential impact: (1) research-related impacts, (2) translational impacts, and (3) societal impacts. This evaluation demonstrates the program's impact in all three domains of the TRIS evaluation framework. Graduate certificate participants (scholars) reported that gaining experience in applied behavioral health settings added useful skills and expertise to their present careers and increased their interest in pursuing translational research. Scholars also described benefits resulting from networks gained through participation in the program, including valuable ties between the university and community behavioral health organizations. This evaluation of the outcomes of a graduate certificate program providing training in translational research highlights the need for more community-oriented and practice-based measures of success. Encouraging practitioner

  11. Research

    African Journals Online (AJOL)

    abp

    2017-05-18

    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 ...

  12. Research

    African Journals Online (AJOL)

    abp

    15 févr. 2016 ... présentent un Indice de Masse Corporel (IMC) normal, les autres femmes sont soit ..... In The health belief model and personal health behavior, edited by MH ... Evaluation of the Osteoporosis Health Belief Scale. Research in.

  13. Research

    African Journals Online (AJOL)

    2017-03-14

    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.[5]. Methods .... service they want, not the service we want to give whether they want it or. Co math. G.

  14. Research

    African Journals Online (AJOL)

    abp

    2017-11-24

    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.

  15. Research

    African Journals Online (AJOL)

    abp

    2014-04-21

    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.

  16. Research

    African Journals Online (AJOL)

    abp

    2016-02-01

    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.

  17. Research

    African Journals Online (AJOL)

    abp

    2015-06-24

    Jun 24, 2015 ... related immunosuppression, previous history of TB, and pause in treatment [6]. 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 ...

  18. Research

    African Journals Online (AJOL)

    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 ...

  19. Research

    African Journals Online (AJOL)

    ebutamanya

    2015-06-22

    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, ...

  20. Research

    African Journals Online (AJOL)

    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 ...

  1. Research

    African Journals Online (AJOL)

    abp

    2014-01-31

    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 [11]. Furthermore, the quality of the services in the private health facilities could also be a major ...

  2. Research

    African Journals Online (AJOL)

    2018-03-20

    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 ...

  3. Research

    African Journals Online (AJOL)

    abp

    2017-09-14

    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):.

  4. Research

    African Journals Online (AJOL)

    abp

    2015-01-19

    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.

  5. An assessment of time involved in pre-test case review and counseling for a whole genome sequencing clinical research program.

    Science.gov (United States)

    Williams, Janet L; Faucett, W Andrew; Smith-Packard, Bethanny; Wagner, Monisa; Williams, Marc S

    2014-08-01

    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.

  6. Investigating the use of patient involvement and patient experience in quality improvement in Norway

    DEFF Research Database (Denmark)

    Wiig, Siri; Storm, Marianne; Aase, Karina

    2013-01-01

    -fold: 1) to describe and analyze how governmental organizations expect acute hospitals to incorporate patient involvement and patient experiences into their quality improvement (QI) efforts and 2) to analyze how patient involvement and patient experiences are used by hospitals to try to improve...... the quality of care they provide. METHODS: This multi-level case study combines analysis of national policy documents and regulations at the macro level with semi-structured interviews and non-participant observation of key meetings and shadowing of staff at the meso and micro levels in two purposively...... in hospitals. The expectations span from systematic collection of patients' and family members' experiences for the purpose of improving service quality through establishing patient-oriented arenas for ongoing collaboration with staff to the support of individual involvement in decision making. However...

  7. S2P: A software tool to quickly carry out reproducible biomedical research projects involving 2D-gel and MALDI-TOF MS protein data.

    Science.gov (United States)

    López-Fernández, Hugo; Araújo, José E; Jorge, Susana; Glez-Peña, Daniel; Reboiro-Jato, Miguel; Santos, Hugo M; Fdez-Riverola, Florentino; Capelo, José L

    2018-03-01

    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.

  8. Research nurses in New Zealand intensive care units: A qualitative descriptive study.

    Science.gov (United States)

    Mackle, Diane; Nelson, Katherine

    2018-04-20

    This study explored the role of the research nurse in New Zealand (NZ) Level III intensive care units (ICU). Little was known about this role in NZ prior to this study. To describe the role and responsibilities of NZ ICU research nurses. A qualitative, descriptive approach, using semi structured interviews was used. The study was conducted in six Level III ICUs throughout NZ that employed a research nurse. Interviews were conducted with research nurses (n = 11), principal investigators (n = 6) and nurse managers (n = 6), and the findings were triangulated. The views across all ICUs and stakeholders were generally similar, with differences only being in some operational areas. This study found that the primary role of the research nurse was trial management, where they coordinated all elements of trial conduct. Almost half of the research nurses were involved in trial design through their positions on management committees. Research nurses also played a vital role in patient and trial advocacy, and they bridged the knowledge gap by bringing research to staff nurses, patients and their families. The majority of research nurses reported to a nursing line manager, and had an informal accountability to the PI. The role of NZ ICU research nurses is similar to their international counterparts. This study provides clarity about the research nurse role and showcases their key contribution in ensuring that NZ ICUs undertake high quality research, thus contributing to potential improvements for future patients' outcomes. Copyright © 2018 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.

  9. 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

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    2000-03-01

    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)

  10. The TOMO-ETNA experiment: an imaging active campaign at Mt. Etna volcano. Context, main objectives, working-plans and involved research projects

    Directory of Open Access Journals (Sweden)

    Jesús M. Ibáñez

    2016-09-01

    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.

  11. Language translation challenges with Arabic speakers participating in qualitative research studies.

    Science.gov (United States)

    Al-Amer, Rasmieh; Ramjan, Lucie; Glew, Paul; Darwish, Maram; Salamonson, Yenna

    2016-02-01

    This paper discusses how a research team negotiated the challenges of language differences in a qualitative study that involved two languages. The lead researcher shared the participants' language and culture, and the interviews were conducted using the Arabic language as a source language, which was then translated and disseminated in the English language (target language). The challenges in relation to translation in cross-cultural research were highlighted from a perspective of establishing meaning as a vital issue in qualitative research. The paper draws on insights gained from a study undertaken among Arabic-speaking participants involving the use of in-depth semi-structured interviews. The study was undertaken using a purposive sample of 15 participants with Type 2 Diabetes Mellitus and co-existing depression and explored their perception of self-care management behaviours. Data analysis was performed in two phases. The first phase entailed translation and transcription of the data, and the second phase entailed thematic analysis of the data to develop categories and themes. In this paper there is discussion on the translation process and its inherent challenges. As translation is an interpretive process and not merely a direct message transfer from a source language to a target language, translators need to systematically and accurately capture the full meaning of the spoken language. This discussion paper highlights difficulties in the translation process, specifically in managing data in relation to metaphors, medical terminology and connotation of the text, and importantly, preserving the meaning between the original and translated data. Recommendations for future qualitative studies involving interviews with non-English speaking participants are outlined, which may assist researchers maintain the integrity of the data throughout the translation process. Copyright © 2015 Elsevier Ltd. All rights reserved.

  12. Opportunities for involving men and families in chronic disease management: a qualitative study from Chiapas, Mexico.

    Science.gov (United States)

    Fort, Meredith P; Castro, Maricruz; Peña, Liz; López Hernández, Sergio Hernán; Arreola Camacho, Gabriel; Ramírez-Zea, Manuel; Martínez, Homero

    2015-10-05

    A healthy lifestyle intervention was implemented in primary care health centers in urban parts of Tuxtla Gutiérrez, Chiapas, Mexico with an aim of reducing cardiovascular disease risk for patients with type 2 diabetes and/or hypertension. During implementation, research questions emerged. Considerably fewer men participated in the intervention than women, and an opportunity was identified to increase the reach of activities aimed at improving disease self-management through strategies involving family members. A qualitative study was conducted to identify strategies to involve men and engage family members in disease management and risk reduction. Nine men with hypertension and/or type 2 diabetes with limited to no participation in disease self-management and health promotion activities, six families in which at least one family member had a diagnosis of one or both conditions, and nine health care providers from four different government health centers were recruited for the study. Participants took part in semi-structured interviews. During interviews with families, genograms and eco-maps were used to diagram family composition and structure, and capture the nature of patients' relationships to the extended family and community resources. Transcripts were coded and a general inductive analytic approach was used to identify themes related to men's limited participation in health promotion activities, family support and barriers to disease management, and health care providers' recommendations. Participants reported barriers to men's participation in chronic disease management and healthy lifestyle education activities that can be grouped into two categories: internal and external factors. Internal factors are those for which they are able to make the decision on their own and external factors are those that are not related solely to their decision to take part or not. Four primary aspects were identified related to families' relationships with disease: different

  13. Are Sexual and Reproductive Health Policies Designed for All? Vulnerable Groups in Policy Documents of Four European Countries and Their Involvement in Policy Development.

    Science.gov (United States)

    Ivanova, Olena; Dræbel, Tania; Tellier, Siri

    2015-08-12

    Health policies are important instruments for improving population health. However, experience suggests that policies designed for the whole population do not always benefit the most vulnerable. Participation of vulnerable groups in the policy-making process provides an opportunity for them to influence decisions related to their health, and also to exercise their rights. This paper presents the findings from a study that explored how vulnerable groups and principles of human rights are incorporated into national sexual and reproductive health (SRH) policies of 4 selected countries (Spain, Scotland, Republic of Moldova, and Ukraine). It also aimed at discussing the involvement of vulnerable groups in SRH policy development from the perspective of policy-makers. Literature review, health policy analysis and 5 semi-structured interviews with policy-makers were carried out in this study. Content analysis of SRH policies was performed using the EquiFrame analytical framework. The study revealed that vulnerable groups and core principles of human rights are differently addressed in SRH policies within 4 studied countries. The opinions of policy-makers on the importance of mentioning vulnerable groups in policy documents and the way they ought to be mentioned varied, but they agreed that a clear definition of vulnerability, practical examples, and evidences on health status of these groups have to be included. In addition, different approaches to vulnerable group's involvement in policy development were identified during the interviews and the range of obstacles to this process was discussed by respondents. Incorporation of vulnerable groups in the SRH policies and their involvement in policy development were found to be important in addressing SRH of these groups and providing an opportunity for them to advocate for equal access to healthcare and exercise their rights. Future research on this topic should include representatives of vulnerable communities which could

  14. Are Sexual and Reproductive Health Policies Designed for All? Vulnerable Groups in Policy Documents of Four European Countries and Their Involvement in Policy Development

    Directory of Open Access Journals (Sweden)

    Olena Ivanova

    2015-10-01

    Full Text Available Background Health policies are important instruments for improving population health. However, experience suggests that policies designed for the whole population do not always benefit the most vulnerable. Participation of vulnerable groups in the policy-making process provides an opportunity for them to influence decisions related to their health, and also to exercise their rights. This paper presents the findings from a study that explored how vulnerable groups and principles of human rights are incorporated into national sexual and reproductive health (SRH policies of 4 selected countries (Spain, Scotland, Republic of Moldova, and Ukraine. It also aimed at discussing the involvement of vulnerable groups in SRH policy development from the perspective of policymakers. Methods Literature review, health policy analysis and 5 semi-structured interviews with policy-makers were carried out in this study. Content analysis of SRH policies was performed using the EquiFrame analytical framework. Results The study revealed that vulnerable groups and core principles of human rights are differently addressed in SRH policies within 4 studied countries. The opinions of policy-makers on the importance of mentioning vulnerable groups in policy documents and the way they ought to be mentioned varied, but they agreed that a clear definition of vulnerability, practical examples, and evidences on health status of these groups have to be included. In addition, different approaches to vulnerable group’s involvement in policy development were identified during the interviews and the range of obstacles to this process was discussed by respondents. Conclusion Incorporation of vulnerable groups in the SRH policies and their involvement in policy development were found to be important in addressing SRH of these groups and providing an opportunity for them to advocate for equal access to healthcare and exercise their rights. Future research on this topic should include

  15. Ethical Assessment of Human Embryonic Stem Cell Research According to Turkish Muslim Scholars: First Critical Analysis and Some Reflections.

    Science.gov (United States)

    Karakaya, Ahmet; Ilkilic, Ilhan

    2016-08-01

    Turkey, with a Muslim population of officially over 99 %, is one of the few secular states in the Muslim world. Although state institutions are not based on Islamic juridical and ethical norms, the latter play a significant role in defining people's attitudes towards controversial issues in the modern world, especially when backed by opinions of Muslim scholars living in Turkey. Accordingly, opinions of Muslim scholars undoubtedly have an important effect on bioethical decisions made by institutions and individuals. To explore the ethical positions of Muslim scholars living in Turkey and their arguments used in the ethical assessment of embryonic stem cell research; to discuss the biological-moral tensions arising in medical research on human embryos. Qualitative study. Muslim scholars located in different parts of Turkey. Qualitative method, involving the collection of opinions of various scholars, by means of 15 individual semi-structured interviews, evaluated using thematic qualitative analysis. Positions regarding embryonic stem cell research differ among Muslim scholars in Turkey. On the other hand, even where positions are similar, they are often supported by different arguments. Despite the heterogeneity of the arguments presented, the dominant position considers embryonic stem cell research as morally acceptable.

  16. Parental Involvement and Academic Achievement

    Science.gov (United States)

    Goodwin, Sarah Christine

    2015-01-01

    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…

  17. Exploring multiple intelligences theory in the context of science education: An action research approach

    Science.gov (United States)

    Goodnough, Karen Catherine

    2000-10-01

    Since the publication of Frames of Mind: The Theory in Practice, multiple intelligences, theory (Gardner, 1983) has been used by practitioners in a variety of ways to make teaching and learning more meaningful. However, little attention has been focused on exploring the potential of the theory for science teaching and learning. Consequently, this research study was designed to: (1) explore Howard Gardner's theory of multiple intelligences (1983) and its merit for making science teaching and learning more meaningful; (2) provide a forum for teachers to engage in critical self-reflection about their theory and practice in science education; (3) study the process of action research in the context of science education; and (4) describe the effectiveness of collaborative action research as a framework for teacher development and curriculum development. The study reports on the experiences of four teachers (two elementary teachers, one junior high teacher, and one high school teacher) and myself, a university researcher-facilitator, as we participated in a collaborative action research project. The action research group held weekly meetings over a five-month period (January--May, 1999). The inquiry was a qualitative case study (Stake, 1994) that aimed to understand the perspectives of those directly involved. This was achieved by using multiple methods to collect data: audiotaped action research meetings, fieldnotes, semi-structured interviews, journal writing, and concept mapping. All data were analysed on an ongoing basis. Many positive outcomes resulted from the study in areas such as curriculum development, teacher development, and student learning in science. Through the process of action research, research participants became more reflective about their practice and thus, enhanced their pedagogical content knowledge (Shulman, 1987) in science. Students became more engaged in learning science, gained a greater understanding of how they learn, and experienced a

  18. How are people with dementia involved in care-planning and decision-making? An Irish social work perspective.

    Science.gov (United States)

    Donnelly, Sarah; Begley, Emer; O'Brien, Marita

    2018-01-01

    In recent years, there have been national and international policy advances around capacity and decision-making and an apparent burgeoning rights-based approach to the issue, all of which have the potential to impact on the experience for people with dementia in Ireland. There is little evidence however on whether these policies and principles are being translated into practice and whether traditional paternalistic approaches to decision-making are being challenged. To gain insight into current practice, research was undertaken with social workers working with older people in Ireland; reporting on the involvement of people living with dementia in care-planning processes. Data collection included a mixed method approach; an on-line survey of social workers from across the country who reported on their open caseload during the month of June 2015 (N = 38 social workers reporting on the experiences of 788 older people, of which 39% of older people had a formal diagnosis of dementia). In addition, semi-structured telephone interviews were conducted with social workers working in the nine Community Health Organisation areas (N = 21). Findings show that people with dementia were high users of social work services, accounting for 44.5% of the client group. Social workers reported that there were no standardised approaches to how Health and Social Care Professionals involved people with dementia in care planning and decision-making. Overall, people with dementia were more likely to be excluded from decision-making processes due to (i) assumptions that they lacked capacity, (ii) family members preferences that the person was not involved, (iii) communication difficulties, (iv) time constraints, (v) little or no opportunity given or (vi) the person delegated decision-making to others. Good practices were identified through multidisciplinary team approaches and formal care planning meetings. This research highlights variability in how people with dementia participate

  19. Arthritis patients' motives for (not) wanting to be involved in medical decision-making and the factors that hinder or promote patient involvement.

    Science.gov (United States)

    Nota, Ingrid; Drossaert, Constance H C; Taal, Erik; van de Laar, Mart A F J

    2016-05-01

    The aim of this study is to gain insight into arthritis patients' motives for (not) wanting to be involved in medical decision-making (MDM) and the factors that hinder or promote patient involvement. In-depth semi-structured interviews were conducted with 29 patients suffering from Rheumatoid Arthritis (RA). Many patients perceived the questions about involvement in MDM as difficult, mostly because they were unaware of having a choice. Shared decision-making (SDM) was generally preferred, but the preferred level of involvement varied between and within individuals. Preference regarding involvement may vary according to the type of treatment and the severity of the complaints. A considerable group of respondents would have liked more participation than they had experienced in the past. Perceived barriers could be divided into doctor-related (e.g. a paternalistic attitude), patient-related (e.g. lack of knowledge) and context-related (e.g. too little time to decide) factors. This study demonstrates the complexity of predicting patients' preferences regarding involvement in MDM: most RA patients prefer SDM, but their preference may vary according to the situation they are in and the extent to which they experience barriers in getting more involved. Unawareness of having a choice is still a major barrier for patient participation. The attending physician seems to have an important role as facilitator in enhancing patient participation by raising awareness and offering options, but implementing SDM is a shared responsibility; all parties need to be involved and educated.

  20. Physicians' social competence in the provision of care to persons living in poverty: research protocol

    Directory of Open Access Journals (Sweden)

    Bedos Christophe P

    2010-03-01

    Full Text Available Abstract Background The quality of the physician-patient therapeutic relationship is a key factor in the effectiveness of care. Unfortunately, physicians and people living in poverty inhabit very different social milieux, and this great social distance hinders the development of a therapeutic alliance. Social competence is a process based on knowledge, skills and attitudes that support effective interaction between the physician and patient despite the intervening social distance. It enables physicians to better understand their patients' living conditions and to adapt care to patients' needs and abilities. Methods/Design This qualitative research is based on a comprehensive design using in-depth semi-structured interviews with 25 general practitioners working with low-income patients in Montreal's metropolitan area (Québec, Canada. Physicians will be recruited based on two criteria: they provide care to low-income patients with at least one chronic illness, and are identified by their peers as having expertise in providing care to a poor population. For this recruitment, we will draw upon contacts we have made in another research study (Loignon et al., 2009 involving clinics located in poor neighbourhoods. That study will include in-clinic observations and interviews with physicians, both of which will help us identify physicians who have developed skills for treating low-income patients. We will also use the snowball sampling technique, asking participants to refer us to other physicians who meet our inclusion criteria. The semi-structured interviews, of 60 to 90 minutes each, will be recorded and transcribed. Our techniques for ensuring internal validity will include data analysis of transcribed interviews, indexation and reduction of data with software qualitative analysis, and development and validation of interpretations. Discussion This research project will allow us to identify the dimensions of the social competence process that helps

  1. Giving voice to study volunteers: comparing views of mentally ill, physically ill, and healthy protocol participants on ethical aspects of clinical research.

    Science.gov (United States)

    Roberts, Laura Weiss; Kim, Jane Paik

    2014-09-01

    Ethical controversy surrounds clinical research involving seriously ill participants. While many stakeholders have opinions, the extent to which protocol volunteers themselves see human research as ethically acceptable has not been documented. To address this gap of knowledge, authors sought to assess views of healthy and ill clinical research volunteers regarding the ethical acceptability of human studies involving individuals who are ill or are potentially vulnerable. Surveys and semi-structured interviews were used to query clinical research protocol participants and a comparison group of healthy individuals. A total of 179 respondents participated in this study: 150 in protocols (60 mentally ill, 43 physically ill, and 47 healthy clinical research protocol participants) and 29 healthy individuals not enrolled in protocols. Main outcome measures included responses regarding ethical acceptability of clinical research when it presents significant burdens and risks, involves people with serious mental and physical illness, or enrolls people with other potential vulnerabilities in the research situation. Respondents expressed decreasing levels of acceptance of participation in research that posed burdens of increasing severity. Participation in protocols with possibly life-threatening consequences was perceived as least acceptable (mean = 1.82, sd = 1.29). Research on serious illnesses, including HIV, cancer, schizophrenia, depression, and post-traumatic stress disorder, was seen as ethically acceptable across respondent groups (range of means = [4.0, 4.7]). Mentally ill volunteers expressed levels of ethical acceptability for physical illness research and mental illness research as acceptable and similar, while physically ill volunteers expressed greater ethical acceptability for physical illness research than for mental illness research. Mentally ill, physically ill, and healthy participants expressed neutral to favorable perspectives regarding the ethical

  2. Future research needs involving pathogens in groundwater

    Science.gov (United States)

    Bradford, Scott A.; Harvey, Ronald W.

    2017-01-01

    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.

  3. Future research needs involving pathogens in groundwater

    Science.gov (United States)

    Bradford, Scott A.; Harvey, Ronald W.

    2017-06-01

    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.

  4. Improving the care of people with traumatic brain injury through the Neurotrauma Evidence Translation (NET program: protocol for a program of research

    Directory of Open Access Journals (Sweden)

    Green Sally E

    2012-08-01

    Full Text Available Abstract The Neurotrauma Evidence Translation (NET program was funded in 2009 to increase the uptake of research evidence in the clinical care of patients who have sustained traumatic brain injury. This paper reports the rationale and plan for this five-year knowledge translation research program. The overarching aims of the program are threefold: to improve outcomes for people with traumatic brain injury; to create a network of neurotrauma clinicians and researchers with expertise in knowledge translation and evidence-based practice; and to contribute knowledge to the field of knowledge translation research. The program comprises a series of interlinked projects spanning varying clinical environments and disciplines relevant to neurotrauma, anchored within four themes representing core knowledge translation activities: reviewing research evidence; understanding practice; developing and testing interventions for practice change; and building capacity for knowledge translation in neurotrauma. The program uses a range of different methods and study designs, including: an evidence fellowship program; conduct of and training in systematic reviews; mixed method study designs to describe and understand factors that influence current practices (e.g., semi-structured interviews and surveys; theory-based methods to develop targeted interventions aiming to change practice; a cluster randomised trial to test the effectiveness of a targeted theory-informed intervention; stakeholder involvement activities; and knowledge translation events such as consensus conferences.

  5. Factors influencing parents' decision to donate their healthy infant's DNA for minimal-risk genetic research.

    Science.gov (United States)

    Hatfield, Linda A; Pearce, Margaret M

    2014-11-01

    To examine factors that influence a parent's decision to donate their healthy infant's DNA for minimal-risk genetic research. Grounded theory, using semi-structured interviews conducted with 35 postpartum mother or mother-father dyads in an urban teaching hospital. Data were collected from July 2011 to January 2012. Audiorecorded semistructured interviews were conducted in private rooms with mothers or mother-father dyads 24 to 48 hr after the birth of their healthy, full-term infant. Data-driven content analysis using selected principles of grounded theory was performed. Parents' willingness to donate their healthy infant's DNA for minimal-risk pediatric genetic research emerged as a process involving three interacting components: the parents, the scientist, and the comfort of the child embedded within the context of benefit to the child. The purpose of the study and parents' perception of their commitment of time and resources determined their willingness to participate. The scientist's ability to communicate trust in the research process influenced parents' decisions. Physical discomfort of the child shaped parents' decision to donate DNA. Parental perception of a direct benefit to their child affected their willingness to discuss genetic research and its outcomes. Significant gaps and misunderstandings in parental knowledge of pediatric genetic research may affect parental willingness to donate their healthy child's DNA. Nurses knowledgeable about the decision-making process parents utilize to donate their healthy infant's DNA for minimal-risk genetic research and the factors influencing that decision are well positioned to educate parents about the role of genetics in health and illness and reassure potential research participants of the value and safeguards in pediatric genetic research. © 2014 Sigma Theta Tau International.

  6. Conflitos ambientais: uma análise da assimetria de poder entre os atores sociais envolvidos no caso do Mineroduto da Ferrous / Environmental conflict: an analysis of power asymmetry between social actors involved in the case of Ferrous Pipeline

    Directory of Open Access Journals (Sweden)

    Dayane Rouse Neves Sousa

    2015-12-01

    Full Text Available This work intends to present the environmental conflict initiated due to the installation of pipeline Ferrous Ressources S / A, in the micro region of Viçosa-MG, building an analysis of the positioning of the main social actors involved, as well as their respective relations of power. Thepipeline of Ferrous will connect the complex Beam Mine in Congonhas-MG, the port of Ferrous Ressources in Presidente Kennedy-ES in order to export iron ore. To do so, were used as methodological procedures: bibliographical research; document analysis; semi-structured interviews with different actors; and follow-up meetings of the Popular Campaign Against the Water and Pipeline Ferrous, public hearings and demonstrations taken place in the Viçosa. Furthermore, there was monitoring of the pipeline discussion in local newspapers and on blogs. Thus, this study demonstrated that the Ferrous company, which owns high economic and symbolic power, assumes the role of dominating the conflict. On the other hand, those affected and social movements against the construction of the project, are sometimes in the role of dominated, leaving them to articulate strategies of resistance to delay / stop the construction of the pipeline. The state, in turn, assumes different roles in this context, demonstrating thereby weakness in mediation and conflict management established by pipeline Ferrous mainly in the micro region of Viçosa-MG.

  7. Engaging Stakeholders in Patient-Centered Outcomes Research Regarding School-Based Sealant Programs.

    Science.gov (United States)

    Chi, Donald L; Milgrom, Peter; Gillette, Jane

    2018-02-01

    Purpose: The purpose of this study was to use qualitative methods to describe the key lessons learned during the stakeholder engagement stage of planning a randomized clinical trial comparing outcomes of silver diamine fluoride (SDF) as an alternative to pit-and-fissure sealants in a school-based delivery system. Methods: Eighteen caregivers and community-based stakeholders with involvement in the school-based sealant program Sealants for Smiles from the state of Montana, were recruited for this qualitative study. United States (U.S.) Patient-Centered Outcomes Research Institute (PCORI) methodology standards were used to develop two semi-structured interview guides consisting of 6 questions. One interview guide was used for telephone interviews with caregivers and the second was used for a stakeholder focus group. Content analytic methods were used to analyze the data. Results: All participants believed that a study comparing SDF and sealants was clinically relevant. Non-caregiver stakeholders agreed with the proposed primary outcome of the study (caries prevention) whereas caregivers also emphasized the importance of child-centered outcomes such as minimizing dental anxiety associated with dental care. Stakeholders described potential concerns associated with SDF such as staining and perceptions of safety and discussed ways to address these concerns through community engagement, appropriate framing of the study, proper consent procedures, and ongoing safety monitoring during the trial. Finally, stakeholders suggested dissemination strategies such as direct communication of findings through professional organizations and encouraging insurance plans to incentivize SDF use by reimbursing dental providers. Conclusions: Involving key stakeholders in early planning is essential in developing patient-centered research questions, outcomes measures, study protocols, and dissemination plans for oral health research involving a school-based delivery system. Copyright © 2018

  8. ADVANCING THE STUDY OF VIOLENCE AGAINST WOMEN USING MIXED METHODS: INTEGRATING QUALITATIVE METHODS INTO A QUANTITATIVE RESEARCH PROGRAM

    Science.gov (United States)

    Testa, Maria; Livingston, Jennifer A.; VanZile-Tamsen, Carol

    2011-01-01

    A mixed methods approach, combining quantitative with qualitative data methods and analysis, offers a promising means of advancing the study of violence. Integrating semi-structured interviews and qualitative analysis into a quantitative program of research on women’s sexual victimization has resulted in valuable scientific insight and generation of novel hypotheses for testing. This mixed methods approach is described and recommendations for integrating qualitative data into quantitative research are provided. PMID:21307032

  9. Awareness and Attitude of Physicians in Academia towards Human Stem Cell Research (HSCR) and Related Policies in Rajasthan, India

    OpenAIRE

    Nitin K Joshi; Latika Nath; Vibha Joshi; Anil Purohit

    2015-01-01

    Introduction: In India, several science agencies are promoting Stem Cell Research (SCR). There is paucity of studies which document the perception of doctors about SCR, especially physicians in academia. This study was carried out to assess perception of physicians in academia towards Human Stem Cell Research (HSCR) and related policies in India. Methods: We interviewed 200 doctors from three different government medical colleges of Rajasthan. A semi-structured questionnaire was used to disce...

  10. A Qualitative Research Regarding the Online Advertising Formats Used by Romanian Companies

    OpenAIRE

    Acatrinei Carmen

    2015-01-01

    The present paper offers an in-depth view about the online advertising formats that are used by Romanian companies or digital advertising agencies. The qualitative research based on semi-structured detailed interviews with 12 professionals, took place in Bucharest, in February-March 2015. From the online advertising formats defined by IAB, the Romanian representatives mentioned to promote their organizations or to develop campaigns for their clients by using: search, display, social media, vi...

  11. A critical ethnography of communication processes involving the management of oral chemotherapeutic agents by patients with a primary diagnosis of colorectal cancer: study protocol.

    Science.gov (United States)

    Mitchell, Gary; Porter, Sam; Manias, Elizabeth

    2015-04-01

    To describe the protocol used to examine the processes of communication between health professionals, patients and informal carers during the management of oral chemotherapeutic medicines to identify factors that promote or inhibit medicine concordance. Ideally communication practices about oral medicines should incorporate shared decision-making, two-way dialogue and an equality of role between practitioner and patient. While there is evidence that healthcare professionals are adopting these concordant elements in general practice there are still some patients who have a passive role during consultations. Considering oral chemotherapeutic medications, there is a paucity of research about communication practices which is surprising given the high risk of toxicity associated with chemotherapy. A critical ethnographic design will be used, incorporating non-participant observations, individual semi-structured and focus-group interviews as several collecting methods. Observations will be carried out on the interactions between healthcare professionals (physicians, nurses and pharmacists) and patients in the outpatient departments where prescriptions are explained and supplied and on follow-up consultations where treatment regimens are monitored. Interviews will be conducted with patients and their informal carers. Focus-groups will be carried out with healthcare professionals at the conclusion of the study. These several will be analysed using thematic analysis. This research is funded by the Department for Employment and Learning in Northern Ireland (Awarded February 2012). Dissemination of these findings will contribute to the understanding of issues involved when communicating with people about oral chemotherapy. It is anticipated that findings will inform education, practice and policy. © 2014 John Wiley & Sons Ltd.

  12. Trucks involved in fatal accidents factbook 2008.

    Science.gov (United States)

    2011-03-01

    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...

  13. Buses involved in fatal accidents factbook 2007

    Science.gov (United States)

    2010-03-01

    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...

  14. Trucks involved in fatal accidents factbook 2007.

    Science.gov (United States)

    2010-01-01

    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...

  15. Who and What Does Involvement Involve?

    DEFF Research Database (Denmark)

    Hansen, Jeppe Oute; Petersen, Anders; Huniche, Lotte

    2015-01-01

    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....

  16. 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.

    Directory of Open Access Journals (Sweden)

    Andres Chana-Munoz

    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

  17. 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.

    Science.gov (United States)

    Chana-Munoz, Andres; Jendroszek, Agnieszka; Sønnichsen, Malene; Kristiansen, Rune; Jensen, Jan K; Andreasen, Peter A; Bendixen, Christian; Panitz, Frank

    2017-01-01

    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

  18. Healthcare librarians and the delivery of critical appraisal training: barriers to involvement.

    Science.gov (United States)

    Maden-Jenkins, Michelle

    2011-03-01

      Many healthcare librarians are undertaking training in critical appraisal but a significant number are not cascading the training to their end-users.   To examine the barriers to healthcare librarian involvement in delivering critical appraisal training.   A questionnaire survey of 57 library services across 48 NHS Trust Library Services in north west England followed up with 21 semi-structured interviews.   Two types of barriers were noted: extrinsic barriers (organisational, environmental, training, role expectations) and intrinsic barriers (knowledge, skills, attitude).   These barriers are not mutually exclusive and by overcoming one of them it does not necessarily follow that healthcare librarians will engage in delivering critical appraisal skills training. The challenge lies in developing strategies to deal effectively with these barriers to encourage and support healthcare librarians in the delivery of critical appraisal training at a level at which they feel confident and able. © 2010 The authors. Health Information and Libraries Journal © 2010 Health Libraries Group.

  19. Balancing exploration and exploitation in transferring research into practice: a comparison of five knowledge translation entity archetypes.

    Science.gov (United States)

    Oborn, Eivor; Barrett, Michael; Prince, Karl; Racko, Girts

    2013-09-05

    Translating knowledge from research into clinical practice has emerged as a practice of increasing importance. This has led to the creation of new organizational entities designed to bridge knowledge between research and practice. Within the UK, the Collaborations for Leadership in Applied Health Research and Care (CLAHRC) have been introduced to ensure that emphasis is placed in ensuring research is more effectively translated and implemented in clinical practice. Knowledge translation (KT) can be accomplished in various ways and is affected by the structures, activities, and coordination practices of organizations. We draw on concepts in the innovation literature--namely exploration, exploitation, and ambidexterity--to examine these structures and activities as well as the ensuing tensions between research and implementation. Using a qualitative research approach, the study was based on 106 semi-structured, in-depth interviews with the directors, theme leads and managers, key professionals involved in research and implementation in nine CLAHRCs. Data was also collected from intensive focus group workshops. In this article we develop five archetypes for organizing KT. The results show how the various CLAHRC entities work through partnerships to create explorative research and deliver exploitative implementation. The different archetypes highlight a range of structures that can achieve ambidextrous balance as they organize activity and coordinate practice on a continuum of exploration and exploitation. This work suggests that KT entities aim to reach their goals through a balance between exploration and exploitation in the support of generating new research and ensuring knowledge implementation. We highlight different organizational archetypes that support various ways to maintain ambidexterity, where both exploration and exploitation are supported in an attempt to narrow the knowledge gaps. The KT entity archetypes offer insights on strategies in structuring

  20. Motivational assessment of non-treatment buprenorphine research participation in heroin dependent individuals.

    Science.gov (United States)

    Papke, Gina; Greenwald, Mark K

    2012-06-01

    Heroin abuse remains an important public health problem, particularly in economically disadvantaged areas. Insight into this problem is gained from interviewing addicted individuals. However, we lack systematic data on factors that motivate heroin users to participate in non-treatment research that offers both financial incentives (compensation) and non-financial incentives (e.g., short-term medication). To better understand the relative importance of several types of personal motivations to participate in non-treatment buprenorphine research, and to relate self-motivations to social, economic, demographic and drug use factors. Heroin dependent volunteers (N=235 total; 57 female and 178 male; 136 African American, 86 Caucasian, and 13 Other) applied for non-therapeutic buprenorphine research in an urban outpatient setting from 2004 to 2008. We conducted a semi-structured behavioral economic interview, after which participants ranked 11 possible motivations for research participation. Although the study was repeatedly described as non-treatment research involving buprenorphine, participants often ranked some treatment-related motivations as important (wanting to reduce/stop heroin use, needing a medication to get stabilized/detoxify). Some motivations correlated with income, heroin use, and years since marketing of buprenorphine. Two dimensions emerged from principal component analysis of motivation rankings: (1) treatment motivation vs. greater immediate needs and (2) commitment to trying alternatives vs. a more accepting attitude toward traditional interventions. In summary, heroin addicts' self-motivations to engage in non-therapeutic research are complex--they value economic gain but not exclusively or primarily--and relate to variables such as socioeconomic factors and drug use. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

  1. Engagement strategies that foster community self-determination in participatory research: Insider ownership through outsider championship.

    Science.gov (United States)

    Salsberg, Jon; Macridis, Soultana; Garcia Bengoechea, Enrique; Macaulay, Ann C; Moore, Spencer

    2017-06-01

    In order to maximize the benefits of community-based participatory research, effective ownership over the research process must be at least equally in the hands of the community. A previous social network analysis documented that the participatory research process shifted ownership from academic to community partners, but did not show what actions and strategies fostered this shift. This study follows the trajectory of a community-academic partnership and asks, from the perspective of the project stakeholders, which actions and strategies over the lifespan of the research led to the observed shift in ownership and decision-making from the original external academics to the community stakeholders? Qualitative description using inductive thematic analysis. One academic and five community stakeholders identified as central in a previous social network analysis, participated in retrospective, semi-structured interviews. Actions deemed to have fostered the observed shift in ownership included: existence of a strong champion; stimulating 'outside' ideas; emergence of core people; alignment of project goals with stakeholders' professional roles; involving the right people; personal qualities of the champion; trust-building; and active use of participatory engagement strategies. Although communities must take ownership over the research process to assure sustained action and change, a strong, trusted and accepted outside champion who actively enacts participatory engagement strategies can facilitate the participatory process and provide community stakeholders the time and support they need to achieve meaningful and sustained leadership roles. These findings have implications for how partnership research is designed and implemented, both in community and in clinical organisational settings. © The Author 2017. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

  2. Recruiting patients as partners in health research: a qualitative descriptive study.

    Science.gov (United States)

    Vat, Lidewij Eva; Ryan, Devonne; Etchegary, Holly

    2017-01-01

    representative from a national patient organization (7 female) completed semi-structured interviews. Results Recruitment infrastructures available to respondents varied, but could be categorized into three models including the traditional, third-party and directory models. Four categories of recruitment strategies were identified, representing multiple ways of recruiting patient partners: social marketing recruitment, community outreach recruitment, health system recruitment, and partnering recruitment. Conclusions Multiple recruitment strategies were identified for engaging patient partners in research, and some common factors influenced recruitment. Study findings contribute to the evidence base in patient engagement and provide guidance for research teams to help identify potential recruitment methods for their patient partners.

  3. Are Leadership and Management Essential for Good Research? An Interview Study of Genetic Researchers.

    Science.gov (United States)

    Antes, Alison L; Mart, Adelina; DuBois, James M

    2016-12-01

    Principal investigators are responsible for a myriad of leadership and management activities in their work. The practices they use to navigate these responsibilities ultimately influence the quality and integrity of research. However, leadership and management roles in research have received scant empirical examination. Semi-structured interviews with 32 National Institutes of Health (NIH)-funded genetic researchers revealed that they considered leadership and management essential for effective research, but their scientific training inadequately prepared them. We also report management practices that the researchers described using in their labs, as well as their perceptions of a proposed intervention to enhance laboratory leadership. These findings suggest best practices for the research community, future directions for scientific training, and implications for research on leadership and management in science.

  4. Are Leadership and Management Essential for Good Research? An Interview Study of Genetic Researchers

    Science.gov (United States)

    Antes, Alison L.; Mart, Adelina; DuBois, James M.

    2016-01-01

    Principal investigators are responsible for a myriad of leadership and management activities in their work. The practices they employ to navigate these responsibilities ultimately influence the quality and integrity of research. However, leadership and management roles in research have received scant empirical examination. Semi-structured interviews with 32 National Institutes of Health (NIH)-funded genetic researchers revealed that they considered leadership and management essential for effective research, but their scientific training inadequately prepared them. We also report management practices that the researchers described employing in their labs, as well as their perceptions of a proposed intervention to enhance laboratory leadership. These findings suggest best practices for the research community, future directions for scientific training, and implications for research on leadership and management in science. PMID:27646401

  5. Researching transformative learning spaces through learners' stories

    DEFF Research Database (Denmark)

    Maslo, Elina

    spaces, learning to learn through languages, learners´ stories, qualitative research method Methodology or Methods/Research Instruments or Sources Used A number of semi structured qualitative interviews have been conducted with three learners of Danish as second language. The language learners...... in the paper is on the research process and methodological tools. The goal of this paper is to show, that learners´ stories have a huge potential in researching learning processes. References Benson, P. & D. Nunan (2004). Lerners´ stories. Difference and Diversity in Language Learning. Cambridge University...... to use learners´ stories as a research methodology in the field of learning in general and language learning in particular....

  6. Eye Involvement in TSC

    Science.gov (United States)

    ... 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 ...

  7. Work-life balance in academic medicine: narratives of physician-researchers and their mentors.

    Science.gov (United States)

    Strong, Erin A; De Castro, Rochelle; Sambuco, Dana; Stewart, Abigail; Ubel, Peter A; Griffith, Kent A; Jagsi, Reshma

    2013-12-01

    Leaders in academic medicine are often selected from the ranks of physician-researchers, whose demanding careers involve multiple professional commitments that must also be balanced with demands at home. To gain a more nuanced understanding of work-life balance issues from the perspective of a large and diverse group of faculty clinician-researchers and their mentors. A qualitative study with semi-structured, in-depth interviews conducted from 2010 to 2011, using inductive analysis and purposive sampling. One hundred former recipients of U.S. National Institutes of Health (NIH) K08 or K23 career development awards and 28 of their mentors. Three researchers with graduate training in qualitative methods conducted the interviews and thematically coded verbatim transcripts. Five themes emerged related to work-life balance: (1) the challenge and importance of work-life balance for contemporary physician-researchers, (2) how gender roles and spousal dynamics make these issues more challenging for women, (3) the role of mentoring in this area, (4) the impact of institutional policies and practices intended to improve work-life balance, and (5) perceptions of stereotype and stigma associated with utilization of these programs. In academic medicine, in contrast to other fields in which a lack of affordable childcare may be the principal challenge, barriers to work-life balance appear to be deeply rooted within professional culture. A combination of mentorship, interventions that target institutional and professional culture, and efforts to destigmatize reliance on flexibility (with regard to timing and location of work) are most likely to promote the satisfaction and success of the new generation of clinician-researchers who desire work-life balance.

  8. Understanding practice change in community pharmacy: a qualitative research instrument based on organisational theory.

    Science.gov (United States)

    Roberts, Alison S; Hopp, Trine; Sørensen, Ellen Westh; Benrimoj, Shalom I; Chen, Timothy F; Herborg, Hanne; Williams, Kylie; Aslani, Parisa

    2003-10-01

    The past decade has seen a notable shift in the practice of pharmacy, with a strong focus on the provision of cognitive pharmaceutical services (CPS) by community pharmacists. The benefits of these services have been well documented, yet their uptake appears to be slow. Various strategies have been developed to overcome barriers to the implementation of CPS, with varying degrees of success, and little is known about the sustainability of the practice changes they produce. Furthermore, the strategies developed are often specific to individual programs or services, and their applicability to other CPS has not been explored. There seems to be a need for a flexible change management model for the implementation and dissemination of a range of CPS, but before it can be developed, a better understanding of the change process is required. This paper describes the development of a qualitative research instrument that may be utilised to investigate practice change in community pharmacy. Specific objectives included gaining knowledge about the circumstances surrounding attempts to implement CPS, and understanding relationships that are important to the change process. Organisational theory provided the conceptual framework for development of the qualitative research instrument, within which two theories were used to give insight into the change process: Borum's theory of organisational change, which categorizes change strategies as rational, natural, political or open; and Social Network Theory, which helps identify and explain the relationships between key people involved in the change process. A semi-structured affecting practice change found in the literature that warranted further investigation with the theoretic