WorldWideScience

Sample records for research participants lessons

  1. Lessons Learned Recruiting Minority Participants for Research in Urban Community Health Centers.

    Science.gov (United States)

    Fam, Elizabeth; Ferrante, Jeanne M

    2018-02-01

    To help understand and mitigate health disparities, it is important to conduct research with underserved and underrepresented minority populations under real world settings. There is a gap in the literature detailing real-time research staff experience, particularly in their own words, while conducting in-person patient recruitment in urban community health centers. This paper describes challenges faced at the clinic, staff, and patient levels, our lessons learned, and strategies implemented by research staff while recruiting predominantly low-income African-American women for an interviewer-administered survey study in four urban Federally Qualified Health Centers in New Jersey. Using a series of immersion-crystallization cycles, fieldnotes and research reflections written by recruiters, along with notes from team meetings during the study, were qualitatively analyzed. Clinic level barriers included: physical layout of clinic, very low or high patient census, limited private space, and long wait times for patients. Staff level barriers included: unengaged staff, overburdened staff, and provider and staff turnover. Patient level barriers included: disinterested patients, patient mistrust and concerns over confidentiality, no-shows or lack of patient time, and language barrier. We describe strategies used to overcome these barriers and provide recommendations for in-person recruitment of underserved populations into research studies. To help mitigate health disparities, disseminating recruiters' experiences, challenges, and effective strategies used will allow other researchers to build upon these experience in order to increase recruitment success of underserved and underrepresented minority populations into research studies. Copyright © 2018 National Medical Association. Published by Elsevier Inc. All rights reserved.

  2. Radioactive waste management and public participation in the EU. Lessons learnt from the EURATOM research framework programmes

    Energy Technology Data Exchange (ETDEWEB)

    Ferraro, Gianluca [European Commission, Joint Research Centre, Petten (Netherlands); Martell, Meritxell [Merience SCP, Barcelona (Spain)

    2015-12-15

    Since 2000, the EURATOM Framework Programmes have dedicated political attention and economic support to public participation in radioactive waste management (RWM). Although a one-fit-all solution for a participatory RWM does not exist, the diversity that characterizes the European Union (EU) offers a relevant pool of knowledge and experience. The Joint Research Centre has used the knowledge and experience cumulated by relevant EURATOM projects to define a list of general principles for a more participatory approach to RWM. The principles explained in this article can ultimately work as indications for the changes and strategic actions that are needed for a better RWM in the EU.

  3. Radioactive waste management and public participation in the EU. Lessons learnt from the EURATOM research framework programmes

    International Nuclear Information System (INIS)

    Ferraro, Gianluca; Martell, Meritxell

    2015-01-01

    Since 2000, the EURATOM Framework Programmes have dedicated political attention and economic support to public participation in radioactive waste management (RWM). Although a one-fit-all solution for a participatory RWM does not exist, the diversity that characterizes the European Union (EU) offers a relevant pool of knowledge and experience. The Joint Research Centre has used the knowledge and experience cumulated by relevant EURATOM projects to define a list of general principles for a more participatory approach to RWM. The principles explained in this article can ultimately work as indications for the changes and strategic actions that are needed for a better RWM in the EU.

  4. Political representation for social justice in nursing: lessons learned from participant research with destitute asylum seekers in the UK.

    Science.gov (United States)

    Cuthill, Fiona

    2016-09-01

    The concept of social justice is making a revival in nursing scholarship, in part in response to widening health inequalities and inequities in high-income countries. In particular, critical nurse scholars have sought to develop participatory research methods using peer researchers to represent the 'voice' of people who are living in marginalized spaces in society. The aim of this paper is to report on the experiences of nurse and peer researchers as part of a project to explore the experiences of people who find themselves destitute following the asylum process in the UK. In seeking to explore social injustice, three challenges are identified: lack of a robust political theory, institutional/professional constraints and an absence of skills to engage with the politics of social (in)justice. Each challenge is presented, opposing voices outlined and some possible solutions are suggested. The work of political theorist Nancy Fraser is used as a conceptual framework, in particular her focus on mis/framing and political representation for social justice. In addition, it is suggested that social justice needs to be further embedded in nursing policy and curriculum. Finally, nurses are encouraged to develop practical political skills to engage with both politics and the media in a neoliberal globalizing world. © 2016 John Wiley & Sons Ltd.

  5. eParticipation Research

    DEFF Research Database (Denmark)

    Medaglia, Rony

    2012-01-01

    Research on the use of information technology to support democratic decision-making (eParticipation) is experiencing ongoing growth, stimulated by an increasing attention from both practitioner and research communities. This study provides the first longitudinal analysis of the development of the e......Participation field based on a shared framework, capturing the directions that the research field of eParticipation is taking in recent developments. Drawing on a literature search covering the period from April 2006 to March 2011, this study identifies, analyzes, and classifies 122 research articles within...... also suggests new analytical categories of research. Drawing on the analysis, inputs for a research agenda are suggested. These include the need to move beyond a technological perspective, encouraging the ongoing shift of research focus from government to citizens and other stakeholders, and the need...

  6. The Implementation of Lesson Study to Strengthen Students: Understanding Participation and Application Capabilities in History Education Research Method on Topic Research and Development

    Science.gov (United States)

    Towaf, Siti Malikhah

    2016-01-01

    Learning can be observed from three-dimensions called: effectiveness, efficiency, and attractiveness of learning. Careful study carried out by analyzing the learning elements of the system are: input, process, and output. Lesson study is an activity designed and implemented as an effort to improve learning in a variety of dimensions. "Lesson…

  7. The participating researcher

    DEFF Research Database (Denmark)

    Hansen, Louise Ejgod

    2014-01-01

    and abilities. The cases will be analyzed with focus on the strategy of participation and the value implications of this for each of them. The second part of the paper will address the role of the researcher as a part of each of these participatory cultural projects as designer, applied researcher, consultant......My paper will focus on the self-reflection of my role as participating researcher in three different art projects all of which have participation as a key element. The paper will begin with a presentation of the three cases: Theatre Talks (Teatersamtaler), Stepping Stones (Trædesten) and Art...... or evaluator. The role of me as a researcher with regard to the development and evaluation of the projects will be analyzed, trying to answer the question: What are the methodological differences between the approaches and how does that affect the research process and results. These differences...

  8. eParticipation Research

    DEFF Research Database (Denmark)

    Medaglia, Rony

    2011-01-01

    This paper provides an update of the existing eParticipation research state of the art, and a longitudinal analysis of the development of the eParticipation field based on a shared framework of analysis. Drawing on a literature search covering the period from April 2006 to March 2011 included, 123......, sometimes in counterintuitive directions. Drawing on the analysis, the conclusion section provides inputs for a research agenda. These include the need to move beyond a technological perspective, and encouraging the ongoing shift of research focus from government to citizens and other stakeholders....

  9. Research Data Curation Pilots: Lessons Learned

    Directory of Open Access Journals (Sweden)

    David Minor

    2014-07-01

    Full Text Available In the spring of 2011, the UC San Diego Research Cyberinfrastructure (RCI Implementation Team invited researchers and research teams to participate in a research curation and data management pilot program. This invitation took the form of a campus-wide solicitation. More than two dozen applications were received and, after due deliberation, the RCI Oversight Committee selected five curation-intensive projects. These projects were chosen based on a number of criteria, including how they represented campus research, varieties of topics, researcher engagement, and the various services required. The pilot process began in September 2011, and will be completed in early 2014. Extensive lessons learned from the pilots are being compiled and are being used in the on-going design and implementation of the permanent Research Data Curation Program in the UC San Diego Library. In this paper, we present specific implementation details of these various services, as well as lessons learned. The program focused on many aspects of contemporary scholarship, including data creation and storage, description and metadata creation, citation and publication, and long term preservation and access. Based on the lessons learned in our processes, the Research Data Curation Program will provide a suite of services from which campus users can pick and choose, as necessary. The program will provide support for the data management requirements from national funding agencies.

  10. Archiving Data from New Survey Technologies: Lessons Learned on Enabling Research with High-Precision Data While Preserving Participant Privacy: Preprint

    Energy Technology Data Exchange (ETDEWEB)

    Gonder, J.; Burton, E.; Murakami, E.

    2014-11-01

    During the past 15 years, increasing numbers of organizations and planning agencies have begun collecting high-resolution Global Positioning System (GPS) travel data. Despite the significant effort and expense to collect it, privacy concerns often lead to underutilization of the data. To address this dilemma of providing data access while preserving privacy, the National Renewable Energy Laboratory, with support from the U.S. Department of Transportation and U.S. Department of Energy, established the Transportation Secure Data Center (TSDC). Lessons drawn from best-practice examples from other data centers have helped shape the structure and operating procedures for the TSDC, which functions under the philosophy of first and foremost preserving privacy, but doing so in a way that balances security with accessibility and usability of the data for legitimate research. This paper provides details about the TSDC approach toward achieving these goals, which has included creating a secure enclave with no external access for backing up and processing raw data, a publicly accessible website for downloading cleansed data, and a secure portal environment through which approved users can work with detailed spatial data using a variety of tools and reference information. This paper also describes lessons learned from operating the TSDC with respect to improvements in GPS data handling, processing, and user support, along with plans for continual enhancements to better support the needs of both data providers and users and to thus advance the research value derived from such valuable data.

  11. Health communication: lessons from research.

    Science.gov (United States)

    Shanmugam, A V

    1981-01-01

    In discussing the lessons learned from research in the area of health communication, focus is on basic strategic issues; the scope of health communications in terms of audience, information, education and motivation approaces and India's satellite Instructional Television Experiment (SITE). Health communication is the process by which a health idea is transferred from a source, such as a primary health center, to a receiver, community, with the intention of changing the community's behavior. This involves the formulation of specific strategies for the conduct of health and family welfare communication. In the processs of health communication, it has been a common practice in India as well as in other developing countries to depend upon a plethora of communication media. Yet, despite maximum utilization of the mass media and interpersonal channels of communication, questions remain about the efficacy of the system in bringing about change. Thus, the need to draw upon lessons from research becomes obvious. Communication effectiveness researches have concentrated on 3 basic strategic issues: the question of physical reception of messages by the audience; interpretation or understanding of messages on the part of the audience in accordance with the intention of the communicator; and effectiveness of communication on the cognitive, affective and behavioral dimensions of the audience. Innumberable researches in communication have provided several lessons which have expanded the scope of health communication. This expansion can be observed in terms of audiences reached, information disseminated, education undertaken, and motivation provided. Research has identified several distinct groups to whom specific health messages have to be addressed. These include government and political elites, health and family welfare program administrators, and the medical profession and clinical staff. Information on health needs to include both the concept of health and the pertinent ideas

  12. Children's participation in research

    DEFF Research Database (Denmark)

    Broström professor m.so., Stig

    2012-01-01

    In (post) modern society children are seen as active subjects and participants who have a legitimate basis in the United Nations Convention of the Rights of the Child. As a consequence of this, children are able to play an active role in the 10 planning of/and participation in both education...

  13. Recruitment and Retention Strategies for Minority or Poor Clinical Research Participants: Lessons from the Healthy Aging in Neighborhoods of Diversity across the Life Span Study

    Science.gov (United States)

    Ejiogu, Ngozi; Norbeck, Jennifer H.; Mason, Marc A.; Cromwell, Bridget C.; Zonderman, Alan B.; Evans, Michele K.

    2011-01-01

    Purpose of the study: Investigating health disparities requires studies designed to recruit and retain racially and socioeconomically diverse cohorts. It is critical to address the barriers that disproportionately affect participation in clinical research by minorities and the socioeconomically disadvantaged. This study sought to identify and…

  14. Researching participation in adult education

    DEFF Research Database (Denmark)

    Kondrup, Sissel

    It is a widespread perception that the challenge of increasing participation in adult education and training has intensified due to the transformation from industrial to knowledge based societies and the transformation implies that it becomes pivotal to increase the supply of highly qualified...... labour. This has fostered an interest in examining why and how people engage in adult education, how participation and especially non-participation in adult education can be explained and how participation rates can be increased. In this paper I outline different traditions within research on recruitment...... to and participation in adult education and training focusing primarily on unskilled and low skilled workers. I present how the traditions contribute to the perception of what effects participation and argue that the existing traditions must be extended and a new framework must be applied in order to understand how...

  15. Organizational safety factors research lessons learned

    International Nuclear Information System (INIS)

    Ryan, T.G.

    1995-01-01

    This Paper reports lessons learned and state of knowledge gained from an organizational factors research activity involving commercial nuclear power plants in the United States, through the end of 1991, as seen by the scientists immediately involved in the research. Lessons learned information was gathered from the research teams and individuals using a question and answer format. The following five questions were submitted to each team and individual: (1) What organizational factors appear to influence safety performance in some systematic way, (2) Should organizational factors research focus at the plant level, or should it extend beyond the plant level to the parent company, rate setting commissions, regulatory agencies, (3) How important is having direct access to plants for doing organizational factors research, (4) What lessons have been learned to date as the result of doing organizational factors research in a nuclear regulatory setting, and (5) What organizational research topics and issues should be pursued in the future? Conclusions based on the responses provided for this report are that organizational factors research can be conducted in a regulatory setting and produce useful results. Technologies pioneered in other academic, commercial, and military settings can be adopted for use in a nuclear regulatory setting. The future success of such research depends upon the cooperation of regulators, contractors, and the nuclear industry

  16. Lessons learned from TECNATOM's participation in the construction of NPP's

    International Nuclear Information System (INIS)

    Manrique, Alberto B.

    2010-01-01

    TECNATOM is a Spanish engineering company with more than 50 years of experience working for the nuclear industry across the world. TECNATOM has worked in over 30 countries in activities relating to the Operation and Maintenance of Nuclear Power Plants. The company started to work in the design of new Nuclear Power Plants in the early 90's and since then has continued to collaborate with different suppliers in the design and licensing of new reactors, especially in the areas of plant systems design, Man-Machine Interface design, the construction of Main Control Room simulators, training, the qualification of equipment and PSI/ISI engineering services. New man-machine interface designs and modifications are produced for both, new Nuclear Power Plants and existing facilities. For these new designs Human Factors Engineering must be applied, as in the case of any other traditional engineering discipline. The advantages of implementing adequate Human Factors Engineering techniques in the design of nuclear reactors have become not only a fact recognized by the majority of engineers and operators, but also an explicit requirement which is regulated and mandatory for the new designs. Additionally, the major savings achieved by a Nuclear Power Plant that has an operating methodology that significantly decreases the risk of operating errors makes their implementation necessary and almost vital. This paper describes the experience and lessons learned from TECNATOM's participation in the design of reactors belonging to Generations III, III+ and IV. (authors)

  17. Public Participation: Lessons from the Case Study Record

    Energy Technology Data Exchange (ETDEWEB)

    Beierle, Thomas C.; Cayford, Jerry [Resources for the Future, Washington, DC (United States)

    2001-07-01

    Public participation has received increasing attention in environmental policy making world wide. Yet research has been inadequate to answer fundamental questions about how successful past programs have been, what factors lead to success, and where efforts to improve public involvement should focus. To address these questions, we examine the case study record of public participation efforts in the United States over the last 30 years. We evaluate the success of numerous examples of public participation in environmental decision making and identify the factors that lead to success. The paper deals with a number of themes, including: The extent to which participation can incorporate public values into decision making, improve the substantive quality of decisions, reduce conflict, increase trust in institutions, and educate and inform the public; What can be expected from different approaches to public participation, such as public meetings, advisory committees, and mediation; The relative importance of the participatory process vs. the context in which participation takes place; Procedural features of particular importance; and The relationship between participation and implementation. The paper provides general results that can be used to guide the improvement of public participation programs, support assessment of innovative methods, and advance the theoretical understanding of public participation.

  18. Public Participation: Lessons from the Case Study Record

    International Nuclear Information System (INIS)

    Beierle, Thomas C.; Cayford, Jerry

    2001-01-01

    Public participation has received increasing attention in environmental policy making world wide. Yet research has been inadequate to answer fundamental questions about how successful past programs have been, what factors lead to success, and where efforts to improve public involvement should focus. To address these questions, we examine the case study record of public participation efforts in the United States over the last 30 years. We evaluate the success of numerous examples of public participation in environmental decision making and identify the factors that lead to success. The paper deals with a number of themes, including: The extent to which participation can incorporate public values into decision making, improve the substantive quality of decisions, reduce conflict, increase trust in institutions, and educate and inform the public; What can be expected from different approaches to public participation, such as public meetings, advisory committees, and mediation; The relative importance of the participatory process vs. the context in which participation takes place; Procedural features of particular importance; and The relationship between participation and implementation. The paper provides general results that can be used to guide the improvement of public participation programs, support assessment of innovative methods, and advance the theoretical understanding of public participation

  19. A novice researcher's reflection on recruiting participants for qualitative research.

    Science.gov (United States)

    Marks, Anne; Wilkes, Lesley; Blythe, Stacy; Griffiths, Rhonda

    2017-09-19

    This paper is a reflection by a PhD candidate on her qualitative study involving parents, diabetes educators and school teachers who were caring for a child with type 1 diabetes using intensive insulin therapy in primary school. To reflect on a novice researcher's experience of recruiting research participants from community, health and education settings in Australia. Participants were successfully recruited for the study using internet communication tools: Facebook support groups; the Australian Diabetes Educators Association (ADEA) e-newsletter; and emails sent to school principals. These methods were successful as Facebook and online support groups are popular, the study topic was of interest, the ADEA has many members, and numerous emails were sent to schools. Potential barriers to recruitment were a lack of access to those who did not use Facebook or the internet, gatekeepers, the high workloads of diabetes educators and teachers, and the time needed to obtain ethics approval and send a large number of emails to schools. Internet communication tools were successful in recruiting participants from community, health and education settings. However, different approaches were required for each type of participant. Lessons learned from this experience were: the importance of taking time to plan recruitment, including an in-depth understanding of potential participants and recruitment tools, the benefit of being an insider, and the need to work closely with gatekeepers. An understanding of recruitment is essential for ensuring access to appropriate participants and timely collection of data. The experience of the novice researcher may provide insight to others planning to use internet communication tools for recruitment. ©2012 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.

  20. Promoting nurse practitioner practice through research: opportunities, challenges, and lessons.

    Science.gov (United States)

    Hayes, Eileen

    2006-04-01

    To discuss the opportunities derived, challenges faced, and lessons learned in the research process, including recruiting and retaining nurse practitioner (NP) participants, obtaining institutional approval, and solving research team issues in a National Institutes of Health/National Institute of Nursing Research (NIH/NINR)-funded study of communication between NPs and their older patients in managed care and non-managed care settings. The video-taped interactions between 30 NPs and 150 patients, research team experiences in conducting the research, and a review of relevant literature. Key factors in NP study participation included recognizing the importance of research in demonstrating the effectiveness of the NP role and for advancing the profession, having participated in previous research, enjoying the research process, employer incentives, membership in NP professional organizations, relationships with the university and the school of nursing conducting the research, and knowledge of the coinvestigator's work. NP recruitment was facilitated by word of mouth, professional organization assistance, and articles in a widely distributed, free nursing journal. Data collection was significantly delayed by attrition of NP participants, logistical problems with scheduling and travel, and varied approval procedures by Institutional Review Boards (IRBs) at study sites. The pace of nursing research could be much more efficient if IRB processes involved fewer bureaucratic entanglements. Preliminary study findings, however, show positive outcomes for older patients after NP care. To demonstrate positive patient outcomes and move the NP profession forward, NPs must be willing to commit to participation in research on their effectiveness as providers in today's healthcare environment.

  1. E-Participation in the Legislative Process Lessons from Estonia for Enhancing Democratic Empowerment

    Directory of Open Access Journals (Sweden)

    Andrew Glencross

    2009-09-01

    Full Text Available This paper assesses the success of an innovative national e-participation project in Estonia. To carry out this task, the paper combines quantitative (aggregate user data, content analysis via tagging and qualitative (individual user survey and interviews with public officials data analysis. The analysis is conducted with two principal research objectives in mind. Firstly, to explain how e-participation has fared in Estonia, both in terms of citizen mobilization and government responses. The second goal is to evaluate a series of procedural and technological changes for enhancing e-participation. The Estonian case provides ample lessons for ensuring that e-participation in practice can better meet the expectations of users and government officials alike.

  2. A Reasoned Action Approach to Participation in Lesson Study

    NARCIS (Netherlands)

    de Vries, Siebrichje; Roorda, Gerrit

    2016-01-01

    This exploratory study investigates teachers’ attitude toward Lesson Study (LS), a professional development approach which is relatively unknown in the Netherlands. The paper reports a qualitative study based on the Reasoned Action Approach, which explains how teachers’ beliefs influence their

  3. Nurses as participants in research: an evaluation of recruitment techniques.

    Science.gov (United States)

    Luck, Lauretta; Chok, Harrison Ng; Wilkes, Lesley

    2017-09-19

    Recruitment and retention of participants, as well as response rates, can be challenging in nursing research. This can be because of the questions asked; the choice of methodology; the methods used to collect data; the characteristics of potential participants; the sample size required; and the duration of the study. Additionally, conducting research with nurses as participants presents several issues for them, including the time needed to participate in the research, the competing commitments for clinical practice, the political and environmental climate, and recruitment itself. To report on research studies conducted by the authors at a tertiary teaching hospital, to show the lessons learned when recruiting nurses to participate in nursing research. The authors discuss factors that supported recruitment of nurses in these studies, including the use of the personal touch and multiple recruitment strategies in a single study. Videos and photography facilitate interdisciplinary research and can be a valuable means of non-verbal data collection, especially with participants affected by disabilities, and can support research methods, such as the use of questionnaires. Recruiting nurses for research can be challenging. We suggest that researchers consider using more than one recruitment strategy when recruiting nurse participants. Recruitment is more successful if researchers align the aim(s) of the research with nurse's concerns and contexts. ©2012 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.

  4. Vulnerable participants in health research

    DEFF Research Database (Denmark)

    Nordentoft, Helle Merete; Nanna, Kappel

    2011-01-01

    Ethical guidelines for conducting research are embedded in the Helsinki declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and health care research in which purpose and methods often deviate from medical research. The guid......Ethical guidelines for conducting research are embedded in the Helsinki declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and health care research in which purpose and methods often deviate from medical research...... and problems of vulnerable patients and - at the same time - respect their integrity without exposing them unnecessarily? The article illuminates the interactional construction of roles and relationships and how they affect the contextual construction of vulnerability. In this respect we demonstrate...

  5. Research in organizational participation and cooperation

    DEFF Research Database (Denmark)

    Jeppesen, Hans Jeppe; Jønsson, Thomas; Rasmussen, Thomas

    2005-01-01

    This article discusses some different perspectives on organizational participation and presents conducted and ongoing research projects by the research unit SPARK at Department of Psychology, University of Aarhus.......This article discusses some different perspectives on organizational participation and presents conducted and ongoing research projects by the research unit SPARK at Department of Psychology, University of Aarhus....

  6. Do Research Participants Trust Researchers or Their Institution?

    Science.gov (United States)

    Guillemin, Marilys; Barnard, Emma; Allen, Anton; Stewart, Paul; Walker, Hannah; Rosenthal, Doreen; Gillam, Lynn

    2018-07-01

    Relationships of trust between research participants and researchers are often considered paramount to successful research; however, we know little about participants' perspectives. We examined whom research participants trusted when taking part in research. Using a qualitative approach, we interviewed 36 research participants, including eight Indigenous participants. Thematic analysis was used to analyze the data. This article focuses on findings related to non-Indigenous participants. In contrast to Indigenous participants, non-Indigenous participants placed their trust in research institutions because of their systems of research ethics, their reputation and prestige. Researchers working in non-Indigenous contexts need to be cognizant that the trust that participants place in them is closely connected with the trust that participants have in the institution.

  7. Participation and the right to health: lessons from Indonesia.

    Science.gov (United States)

    Halabi, Sam Foster

    2009-01-01

    The right to participation is the "the right of rights"--the basic right of people to have a say in how decisions that affect their lives are made. All legally binding international human rights treaties explicitly recognize the essential role of participation in realizing fundamental human rights. While the substance of the human right to health has been extensively developed, the right to participation as one of its components has remained largely unexplored. Should rights-based health advocacy focus on participation because there is a relationship between an individual's or a community's active involvement in health care decision-making and the highest attainable standard of health? In the context of the human right to health, does participation mean primarily political participation, or should we take the right to participation to mean more specifically the right of persons, individually and as a group, to shape health care policy for society and for themselves as patients? Decentralization of health care decision-making promises greater participation through citizen involvement in setting priorities, monitoring service provision, and finding new and creative ways to finance public health programs. Between 1999 and 2008, Indonesia decentralized health care funding and delivery to regional governments, resulting in substantial exclusion of its poor and uneducated citizens from the health care system while simultaneously expanding the opportunities for political participation for educated elites. This article explores the tension between the right to participation as an underlying determinant of health and as a political right by reviewing the experience of Indonesia ten years after its decision to decentralize health care provision. It is ultimately argued that rights-based advocates must be vigilant in retaining a unified perspective on human rights, resisting the persistent tendency to separate and prioritize the civil and political aspects of participation

  8. Promoting research participation: why not advertise altruism?

    Science.gov (United States)

    Williams, Brian; Entwistle, Vikki; Haddow, Gill; Wells, Mary

    2008-04-01

    Participation rates have a major impact on the quality, cost and timeliness of health research. There is growing evidence that participation rates may be falling and that new research governance structures and procedures may be increasing the likelihood of recruitment bias. It may be possible to encourage public reflection about research participation and enhance recruitment by providing information about the potential benefits of research to others as well as to research participants and by stimulating debate and influencing social expectations about involvement. Publicly funded and charitable bodies use various forms of advertising to encourage altruistic behaviour and generate social expectations about donating money, blood and organs for the benefit of others. Consideration should be given to the use of similar persuasive communications to promote wider participation in health research generally.

  9. Social Media Resources for Participative Design Research

    OpenAIRE

    Qaed, Fatema; Briggs, Jo; Cockton, Gilbert

    2016-01-01

    We present our experiences of novel value from online social media for Participative Design (PD) research. We describe how particular social media (e.g. Facebook, Pinterest, WhatsApp and Twitter) were used during a five-year project on learning space design by the researcher and interested teachers across all research phases (contextual review, user studies, PD action research). Social media were used to source and share comments, photographs and video documentation, supporting participation ...

  10. Child Participant Roles in Applied Linguistics Research

    Science.gov (United States)

    Pinter, Annamaria

    2014-01-01

    Children's status as research participants in applied linguistics has been largely overlooked even though unique methodological and ethical concerns arise in projects where children, rather than adults, are involved. This article examines the role of children as research participants in applied linguistics and discusses the limitations of…

  11. Preliminary Lessons about Supporting Participation and Learning in Inclusive Classrooms

    Science.gov (United States)

    Morningstar, Mary E.; Shogren, Karrie A.; Lee, Hyunjoo; Born, Kiara

    2015-01-01

    This descriptive study examined observational data collected in inclusive classrooms from six schools that were operating schoolwide inclusive policies and practices. Illustrative evidence of classroom practices supporting learning and participation of all students, including students with significant disabilities, adds to an understanding of…

  12. Lessons from the Olympics : participants' perceptions of the 2000 ...

    African Journals Online (AJOL)

    The purpose of this study was to investigate the experiences of South African athletes at the Olympic Games and to identify the possible factors that could have affected their performances. A sample of 44 participants at the 2000 Olympic Games completed a post-Olympic questionnaire. Although most athletes believed that ...

  13. The Planning of Teaching in the Context of Lesson Study: Research Findings

    Science.gov (United States)

    Kanellopoulou, Eurydice-Maria; Darra, Maria

    2018-01-01

    The main purpose of the present study is to examine the attitudes, perceptions and experiences of the teachers participating in the planning of teaching in the context of the Lesson Study. The present work, which is part of a wider research effort, followed a mixed methodological planning for reasons of triangulation. The survey was conducted from…

  14. Exploring Pedagogical Content Knowledge of Biology Graduate Teaching Assistants through Their Participation in Lesson Study

    Science.gov (United States)

    Lampley, Sandra A.; Gardner, Grant E.; Barlow, Angela T.

    2018-01-01

    Graduate teaching assistants (GTAs) are responsible for teaching the majority of biology undergraduate laboratory sections, although many feel underprepared to do so. This study explored the impact of biology GTA participation in a professional development model known as lesson study. Using a case study methodology with multiple qualitative data…

  15. Regional labour market research on participation rates

    NARCIS (Netherlands)

    Elhorst, J.P.

    1996-01-01

    This article reviews the methodology of 17 empirical studies in which the participation rate has been estimated with the help of regional data. After defining and pointing our the orientation of regional labour market research on participation rates, three methodological issues dominate the

  16. Participant Action Research and Environmental Education

    Directory of Open Access Journals (Sweden)

    Yasmin Coromoto Requena Bolívar

    2018-02-01

    Full Text Available The committed participation of the inhabitants in diverse Venezuelan communities is fundamental in the search of solution to environmental problems that they face in the daily life; in the face of this reality, studies based on Participant Action Research were addressed, through a review and documentary analysis of four works related to community participation, carried out in the state of Lara. For this, the following question was asked: ¿What was the achievement in the solution of environmental problems in the communities, reported through the master's degree works oriented under participant action research and presented to Yacambú University in 2011-2013? A qualitative approach is used, approaching the information according to the stages suggested by Arias (2012: Search of sources, initial reading of documents, preparation of the preliminary scheme, data collection, analysis and interpretation of the information, formulation of the final scheme, introduction and conclusions, final report. It begins with the definition of the units of analysis and inquiry of the literature, through theoretical positions, concepts and contributions on: participant action research, participation and environmental education, to culminate with the analysis and interpretation of the information and the conclusions of this investigation. For the collection of the data, the bibliographic records were used with the purpose of organizing the information on the researches consulted, and of summary for the synthesis of the documents. It was concluded that, in the analyzed degree works, the purpose of the IAP was fulfilled, which consisted in the transformation of the problem-situation, which allowed the IAP to become the propitious scenario to promote environmental participation and education not formal.

  17. Connecting polar research to NGSS STEM classroom lessons

    Science.gov (United States)

    Brinker, R.; Kast, D.

    2016-12-01

    Next Generation Science Standards (NGSS) are designed to bring consistent, rigorous science teaching across the United States. Topics are categorized as Performance Expectations (PE), Disciplinary Core Ideas (DCI), Cross-Cutting Concepts (CCC), and Science and Engineering Practices (SEP). NGSS includes a focus on environmental science and climate change across grade levels. Earth and planetary sciences are required at the high school level. Integrating polar science lessons into NGSS classrooms brings relevant, rigorous climate change curriculum across grade levels. Polar science provides opportunities for students to use current data during lessons, conduct their own field work, and collaborate with scientists. Polar science provides a framework of learning that is novel to most students. Inquiry and engagement are high with polar science lessons. Phenomenon related to polar science provide an excellent tool for science teachers to use to engage students in a lesson, stimulate inquiry, and promote critical thinking. When taught effectively, students see the connections between their community, polar regions and climate change, regardless of where on the planet students live. This presentation describes examples of how to effectively implement NGSS lessons by incorporating polar science lessons and field research. Examples of introductory phenomenon and aligned PEs, CCCs, DCIs, and SEPs are given. Suggested student activities, assessments, examples of student work, student research, labs, and PolarTREC fieldwork, use of current science data, and connections to scientists in the field are provided. The goals of the presentation are to give teachers a blueprint to follow when implementing NGSS lessons, and give scientists an understanding of the basics of NGSS so they may be better able to relate their work to U.S. science education and be more effective communicators of their science findings.

  18. Integrating citizen advisory boards in public participation: Lessons from the field

    International Nuclear Information System (INIS)

    Snyder, S.

    1995-01-01

    Citizen advisory boards have been used successfully, particularly by the chemical industry, as programs for public participation. Now the U.S. Department of Energy (DOE) has responded to a growing demand for more direct citizen involvement in environmental restoration decision making. The experience of the site-specific advisory board at the department's Fernald Environmental Management Project near Cincinnati provides lessons that contribute to the development of a model for the most efficient use of citizen advisory boards

  19. Lessons Learned: Conducting Research With Victims Portrayed in Sexual Abuse Images and Their Parents.

    Science.gov (United States)

    Walsh, Wendy A; Wolak, Janis; Lounsbury, Kaitlin; Howley, Susan; Lippert, Tonya; Thompson, Lawrence

    2016-03-27

    Victims portrayed in sexual abuse images may be resistant to participate in research because of embarrassment or shame due to the sensitive nature and potential permanency of images. No studies we are aware of explore reactions to participating in research after this type of crime. Telephone interviews were conducted with convenience samples of parents (n= 46) and adolescents who were victims of child sexual abuse (n= 11; some of whom were portrayed in sexual abuse images), and online surveys were completed by adult survivors depicted in abuse images (N= 133). The first lesson was that few agencies tracked this type of crime. This lack of tracking raises the question as to what types of data should be collected and tracked as part of an investigation. The second lesson was that few victims at the two participating agencies had been portrayed in sexual abuse images (4%-5%). The third lesson was that once possible cases were identified, we found relatively high percentages of consent to contact and interview completions. This implies that researchers and service providers should not be hesitant about conducting research after an investigation of child sexual abuse. The fourth lesson was that the vast majority of participants reported not being upset by the questions. We hope that the data presented here will encourage agencies to reconsider the types of data being tracked and will encourage researchers to conduct in-depth research with populations that are often difficult to reach to continue improving the professional response to child victimization. © The Author(s) 2016.

  20. Improving medical students’ participation in research

    Directory of Open Access Journals (Sweden)

    Menon R

    2018-01-01

    Full Text Available Rahul Menon, Vishnou Mourougavelou, Arjun MenonFaculty of Medicine, Imperial College London, London, UKWe read with great interest the review by Siddaiah-Subramanya et al1 regarding the difficulty for medical students to participate in research, in developing countries. From our own experience as medical students, we agree that organizational factors, adequacy of knowledge, and variability in “attitudes” may all contribute to difficulty in participating in research. Nevertheless, we propose that the introduction of research projects, which may be part of an intercalated degree, could help improve medical students’ involvement in research.Author's replyManjunath Siddaiah-Subramanya,1,2 Harveen Singh,3 Kor Woi Tiang1,21Department of Surgery, Logan Hospital, Meadowbrook, 2Department of Medicine, Griffith University, Nathan, 3Department of Gastroenterology, Lady Cilento Children’s Hospital, Brisbane, QLD, Australia We would like to thank Menon et al for the letter in response to our article.1 We note that an overarching theme in the letter is the situation in countries where research at medical school could be improved. In the letter, Menon et al have brought out a couple of important issues: one is that the problem is multifactorial, and the other is the fact that opportunities and encouragement need to be provided to the students so that they could get more involved in research.View the original paper by Siddaiah-Subramanya and colleagues.

  1. Sharing Research Findings with Research Participants and Communities

    Directory of Open Access Journals (Sweden)

    LE Ferris

    2011-06-01

    Full Text Available In occupational and environmental health research, individual, group and community research participants have a unique and vested interest in the research findings. The ethical principles of autonomy, non-maleficence and beneficence are helpful in considering the ethical issues in the disclosure of research findings in occupational and environmental health research. Researchers need to include stakeholders, such as groups and communities, in these discussions and in planning for the dissemination of research findings. These discussions need to occur early in the research process.

  2. Contemporary Discourses in Qualitative Research: Lessons for ...

    African Journals Online (AJOL)

    sciences) to move beyond 'numbers' or statistical analysis in order to strengthen their ... approach and using the appropriate qualitative research methods in health research ... the foundation for social science research (Marvasti, 2004: 1).

  3. Access, entry and researcher-participant position

    DEFF Research Database (Denmark)

    Louw, Arnt Vestergaard

    2015-01-01

    This article reports on methodological experiences obtained in an anthropologically inspired qualitative study among students of carpentry in Denmark. On the one hand the article deals with methodological issues of doing anthropological research among students of carpentry, while on the other...... it deals with the research findings that such a research design produced. As well as the methodological issues of researcher access, entry and participant position in the field, this article reports on the following questions: What kinds of implicit expectations of the students are embedded in the way...... the school introduces and initiates the programme? What kinds of effects does this have on the motivation of the students? How do the terms and professional language of the profession work on the individual students in including and excluding ways? These specific descriptions of classroom pedagogy, inspired...

  4. Basic Science Research and the Protection of Human Research Participants

    Science.gov (United States)

    Eiseman, Elisa

    2001-03-01

    Technological advances in basic biological research have been instrumental in recent biomedical discoveries, such as in the understanding and treatment of cancer, HIV/AIDS, and heart disease. However, many of these advances also raise several new ethical challenges. For example, genetic research may pose no physical risk beyond that of obtaining the initial blood sample, yet it can pose significant psychological and economic risks to research participants, such as stigmatization, discrimination in insurance and employment, invasion of privacy, or breach of confidentiality. These harms may occur even when investigators do not directly interact with the person whose DNA they are studying. Moreover, this type of basic research also raises broader questions, such as what is the definition of a human subject, and what kinds of expertise do Institutional Review Boards (IRBs) need to review the increasingly diverse types of research made possible by these advances in technology. The National Bioethics Advisory Commission (NBAC), a presidentially appointed federal advisory committee, has addressed these and other ethical, scientific and policy issues that arise in basic science research involving human participants. Two of its six reports, in particular, have proposed recommendations in this regard. "Research Involving Human Biological Materials: Ethical and Policy Guidance" addresses the basic research use of human tissues, cells and DNA and the protection of human participants in this type of research. In "Ethical and Policy Issues in the Oversight of Human Research" NBAC proposes a definition of research involving human participants that would apply to all scientific disciplines, including physical, biological, and social sciences, as well as the humanities and related professions, such as business and law. Both of these reports make it clear that the protection of research participants is key to conducting ethically sound research. By ensuring that all participants in

  5. Pockets of Participation: Revisiting Child-Centred Participation Research

    Science.gov (United States)

    Franks, Myfanwy

    2011-01-01

    This article revisits the theme of the clash of interests and power relations at work in participatory research which is prescribed from above. It offers a possible route toward solving conflict between adult-led research carried out by young researchers, funding requirements and organisational constraints. The article explores issues of…

  6. Ethical Considerations in Research Participation Virality.

    Science.gov (United States)

    Ellis-Barton, Carol

    2016-07-01

    This article seeks to commence and encourage discussion around the upcoming ethical challenges of virality in network structures. When the call for participation in a research project on lupus in Ireland went from an advertisement in a newsletter to a meme (unit of transmissible information) on a closed Facebook page, the ethical considerations of virality were raised. The article analyzes the Association of Internet Researchers guidelines, Facebook policies, and the context of privacy in relation to virality. Virality creates the leverage for methodological pluralism. The nature of the inquiry can determine the method rather than the other way around. Viral ethical considerations are evolving due to the cyber world becoming the primary meme of communication, with flexibility in the researcher's protocol providing opportunities for efficient, cost-effective, and diverse recruitment. © The Author(s) 2016.

  7. Goethe's Faust Revisited: Lessons from DIT Research.

    Science.gov (United States)

    Nucci, Larry

    2002-01-01

    Discusses the Defining Issues Test as an invaluable tool for research and practice in moral education. Explains that because such instruments are based upon previous developmental research, they are unsuitable for research on moral development. Argues that these measures stand in the way of generating new knowledge. (CAJ)

  8. 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.

  9. Effective Teamwork Practical Lessons from Organizational Research

    CERN Document Server

    West, Michael A

    2012-01-01

    Updated to reflect the latest research evidence, the third edition of Effective Teamwork provides business managers with the necessary guidance and tools to build and maintain effective teamwork strategies. A new edition of a bestselling book on teamwork from an acknowledged leader in the fieldOffers a unique integration of rigorous research with practical guidance to develop effective leadership teamsFeatures new chapters on virtual teams and top management teams, plus contemporary themes of ethics and valuesUtilizes research based on positive psychology techniques

  10. Twenty years of immunocontraceptive research: lessons learned.

    Science.gov (United States)

    Miller, Lowell A; Fagerstone, Kathleen A; Eckery, Douglas C

    2013-12-01

    The National Wildlife Research Center (NWRC) began immunocontraception vaccine research by testing porcine zona pellucida (PZP) on white-tailed deer (Odocoileus virginianus). Early PZP research demonstrated that PZP induced infertility; however, increased length of the rut was observed in PZP-treated deer. An alternative vaccine using a keyhole limpet hemocyanin-gonadotropin-releasing hormone (KLH-GnRH) conjugate formulated with modified Freund's adjuvant was developed at NWRC. Suppression of GnRH has reduced reproduction in both sexes but is most effective in females. This vaccine was effective in preventing contraception in female deer for several years after a prime and boost. Due to adverse side effects of Freund's adjuvant, NWRC developed a new adjuvant called AdjuVac, a mineral oil/surfactant adjuvant with the addition of Mycobacterium avium as an immunostimulant. The price of KLH prompted a search for a more economical hemocyanin carrier protein for the GnRH peptide. Blue protein, derived from the mollusk Concholepas concholepas, proved to be a successful option. Formulation improvements resulted in a vaccine that can be effective as a single injection for multiple years, now called GonaCon. GonaCon is registered with the Environmental Protection Agency (EPA) for use in white-tailed deer in urban/suburban areas and for wild horses (Equus caballus) and burros (Equus asinus). Future GonaCon applications may include reducing reproduction to manage populations of other wildlife species, such as prairie dogs (Cynomys ludovicianus) in urban areas and suppressing reproduction to reduce the spread of venereal diseases such as brucellosis. Research is being conducted to develop a GnRH vaccine used in combination with the rabies vaccine to control population growth in free-roaming dogs, with the secondary effect of managing the spread of rabies. The EPA would regulate all these uses. Research is also ongoing on a GnRH vaccine to delay the onset of adrenocortical

  11. Radon risk communication research: Practical lessons

    International Nuclear Information System (INIS)

    Fisher, A.; Johnson, F.R.

    1990-01-01

    Those responsible for state and local radon programs often express frustration about the small share of homes that have been tested for radon, and the small share of those with high readings that have been mitigated. There are now a number of completed studies that have examined how well alternative ways of communicating about radon risk have accomplished the goals of motivating appropriate testing and mitigation. This paper summarizes the research results that are most crucial for planning and implementing effective radon risk communication programs. We identify six reasons why people do not respond to radon as a serious threat and provide some remedies suggested by radon studies

  12. Leptin in humans: lessons from translational research.

    Science.gov (United States)

    Blüher, Susann; Mantzoros, Christos S

    2009-03-01

    Leptin has emerged over the past decade as a key hormone in not only the regulation of food intake and energy expenditure but also in the regulation of neuroendocrine and immune function as well as the modulation of glucose and fat metabolism as shown by numerous observational and interventional studies in humans with (complete) congenital or relative leptin deficiency. These results have led to proof-of-concept studies that have investigated the effect of leptin administration in subjects with complete (congenital) leptin deficiency caused by mutations in the leptin gene as well as in humans with relative leptin deficiency, including states of lipoatrophy or negative energy balance and neuroendocrine dysfunction, as for instance seen with hypothalamic amenorrhea in states of exercise-induced weight loss. In those conditions, most neuroendocrine, metabolic, or immune disturbances can be restored by leptin administration. Leptin replacement therapy is thus a promising approach in several disease states, including congenital complete leptin deficiency, states of energy deprivation, including anorexia nervosa or milder forms of hypothalamic amenorrhea, as well as syndromes of insulin resistance seen in conditions such as congenital or acquired lipodystrophy. In contrast, states of energy excess such as garden-variety obesity are associated with hyperleptinemia that reflects either leptin tolerance or leptin resistance. For those conditions, development of leptin sensitizers is currently a focus of pharmaceutical research. This article summarizes our current understanding of leptin's role in human physiology and its potential role as a novel therapeutic option in human disease states associated with a new hormone deficiency, ie, leptin deficiency.

  13. Researchers' perspectives on pediatric obesity research participant recruitment.

    Science.gov (United States)

    Parikh, Yasha; Mason, Maryann; Williams, Karen

    2016-12-01

    Childhood obesity prevalence has tripled over the last three decades. Pediatric obesity has important implications for both adult health as well as the United States economy. In order to combat pediatric obesity, exploratory studies are necessary to create effective interventions. Recruitment is an essential part of any study, and it has been challenging for all studies, especially pediatric obesity studies. The objective of this study was to understand barriers to pediatric obesity study recruitment and review facilitators to overcome recruitment difficulties. Twenty four childhood obesity researchers were contacted. Complete data for 11 researchers were obtained. Interviews were transcribed and analyzed using content analysis. Grounded Theory methodological approach was used, as this was an exploratory study. Investigators YP and MM coded the interviews using 28 codes. Barriers to recruitment included: family and study logistics, family economics, lack of provider interest, invasive protocols, stigma, time restraints of clinicians, lack of patient motivation/interest, groupthink of students in a classroom, and participants who do not accept his or her own weight status. Facilitators to enhance recruitment practices included accommodating participants outside of regular clinic hours, incentivizing participants, cultivating relationships with communities, schools and clinics prior to study recruitment, emphasizing benefits of a study for the patient, and shifting language to focus on health rather than obesity. Pediatric obesity researchers face many standard and some unique challenges to recruitment, reflecting challenges common to clinical research as well as some specific to pediatrics and some specific to obesity research. Both pediatric studies as well as obesity studies are an added challenge to the already-difficult task of general study recruitment. Our findings can be used to make researchers more aware of potential difficulties, approaches and on

  14. Amish-Initiated Burn Care Project: Case Report and Lessons Learned in Participatory Research.

    Science.gov (United States)

    Hess, Rosanna F

    2017-03-01

    This case report describes the phases of an Amish Burn Care Project and the lessons learned throughout the process. Data sources to construct the case report included participant observation, interviews, archival documents, and a focus group. The narrative is organized into five phases of a participatory research approach: engagement, formalization, mobilization, maintenance, and expansion. Community-initiated research led to legitimate change, working together for change took time, team members grew in mutual trust and respect for each other, cultural humility brought personal and professional growth, and capacity building took place through mutually supported efforts.

  15. Towards Distributed Citizen Participation: Lessons from WikiLeaks and the Queensland Floods

    Directory of Open Access Journals (Sweden)

    Axel Bruns

    2012-12-01

    Full Text Available This paper examines the rapid and ad hoc development and interactions of participative citizen communities during acute events, using the examples of the 2011 floods in Queensland, Australia, and the global controversy surrounding Wikileaks and its spokesman, Julian Assange. The self-organising community responses to such events which can be observed in these cases bypass or leapfrog, at least temporarily, most organisational or administrative hurdles which may otherwise frustrate the establishment of online communities; they fast-track the processes of community development and structuration. By understanding them as a form of rapid prototyping, e-democracy initiatives can draw important lessons from observing the community activities around such acute events.

  16. Learning on governance in forest ecosystems: Lessons from recent research

    Directory of Open Access Journals (Sweden)

    Catherine May Tucker

    2010-09-01

    Full Text Available Research on forest governance has intensified in recent decades with evidence that efforts to mitigate deforestation and encourage sustainable management have had mixed results. This article considers the progress that has been made in understanding the range of variation in forest governance and management experiences. It synthesizes findings of recent interdisciplinary research efforts, with particular attention to work conducted through the Center for the Study of Institutions, Population and Environmental Change and the International Forestry Resources and Institution Research Program. By identifying areas of progress, lessons learned, and challenges for successful forest governance, the discussion points to policy implications and priorities for research.Research on forest governance has intensified in recent decades with evidence that efforts to mitigate deforestation and encourage sustainable management have had mixed results. This article considers the progress that has been made in understanding the range of variation in forest governance and management experiences. It synthesizes findings of recent interdisciplinary research efforts, which indicate that sustainable management of forest resources is associated with secure rights, institutions that fit the local context, and monitoring and enforcement. At the same time, the variability in local contexts and interactions of social, political, economic and ecological processes across levels and scales of analysis create uncertainties for the design and maintenance of sustainable forest governance.  By identifying areas of progress, lessons learned, and gaps in knowledge, the discussion suggests priorities for further research.Research on forest governance has intensified in recent decades with evidence that efforts to mitigate deforestation and encourage sustainable management have had mixed results. This article considers the progress that has been made in understanding the range of

  17. Building Sustainable Research Engagements: Lessons Learned from Research with Schools

    Science.gov (United States)

    Vukotich, Charles J., Jr.; Cousins, Jennifer; Stebbins, Samuel

    2014-01-01

    Engaged scholarship, translational science, integrated research, and interventionist research, all involve bringing research into a practical context. These usually require working with communities and institutions, and often involve community based participatory research. The article offers practical guidance for engaged research. The authors…

  18. Maintaining Research Integrity While Balancing Cultural Sensitivity: A Case Study and Lessons From the Field.

    Science.gov (United States)

    Sibbald, Rebekah; Loiseau, Bethina; Darren, Benedict; Raman, Salem A; Dimaras, Helen; Loh, Lawrence C

    2016-04-01

    Contemporary emphasis on creating culturally relevant and context specific knowledge increasingly drives researchers to conduct their work in settings outside their home country. This often requires researchers to build relationships with various stakeholders who may have a vested interest in the research. This case study examines the tension between relationship development with stakeholders and maintaining study integrity, in the context of potential harms, data credibility and cultural sensitivity. We describe an ethical breach in the conduct of global health research by a arising from the ad-hoc participation of a community stakeholder external to the visiting research group. A framework for reflection is developed from a careful examination of underlying factors and presented with a discussion of consequences and mitigation measures. This framework aims to present lessons learned for researchers working abroad who might face similar situations in their work. © 2015 John Wiley & Sons Ltd.

  19. Nurses' experiences of participation in a research and development programme

    DEFF Research Database (Denmark)

    Jensen, Kirsten Pryds; Bäck-Pettersson, Siv; Kýlén, Sven

    2013-01-01

    To describe clinical nurses' experience of participating in a Research and Development (R&D) programme and its influence on their research interest and ability to conduct and apply nursing research......To describe clinical nurses' experience of participating in a Research and Development (R&D) programme and its influence on their research interest and ability to conduct and apply nursing research...

  20. Trade Union Participation in University Research Policies.

    Science.gov (United States)

    Leydesdorff, Loet

    1984-01-01

    The recent development of Dutch research coordination agencies, the Science Shops, forms the context for a description of the relationship between university research and policy at Amsterdam University and the national trade union organization. Management tools such as project financing and other elements of this system are discussed. (MSE)

  1. Engaging the Deaf American Sign Language Community: Lessons From a Community-Based Participatory Research Center

    Science.gov (United States)

    McKee, Michael; Thew, Denise; Starr, Matthew; Kushalnagar, Poorna; Reid, John T.; Graybill, Patrick; Velasquez, Julia; Pearson, Thomas

    2013-01-01

    Background Numerous publications demonstrate the importance of community-based participatory research (CBPR) in community health research, but few target the Deaf community. The Deaf community is understudied and underrepresented in health research despite suspected health disparities and communication barriers. Objectives The goal of this paper is to share the lessons learned from the implementation of CBPR in an understudied community of Deaf American Sign Language (ASL) users in the greater Rochester, New York, area. Methods We review the process of CBPR in a Deaf ASL community and identify the lessons learned. Results Key CBPR lessons include the importance of engaging and educating the community about research, ensuring that research benefits the community, using peer-based recruitment strategies, and sustaining community partnerships. These lessons informed subsequent research activities. Conclusions This report focuses on the use of CBPR principles in a Deaf ASL population; lessons learned can be applied to research with other challenging-to-reach populations. PMID:22982845

  2. Lessons learned: advantages and disadvantages of mixed method research

    DEFF Research Database (Denmark)

    Malina, Mary A.; Nørreklit, Hanne; Selto, Frank H.

    2011-01-01

    on the use and usefulness of a specialized balanced scorecard; and third, to encourage researchers to actually use multiple methods and sources of data to address the very many accounting phenomena that are not fully understood. Design/methodology/approach – This paper is an opinion piece based...... on the authors' experience conducting a series of longitudinal mixed method studies. Findings – The authors suggest that in many studies, using a mixed method approach provides the best opportunity for addressing research questions. Originality/value – This paper provides encouragement to those who may wish......Purpose – The purpose of this paper is first, to discuss the theoretical assumptions, qualities, problems and myopia of the dominating quantitative and qualitative approaches; second, to describe the methodological lessons that the authors learned while conducting a series of longitudinal studies...

  3. Participative Action Research: The Vision Conference

    Directory of Open Access Journals (Sweden)

    René Victor Valqui Vidal

    2003-11-01

    Full Text Available This paper presents the principles behind the design and management of the Vision Conference: a one-day workshop for a large group of participants endeavoured to create ideas, projects and visions for the future activities of a local community or an organisation. A case study from a local community in Denmark is also presented with the purpose of illustrating the organisation, planning and management of a Vision Conference. The paper focuses in the three central social processes of the conference: group work, problem solving and facilitation. The paper ends with a discussion of creativity and creativity techniques suitable for Vision Conferences.

  4. Characterizing Mathematics Teaching Research Specialists' Mentoring in the Context of Chinese Lesson Study

    Science.gov (United States)

    Gu, Feishi; Gu, Lingyuan

    2016-01-01

    This study examines how mathematics teaching research specialists mentor practicing teachers during post-lesson debriefs of a lesson study in China. Based on a systematic, fine-grained analysis of 107 h of videotaped mentoring meetings of 20 groups of teachers and teaching research specialists from different elementary schools, this study reveals…

  5. Harvard Personal Genome Project: lessons from participatory public research

    Science.gov (United States)

    2014-01-01

    Background Since its initiation in 2005, the Harvard Personal Genome Project has enrolled thousands of volunteers interested in publicly sharing their genome, health and trait data. Because these data are highly identifiable, we use an ‘open consent’ framework that purposefully excludes promises about privacy and requires participants to demonstrate comprehension prior to enrollment. Discussion Our model of non-anonymous, public genomes has led us to a highly participatory model of researcher-participant communication and interaction. The participants, who are highly committed volunteers, self-pursue and donate research-relevant datasets, and are actively engaged in conversations with both our staff and other Personal Genome Project participants. We have quantitatively assessed these communications and donations, and report our experiences with returning research-grade whole genome data to participants. We also observe some of the community growth and discussion that has occurred related to our project. Summary We find that public non-anonymous data is valuable and leads to a participatory research model, which we encourage others to consider. The implementation of this model is greatly facilitated by web-based tools and methods and participant education. Project results are long-term proactive participant involvement and the growth of a community that benefits both researchers and participants. PMID:24713084

  6. Harvard Personal Genome Project: lessons from participatory public research.

    Science.gov (United States)

    Ball, Madeleine P; Bobe, Jason R; Chou, Michael F; Clegg, Tom; Estep, Preston W; Lunshof, Jeantine E; Vandewege, Ward; Zaranek, Alexander; Church, George M

    2014-02-28

    Since its initiation in 2005, the Harvard Personal Genome Project has enrolled thousands of volunteers interested in publicly sharing their genome, health and trait data. Because these data are highly identifiable, we use an 'open consent' framework that purposefully excludes promises about privacy and requires participants to demonstrate comprehension prior to enrollment. Our model of non-anonymous, public genomes has led us to a highly participatory model of researcher-participant communication and interaction. The participants, who are highly committed volunteers, self-pursue and donate research-relevant datasets, and are actively engaged in conversations with both our staff and other Personal Genome Project participants. We have quantitatively assessed these communications and donations, and report our experiences with returning research-grade whole genome data to participants. We also observe some of the community growth and discussion that has occurred related to our project. We find that public non-anonymous data is valuable and leads to a participatory research model, which we encourage others to consider. The implementation of this model is greatly facilitated by web-based tools and methods and participant education. Project results are long-term proactive participant involvement and the growth of a community that benefits both researchers and participants.

  7. Industry Participation in Defence Research and Development,

    Science.gov (United States)

    1983-12-01

    Research and Development: Proposals for Additional Incentives. ASTEC , 1990. K . Interaction between Industry, Higher Education and Government Laboratories...Incentives for Innovation in Australian Industry. ASTEC , 1983. P. Bibliography. Distribution Document Control Data Sheet AWA I A& I 14l2 p/O)OIP (02... ASTEC and the Senate Committee on Science and the Environment. My Department is already preparing advice for me in this regard and I shall ask them to

  8. Parents, adolescents, and consent for research participation.

    Science.gov (United States)

    Iltis, Ana S

    2013-06-01

    Decisions concerning children in the health care setting have engendered significant controversy and sparked ethics policies and statements, legal action, and guidelines regarding who ought to make decisions involving children and how such decisions ought to be made. Traditionally, parents have been the default decision-makers for children not only with regard to health care but with regard to other matters, such as religious practice and education. In recent decades, there has been a steady trend away from the view that parents are in authority over their children and toward the view that children are rights-bearers who should be granted greater authority over themselves. The mature minor doctrine refers to the decision to grant mature minors the authority to make decisions traditionally reserved for their parents. This essay (1) documents the trend towards expanding the understanding of some minors as "mature" and hence as having the right and authority to give informed consent, (2) examines the reasons for which some commentators have a special interest in expanding the mature minor doctrine to the research setting and allowing minors to enroll in research without parental permission, and (3) defends the view that the mature minor doctrine, regardless of its application to clinical health care decisions, ought to be set aside in the research setting in favor of greater parental involvement.

  9. Environmental assessment of nuclear projects in Canada - process, participation, lessons learned

    International Nuclear Information System (INIS)

    Underdown, G.A.; Brown, P.A.; Morrison, R.W.

    1995-01-01

    This paper documents public participation in decision-making for five cases of nuclear-based projects in Canada. Two cases involve the application of the Federal Environmental Assessment and Review Process (EARP), a formal, non-judicial process for public involvement in projects with a potential environmental impact. It is being applied to the development of new Uranium mines and the disposal of used nuclear fuels. The siting of radioactive waste facilities, generally unwanted by the communities, presents many difficult challenges which needs to be addressed before a project goes through the EARP process. An open, consultative, community-based approach to decision-making about siting is being applied in the three cases: Port Hope, Scarborough and Surrey. A number of lessons have been learned, the most important that there is a need to establish an acceptable process that includes 'getting the science right' on a project before attempting to find a site. The EARP, in most cases, provides a good mechanism for the sharing of information about a potential between the proponents and the public as long as there are no major unresolved contentious issues such as the unwanted siting of a waste facility in a particular community. 19 refs

  10. Public and Biobank Participant Attitudes toward Genetic Research Participation and Data Sharing

    OpenAIRE

    Lemke, A.A.; Wolf, W.A.; Hebert-Beirne, J.; Smith, M.E.

    2010-01-01

    Research assessing attitudes toward consent processes for high-throughput genomic-wide technologies and widespread sharing of data is limited. In order to develop a better understanding of stakeholder views toward these issues, this cross-sectional study assessed public and biorepository participant attitudes toward research participation and sharing of genetic research data. Forty-nine individuals participated in 6 focus groups; 28 in 3 public focus groups and 21 in 3 NUgene biorepository pa...

  11. Applying Equity Theory to Students' Perceptions of Research Participation Requirements

    Science.gov (United States)

    Miles, Shannon R.; Cromer, Lisa DeMarni; Narayan, Anupama

    2015-01-01

    Human subject pools have been a valuable resource to universities conducting research with student participants. However, the costs and benefits to student participants must be carefully weighed by students, researchers, and institutional review board administrators in order to avoid coercion. Participant perceptions are pivotal in deciding…

  12. AECL's underground research laboratory: technical achievements and lessons learned

    International Nuclear Information System (INIS)

    Ohta, M.M.; Chandler, N.A.

    1997-03-01

    During the development of the research program for the Canadian Nuclear Fuel Waste Management Program in the 1970's, the need for an underground facility was recognized. AECL constructed an Underground Research Laboratory (URL) for large-scale testing and in situ engineering and performance-assessment-related experiments on key aspects of deep geological disposal in a representative geological environment. Ale URL is a unique geotechnical research and development facility because it was constructed in a previously undisturbed portion of a granitic pluton that was well characterized before construction began, and because most of the shaft and experimental areas are below the water table. The specific areas of research, development and demonstration include surface and underground characterization; groundwater and solute transport; in situ rock stress conditions; temperature and time-dependent deformation and failure characteristics of rock; excavation techniques to minimize damage to surrounding rock and to ensure safe working conditions; and the performance of seals and backfills. This report traces the evolution of the URL and summarizes the technical achievements and lessons learned during its siting, design and construction, and operating phases over the last 18 years. (author)

  13. Stakeholder participation in adaption to climate change - Lessons and experience from Germany

    Energy Technology Data Exchange (ETDEWEB)

    Rotter, Maja; Hoffmann, Esther; Hirschfeld, Jesko; Schroeder, Andre; Mohaupt, Fanziska; Schaefer, Laura [Institut fuer Oekologische Wirtschaftsforschung (IOEW) gGmbH, Berlin (Germany)

    2012-08-15

    Openness and cooperation is one major principle of the German Adaptation Strategy; the development and implementation of adaptation policies is hence accompanied by broad and diversified stakeholder participation processes. Mainly three German ministries have initiated and supported stakeholder participation: the Federal Ministry for the Environment that has the lead in developing adaptation policies, the Federal Ministry for Education and Research through funding two research programs on adaptation, and the Federal Ministry of Transport, Building and Urban Development through funding regional model projects. A review of these stakeholder integration processes shows that different degrees of participation were realised (communication, consultation, co-production and co-decision) and that both science-based and policy-based approaches were pursued. While science-based approaches aim at improving research results, policy-based approaches target at influencing political decision-making. A broad variety of actors have been involved and almost all 15 sectors mentioned in the German Adaptation Strategy have been covered. While topics such as agriculture or water have been broadly addressed, economic issues have been touched only by a minority of events. Researchers and representatives from administration have participated in almost all events whereas policy-makers, companies and civil society organizations were less represented. The report concludes with recommendations for planning and conducting stakeholder participation processes and suggests suitable designs depending on the pursued objectives.

  14. Public and biobank participant attitudes toward genetic research participation and data sharing.

    Science.gov (United States)

    Lemke, A A; Wolf, W A; Hebert-Beirne, J; Smith, M E

    2010-01-01

    Research assessing attitudes toward consent processes for high-throughput genomic-wide technologies and widespread sharing of data is limited. In order to develop a better understanding of stakeholder views toward these issues, this cross-sectional study assessed public and biorepository participant attitudes toward research participation and sharing of genetic research data. Forty-nine individuals participated in 6 focus groups; 28 in 3 public focus groups and 21 in 3 NUgene biorepository participant focus groups. In the public focus groups, 75% of participants were women, 75% had some college education or more, 46% were African-American and 29% were Hispanic. In the NUgene focus groups, 67% of participants were women, 95% had some college education or more, and the majority (76%) of participants was Caucasian. Five major themes were identified in the focus group data: (a) a wide spectrum of understanding of genetic research; (b) pros and cons of participation in genetic research; (c) influence of credibility and trust of the research institution; (d) concerns about sharing genetic research data and need for transparency in the Policy for Sharing of Data in National Institutes of Health-Supported or Conducted Genome-Wide Association Studies; (e) a need for more information and education about genetic research. In order to increase public understanding and address potential concerns about genetic research, future efforts should be aimed at involving the public in genetic research policy development and in identifying or developing appropriate educational strategies to meet the public's needs.

  15. An Action Research Study: Using Classroom Guidance Lessons to Teach Middle School Students about Sexual Harassment

    Science.gov (United States)

    Bates, Rebecca C.

    2006-01-01

    This article describes a three-part classroom guidance lesson that teaches middle school students the definition of sexual harassment, the difference between flirting and sexual harassment, and the harmful effects of sexual harassment. An action research study evaluated the effectiveness of the lessons in decreasing referrals for sexual harassment…

  16. Lesson play in mathematics education a tool for research and professional development

    CERN Document Server

    Zazkis, Rina; Liljedahl, Peter

    2015-01-01

    This book applies years of experience in the use of lesson play to a variety of situations involving mathematics thinking and learning. Covers lesson play in pre-service teacher education, and discusses its potential for both researchers and teacher educators.

  17. Courts, legislators and human embryo research: lessons from Ireland.

    Science.gov (United States)

    Binchy, William

    2011-01-01

    When it comes to the matter of human embryo research law plays a crucial role in its development by helping to set the boundaries of what may be done, the sanctions for acting outside those boundaries and the rights and responsibilities of key parties. Nevertheless, the philosophical challenges raised by human embryo research, even with the best will of all concerned, may prove too great for satisfactory resolution through the legal process. Taking as its focus the position of Ireland, this paper explores the distinctive constitutional approach taken on this issue and addresses the difficulty of translating sound philosophy into judicial decrees and the difficulty of establishing expert commissions to make law reform proposals on matters of profound normative controversy. It concludes that the Irish experience does have useful lessons for those in other countries who are concerned with the legal approach to research on human embryos and points to the desirability of a diversity of normative positions in order to enrich the quality of the analysis so as to encourage more informed debate in society.

  18. Participation in HIV research: the importance of clinic contact factors.

    Science.gov (United States)

    Worthington, Catherine A; Gill, M John

    2008-08-01

    Recruiting minority populations living with HIV to many types of clinic-based HIV research is a concern. This study examined an expanded range of predictors of HIV research participation (clinic contact, clinical, and personal characteristics) to investigate observed ethnocultural differences in HIV research participation. Research participation was defined as participation in any of diagnostic, pathogenesis, drug trial or survey research. Logistic regression modeling was used to predict research participation of 657 eligible patients (93% of the patient population) who began care between January 1997 and the end of September 2003 at a regional outpatient HIV care program in Calgary, Canada. Approximately one third (32%) were non-white, including 18% Aboriginal, 9% black, 4% Asian, and 1% Hispanic individuals. Twenty-nine percent (187/657) of the patients participated in at least one study of any kind. Multivariate analysis indicated that the strongest predictors of any research participation (including diagnostic, pathogenesis, drug trial, or survey studies) are clinical (including nadir CD4 count [odds ratio {OR} = 0.132, p percentage of appointments kept [OR = 1.022, p service use shown by these groups that may influence research participation. To attract under researched populations, attention should shift from the "who" of research participation to the "how" of clinical interactions.

  19. Reactions to Participating in Dating Violence Research: Are Our Questions Distressing Participants?

    Science.gov (United States)

    Shorey, Ryan C.; Cornelius, Tara L.; Bell, Kathryn M.

    2011-01-01

    In recent years, there has been increased research focus on dating violence, producing important information for reducing these violent relationships. Yet Institutional Review Boards (IRBs) are often hesitant to approve research on dating violence, citing emotional distress of participants as a possible risk of participation. However, no known…

  20. Older adolescents' views regarding participation in Facebook research.

    Science.gov (United States)

    Moreno, Megan A; Grant, Alison; Kacvinsky, Lauren; Moreno, Peter; Fleming, Michael

    2012-11-01

    Facebook continues to grow in popularity among adolescents as well as adolescent researchers. Guidance on conducting research using Facebook with appropriate attention to privacy and ethics is scarce. To inform such research efforts, the purpose of this study was to determine older adolescents' responses after learning that they were participants in a research study that involved identification of participants using Facebook. Public Facebook profiles of older adolescents aged 18-19 years from a large state university were examined. Profile owners were then interviewed. During the interview, participants were informed that they were identified by examining publicly available Facebook profiles. Participants were asked to discuss their views on this research method. A total of 132 participants completed the interview (70% response rate); the average age was 18.4 years (SD = .5); and our sample included 64 male participants (48.5%). Participant responses included endorsement (19.7%), fine (36.4%), neutral (28.8%), uneasy (9.1%), and concerned (6.1%). Among participants who were uneasy or concerned, the majority voiced confusion regarding their current profile security settings (p = .00). The majority of adolescent participants viewed the use of Facebook for research positively. These findings are consistent with the approach taken by many U.S. courts. Researchers may consider these findings when developing research protocols involving Facebook. Copyright © 2012 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

  1. Advancing public participation in scientific research: A framework for leveraging public participation in environmental health and emergency response research

    Science.gov (United States)

    This research paper uses case analysis methods to understand why participants engage in this innovative approach public participation in scientific research, and what they hope that will mean for their community. The research questions that guide this analysis are: 1) what factor...

  2. ParticipACTION: Overview and introduction of baseline research on the "new" ParticipACTION

    Directory of Open Access Journals (Sweden)

    Craig Cora L

    2009-12-01

    Full Text Available Abstract Background This paper provides a brief overview of the Canadian physical activity communications and social marketing organization "ParticipACTION"; introduces the "new" ParticipACTION; describes the research process leading to the collection of baseline data on the new ParticipACTION; and outlines the accompanying series of papers in the supplement presenting the detailed baseline data. Methods Information on ParticipACTION was gathered from close personal involvement with the organization, from interviews and meetings with key leaders of the organization, from published literature and from ParticipACTION archives. In 2001, after nearly 30 years of operation, ParticipACTION ceased operations because of inadequate funding. In February 2007 the organization was officially resurrected and the launch of the first mass media campaign of the "new" ParticipACTION occurred in October 2007. The six-year absence of ParticipACTION, or any equivalent substitute, provided a unique opportunity to examine the impact of a national physical activity social marketing organization on important individual and organizational level indicators of success. A rapid response research team was established in January 2007 to exploit this natural intervention research opportunity. Results The research team was successful in obtaining funding through the new Canadian Institutes of Health Research Intervention Research (Healthy Living and Chronic Disease Prevention Funding Program. Data were collected on individuals and organizations prior to the complete implementation of the first mass media campaign of the new ParticipACTION. Conclusion Rapid response research and funding mechanisms facilitated the collection of baseline information on the new ParticipACTION. These data will allow for comprehensive assessments of future initiatives of ParticipACTION.

  3. Strategies for recruiting South Asian women to cancer screening research and the lessons learnt.

    Science.gov (United States)

    Chan, Dorothy N S; So, Winnie K W

    2016-11-01

    The aim of this study was to describe and discuss the recruitment strategies used in a research study of cervical cancer screening among South Asian women, the challenges encountered and the lessons learnt from the experience. Ethnic minority populations face different barriers to participating in research studies. Strategies have been developed to recruit this population to health-related research in Western countries, but there is little information about such research in the Asian region. Discussion paper. The discussion is based on our previous experience. The source of this experience is the recruitment strategies used, their results and the challenges encountered during the process. Culturally, relevant strategies and maintaining good relationships with stakeholders improved participant recruitment. Familiarity with South Asians' traditional calendar - when cultural and religious festivals are held every year - would aid the setting up of appropriate schedules for participant recruitment, either before or after the periods when they cannot be reached, such as Ramadan. South Asian women are often busy with childcare and housework. This is their major responsibility in the family and any failure to fulfil such duties is a source of stress and may foster feelings of guilt. A better understanding of their daily routines is therefore important. Such information enables the establishment of daily meeting schedules to increase the success rate of recruitment. Recruitment is a tedious process, but appropriate planning and taking account of cultural and religious practices and daily schedules will help to improve its rate of success. © 2016 John Wiley & Sons Ltd.

  4. Older adolescents’ views regarding participation in Facebook research

    Science.gov (United States)

    Moreno, Megan A; Grant, Alison; Kacvinsky, Lauren; Moreno, Peter; Fleming, Michael

    2012-01-01

    Purpose Facebook continues to grow in popularity among adolescents as well as adolescent researchers. Guidance on conducting this research with appropriate attention to privacy and ethics is scarce. To inform such research efforts, the purpose of this study was to determine older adolescents’ responses after learning that they were participants in a research study that involved identification of participants using Facebook. Methods Public Facebook profiles of older adolescents age 18 to 19 years from a large state university were examined. Profile owners were then interviewed. During the interview participants were informed that they were identified by examining publicly available Facebook profiles. Participants were asked to discuss their views on this research method. Results A total of 132 participants completed the interview (70% response rate), the average age was 18.4 years (SD=0.5) and our sample included 64 males (48.5%). Participant responses included: endorsement (19.7%), fine (36.4%), neutral (28.8%), uneasy (9.1%) and concerned (6.1%). Among participants who were uneasy or concerned, the majority voiced confusion regarding their current profile security settings (p=0.00). Conclusion The majority of adolescent participants viewed the use of Facebook for research positively. These findings are consistent with the approach taken by many US courts. Researchers may consider these findings when developing research protocols involving Facebook. PMID:23084164

  5. Encouraging Volunteer Participation in Health Research: The Role ...

    African Journals Online (AJOL)

    Health research mainly relies on volunteers to generate data. Volunteer participants not only help provide necessary information to solve problems but also contribute to free participation which in turn helps the research wheel to continue. People mainly contribute to different nonprofit organizations by giving money for ...

  6. Emotion displays and participation in a research workshop

    DEFF Research Database (Denmark)

    Steensig, Jakob

    2013-01-01

    . The researchers were supposed to make observations and, simultaneously, build the same structure with the toys as they saw on the video. Research in the field of participatory innovation has suggested that the use of objects may facilitate emotional reactions and that these may enhance participation...... emotions and surprise, in order to see how this affects participation. The analyses confirm that objects provoke emotional reactions, but that this does not necessarily lead to enhanced participation or joint sense making....

  7. Sports genetics moving forward: lessons learned from medical research.

    Science.gov (United States)

    Mattsson, C Mikael; Wheeler, Matthew T; Waggott, Daryl; Caleshu, Colleen; Ashley, Euan A

    2016-03-01

    Sports genetics can take advantage of lessons learned from human disease genetics. By righting past mistakes and increasing scientific rigor, we can magnify the breadth and depth of knowledge in the field. We present an outline of challenges facing sports genetics in the light of experiences from medical research. Sports performance is complex, resulting from a combination of a wide variety of different traits and attributes. Improving sports genetics will foremost require analyses based on detailed phenotyping. To find widely valid, reproducible common variants associated with athletic phenotypes, study sample sizes must be dramatically increased. One paradox is that in order to confirm relevance, replications in specific populations must be undertaken. Family studies of athletes may facilitate the discovery of rare variants with large effects on athletic phenotypes. The complexity of the human genome, combined with the complexity of athletic phenotypes, will require additional metadata and biological validation to identify a comprehensive set of genes involved. Analysis of personal genetic and multiomic profiles contribute to our conceptualization of precision medicine; the same will be the case in precision sports science. In the refinement of sports genetics it is essential to evaluate similarities and differences between sexes and among ethnicities. Sports genetics to date have been hampered by small sample sizes and biased methodology, which can lead to erroneous associations and overestimation of effect sizes. Consequently, currently available genetic tests based on these inherently limited data cannot predict athletic performance with any accuracy. Copyright © 2016 the American Physiological Society.

  8. Motivational factors for participation in biomedical research: evidence from a qualitative study of biomedical research participation in Blantyre District, Malawi.

    Science.gov (United States)

    Mfutso-Bengo, Joseph; Manda-Taylor, Lucinda; Masiye, Francis

    2015-02-01

    Obtaining effective informed consent from research participants is a prerequisite to the conduct of an ethically sound research. Yet it is believed that obtaining quality informed consent is generally difficult in settings with low socioeconomic status. This is so because of the alleged undue inducements and therapeutic misconception among participants. However, there is a dearth of data on factors that motivate research participants to take part in research. Hence, this study was aimed at filling this gap in the Malawian context. We conducted 18 focus group discussions with community members in urban and rural communities of Blantyre in Malawi. Most participants reported that they accepted the invitation to participate in research because of better quality treatment during study also known as ancillary care, monetary and material incentives given to participants, and thorough medical diagnosis. © The Author(s) 2014.

  9. Communication of Biobanks' Research Results : What Do (Potential) Participants Want?

    NARCIS (Netherlands)

    Meulenkamp, Tineke M.; Gevers, Sjef K.; Bovenberg, Jasper A.; Koppelman, Gerard H.; Vlieg, Astrid van Hylckama; Smets, Ellen M. A.

    2010-01-01

    The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of

  10. Communication of Biobanks' Research Results: What Do (Potential) Participants Want?

    NARCIS (Netherlands)

    Meulenkamp, Tineke M.; Gevers, Sjef K.; Bovenberg, Jasper A.; Koppelman, Gerard H.; van Hylckama Vlieg, Astrid; Smets, Ellen M. A.

    2010-01-01

    The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of

  11. Communication of biobanks’ research results: what do (potential) participants want?

    NARCIS (Netherlands)

    Meulenkamp, T.M.; Gevers, S.K.; Bovenberg, J.A.; Koppelman, G.H.; Hylckama Vlieg, A. van; Smets, E.M.A.

    2010-01-01

    The aim of this study was to investigate (potential) research participants' (a) information preferences with regard to receiving biobanks' genetic research results, and (b) attitudes towards the duties of researchers to communicate research results. A total group of 1,678 was analyzed, consisting of

  12. Genomic research and wide data sharing: views of prospective participants.

    Science.gov (United States)

    Trinidad, Susan Brown; Fullerton, Stephanie M; Bares, Julie M; Jarvik, Gail P; Larson, Eric B; Burke, Wylie

    2010-08-01

    Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies and repository-based research. Focus group sessions with (1) current research participants, (2) surrogate decision-makers, and (3) three age-defined cohorts (18-34 years, 35-50, >50). Participants expressed a variety of opinions about the acceptability of wide sharing of genetic and phenotypic information for research purposes through large, publicly accessible data repositories. Most believed that making de-identified study data available to the research community is a social good that should be pursued. Privacy and confidentiality concerns were common, although they would not necessarily preclude participation. Many participants voiced reservations about sharing data with for-profit organizations. Trust is central in participants' views regarding data sharing. Further research is needed to develop governance models that enact the values of stewardship.

  13. Strategies for Broadening Participation in the Geosciences: Lessons Learned From the UCAR-SOARSr Program

    Science.gov (United States)

    Pandya, R. E.

    2004-12-01

    Broadening participation in the geosciences will advance our research, enhance our education and training, and improve our ability to meet societal needs. By attracting more diverse students, we will be better postioned to provide all our students the increasingly necessary and relevant experience of working in diverse teams. Because some traditionally underrepresented groups, particularly Latinos & Hispanics, are growing much faster than the population as a whole, broader participation will enlarge the pool of talented individuals contributing to the next generation of research. Finally the geosciences will be more effective and credible when the diversity of our nation is reflected in our workforce, especially as civic discourse includes more and more complex decisions about society's interactions with the Earth and its resources. The Significant Opportunities in Atmospheric Research and Science (SOARS) seeks to broaden participation in geosciences by helping undergraduate students successfully transition to graduate programs in the atmospheric and related sciences. SOARS combines multiple research experiences, multifaceted mentoring, an encouraging community, and financial support to help students enter and succeed in graduate school. A central feature of the SOARS program is a ten-week summer immersion program in which protégés (SOARS participants) conduct scientific research at the National Center for Atmospheric Research (NCAR) or at laboratories of SOARS sponsors. During this summer research experience, SOARS protégés are supported by up to four mentors: a science research mentor, a writing mentor, a community mentor, and a peer mentor. SOARS protégés collaborate with their mentors to perform original research, prepare scientific papers, and present their research at a colloquium. SOARS also provides extensive leadership and communication training; support for conference presentations and for graduate school; and a strong scholarly community that

  14. Retention of minority participants in clinical research studies.

    Science.gov (United States)

    Keller, Colleen S; Gonzales, Adelita; Fleuriet, K Jill

    2005-04-01

    Recruitment of minority participants for clinical research studies has been the topic of several analytical works. Yet retention of participants, most notably minority and underserved populations, is less reported and understood, even though these populations have elevated health risks. This article describes two related, intervention-based formative research projects in which researchers used treatment theory to address issues of recruitment and retention of minority women participants in an exercise program to reduce obesity. Treatment theory incorporates a model of health promotion that allows investigators to identify and control sources of extraneous variables. The authors' research demonstrates that treatment theory can improve retention of minority women participants by considering critical inputs, mediating processes, and substantive participant characteristics in intervention design.

  15. Research participation registers can increase opportunities for patients and the public to participate in health services research.

    Science.gov (United States)

    Leach, Verity; Redwood, Sabi; Lasseter, Gemma; Walther, Axel; Reid, Colette; Blazeby, Jane; Martin, Richard; Donovan, Jenny

    2016-07-01

    Members of the public and patients repeatedly indicate their willingness to take part in research, but current United Kingdom research governance involves complex rules about gaining consent. Research participation registers that seek consent from participants to be approached about future studies have several potential benefits, including: increased research participation across clinical and healthy populations; simplified recruitment to health care research; support for people's autonomy in decision making; and improved efficiency and generalizability of research. These potential benefits have to be balanced against ethical and governance considerations. With appropriate processes in place, seeking prospective consent from patients and members of the public to be approached about future studies could potentially increase public participation in health research without compromising informed consent and other ethical principles. © The Author(s) 2016.

  16. Using American sign language interpreters to facilitate research among deaf adults: lessons learned.

    Science.gov (United States)

    Sheppard, Kate

    2011-04-01

    Health care providers commonly discuss depressive symptoms with clients, enabling earlier intervention. Such discussions rarely occur between providers and Deaf clients. Most culturally Deaf adults experience early-onset hearing loss, self-identify as part of a unique culture, and communicate in the visual language of American Sign Language (ASL). Communication barriers abound, and depression screening instruments may be unreliable. To train and use ASL interpreters for a qualitative study describing depressive symptoms among Deaf adults. Training included research versus community interpreting. During data collection, interpreters translated to and from voiced English and ASL. Training eliminated potential problems during data collection. Unexpected issues included participants asking for "my interpreter" and worrying about confidentiality or friendship in a small community. Lessons learned included the value of careful training of interpreters prior to initiating data collection, including resolution of possible role conflicts and ensuring conceptual equivalence in real-time interpreting.

  17. Research-design model for professional development of teachers: Designing lessons with physics education research

    Science.gov (United States)

    Eylon, Bat-Sheva; Bagno, Esther

    2006-12-01

    How can one increase the awareness of teachers to the existence and importance of knowledge gained through physics education research (PER) and provide them with capabilities to use it? How can one enrich teachers’ physics knowledge and the related pedagogical content knowledge of topics singled out by PER? In this paper we describe a professional development model that attempts to respond to these needs. We report on a study of the model’s implementation in a program for 22 high-school experienced physics teachers. In this program teachers (in teams of 5-6) developed during a year and a half (about 330h ), several lessons (minimodules) dealing with a topic identified as problematic by PER. The teachers employed a systematic research-based approach and used PER findings. The program consisted of three stages, each culminating with a miniconference: 1. Defining teaching and/or learning goals based on content analysis and diagnosis of students’ prior knowledge. 2. Designing the lessons using PER-based instructional strategies. 3. Performing a small-scale research study that accompanies the development process and publishing the results. We describe a case study of one of the groups and bring evidence that demonstrates how the workshop advanced: (a) Teachers’ awareness of deficiencies in their own knowledge of physics and pedagogy, and their perceptions about their students’ knowledge; (b) teachers’ knowledge of physics and physics pedagogy; (c) a systematic research-based approach to the design of lessons; (d) the formation of a community of practice; and (e) acquaintance with central findings of PER. There was a clear effect on teachers’ practice in the context of the study as indicated by the materials brought to the workshop. The teachers also reported that they continued to use the insights gained, mainly in the topics that were investigated by themselves and by their peers.

  18. Research-design model for professional development of teachers: Designing lessons with physics education research

    Directory of Open Access Journals (Sweden)

    Esther Bagno

    2006-09-01

    Full Text Available How can one increase the awareness of teachers to the existence and importance of knowledge gained through physics education research (PER and provide them with capabilities to use it? How can one enrich teachers’ physics knowledge and the related pedagogical content knowledge of topics singled out by PER? In this paper we describe a professional development model that attempts to respond to these needs. We report on a study of the model’s implementation in a program for 22 high-school experienced physics teachers. In this program teachers (in teams of 5-6 developed during a year and a half (about 330 h , several lessons (minimodules dealing with a topic identified as problematic by PER. The teachers employed a systematic research-based approach and used PER findings. The program consisted of three stages, each culminating with a miniconference: 1. Defining teaching and/or learning goals based on content analysis and diagnosis of students’ prior knowledge. 2. Designing the lessons using PER-based instructional strategies. 3. Performing a small-scale research study that accompanies the development process and publishing the results. We describe a case study of one of the groups and bring evidence that demonstrates how the workshop advanced: (a Teachers’ awareness of deficiencies in their own knowledge of physics and pedagogy, and their perceptions about their students’ knowledge; (b teachers’ knowledge of physics and physics pedagogy; (c a systematic research-based approach to the design of lessons; (d the formation of a community of practice; and (e acquaintance with central findings of PER. There was a clear effect on teachers’ practice in the context of the study as indicated by the materials brought to the workshop. The teachers also reported that they continued to use the insights gained, mainly in the topics that were investigated by themselves and by their peers.

  19. Research-design model for professional development of teachers: Designing lessons with physics education research

    Directory of Open Access Journals (Sweden)

    Bat-Sheva Eylon

    2006-09-01

    Full Text Available How can one increase the awareness of teachers to the existence and importance of knowledge gained through physics education research (PER and provide them with capabilities to use it? How can one enrich teachers’ physics knowledge and the related pedagogical content knowledge of topics singled out by PER? In this paper we describe a professional development model that attempts to respond to these needs. We report on a study of the model’s implementation in a program for 22 high-school experienced physics teachers. In this program teachers (in teams of 5-6 developed during a year and a half (about 330h, several lessons (minimodules dealing with a topic identified as problematic by PER. The teachers employed a systematic research-based approach and used PER findings. The program consisted of three stages, each culminating with a miniconference: 1. Defining teaching and/or learning goals based on content analysis and diagnosis of students’ prior knowledge. 2. Designing the lessons using PER-based instructional strategies. 3. Performing a small-scale research study that accompanies the development process and publishing the results. We describe a case study of one of the groups and bring evidence that demonstrates how the workshop advanced: (a Teachers’ awareness of deficiencies in their own knowledge of physics and pedagogy, and their perceptions about their students’ knowledge; (b teachers’ knowledge of physics and physics pedagogy; (c a systematic research-based approach to the design of lessons; (d the formation of a community of practice; and (e acquaintance with central findings of PER. There was a clear effect on teachers’ practice in the context of the study as indicated by the materials brought to the workshop. The teachers also reported that they continued to use the insights gained, mainly in the topics that were investigated by themselves and by their peers.

  20. Understanding participation by African Americans in cancer genetics research.

    Science.gov (United States)

    McDonald, Jasmine A; Barg, Frances K; Weathers, Benita; Guerra, Carmen E; Troxel, Andrea B; Domchek, Susan; Bowen, Deborah; Shea, Judy A; Halbert, Chanita Hughes

    2012-01-01

    Understanding genetic factors that contribute to racial differences in cancer outcomes may reduce racial disparities in cancer morbidity and mortality. Achieving this goal will be limited by low rates of African American participation in cancer genetics research. We conducted a qualitative study with African American adults (n = 91) to understand attitudes about participating in cancer genetics research and to identify factors that are considered when making a decision about participating in this type of research. Participants would consider the potential benefits to themselves, family members, and their community when making a decision to participate in cancer genetics research. However, concerns about exploitation, distrust of researchers, and investigators' motives were also important to participation decisions. Individuals would also consider who has access to their personal information and what would happen to these data. Side effects, logistical issues, and the potential to gain knowledge about health issues were also described as important factors in decision making. African Americans may consider a number of ethical, legal, and social issues when making a decision to participate in cancer genetics research. These issues should be addressed as part of recruitment efforts.

  1. Paternalism and utilitarianism in research with human participants.

    Science.gov (United States)

    Resnik, David B

    2015-03-01

    In this article I defend a rule utilitarian approach to paternalistic policies in research with human participants. Some rules that restrict individual autonomy can be justified on the grounds that they help to maximize the overall balance of benefits over risks in research. The consequences that should be considered when formulating policy include not only likely impacts on research participants, but also impacts on investigators, institutions, sponsors, and the scientific community. The public reaction to adverse events in research (such as significant injury to participants or death) is a crucial concern that must be taken into account when assessing the consequences of different policy options, because public backlash can lead to outcomes that have a negative impact on science, such as cuts in funding, overly restrictive regulation and oversight, and reduced willingness of individuals to participate in research. I argue that concern about the public reaction to adverse events justifies some restrictions on the risks that competent, adult volunteers can face in research that offers them no significant benefits. The paternalism defended here is not pure, because it involves restrictions on the rights of investigators in order to protect participants. It also has a mixed rationale, because individual autonomy may be restricted not only to protect participants from harm but also to protect other stakeholders. Utility is not the sole justification for paternalistic research policies, since other considerations, such as justice and respect for individual rights/autonomy, must also be taken into account.

  2. Sexuality educators: taking a stand by participating in research

    African Journals Online (AJOL)

    Sexuality educators: taking a stand by participating in research ... and Sexually Transmitted Infections (STIs) (United Nations Educational, Scientific, .... assimilates new ideas which could assist in keeping up with what learners need from.

  3. The evolution of research participant protections in South Africa

    African Journals Online (AJOL)

    The legislative basis for scientific research was first promulgated in 1945. However, there was ... for participant protections, the protections in the Bill of Rights of the SA .... human beings;. • improved methods for the provision of health services;.

  4. Evaluating a Research Training Programme for People with Intellectual Disabilities Participating in Inclusive Research: The Views of Participants.

    Science.gov (United States)

    Fullana, Judit; Pallisera, Maria; Català, Elena; Puyalto, Carolina

    2017-07-01

    This article presents the results of evaluating a research training programme aimed at developing the skills of people with intellectual disabilities to actively participate in inclusive research. The present authors opted for a responsive approach to evaluation, using a combination of interviews, questionnaires and focus groups to gather information on the views of students, trainers and members of the research team regarding how the programme progressed, the learning achieved and participants' satisfaction with the programme. The evaluation showed that most of the participants were satisfied with the programme and provided guidelines for planning contents and materials, demonstrating the usefulness of these types of programme in constructing the research group and empowering people with intellectual disabilities to participate in research. The evaluation revealed that the programme had been a positive social experience that fostered interest in lifelong learning for people with intellectual disabilities. © 2016 John Wiley & Sons Ltd.

  5. The individual teacher in lesson study collaboration

    DEFF Research Database (Denmark)

    Skott, Charlotte Krog; Møller, Hanne

    2017-01-01

    used in lesson study research. Design/methodology/approach The authors use collective case studies. By being participant observers the authors provide detailed descriptions of two selected teachers’ lived experiences of lesson study collaboration. In addition to gain first-hand insights, the authors...... in the participation of each of the two teachers during a two-year lesson study project. By comparing these shifts the authors identify significant conditions for their individual learning. Research limitations/implications Although the study is small scale, both the insights into the different ways in which teachers...... participated and the theoretical insights might be valuable for other lesson study research approaches. Practical implications This paper provides valuable insights into conditions that might influence teachers’ participation in lesson study activities, especially in cultures with little experience of lesson...

  6. Challenges of youth participation in participatory action research

    DEFF Research Database (Denmark)

    Wattar, Laila; Fanous, Sandrine; Berliner, Peter

    2012-01-01

    Paamiut Youth Voice (PYV) is a Participatory Action Research (PAR) project, exploring youth perceptions, experiences, and the promotion of well-being in Paamiut, Greenland. Active youth participation remained a key challenge in the development of the local community through the locally initiated...... community mobilisation programme Paamiut Asasara. The challenges of youth participation in PYV are investigated in order to explore the implications of youth participation in PAR projects. The discussion of challenges is based on a methodological account of experiences from the research process clarifying...

  7. Genuine participation in participant-centred research initiatives: the rhetoric and the potential reality.

    Science.gov (United States)

    Feeney, Oliver; Borry, Pascal; Felzmann, Heike; Galvagni, Lucia; Haukkala, Ari; Loi, Michele; Nordal, Salvör; Rakic, Vojin; Riso, Brígida; Sterckx, Sigrid; Vears, Danya

    2018-04-01

    The introduction of Web 2.0 technology, along with a population increasingly proficient in Information and Communications Technology (ICT), coupled with the rapid advancements in genetic testing methods, has seen an increase in the presence of participant-centred research initiatives. Such initiatives, aided by the centrality of ICT interconnections, and the ethos they propound seem to further embody the ideal of increasing the participatory nature of research, beyond what might be possible in non-ICT contexts alone. However, the majority of such research seems to actualise a much narrower definition of 'participation'-where it is merely the case that such research initiatives have increased contact with participants through ICT but are otherwise non-participatory in any important normative sense. Furthermore, the rhetoric of participant-centred initiatives tends to inflate this minimalist form of participation into something that it is not, i.e. something genuinely participatory, with greater connections with both the ICT-facilitated political contexts and the largely non-ICT participatory initiatives that have expanded in contemporary health and research contexts. In this paper, we highlight that genuine (ICT-based) 'participation' should enable a reasonable minimum threshold of participatory engagement through, at least, three central participatory elements: educative, sense of being involved and degree of control. While we agree with criticisms that, at present, genuine participation seems more rhetoric than reality, we believe that there is clear potential for a greater ICT-facilitated participatory engagement on all three participatory elements. We outline some practical steps such initiatives could take to further develop these elements and thereby their level of ICT-facilitated participatory engagement.

  8. Participants' safety versus confidentiality: A case study of HIV research.

    Science.gov (United States)

    Leyva-Moral, Juan Manuel; Feijoo-Cid, Maria

    2017-05-01

    Background When conducting qualitative research, participants usually share lots of personal and private information with the researcher. As researchers, we must preserve participants' identity and confidentiality of the data. Objective To critically analyze an ethical conflict encountered regarding confidentiality when doing qualitative research. Research design Case study. Findings and discussion one of the participants in a study aiming to explain the meaning of living with HIV verbalized his imminent intention to commit suicide because of stigma of other social problems arising from living with HIV. Given the life-threatening situation, the commitment related to not disclosing the participant's identity and/or the content of the interview had to be broken. To avoid or prevent suicide, the therapist in charge of the case was properly informed about the participant's intentions. One important question arises from this case: was it ethically appropriate to break the confidentiality commitment? Conclusion confidentiality could be broken if a life-threatening event is identified during data collection and participants must know that. This has to be clearly stated in the informed consent form.

  9. Protection of the human research participant: A structured review

    African Journals Online (AJOL)

    related or social-science research involves a human participant. This ... quantitative studies, as well as review articles, were included, to enhance ... In the study by Gremillion et al.,[7] comparison was made between .... research stakeholders, who took part in interviews and focus- .... Contact persons ... Face to face.

  10. From Research to Policy: Roma Participation through Communicative Organization

    Science.gov (United States)

    Munte, Ariadna; Serradell, Olga; Sorde, Teresa

    2011-01-01

    For centuries, Roma people's social exclusion has been reinforced through research that has legitimized stereotypes rather than helping to overcome them. This has led Roma people to refuse to participate in the kind of research that has contributed to discrimination against them. We describe how the critical communicative methodology, used in the…

  11. Interviewing Objects: Including Educational Technologies as Qualitative Research Participants

    Science.gov (United States)

    Adams, Catherine A.; Thompson, Terrie Lynn

    2011-01-01

    This article argues the importance of including significant technologies-in-use as key qualitative research participants when studying today's digitally enhanced learning environments. We gather a set of eight heuristics to assist qualitative researchers in "interviewing" technologies-in-use (or other relevant objects), drawing on concrete…

  12. Demand artifact: objectively detecting biased participants in advertising research.

    Science.gov (United States)

    Miller, Felicia; Schertzer, Susan

    2014-12-01

    Detecting and reducing the effect of biased participants continues to be an important task for researchers. However, the lack of objective measures to assess demand artifact has made it difficult to effectively address this issue. This paper reports two experiments that apply a theory-based post-experimental inquiry that can systematically identify biased participants in consumer research. The results demonstrate how easily and effectively researchers can incorporate this tool into experimental studies of all types and reduce the likelihood of systematic error.

  13. Building Participation in Large-scale Conservation: Lessons from Belize and Panama

    Directory of Open Access Journals (Sweden)

    Jesse Guite Hastings

    2015-01-01

    Full Text Available Motivated by biogeography and a desire for alignment with the funding priorities of donors, the twenty-first century has seen big international NGOs shifting towards a large-scale conservation approach. This shift has meant that even before stakeholders at the national and local scale are involved, conservation programmes often have their objectives defined and funding allocated. This paper uses the experiences of Conservation International′s Marine Management Area Science (MMAS programme in Belize and Panama to explore how to build participation at the national and local scale while working within the bounds of the current conservation paradigm. Qualitative data about MMAS was gathered through a multi-sited ethnographic research process, utilising document review, direct observation, and semi-structured interviews with 82 informants in Belize, Panama, and the United States of America. Results indicate that while a large-scale approach to conservation disadvantages early national and local stakeholder participation, this effect can be mediated through focusing engagement efforts, paying attention to context, building horizontal and vertical partnerships, and using deliberative processes that promote learning. While explicit consideration of geopolitics and local complexity alongside biogeography in the planning phase of a large-scale conservation programme is ideal, actions taken by programme managers during implementation can still have a substantial impact on conservation outcomes.

  14. Lenses and Lessons: Using three different research perspectives in early childhood education research

    Directory of Open Access Journals (Sweden)

    S. Irvine

    2015-10-01

    Full Text Available In contemporary Western research, collaboration is held in high esteem. This developing practice is challenging particularly for researchers who follow varying theoretical approaches. However although a challenging endeavour, when viewing the one data set with different lenses, there are various lessons that can be shared. A key aspect of this paper is involved researchers' different analytical perspectives in one data set to learn more about each other's research insights, rather than become instant expert in other's approaches. The interview data reported in this paper originates from a larger study researching parents' experience of using early childhood education and care (ECEC in Australia. Here we analyse and report on two shared interview excerpts and use three different research lenses for analysis; phenomenographic study, conversational analysis and cultural-historical theory. The finding of this paper demonstrates that applying different lenses provide different interpretations, including strengths, limitations and opportunities. In this paper we argue that collaborative research practices enhance our understanding of varying research approaches and the scope, quality, translation of research and the researchers' capacity are enhanced

  15. Cross-cultural perspectives on research participation and informed consent.

    Science.gov (United States)

    Barata, Paula C; Gucciardi, Enza; Ahmad, Farah; Stewart, Donna E

    2006-01-01

    This study examined Portuguese Canadian and Caribbean Canadian immigrants' perceptions of health research and informed consent procedures. Six focus groups (three in each cultural group) involving 42 participants and two individual interviews were conducted. The focus groups began with a general question about health research. This was followed by three short role-plays between the moderator and the assistant. The role-plays involved a fictional health research study in which a patient is approached for recruitment, is read a consent form, and is asked to sign. The role-plays stopped at key moments at which time focus group participants were asked questions about their understanding and their perceptions. Focus group transcripts were coded in QSR NUDIST software using open coding and then compared across cultural groups. Six overriding themes emerged: two were common in both the Portuguese and Caribbean transcripts, one emphasized the importance of trust and mistrust, and the other highlighted the need and desire for more information about health research. However, these themes were expressed somewhat differently in the two groups. In addition, there were four overriding themes that were specific to only one cultural group. In the Portuguese groups, there was an overwhelming positive regard for the research process and an emphasis on verbal as opposed to written information. The Caribbean participants qualified their participation in research studies and repeatedly raised images of invasive research.

  16. Physician participation in clinical research and trials: issues and approaches

    Directory of Open Access Journals (Sweden)

    Sami F Shaban

    2011-03-01

    Full Text Available Sayeeda Rahman1, Md Anwarul Azim Majumder1, Sami F Shaban2, Nuzhat Rahman3, Moslehuddin Ahmed4, Khalid Bin Abdulrahman5, Urban JA D’Souza61Department of Clinical Sciences, School of Life Sciences, University of Bradford, West Yorkshire, Bradford, UK; 2Department of Medical Education, Faculty of Medicine and Health Sciences, UAE University, Al-Ain, United Arab Emirates; 3Department of Nutrition Sciences, University of Alabama at Birmingham, Birmingham, AL, USA; 4Department of Community Medicine, Uttara Adhunik Medical College, Dhaka, Bangladesh; 5Department of Family Medicine and Medical Education, College of Medicine, Al-Imam University, Riyadh, Saudi Arabia; 6Department of Post Graduate Studies, School of Medicine, University Malaysia Sabah, Kota Kinabalu, Sabah, MalaysiaAbstract: The rapid development of new drugs, therapies, and devices has created a dramatic increase in the number of clinical research studies that highlights the need for greater participation in research by physicians as well as patients. Furthermore, the potential of clinical research is unlikely to be reached without greater participation of physicians in research. Physicians face a variety of barriers with regard to participation in clinical research. These barriers are system- or organization-related as well as research- and physician-related. To encourage physician participation, appropriate organizational and operational infrastructures are needed in health care institutes to support research planning and management. All physicians should receive education and training in the fundamentals of research design and methodology, which need to be incorporated into undergraduate medical education and postgraduate training curricula and then reinforced through continuing medical education. Medical schools need to analyze current practices of teaching–learning and research, and reflect upon possible changes needed to develop a ‘student-focused teaching–learning and

  17. Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting.

    Science.gov (United States)

    Ogunrin, Olubunmi; Woolfall, Kerry; Gabbay, Mark; Frith, Lucy

    2018-01-01

    As genomic research gathers momentum in sub-Saharan Africa, it has become increasingly important to understand the reasons why individuals wish to participate in this kind of medical research. Against the background of communitarianism conceived as typical of African communities, it is often suggested that individuals consent to participate on the grounds of solidarity and to further the common good. In this paper, we seek to explore this contention by presenting data from focus groups with potential research participants about what would influence their decisions to participate in genomic research. These focus groups were conducted as part of a larger qualitative study with a purposively selected group of participants from a community situated in south west Nigeria. We conducted fifteen focus group sessions comprising 50 participants organized by age and sex, namely: 1) adult (>30 years) males, 2) adult females, 3) youth (18-30 years) males, and 4) youth females. A mixed age-group was conducted to probe different views between the age groups. There was discordance and clear division between the adults and youths regarding the decision to participate in genomic research based on commitment to communal values. Adults based their decision to participate on altruism and furthering the common good while youths based their decisions on personal benefits and preferences and also took into account the views and welfare of family members and neighbours. This discordance suggests a 'generational shift' and we advance a model of 'relative solidarity' among the youths, which is different from the communal solidarity model typical of African communitarianism. Our findings suggest the need for a closer look at strategies for implementation of community engagement and informed consent in genomic research in this region, and we recommend further studies to explore this emerging trend.

  18. VVER operational safety improvements: lessons learnt from European co-operation and future research needs

    International Nuclear Information System (INIS)

    Pazdera, F.; Vasa, I.; Zd'arek, J.

    2003-01-01

    The paper summarises involvement of Nuclear Research Institute Rez (NRI) in the areas which are directly related to Reactor Operational Safety and Plant Life Management, it also gives an idea how results of the research projects can be used to enhance safety of VVER reactors. These issues are for many years subject of a wide international co-operation effort, covered by such programmes as PHARE, OECD/NEA TACIS, 5th Framework Programme. Nuclear Research Institute participated in the majority of these programmes and projects, which allowed us to evaluate benefits (especially for VVER reactors) of the projects already finalised or running, as well as to formulate so-called 'future research needs', which possibly may be pursued within 6th Framework Programme. The paper highlights the main features of some projects our Institute was and is involved in, emphasising the most important results, expectations and future needs. It also very briefly, deals with some general and particular lessons learnt within these projects and their application to VVER reactors, especially as to their safety improvement. The paper also mentions VVER-focused projects and activities, co-ordinated by the OECD, which should enable to extend multilateral contacts already existing between organisations of the EU countries to include organisations from Russia, USA, Japan and possibly some other countries

  19. Recruiting Transcultural Qualitative Research Participants: A Conceptual Model

    Directory of Open Access Journals (Sweden)

    Phyllis Eide

    2005-06-01

    Full Text Available Working with diverse populations poses many challenges to the qualitative researcher who is a member of the dominant culture. Traditional methods of recruitment and selection (such as flyers and advertisements are often unproductive, leading to missed contributions from potential participants who were not recruited and researcher frustration. In this article, the authors explore recruitment issues related to the concept of personal knowing based on experiences with Aboriginal Hawai'ian and Micronesian populations, wherein knowing and being known are crucial to successful recruitment of participants. They present a conceptual model that incorporates key concepts of knowing the other, cultural context, and trust to guide other qualitative transcultural researchers. They also describe challenges, implications, and concrete suggestions for recruitment of participants.

  20. Challenges in communicating research and research careers: lesson learned from the European Researchers' Nights at INGV

    Science.gov (United States)

    D'Addezio, Giuliana; Rubbia, Giuliana; Musacchio, Gemma; Lanza, Tiziana

    2014-05-01

    Since 2009 the Istituto Nazionale di Geofisica e Vulcanologia (INGV) participates to the European Researchers' Night, promoted by the European Commission, in the framework of Associazione Frascati Scienza (http://www.frascatiscienza.it/), with a program rich of events aimed at intriguingnand stimulating audiences of all ages about Earth Sciences, i.e., to make the general public aware on activities and roles of INGV researchers. For the September 27th Night, INGV contributed with a program in the INGV headquarters inspired by the INGV ScienzAperta Open Day held in April: guided tours, as well seminars held by researchers, exhibitions, educational games. We proposed two parallel programs: one devoted to earthquakes, including the visit to the INGV seismic surveillance room, seminars about Italian territory seismic hazard and exhibitions on Earthquakes and Volcanoes; the alternative program included the guided tour of the INGV laboratories (Aero-photogrammetry, Paleo-magnetism beside exhibition on geomagnetism, High Pressures and High Temperatures, Geochemistry, Restoration of historical instruments). In Frascati, we organized educational games, hands-on laboratories and a science theatre performance: "When the sky flashed red", as well as exhibitions at Museo Geofisico Rocca di Papa. A paper-based appreciation survey, compiled by visitors at INGV headquarter and by the scientific theatre's audiences, supplied our team with feedback, revealing some precious hints about users themselves, appreciation and margins of improvement, both in organization and in content. People of all ages and professions came. For example, a father asked specific paths for children, with even more appropriate language. A boy (aged 11) found the visit to the labs "interesting but a bit boring". It was suggested to prepare specific hand-outs for each visit, and certificates of participation for students. A girl, 9 years old, wrote that such event makes her closer to science world. The

  1. Palila Restoration: Lessons from Long-term Research

    Science.gov (United States)

    ,

    2006-01-01

    BACKGROUND The palila (Loxioides bailleui) is a member of the Hawaiian honeycreeper family of birds (Drepanidinae), which is renowned for the profusion of species - many with bizarre bills and specialized feeding habits - that radiated from a single ancestral type. Most of the 57 or so honeycreeper species are extinct, and the palila is endangered because of its high degree of dependence on the mamane tree (Sophora chrysophylla) (Figure 1) and its restricted distribution on the upper slopes of Mauna Kea (Figure 2). Three decades of research have revealed many important facts about palila, providing the foundation and impetus for conservation programs in the wild and captivity. Additionally, an ambitious public conservation campaign arose due to the land-use conflicts on Mauna Kea. Here we summarize progress in palila conservation biology and outline steps that might overcome the remaining major challenges to its recovery. We also highlight lessons learned from palila research that may help the recovery of other Hawaiian forest birds. Palila and two closely-related species on the tiny islands of Nihoa and Laysan are the last of the seed-eating honeycreeper species in the Hawaiian Islands. About a quarter of the honeycreeper species known from living and fossil specimens had finch-like bills suited mainly for eating seeds and fruits. Because of their dietary specialization, palila are vulnerable to changes in forest size and quality, as was also likely the case for extinct species of seed specialists. Palila and many other forest bird species were once distributed in dry, lowland forests. Fossil records indicate that palila also occurred in the lowlands of O`ahu and Kaua`i until human settlement of those islands. However, because lowland habitats have been highly modified by humans and because mamane occurs today primarily at high elevation, palila are the only native bird species found exclusively in dry, subalpine habitat (2000?2850 m). Similar to other feeding

  2. Strategies to address participant misrepresentation for eligibility in Web-based research.

    Science.gov (United States)

    Kramer, Jessica; Rubin, Amy; Coster, Wendy; Helmuth, Eric; Hermos, John; Rosenbloom, David; Moed, Rich; Dooley, Meghan; Kao, Ying-Chia; Liljenquist, Kendra; Brief, Deborah; Enggasser, Justin; Keane, Terence; Roy, Monica; Lachowicz, Mark

    2014-03-01

    Emerging methodological research suggests that the World Wide Web ("Web") is an appropriate venue for survey data collection, and a promising area for delivering behavioral intervention. However, the use of the Web for research raises concerns regarding sample validity, particularly when the Web is used for recruitment and enrollment. The purpose of this paper is to describe the challenges experienced in two different Web-based studies in which participant misrepresentation threatened sample validity: a survey study and an online intervention study. The lessons learned from these experiences generated three types of strategies researchers can use to reduce the likelihood of participant misrepresentation for eligibility in Web-based research. Examples of procedural/design strategies, technical/software strategies and data analytic strategies are provided along with the methodological strengths and limitations of specific strategies. The discussion includes a series of considerations to guide researchers in the selection of strategies that may be most appropriate given the aims, resources and target population of their studies. Copyright © 2014 John Wiley & Sons, Ltd.

  3. Public participation and environmental impact assessment: Purposes, implications, and lessons for public policy making

    International Nuclear Information System (INIS)

    O'Faircheallaigh, Ciaran

    2010-01-01

    In recent years the need to enhance public participation in Environmental Impact Assessment (EIA), and the efficacy of alternative mechanisms in achieving this goal, have been central themes in the EIA literature. The benefits of public participation are often taken for granted, and partly for this reason the underlying rationale for greater public participation is sometimes poorly articulated, making it more difficult to determine how to pursue it effectively. The reasons for seeking public participation are also highly diverse and not always mutually consistent. There has been limited analysis of the implications of different forms and degrees of public participation for public decision making based on EIA, and little discussion of how experience with public participation in EIA relates to debates about participation in policy making generally. This paper distinguishes various purposes for public participation in EIA, and discusses their implications for decision making. It then draws on some general models of public participation in policy making to consider how approaches to participation in EIA can be interpreted and valued, and asks what EIA experience reveals about the utility of these models. It argues that the models pay insufficient attention to the interaction that can occur between different forms of public participation; and to the fact that public participation raises issues regarding control over decision making that are not subject to resolution, but must be managed through ongoing processes of negotiation.

  4. Schools as Sites for Recruiting Participants and Implementing Research.

    Science.gov (United States)

    Bartlett, Robin; Wright, Tiffany; Olarinde, Tia; Holmes, Tara; Beamon, Emily R; Wallace, Debra

    2017-01-01

    Schools can be a valuable resource for recruitment of participants for research involving children, adolescents, and parents. Awareness of the benefits and challenges of working with schools can assist researchers in developing effective school partnerships. This article discusses the advantages of conducting research within the school system as well as the challenges that may also arise. Such challenges include developing key contacts, building relationships, logistical arrangements, and facilitating trust in the research topic and team. Suggestions for strategies to forge successful collaborative relationships with schools are provided.

  5. Ethical issues in the qualitative researcher--participant relationship.

    Science.gov (United States)

    Eide, Phyllis; Kahn, David

    2008-03-01

    Qualitative research poses ethical issues and challenges unique to the study of human beings. In developing the interpersonal relationship that is critical to qualitative research, investigator and participant engage in a dialogic process that often evokes stories and memories that are remembered and reconstituted in ways that otherwise would not occur. Ethical issues are raised when this relationship not only provides qualitative research data, but also leads to some degree of therapeutic interaction for the participant. The purpose of this article is to examine some of the controversies inherent in the researcher's dilemma when this occurs, set within the context of a nursing caring theory (Swanson), and the International Council of Nurses Code of ethics for nurses, which provides guidance on global nursing practice.

  6. Vulnerable participants in health research: methodological and ethical challenges

    DEFF Research Database (Denmark)

    Nordentoft, Helle Merete; Kappel, Nanna

    2011-01-01

    , leaving both professionals and researchers in ethical and moral dilemmas. In this article, we specifically focus on the methodological challenges of obtaining informed consent from drug users and terminally ill cancer patients in our PhD research. The question is how to illuminate the needs and problems......Ethical guidelines for conducting research are embedded in the Helsinki Declaration of 1964. We contend that these abstract and intentionally universal guidelines need to be appropriated for social and healthcare research, in which purpose and methods often deviate from medical research....... The guidelines appear to be instrumental and over-simplistic representations of the often ‘messy’ realities surrounding the research process that is often guided by relational and local negotiations of ethical solutions. Vulnerable participants, for instance, challenge both professional and research ethics...

  7. Creative Management as a Strategy for Breakthrough Innovation. Lessons from Basic Research Projects of Japanese Companies.

    Science.gov (United States)

    Lee, K. T.

    1997-01-01

    Japanese science/technology policies emphasize creative research management for strengthening breakthrough innovation. Key lessons include the following: cultivation of creative researchers, clear strategic directions, systematic teamwork and collaboration, focus on strategic industrial relevance, balance between autonomy and control, and the need…

  8. Lessons Learned from Introducing Social Media Use in Undergraduate Economics Research

    Science.gov (United States)

    O'Brien, Martin; Freund, Katarina

    2018-01-01

    The research process and associated literacy requirements are often unfamiliar and daunting obstacles for undergraduate students. The use of social media has the potential to assist research training and encourage active learning, social inclusion and student engagement. This paper documents the lessons learned from developing a blended learning…

  9. Strategies for mHealth research: lessons from 3 mobile intervention studies.

    Science.gov (United States)

    Ben-Zeev, Dror; Schueller, Stephen M; Begale, Mark; Duffecy, Jennifer; Kane, John M; Mohr, David C

    2015-03-01

    The capacity of Mobile Health (mHealth) technologies to propel healthcare forward is directly linked to the quality of mobile interventions developed through careful mHealth research. mHealth research entails several unique characteristics, including collaboration with technologists at all phases of a project, reliance on regional telecommunication infrastructure and commercial mobile service providers, and deployment and evaluation of interventions "in the wild", with participants using mobile tools in uncontrolled environments. In the current paper, we summarize the lessons our multi-institutional/multi-disciplinary team has learned conducting a range of mHealth projects using mobile phones with diverse clinical populations. First, we describe three ongoing projects that we draw from to illustrate throughout the paper. We then provide an example for multidisciplinary teamwork and conceptual mHealth intervention development that we found to be particularly useful. Finally, we discuss mHealth research challenges (i.e. evolving technology, mobile phone selection, user characteristics, the deployment environment, and mHealth system "bugs and glitches"), and provide recommendations for identifying and resolving barriers, or preventing their occurrence altogether.

  10. Shedding light on research participation effects in behaviour change trials: a qualitative study examining research participant experiences.

    Science.gov (United States)

    MacNeill, Virginia; Foley, Marian; Quirk, Alan; McCambridge, Jim

    2016-01-29

    The sequence of events in a behaviour change trial involves interactions between research participants and the trial process. Taking part in such a study has the potential to influence the behaviour of the participant, and if it does, this can engender bias in trial outcomes. Since participants' experience has received scant attention, the aim of this study is thus to generate hypotheses about which aspects of the conduct of behaviour change trials might matter most to participants, and thus have potential to alter subsequent behaviours and bias trial outcomes Twenty participants were opportunistically screened for a health compromising behaviour (unhealthy diet, lack of exercise, smoking or alcohol consumption) and recruited if eligible. Semi structured face to face interviews were conducted, after going through the usual processes involved in trial recruitment, baseline assessment and randomisation. Participants were given information on the contents of an intervention or control condition in a behaviour change trial, which was not actually implemented. Three months later they returned to reflect on these experiences and whether they had any effect on their behaviour during the intervening period. Data from the latter interview were analysed thematically using a modified grounded theory approach. The early processes of trial participation raised awareness of unhealthy behaviours, although most reported having had only fleeting intentions to change their behaviour as a result of taking part in this study, in the absence of interventions. However, careful examination of the accounts revealed evidence of subtle research participation effects, which varied according to the health behaviour, and its perceived social acceptability. Participants' relationships with the research study were viewed as somewhat important in stimulating thinking about whether and how to make lifestyle changes. These participants described no dramatic impacts attributable to taking part in

  11. Participant Action Research in Political, Psychological, and Gender Studies

    Directory of Open Access Journals (Sweden)

    Olga Lucia Obando-Salazar

    2006-09-01

    Full Text Available Qualitative methodology is used in social and intervention research because it facilitates a deeper analysis of causal factors and development of alternative solutions to social problems. Based on the findings of three studies in the field of political and gender psychology, this article focuses on Participant Action Research (PAR as a useful qualitative approach to deal with social phenomena, such as racism, violence against women, and the problem of children and youth who have been dislocated as the result of armed conflict and sheltered by the Colombian government's program for persons relocated to civil society. This article is composed of three parts. The first part offers historical and theoretical background to the Action Research (AR paradigm, its validation criteria and their meaning for the development of the Latin American rendering of Participant Action Research (PAR. The second part synthesizes trends in the AR approach in the United States and Germany, discusses feminist research and compares these to trends in PAR in Latin America. The third part is a description of Participant Action Research as an intervention method, including features, models, goals, and concepts. URN: urn:nbn:de:0114-fqs060438

  12. RUPS: Research Utilizing Problem Solving. Administrators Version. Participant Materials.

    Science.gov (United States)

    Jung, Charles; And Others

    These materials are the handouts for school administrators participating in RUPS (Research Utilizing Problem Solving) workshops. The purposes of the workshops are to develop skills for improving schools and to increase teamwork skills. The handouts correspond to the 16 subsets that make up the five-day workshop: (1) orientation; (2) identifying…

  13. Increasing global participation in genetics research through DNA barcoding.

    Science.gov (United States)

    Adamowicz, Sarah J; Steinke, Dirk

    2015-12-01

    DNA barcoding--the sequencing of short, standardized DNA regions for specimen identification and species discovery--has promised to facilitate rapid access to biodiversity knowledge by diverse users. Here, we advance our opinion that increased global participation in genetics research is beneficial, both to scientists and for science, and explore the premise that DNA barcoding can help to democratize participation in genetics research. We examine publication patterns (2003-2014) in the DNA barcoding literature and compare trends with those in the broader, related domain of genomics. While genomics is the older and much larger field, the number of nations contributing to the published literature is similar between disciplines. Meanwhile, DNA barcoding exhibits a higher pace of growth in the number of publications as well as greater evenness among nations in their proportional contribution to total authorships. This exploration revealed DNA barcoding to be a highly international discipline, with growing participation by researchers in especially biodiverse nations. We briefly consider several of the challenges that may hinder further participation in genetics research, including access to training and molecular facilities as well as policy relating to the movement of genetic resources.

  14. Infusing Participants' Voices into Grounded Theory Research: A Poetic Anthology

    Science.gov (United States)

    Kennedy, Brianna L.

    2009-01-01

    This article augments the author's grounded theory study of student and teacher interactions in alternative education classrooms by presenting poetic transcription as a way to portray the essences and experiences of the participants. The author builds on the experimental writing traditions of other researchers to embrace her own experiences as a…

  15. What can the World Health Organization learn from EU lessons in civil society engagement and participation for health?

    Science.gov (United States)

    Battams, Samantha

    2014-01-01

    This article explores challenges for and the development of civil society engagement and stakeholder representation, transparency, and accountability measures in the European Union, with a specific focus on health policy. The stance of the European Union on stakeholder participation within reform debates of the World Health Organization (WHO) is also considered, along with EU lessons for multi-stakeholders at the WHO. The European Commission has developed a number of measures for stakeholder engagement and transparency; however, the European Union has been prone to lobbying interests and has found difficulty in leading and making accountable the private sector when it comes to achieving its own health policy goals. The strong influence of corporate lobbyists on the European Union has come to light, with concerns about a lack of transparency and accountability in decision-making processes. While the WHO could learn from the European Union in terms of its strategies for stakeholder engagement, it could also heed some of the important lessons for the European Union when it comes to working with a broad range of stakeholders.

  16. Payment of research participants: current practice and policies of Irish research ethics committees.

    LENUS (Irish Health Repository)

    Roche, Eric

    2013-09-01

    Payment of research participants helps to increase recruitment for research studies, but can pose ethical dilemmas. Research ethics committees (RECs) have a centrally important role in guiding this practice, but standardisation of the ethical approval process in Ireland is lacking.

  17. Why do pregnant women participate in research? A patient participation investigation using Q-Methodology.

    Science.gov (United States)

    Meshaka, Riwa; Jeffares, Stephen; Sadrudin, Farah; Huisman, Nicole; Saravanan, Ponnusamy

    2017-04-01

    Patient participation in study design is paramount to design studies that are acceptable to patients. Despite an increase in research involving pregnant women, relatively little is known about the motivational factors that govern their decision to be involved in a clinical trial, compared to other patient groups. To better understand the viewpoints of pregnant women who take part in clinical trials. We chose to use Q-Methodology, a method of exploring the structure of opinions surrounding a topic. We developed a set of 40 statements that encompassed the reasons why pregnant women might want to take part in research and 30 research participants from the PRiDE study (an observational trial investigating the role of micronutrients in gestational diabetes) were asked to rank them in order of agreement. The finished matrices from each participant were compared and analysed to produce capturing viewpoints. About 30 women aged 19-40 involved in the PRiDE study completed the questionnaire. There were two overarching motivators that emerged: a willingness to help medical research and improve our knowledge of medical science, and having a personal connection to the disease, therefore a potential fear of being affected by it. A third, less significant viewpoint, was that of a lack of inconvenience being a motivating factor. Understanding what motivates pregnant women to decide to take part in a research study is valuable and helps researchers maximize their uptake and retention rates when designing a trial involving pregnant women. © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd.

  18. Financial disclosure and clinical research: what is important to participants?

    Science.gov (United States)

    Hutchinson, Anastasia; Rubinfeld, Abe R

    2008-08-18

    To assess what participants in company-sponsored clinical trials wish to know about financial aspects of the study. Cross-sectional questionnaire administered to 324 participants in six clinical trials conducted at the Royal Melbourne Hospital in 1999-2000 and 2006 for non-acute conditions (asthma, chronic obstructive pulmonary disease, osteoporosis, rheumatoid arthritis, diabetes and influenza vaccine efficacy). Participants' desire for information on study funding, investigators' conflicts of interest, and use of accrued funds. 259 participants (80%) completed the survey. Participants wanted to be informed about the identity of the project sponsor (148 participants; 57%), whether the investigators owned shares in the company (105; 41%) or received travel grants (83; 32%), how much funding was accrued at study completion (88; 34%), how accrued funds were used (98; 38%), and who approved their use (91; 35%). After adjusting for year of survey and level of education, younger subjects (aged informed more often than older participants of who sponsored the project (odds ratio [OR], 2.35 [95% CI, 1.21-4.55]; P=0.012), whether the investigators owned shares in the company (OR, 2.41 [95% CI, 1.27-4.60]; P=0.007) and how much funding was available for other uses (OR, 1.79 [95% CI, 0.94-3.41]; P=0.078). While most participants indicated that they would take part in clinical research again regardless of whether they received financial information, providing information on the sponsor, the investigators' financial interest in the company, whether accrual of funds is expected, and how these funds will be spent should satisfy the interests of participants in company-sponsored clinical trials.

  19. Payment of research participants: current practice and policies of Irish research ethics committees.

    Science.gov (United States)

    Roche, Eric; King, Romaine; Mohan, Helen M; Gavin, Blanaid; McNicholas, Fiona

    2013-09-01

    Payment of research participants helps to increase recruitment for research studies, but can pose ethical dilemmas. Research ethics committees (RECs) have a centrally important role in guiding this practice, but standardisation of the ethical approval process in Ireland is lacking. Our aim was to examine REC policies, experiences and concerns with respect to the payment of participants in research projects in Ireland. Postal survey of all RECs in Ireland. Response rate was 62.5% (n=50). 80% of RECs reported not to have any established policy on the payment of research subjects while 20% had refused ethics approval to studies because the investigators proposed to pay research participants. The most commonly cited concerns were the potential for inducement and undermining of voluntary consent. There is considerable variability among RECs on the payment of research participants and a lack of clear consensus guidelines on the subject. The development of standardised guidelines on the payment of research subjects may enhance recruitment of research participants.

  20. Text Linguistics in Research Papers Prepared by University Students: Teaching through Lesson Plans and Textbooks

    Directory of Open Access Journals (Sweden)

    Manuel Albarrán-Santiago

    2015-01-01

    Full Text Available This research project revolves around the properties of text linguistics under a qualitative approach.  The author analyzed drafts of a research paper by two university students as well as lesson plans and textbooks of high school Spanish Language and Literature courses and lesson plans of courses from the Licentiate degree in Education.  According to the information from the drafts, students struggle with coherence and cohesion in writing; however, they succeed in choosing the correct language for the type of writing.  Difficulties are most likely due to fact that this topic is not included in secondary education plans and is not commonly addressed in textbooks or university classes.  In conclusion, teachers should include the properties of text linguistics in their lesson plans in order to help students overcome these difficulties.

  1. Understanding stakeholder participation in research as part of sustainable development.

    Science.gov (United States)

    Bell, Simon; Morse, Stephen; Shah, Rupesh A

    2012-06-30

    Participation is often presented as a 'good' thing and a fairer way to represent views and opinions outside narrow confines of interest and expertise. However, the roots of participatory approaches within research contexts are deep and numerous twists and turns demonstrate a confused and possibly confusing morphology with significant gaps and weaknesses. In this paper 'via the medium' of the POINT (Policy Influence of Indicators) research project we trace elements of the recent history of group participation in sustainable development and the emergence of focus on four areas, most significantly how participatory methods are used. In the absence of strong evidence to contrary we suggest that the issue of how participants engage in participation remains a significant weakness for the field. In order to counter the apparent gap we suggest that a certain degree of structure and process can provide the oeuvre of participatory approaches with a higher degree of transparency in the research process and, by focus on the use of a method called Triple Task, group participatory events can be encouraged to yield greater insights into the workings of groups of all kinds. Copyright © 2012 Elsevier Ltd. All rights reserved.

  2. Shedding light on research participation effects in behaviour change trials: a qualitative study examining research participant experiences

    Directory of Open Access Journals (Sweden)

    Virginia MacNeill

    2016-01-01

    Full Text Available Abstract Background The sequence of events in a behaviour change trial involves interactions between research participants and the trial process. Taking part in such a study has the potential to influence the behaviour of the participant, and if it does, this can engender bias in trial outcomes. Since participants’ experience has received scant attention, the aim of this study is thus to generate hypotheses about which aspects of the conduct of behaviour change trials might matter most to participants, and thus have potential to alter subsequent behaviours and bias trial outcomes Methods Twenty participants were opportunistically screened for a health compromising behaviour (unhealthy diet, lack of exercise, smoking or alcohol consumption and recruited if eligible. Semi structured face to face interviews were conducted, after going through the usual processes involved in trial recruitment, baseline assessment and randomisation. Participants were given information on the contents of an intervention or control condition in a behaviour change trial, which was not actually implemented. Three months later they returned to reflect on these experiences and whether they had any effect on their behaviour during the intervening period. Data from the latter interview were analysed thematically using a modified grounded theory approach. Results The early processes of trial participation raised awareness of unhealthy behaviours, although most reported having had only fleeting intentions to change their behaviour as a result of taking part in this study, in the absence of interventions. However, careful examination of the accounts revealed evidence of subtle research participation effects, which varied according to the health behaviour, and its perceived social acceptability. Participants’ relationships with the research study were viewed as somewhat important in stimulating thinking about whether and how to make lifestyle changes. Conclusion These

  3. PROFESSIONAL PREPARATION OF INTERACTIVE MINI-LESSONS USING MULTIMEDIA PRESENTATIONS FOR TEACHERS - PARTICIPANTS OF PEDAGOGICAL MASTERY WORKSHOP BASED ON PRACTICAL SKILLS AND VALUE EXPERIENCE

    Directory of Open Access Journals (Sweden)

    Alla V. Semenova

    2015-04-01

    Full Text Available The article deals with the preparation of interactive mini-lessons using multimedia presentations for teachers – participants of the seminar based on practical skills and value experience, which is considered in the unity of intellectual and emotional-volitional personality characteristics. The article covers the theoretical, methodological and practical approaches to creating presentations using MS PowerPoint in preparing and conducting interactive lessons by teachers based on andragogy approach. The proposed approach takes into account the personal aspects of teachers - participants of the seminar, as well as presents an appropriate planning cycle. That helps turn into reality the idea of vocational training throughout life "teacher to teacher".

  4. Lessons Learned by Community Stakeholders in the Massachusetts Childhood Obesity Research Demonstration (MA-CORD) Project, 2013–2014

    Science.gov (United States)

    Ganter, Claudia; Aftosmes-Tobio, Alyssa; Chuang, Emmeline; Kwass, Jo-Ann; Land, Thomas

    2017-01-01

    Introduction Childhood obesity is a multifaceted disease that requires sustainable, multidimensional approaches that support change at the individual, community, and systems levels. The Massachusetts Childhood Obesity Research Demonstration project addressed this need by using clinical and public health evidence-based methods to prevent childhood obesity. To date, little information is known about successes and lessons learned from implementing such large-scale interventions. To address this gap, we examined perspectives of community stakeholders from various sectors on successes achieved and lessons learned during the implementation process. Methods We conducted 39 semistructured interviews with key stakeholders from 6 community sectors in 2 low-income communities from November 2013 through April 2014, during project implementation. Interviews were audio-recorded, transcribed, and analyzed by using the constant comparative method. Data were analyzed by using QSR NVivo 10. Results Successes included increased parental involvement in children’s health and education, increased connections within participating organizations and within the broader community, changes in organizational policies and environments to better support healthy living, and improvements in health behaviors in children, parents, and stakeholders. Lessons learned included the importance of obtaining administrative and leadership support, involving key stakeholders early in the program planning process, creating buffers that allow for unexpected changes, and establishing opportunities for regular communication within and across sectors. Conclusion Study findings indicate that multidisciplinary approaches support health behavior change and provide insight into key issues to consider in developing and implementing such approaches in low-income communities. PMID:28125400

  5. Arctic research in the classroom: A teacher's experiences translated into data driven lesson plans

    Science.gov (United States)

    Kendrick, E. O.; Deegan, L.

    2011-12-01

    Incorporating research into high school science classrooms can promote critical thinking skills and provide a link between students and the scientific community. Basic science concepts become more relevant to students when taught in the context of research. A vital component of incorporating current research into classroom lessons is involving high school teachers in authentic research. The National Science Foundation sponsored Research Experience for Teachers (RET) program has inspired me to bring research to my classroom, communicate the importance of research in the classroom to other teachers and create lasting connections between students and the research community. Through my experiences as an RET at Toolik Field Station in Alaska, I have created several hands-on lessons and laboratory activities that are based on current arctic research and climate change. Each lesson uses arctic research as a theme for exemplifying basic biology concepts as well as increasing awareness of current topics such as climate change. For instance, data collected on the Kuparuk River will be incorporated into classroom activities that teach concepts such as primary production, trophic levels in a food chain and nutrient cycling within an ecosystem. Students will not only understand the biological concepts but also recognize the ecological implications of the research being conducted in the arctic. By using my experience in arctic research as a template, my students will gain a deeper understanding of the scientific process. I hope to create a crucial link of information between the science community and science education in public schools.

  6. Lessons learnt from participation in international inter-comparison exercise for environmental radioactivity measurement

    International Nuclear Information System (INIS)

    Jha, S.K.; Pulhani, Vandana; Sartandel, Sangeeta

    2016-06-01

    Environmental Radioactivity Measurement Section of Health Physics Division is regularly carrying out surveillance of the radioactivity concentration in the environment. The laboratory participates in the inter-comparison exercises conducted by various international agencies for quality assurance and quality control of analytical estimations. This report summarizes the results of the analysis of radioactivity in environmental matrices of the inter-comparison exercises. The participation in inter-comparison exercises has demonstrated competence in radionuclide identification and estimations, equivalence with the results of other participating laboratories, validated adopted analytical methods, introduced traceability to measurement etc. at national and international level. (author)

  7. Participant recruitment and motivation for participation in optical technology for cervical cancer screening research trials.

    Science.gov (United States)

    Shuhatovich, Olga M; Sharman, Mathilde P; Mirabal, Yvette N; Earle, Nan R; Follen, Michele; Basen-Engquist, Karen

    2005-12-01

    In order to improve recruitment for cervical cancer screening trials, it is necessary to analyze the effectiveness of recruitment strategies used in current trials. A trial to test optical spectroscopy for the diagnosis of cervical neoplasia recruited 1000 women from the community; the trial evaluated the emerging technology against Pap smears and colposcopically directed biopsies for cervical dysplasia. We have examined women's reasons for participating as well as the effectiveness and efficiency for each recruitment strategy. Reasons for participation were identified and compared between trials. The recruitment method that resulted in the most contacts was newspaper reportorial coverage and advertising, followed by family and friends, then television news coverage. The most cost-effective method for finding eligible women who attend the research appointment is word of mouth from a family member or friend. Recommendations are given for maximizing the efficiency of recruitment for cervical cancer screening trials.

  8. Research Participants' Understanding of and Reactions to Certificates of Confidentiality.

    Science.gov (United States)

    Beskow, Laura M; Check, Devon K; Ammarell, Natalie

    2014-01-01

    Certificates of Confidentiality are intended to facilitate participation in critical public health research by protecting against forced disclosure of identifying data in legal proceedings, but little is known about the effect of Certificate descriptions in consent forms. To gain preliminary insights, we conducted qualitative interviews with 50 HIV-positive individuals in Durham, North Carolina to explore their subjective understanding of Certificate descriptions and whether their reactions differed based on receiving a standard versus simplified description. Most interviewees were neither reassured nor alarmed by Certificate information, and most said it would not influence their willingness to participate or provide truthful information. However, compared with those receiving the simplified description, more who read the standard description said it raised new concerns, that their likelihood of participating would be lower, and that they might be less forthcoming. Most interviewees said they found the Certificate description clear, but standard-group participants often found particular words and phrases confusing, while simplified-group participants more often questioned the information's substance. Valid informed consent requires comprehension and voluntariness. Our findings highlight the importance of developing consent descriptions of Certificates and other confidentiality protections that are simple and accurate. These qualitative results provide rich detail to inform a larger, quantitative study that would permit further rigorous comparisons.

  9. Facebook: an effective tool for participant retention in longitudinal research.

    Science.gov (United States)

    Mychasiuk, R; Benzies, K

    2012-09-01

    Facebook is currently one of the world's most visited websites, and home to millions of users who access their accounts on a regular basis. Owing to the website's ease of accessibility and free service, demographic characteristics of users span all domains. As such, Facebook may be a valuable tool for locating and communicating with participants in longitudinal research studies. This article outlines the benefit gained in a longitudinal follow-up study, of an intervention programme for at-risk families, through the use of Facebook as a search engine. Using Facebook as a resource, we were able to locate 19 participants that were otherwise 'lost' to follow-up, decreasing attrition in our study by 16%. Additionally, analysis indicated that hard-to-reach participants located with Facebook differed significantly on measures of receptive language and self-esteem when compared to their easier-to-locate counterparts. These results suggest that Facebook is an effective means of improving participant retention in a longitudinal intervention study and may help improve study validity by reaching participants that contribute differing results. © 2011 Blackwell Publishing Ltd.

  10. Participant observation, anthropology methodology and design anthropology research inquiry

    DEFF Research Database (Denmark)

    Gunn, Wendy; Buch Løgstrup, Louise

    2014-01-01

    of practice. They do so by combining participant observation, anthropology methodology and design anthropology research inquiry engaging with practice based explorations to understand if methods and methodologies, understood as being central to anthropological inquiry, can be taught to interaction design...... engineering students studying in an engineering faculty and engineers working in an energy company. They ask how do you generate anthropological capacities with interaction design engineering students engaged in engineering design processes and employees of an energy company setting out to reframe...... their relation with the private end user? What kind of ways can engaging within collaborative processes of designing offer opportunities for both designing and anthropological research inquiry simultaneously?...

  11. Preparation and participation of undergraduate students to inform culturally sensitive research.

    Science.gov (United States)

    Wells, Jo Nell; Cagle, Carolyn Spence

    2009-07-01

    Most student work as research assistants occurs at the graduate level of nursing education, and little is known about the role of undergraduate students as research assistants (RAs) in major research projects. Based on our desire to study Mexican American (MA) cancer caregivers, we needed bilingual and bicultural RAs to serve as data collectors with women who spoke Spanish and possessed cultural beliefs that influenced their caregiving. Following successful recruitment, orientation, and mentoring based on Bandura's social learning theory [Bandura, A., 2001. Social learning theory: an agentic perspective. Annual Review of Psychology 52, 1-26] and accepted teaching-learning principles, RAs engaged in various behaviors that facilitated study outcomes. Faculty researchers, RAs, and study participants benefitted greatly from the undergraduate student involvement in this project. This article describes successful student inclusion approaches, ongoing faculty-RA interactions, and lessons learned from the research team experience. Guidelines discussed support the potential for making the undergraduate RA role a useful and unique learning experience.

  12. Global Consultation Processes: Lessons Learned from Refugee Teacher Consultation Research in Malaysia

    Science.gov (United States)

    O'Neal, Colleen R.; Gosnell, Nicole M.; Ng, Wai Sheng; Clement, Jennifer; Ong, Edward

    2018-01-01

    The process of global consultation has received little attention despite its potential for promoting international mutual understanding with marginalized communities. This article details theory, entry, implementation, and evaluation processes for global consultation research, including lessons learned from our refugee teacher intervention. The…

  13. Power supplies and equipment for military field research: lessons from the British Service Dhaulagiri Research Expedition 2016.

    Science.gov (United States)

    Howard, Matt; Bakker-Dyos, J; Gallagher, L; O'Hara, J P; Woods, D; Mellor, A

    2018-02-01

    The British Service Dhaulagiri Research Expedition (BSDMRE) took place from 27 March to 31 May 2016. The expedition involved 129 personnel, with voluntary participation in nine different study protocols. Studies were conducted in three research camps established at 3600, 4600 and 5140 m and involved taking and storing blood samples, cardiac echocardiography and investigations involving a balance plate. Research in this remote environment requires careful planning in order to provide a robust and resilient power plan. In this paper we aim to report the rationale for the choices we made in terms of power supply, the equipment used and potential military applicability. This is a descriptive account from the expedition members involved in planning and conducting the medical research. Power calculations were used to determine estimates of requirement prior to the expedition. The primary sources used to generate power were internal combustion engine (via petrol fuelled electric generators) and solar panels. Having been generated, power was stored using lithium-ion batteries. Special consideration was given to the storage of samples taken in the field, for which electric freezers and dry shippers were used. All equipment used functioned well during the expedition, with the challenges of altitude, temperature and transport all overcome due to extensive prior planning. Power was successfully generated, stored and delivered during the BSDMRE, allowing extensive medical research to be undertaken. The challenges faced and overcome are directly applicable to delivering military medical care in austere environments, and lessons learnt can help with the planning and delivery of future operations, training exercises or expeditions. © 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.

  14. Participant Recruitment through Social Media: Lessons Learned from a Qualitative Radicalization Study Using Facebook

    Science.gov (United States)

    Sikkens, Elga; van San, Marion; Sieckelinck, Stijn; Boeije, Hennie; de Winter, Micha

    2017-01-01

    Social media are useful facilitators when recruiting hidden populations for research. In our research on youth and radicalization, we were able to find and contact young people with extreme ideals through Facebook. In this article, we discuss our experiences using Facebook as a tool for finding respondents who do not trust researchers. Facebook…

  15. School-Based Management and Citizen Participation: Lessons for Public Education from Local Educational Projects

    Science.gov (United States)

    Santizo Rodall, Claudia A.; Martin, Christopher James

    2009-01-01

    This article analyses changes that have occurred in the elementary education system in Mexico since 1992 when an administrative de-concentration process took place. This process was accompanied by legal modifications that created opportunities for social participation in public elementary schools affairs. As a result, some school communities in…

  16. Community Participation and Benefits in REDD+: A Review of Initial Outcomes and Lessons

    Directory of Open Access Journals (Sweden)

    David J. Ganz

    2013-05-01

    Full Text Available The advent of initiatives to reduce emissions from deforestation and degradation and enhance forest carbon stocks (REDD+ in developing countries has raised much concern regarding impacts on local communities. To inform this debate, we analyze the initial outcomes of those REDD+ projects that systematically report on their socio-economic dimensions. To categorize and compare projects, we develop a participation and benefits framework that considers REDD+’s effects on local populations’ opportunities (jobs, income, security (of tenure and ecosystem services, and empowerment (participation in land use and development decisions. We find material benefits, in terms of jobs and income, to be, thus far, modest. On the other hand, we find that many projects are helping populations gain tenure rights. A majority of projects are obtaining local populations’ free, prior, and informed consent (FPIC. However, for those projects interacting with multiple populations, extent of participation and effects on forest access are often uneven. Our participation and benefits framework can be a useful tool for identifying the multi-faceted socio-economic impacts of REDD+, which are realized under different timescales. The framework and initial trends reported here can be used to build hypotheses for future REDD+ impact evaluations and contribute to evolving theories of incentive-based environmental policy.

  17. Business Participation in Welfare-to-Work: Lessons from the United States.

    Science.gov (United States)

    Mills, Jack; Kazis, Richard

    Case studies of 19 U.S. companies involved in welfare-to-work programs found that political and economic factors have accelerated the rate at which employers are hiring welfare recipients. Although participation in welfare-to-work programs is dominated by larger firms in a few industries (such as service and retail sectors), there is potential for…

  18. Worldwide Research, Worldwide Participation: Web-Based Test Logger

    Science.gov (United States)

    Clark, David A.

    1998-01-01

    Thanks to the World Wide Web, a new paradigm has been born. ESCORT (steady state data system) facilities can now be configured to use a Web-based test logger, enabling worldwide participation in tests. NASA Lewis Research Center's new Web-based test logger for ESCORT automatically writes selected test and facility parameters to a browser and allows researchers to insert comments. All data can be viewed in real time via Internet connections, so anyone with a Web browser and the correct URL (universal resource locator, or Web address) can interactively participate. As the test proceeds and ESCORT data are taken, Web browsers connected to the logger are updated automatically. The use of this logger has demonstrated several benefits. First, researchers are free from manual data entry and are able to focus more on the tests. Second, research logs can be printed in report format immediately after (or during) a test. And finally, all test information is readily available to an international public.

  19. Sense and readability: participant information sheets for research studies.

    Science.gov (United States)

    Ennis, Liam; Wykes, Til

    2016-02-01

    Informed consent in research is partly achieved through the use of information sheets. There is a perception however that these information sheets are long and complex. The recommended reading level for patient information is grade 6, or 11-12 years old. To investigate whether the readability of participant information sheets has changed over time, whether particular study characteristics are related to poorer readability and whether readability and other study characteristics are related to successful study recruitment. Method: We obtained 522 information sheets from the UK National Institute for Health Research Clinical Research Network: Mental Health portfolio database and study principal investigators. Readability was assessed with the Flesch reading index and the Grade level test. Information sheets increased in length over the study period. The mean grade level across all information sheets was 9.8, or 15-16 years old. A high level of patient involvement was associated with more recruitment success and studies involving pharmaceutical or device interventions were the least successful. The complexity of information sheets had little bearing on successful recruitment. Information sheets are far more complex than the recommended reading level of grade 6 for patient information. The disparity may be exacerbated by an increasing focus on legal content. Researchers would benefit from clear guidance from ethics committees on writing succinctly and accessibly and how to balance the competing legal issues with the ability of participants to understand what a study entails. © The Royal College of Psychiatrists 2016.

  20. Research lessons from implementing a national nursing workforce study.

    Science.gov (United States)

    Brzostek, T; Brzyski, P; Kózka, M; Squires, A; Przewoźniak, L; Cisek, M; Gajda, K; Gabryś, T; Ogarek, M

    2015-09-01

    National nursing workforce studies are important for evidence-based policymaking to improve nursing human resources globally. Survey instrument translation and contextual adaptation along with level of experience of the research team are key factors that will influence study implementation and results in countries new to health workforce studies. This study's aim was to describe the pre-data collection instrument adaptation challenges when designing the first national nursing workforce study in Poland while participating in the Nurse Forecasting: Human Resources Planning in Nursing project. A descriptive analysis of the pre-data collection phase of the study. Instrument adaptation was conducted through a two-phase content validity indexing process and pilot testing from 2009 to September 2010 in preparation for primary study implementation in December 2010. Means of both content validation phases were compared with pilot study results to assess for significant patterns in the data. The initial review demonstrated that the instrument had poor level of cross-cultural relevance and multiple translation issues. After revising the translation and re-evaluating using the same process, instrument scores improved significantly. Pilot study results showed floor and ceiling effects on relevance score correlations in each phase of the study. The cross-cultural adaptation process was developed specifically for this study and is, therefore, new. It may require additional replication to further enhance the method. The approach used by the Polish team helped identify potential problems early in the study. The critical step improved the rigour of the results and improved comparability for between countries analyses, conserving both money and resources. This approach is advised for cross-cultural adaptation of instruments to be used in national nursing workforce studies. Countries seeking to conduct national nursing workforce surveys to improve nursing human resources policies may

  1. Participating in and delivering the ATEAM trial (Alexander technique lessons, exercise, and massage) interventions for chronic back pain: A qualitative study of professional perspectives.

    Science.gov (United States)

    Beattie, Angela; Shaw, Alison; Yardley, Lucy; Little, Paul; Sharp, Debbie

    2010-01-01

    To outline professionals' experiences of participation, perceived benefits and acceptability of the interventions delivered in the ATEAM trial (Alexander technique lessons, exercise, and massage), for patients with chronic or recurrent back pain. Qualitative study using in-depth interviews was conducted with a purposeful sample of twenty professionals (general practitioners (GPs), nurses, Alexander technique teachers, and massage therapists). Data were recorded, transcribed, and analysed thematically using the constant comparison method. Evidence of effectiveness GPs wanted an evidence base for the interventions, whilst nurses, Alexander technique teachers and massage therapists perceived patient reports of benefit as evidence. Professionals' perception of the acceptability of the intervention: professional perspectives differed, with GPs and nurses viewing the structured nature of exercise prescription and Alexander technique lessons as more beneficial and acceptable than massage in alleviating patients' back pain. Economic cost: the cost to patients pursuing Alexander technique lessons and massage was perceived to be a barrier outside the trial. Inter-professional communication: there was little communication between the professionals groups within the trial. Valuable insights have been gained into the perceived benefits and acceptability of exercise, Alexander technique lessons and massage as interventions for chronic back pain. Lessons in the Alexander technique with or without exercise, was perceived as more beneficial and acceptable than massage by professionals who participated and delivered the ATEAM trial interventions. Copyright 2010 Elsevier Ltd. All rights reserved.

  2. Participant Recruitment through Social Media : Lessons Learned from a Qualitative Radicalization Study Using Facebook

    NARCIS (Netherlands)

    Sikkens, E.M.; van San, M.R.P.J.R.S.; Sieckelinck, S.M.A.; Boeije, H.R.; de Winter, M.

    2017-01-01

    Social media are useful facilitators when recruiting hidden populations for research. In our research on youth and radicalization, we were able to find and contact young people with extreme ideals through Facebook. In this article, we discuss our experiences using Facebook as a tool for finding

  3. Participant recruitment through social media: lessons learned from a qualitative radicalization study using Facebook.

    NARCIS (Netherlands)

    Sikkens, E.; San, M. van; Sieckelinck, S.; Boeije, H.; Winter, M. de

    2017-01-01

    Social media are useful facilitators when recruiting hidden populations for research. In our research on youth and radicalization, we were able to find and contact young people with extreme ideals through Facebook. In this article, we discuss our experiences using Facebook as a tool for finding

  4. Lessons in participant retention in the course of a randomized controlled clinical trial.

    Science.gov (United States)

    Idoko, Olubukola T; Owolabi, Olumuyiwa A; Odutola, Aderonke A; Ogundare, Olatunde; Worwui, Archibald; Saidu, Yauba; Smith-Sanneh, Alison; Tunkara, Abdoulie; Sey, Gibbi; Sanyang, Assan; Mendy, Philip; Ota, Martin O C

    2014-10-09

    Clinical trials are increasingly being conducted as new products seek to enter the market. Deployment of such interventions is based on evidence obtained mainly from the gold standard of randomized controlled clinical trials (RCCT). A crucial factor in the ability of RCCTs to provide credible and generalisable data is sample size and retention of the required number of subjects at completion of the follow-up period. However, recruitment and retention in clinical trials are hindered by prevalent peculiar challenges in Africa that need to be circumvented. This article shares experiences from a phase II trial that recorded a high retention rate at 14 months follow-up at a new clinical trial site. Mothers bringing children less than two months of age to the health facility were given information and invited to have their child enrolled if the inclusion criteria were fulfilled. Participants were enrolled over 8 months. Trial procedures, duration and risks/benefits were painstakingly and sequentially explained to the communities, parents and relevant relatives before and during the trial period. The proportions of participants that completed or did not complete the trial were analyzed including the reasons for failure to complete all trial procedures. 1044 individuals received information regarding the trial of which 371 returned for screening. 300 (81%) of them who fulfilled the inclusion criteria and did not meet any exclusion criteria were enrolled and 94% of these completed the trial. Consent withdrawal was the main reason for not completing the trial largely (75%) due to the father not being involved at the point of consenting or parents no longer being comfortable with blood sampling. Participant retention in clinical trials remains a crucial factor in ensuring generalisability of trial data. Appropriate measures to enhance retention should include continuous community involvement in the process, adequate explanation of trial procedures and risks/benefits; and

  5. Community Participation and Benefits in REDD+: A Review of Initial Outcomes and Lessons

    OpenAIRE

    David J. Ganz; Jill Blockhus; Kathleen Lawlor; Erin Myers Madeira

    2013-01-01

    The advent of initiatives to reduce emissions from deforestation and degradation and enhance forest carbon stocks (REDD+) in developing countries has raised much concern regarding impacts on local communities. To inform this debate, we analyze the initial outcomes of those REDD+ projects that systematically report on their socio-economic dimensions. To categorize and compare projects, we develop a participation and benefits framework that considers REDD+’s effects on local populations’ opport...

  6. Lessons from Philippines MPA Management: Social Ecological Interactions, Participation, and MPA Performance

    Science.gov (United States)

    Twichell, Julia; Pollnac, Richard; Christie, Patrick

    2018-06-01

    International interest in increasing marine protected area (MPA) coverage reflects broad recognition of the MPA as a key tool for marine ecosystems and fisheries management. Nevertheless, effective management remains a significant challenge. The present study contributes to enriching an understanding of best practices for MPA management through analysis of archived community survey data collected in the Philippines by the Learning Project (LP), a collaboration with United States Coral Triangle Initiative (USCTI), United States Agency for International Development (USAID), and partners. We evaluate stakeholder participation and social ecological interactions among resource users in MPA programs in the Palawan, Occidental Mindoro, and Batangas provinces in the Philippines. Analysis indicates that a complex suite of social ecological factors, including demographics, conservation beliefs, and scientifically correct knowledge influence participation, which in turn is related to perceived MPA performance. Findings indicate positive feedbacks within the system that have potential to strengthen perceptions of MPA success. The results of this evaluation provide empirical reinforcement to current inquiries concerning the role of participation in influencing MPA performance.

  7. Lessons from Philippines MPA Management: Social Ecological Interactions, Participation, and MPA Performance.

    Science.gov (United States)

    Twichell, Julia; Pollnac, Richard; Christie, Patrick

    2018-06-01

    International interest in increasing marine protected area (MPA) coverage reflects broad recognition of the MPA as a key tool for marine ecosystems and fisheries management. Nevertheless, effective management remains a significant challenge. The present study contributes to enriching an understanding of best practices for MPA management through analysis of archived community survey data collected in the Philippines by the Learning Project (LP), a collaboration with United States Coral Triangle Initiative (USCTI), United States Agency for International Development (USAID), and partners. We evaluate stakeholder participation and social ecological interactions among resource users in MPA programs in the Palawan, Occidental Mindoro, and Batangas provinces in the Philippines. Analysis indicates that a complex suite of social ecological factors, including demographics, conservation beliefs, and scientifically correct knowledge influence participation, which in turn is related to perceived MPA performance. Findings indicate positive feedbacks within the system that have potential to strengthen perceptions of MPA success. The results of this evaluation provide empirical reinforcement to current inquiries concerning the role of participation in influencing MPA performance.

  8. 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].

  9. Lessons learned from Rapid Response Research on wildland fires

    Science.gov (United States)

    Leigh Lentile; Penny Morgan; Colin Hardy; Andrew Hudak; Robert Means; Roger Ottmar; Peter Robichaud; Elaine Sutherland; Frederick Way; Sarah Lewis

    2007-01-01

    In recent years, more researchers are collecting data either on active wildfires or immediately after wildfire occurrence. Known as Rapid Response Research, this important undertaking provides real-time information, useful data, and improved tools for managers.

  10. Reflexivity: The Creation of Liminal Spaces--Researchers, Participants, and Research Encounters.

    Science.gov (United States)

    Enosh, Guy; Ben-Ari, Adital

    2016-03-01

    Reflexivity is defined as the constant movement between being in the phenomenon and stepping outside of it. In this article, we specify three foci of reflexivity--the researcher, the participant, and the encounter--for exploring the interview process as a dialogic liminal space of mutual reflection between researcher and participant. Whereas researchers' reflexivity has been discussed extensively in the professional discourse, participants' reflexivity has not received adequate scholarly attention, nor has the promise inherent in reflective processes occurring within the encounter. © The Author(s) 2015.

  11. ASPIRE: Active Societal Participation in Research and Education

    Science.gov (United States)

    Garza, C.; Parrish, J.; Harris, L.; Posselt, J.; Hatch, M.

    2017-12-01

    Active Societal Participation In Research and Education (ASPIRE) aims to cultivate a generation of geoscientists with the leadership knowledge and skills, scholarship, and material support to reframe and rebrand the geosciences as socially relevant and, thereby, to broaden participation in these fields. This generation of geoscientists will do so by bridging longstanding divides that impede access to and inclusion in the geosciences: between basic and applied science, between scholars in the academy and members of historically marginalized communities, and between the places where science is needed and the places where it is typically conducted. To bring about these types of change, we draw upon, refine, and institutionalize the working group model as the Mobile Working Group (MWG), directly referencing the need to move outside of the "ivory tower" and into the community. Led by a geoscientist with one foot in the academy and the other in the community - the Boundary Spanner - each MWG will focus on a single issue linked to a single community. ASPIRE supports multiple MWGs working across the geographic, ethnographic and "in practice" community space, as well as across the body of geoscience research and application. We hypothesize that in institutionalizing a new mode of geoscience research (MWG), learning from Boundary Spanners experiences with MWG, and refining a leadership development program from our findings, that we will have a scalable leadership tool and organizational structure that will rebrand the geosciences as socially relevant and inclusive of geoscientists from diverse backgrounds even as the "science space" of geoscience expands to incorporate in-community work.

  12. User-led innovations and participation processes: lessons from sustainable energy technologies

    International Nuclear Information System (INIS)

    Ornetzeder, Michael; Rohracher, Harald

    2006-01-01

    In this paper we will pose the question whether a higher level of user participation could be used as a strategy to improve the development and dissemination of sustainable energy technologies. We will especially focus on user-led innovation processes with a high involvement of individual end-users. In our argument we will draw on several case studies in the field of renewable energy technologies-in particular solar collectors and biomass heating systems-and sustainable building technologies. Users in these case studies were involved in the design or planning processes, sometimes in a very selective way and with limited influence, sometimes very active and for quite a long period of time. Especially in the case of renewable energy technologies self-building groups were highly successful and resulted in improved and widely disseminated technologies. Based on the empirical results of our case studies we will critically discuss the potential of user involvement (especially in self-building groups) for the development and promotion of sustainable energy technologies and outline technological and social pre-conditions for the success of such approaches

  13. Public participation for sustainability and social learning. Concepts and lessons from three case studies in Europe

    Energy Technology Data Exchange (ETDEWEB)

    Garmendia, Eneko [Institute for Environmental Sciences and Technologies (ICTA), Autonomous University of Barcelona (Spain); Environmental Economics Unit, Institute for Public Economics, University of the Basque Country (Spain); Stagl, Sigrid [Department of Socio-Economics, WU Vienna, Vienna University of Economics and Business (Austria)

    2010-06-15

    Shaping change such that it avoids losing potentially useful options for future development is a challenging task in the face of complex, coevolving socio-ecological systems. Sustainability appraisal methods, which open up dialogue and options before closing down and making suggestions, pay attention to the inclusion of various and conflicting points of view and address uncertainty, are increasingly used in the science, environment and energy policy domains. The quality of the process is seen as key to high quality appraisal outcomes. Dimensions of quality include learning opportunities which are seen as ways for addressing complexity and uncertainty. Participatory sustainability appraisal methods intend to support social learning among participants. Despite high expectations, social learning processes in sustainability appraisals are poorly conceptualized and empirically understudied. This paper (1) briefly reviews theories of social learning; (2) develops a conceptual framework for the analysis; and (3) presents an empirical application of the framework by use of data obtained from three energy and natural resource management case studies around Europe. (author)

  14. User-led innovations and participation processes: lessons from sustainable energy technologies

    Energy Technology Data Exchange (ETDEWEB)

    Ornetzeder, Michael [ZSI - Centre for Social Innovation, Linke Wienzeile 246, A-1150 Vienna (Austria); Rohracher, Harald [IFF/IFZ - Inter-University Research Centre for Technology, Work and Culture, Schloegelgasse 2, A-8010 Graz (Austria)

    2006-01-01

    In this paper we will pose the question whether a higher level of user participation could be used as a strategy to improve the development and dissemination of sustainable energy technologies. We will especially focus on user-led innovation processes with a high involvement of individual end-users. In our argument we will draw on several case studies in the field of renewable energy technologies-in particular solar collectors and biomass heating systems-and sustainable building technologies. Users in these case studies were involved in the design or planning processes, sometimes in a very selective way and with limited influence, sometimes very active and for quite a long period of time. Especially in the case of renewable energy technologies self-building groups were highly successful and resulted in improved and widely disseminated technologies. Based on the empirical results of our case studies we will critically discuss the potential of user involvement (especially in self-building groups) for the development and promotion of sustainable energy technologies and outline technological and social pre-conditions for the success of such approaches. (author)

  15. Improving cardiovascular outcomes among Aboriginal Australians: Lessons from research for primary care

    Directory of Open Access Journals (Sweden)

    Sandra C Thompson

    2016-11-01

    Full Text Available Background: The Aboriginal people of Australia have much poorer health and social indicators and a substantial life expectancy gap compared to other Australians, with premature cardiovascular disease a major contributor to poorer health. This article draws on research undertaken to examine cardiovascular disparities and focuses on ways in which primary care practitioners can contribute to reducing cardiovascular disparities and improving Aboriginal health. Methods: The overall research utilised mixed methods and included data analysis, interviews and group processes which included Aboriginal people, service providers and policymakers. Workshop discussions to identify barriers and what works were recorded by notes and on whiteboards, then distilled and circulated to participants and other stakeholders to refine and validate information. Additional engagement occurred through circulation of draft material and further discussions. This report distils the lessons for primary care practitioners to improve outcomes through management that is attentive to the needs of Aboriginal people. Results: Aspects of primordial, primary and secondary prevention are identified, with practical strategies for intervention summarised. The premature onset and high incidence of Aboriginal cardiovascular disease make prevention imperative and require that primary care practitioners understand and work to address the social underpinnings of poor health. Doctors are well placed to reinforce the importance of healthy lifestyle at all visits to involve the family and to reduce barriers which impede early care seeking. Ensuring better information for Aboriginal patients and better integrated care for patients who frequently have complex needs and multi-morbidities will also improve care outcomes. Conclusion: Primary care practitioners have an important role in improving Aboriginal cardiovascular care outcomes. It is essential that they recognise the special needs of their

  16. Improving cardiovascular outcomes among Aboriginal Australians: Lessons from research for primary care.

    Science.gov (United States)

    Thompson, Sandra C; Haynes, Emma; Woods, John A; Bessarab, Dawn C; Dimer, Lynette A; Wood, Marianne M; Sanfilippo, Frank M; Hamilton, Sandra J; Katzenellenbogen, Judith M

    2016-01-01

    The Aboriginal people of Australia have much poorer health and social indicators and a substantial life expectancy gap compared to other Australians, with premature cardiovascular disease a major contributor to poorer health. This article draws on research undertaken to examine cardiovascular disparities and focuses on ways in which primary care practitioners can contribute to reducing cardiovascular disparities and improving Aboriginal health. The overall research utilised mixed methods and included data analysis, interviews and group processes which included Aboriginal people, service providers and policymakers. Workshop discussions to identify barriers and what works were recorded by notes and on whiteboards, then distilled and circulated to participants and other stakeholders to refine and validate information. Additional engagement occurred through circulation of draft material and further discussions. This report distils the lessons for primary care practitioners to improve outcomes through management that is attentive to the needs of Aboriginal people. Aspects of primordial, primary and secondary prevention are identified, with practical strategies for intervention summarised. The premature onset and high incidence of Aboriginal cardiovascular disease make prevention imperative and require that primary care practitioners understand and work to address the social underpinnings of poor health. Doctors are well placed to reinforce the importance of healthy lifestyle at all visits to involve the family and to reduce barriers which impede early care seeking. Ensuring better information for Aboriginal patients and better integrated care for patients who frequently have complex needs and multi-morbidities will also improve care outcomes. Primary care practitioners have an important role in improving Aboriginal cardiovascular care outcomes. It is essential that they recognise the special needs of their Aboriginal patients and work at multiple levels both outside and

  17. Considering Actionability at the Participant's Research Setting Level for Anticipatable Incidental Findings from Clinical Research.

    Science.gov (United States)

    Ortiz-Osorno, Alberto Betto; Ehler, Linda A; Brooks, Judith

    2015-01-01

    Determining what constitutes an anticipatable incidental finding (IF) from clinical research and defining whether, and when, this IF should be returned to the participant have been topics of discussion in the field of human subject protections for the last 10 years. It has been debated that implementing a comprehensive IF-approach that addresses both the responsibility of researchers to return IFs and the expectation of participants to receive them can be logistically challenging. IFs have been debated at different levels, such as the ethical reasoning for considering their disclosure or the need for planning for them during the development of the research study. Some authors have discussed the methods for re-contacting participants for disclosing IFs, as well as the relevance of considering the clinical importance of the IFs. Similarly, other authors have debated about when IFs should be disclosed to participants. However, no author has addressed how the "actionability" of the IFs should be considered, evaluated, or characterized at the participant's research setting level. This paper defines the concept of "Actionability at the Participant's Research Setting Level" (APRSL) for anticipatable IFs from clinical research, discusses some related ethical concepts to justify the APRSL concept, proposes a strategy to incorporate APRSL into the planning and management of IFs, and suggests a strategy for integrating APRSL at each local research setting. © 2015 American Society of Law, Medicine & Ethics, Inc.

  18. Lessons about research to make cities safer and more inclusive ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    2017-10-20

    Oct 20, 2017 ... ... to help understand the drivers of urban violence, poverty, and inequalities. ... Throughout the initiative, IDRC and the research teams focused on research uptake, ethical practice, and gender analysis. ... Return to main page: Solutions to make cities safe and inclusive ... Careers · Contact Us · Site map.

  19. Rethinking Research on Teaching: Lessons Learned from an International Study.

    Science.gov (United States)

    Ryan, Doris W.,Ed.; Anderson, Lorin W.,Ed.

    1984-01-01

    Reviewing their "Classroom Environment Study: Teaching for Learning" and other teaching research literature, project personnel examine the limitations of the process-product paradigm typically used in research on teaching. Topics covered include a conceptual model for teaching; preservice and inservice teacher training; appropriate…

  20. Interview and recollection-based research with child disaster survivors: Participation-related changes in emotion and perceptions of participation

    Science.gov (United States)

    Hambrick, Erin P.; O’Connor, Bridget M.; Vernberg, Eric M.

    2015-01-01

    Objective Research suggests that some types of trauma research can be conducted safely with children ages 10 and older. The aim of this project was to learn more about potential risks or benefits of conducting research with younger children or with child disaster survivors, specifically about research that includes children providing trauma recollections. Method Fifty 8- to 12-year-old children who experienced a devastating tornado participated in an in-person interview that included both individual and joint (mother-child) recollections of their tornado experiences one year following exposure. These 50 children also rated three emotions at three timepoints and rated their perceptions (e.g., benefit and regret) of research post-participation. Children (N = 28) also participated in phone surveys three months later to assess persistent participation-related emotions and perceptions. Results Child reported emotions worsened from pre- to during participation; however, reports of emotions returned to pre-participation levels post-participation and remained so at the 3-month follow-up. Sixty-four percent of children reported at least some participation benefit and no participation regret immediately post-participation, as did 89.3% at the 3-month follow-up. Four percent of children reported some participation regret (no benefit) post-participation, and 0% three months later. No children requested to stop participating, and none required post-research connection with crisis services. Posttraumatic stress symptom severity, tornado exposure, and age were largely unrelated to child-reported emotions and perceptions of research. Conclusions Results indicate that carefully planned and executed disaster-related research that includes children providing recollections research can be conducted with preadolescents with little risk and some benefit. PMID:26390107

  1. Legal liabilities in research: early lessons from North America

    Directory of Open Access Journals (Sweden)

    Birenbaum Shelley

    2005-06-01

    Full Text Available Abstract The legal risks associated with health research involving human subjects have been highlighted recently by a number of lawsuits launched against those involved in conducting and evaluating the research. Some of these cases have been fully addressed by the legal system, resulting in judgments that provide some guidance. The vast majority of cases have either settled before going to trial, or have not yet been addressed by the courts, leaving us to wonder what might have been and what guidance future cases may bring. What is striking about the lawsuits that have been commenced is the broad range of individuals/institutions that are named as defendants and the broad range of allegations that are made. The research community should take this early experience as a warning and should reflect carefully on practices where research involving human subjects is concerned.

  2. Lesson Learning at JPL

    Science.gov (United States)

    Oberhettinger, David

    2011-01-01

    A lessons learned system is a hallmark of a mature engineering organization A formal lessons learned process can help assure that valuable lessons get written and published, that they are well-written, and that the essential information is "infused" into institutional practice. Requires high-level institutional commitment, and everyone's participation in gathering, disseminating, and using the lessons

  3. Embedding research in health systems: lessons from complexity theory.

    Science.gov (United States)

    Caffrey, Louise; Wolfe, Charles; McKevitt, Christopher

    2016-07-22

    Internationally, there has been increasing focus on creating health research systems. This article aims to investigate the challenges of implementing apparently simple strategies to support the development of a health research system. We focus on a case study of an English National Health Service Hospital Trust that sought to implement the national recommendation that health organisations should introduce a statement about research on all patient admission letters. We apply core concepts from complexity theory to the case study and undertake a documentary analysis of the email dialogue between staff involved in implementing this initiative. The process of implementing a research statement in patient admission letters in one clinical service took 1 year and 21 days. The length of time needed was influenced firstly by adaptive self-organisation, underpinned by competing interests. Secondly, it was influenced by the relationship between systems, rather than simply being a product of issues within those systems. The relationship between the health system and the research system was weaker than might have been expected. Responsibilities were unclear, leading to confusion and delayed action. Conventional ways of thinking about organisations suggest that change happens when leaders and managers change the strategic vision, structure or procedures in an organisation and then persuade others to rationally implement the strategy. However, health research systems are complex adaptive systems characterised by high levels of unpredictability due to self-organisation and systemic interactions, which give rise to 'emergent' properties. We argue for the need to study how micro-processes of organisational dynamics may give rise to macro patterns of behaviour and strategic organisational direction and for the use of systems approaches to investigate the emergent properties of health research systems.

  4. Researchers' participation in and motivations for engaging with research information management systems.

    Directory of Open Access Journals (Sweden)

    Besiki Stvilia

    Full Text Available This article examined how researchers participated in research information management systems (RIMSs, their motivations for participation, and their priorities for those motivations. Profile maintenance, question-answering, and endorsement activities were used to define three cumulatively increasing levels of participation: Readers, Record Managers, and Community Members. Junior researchers were more engaged in RIMSs than were senior researchers. Postdocs had significantly higher odds of endorsing other researchers for skills and being categorized as Community Members than did full and associate professors. Assistant professors were significantly more likely to be Record Managers than were members of any other seniority categories. Finally, researchers from the life sciences showed a significantly higher propensity for being Community Members than Readers and Record Managers when compared with researchers from engineering and the physical sciences, respectively.When performing activities, researchers were motivated by the desire to share scholarship, feel competent, experience a sense of enjoyment, improve their status, and build ties with other members of the community. Moreover, when researchers performed activities that directly benefited other members of a RIMS, they assigned higher priorities to intrinsic motivations, such as perceived self-efficacy, enjoyment, and building community ties. Researchers at different stages of their academic careers and disciplines ranked some of the motivations for engaging with RIMSs differently. The general model of research participation in RIMSs; the relationships among RIMS activities; the motivation scales for activities; and the activity, seniority, and discipline-specific priorities for the motivations developed by this study provide the foundation for a framework for researcher participation in RIMSs. This framework can be used by RIMSs and institutional repositories to develop tools and design

  5. Researchers' participation in and motivations for engaging with research information management systems.

    Science.gov (United States)

    Stvilia, Besiki; Wu, Shuheng; Lee, Dong Joon

    2018-01-01

    This article examined how researchers participated in research information management systems (RIMSs), their motivations for participation, and their priorities for those motivations. Profile maintenance, question-answering, and endorsement activities were used to define three cumulatively increasing levels of participation: Readers, Record Managers, and Community Members. Junior researchers were more engaged in RIMSs than were senior researchers. Postdocs had significantly higher odds of endorsing other researchers for skills and being categorized as Community Members than did full and associate professors. Assistant professors were significantly more likely to be Record Managers than were members of any other seniority categories. Finally, researchers from the life sciences showed a significantly higher propensity for being Community Members than Readers and Record Managers when compared with researchers from engineering and the physical sciences, respectively. When performing activities, researchers were motivated by the desire to share scholarship, feel competent, experience a sense of enjoyment, improve their status, and build ties with other members of the community. Moreover, when researchers performed activities that directly benefited other members of a RIMS, they assigned higher priorities to intrinsic motivations, such as perceived self-efficacy, enjoyment, and building community ties. Researchers at different stages of their academic careers and disciplines ranked some of the motivations for engaging with RIMSs differently. The general model of research participation in RIMSs; the relationships among RIMS activities; the motivation scales for activities; and the activity, seniority, and discipline-specific priorities for the motivations developed by this study provide the foundation for a framework for researcher participation in RIMSs. This framework can be used by RIMSs and institutional repositories to develop tools and design mechanisms to increase

  6. Creating a Knowledge Translation Platform: nine lessons from the Zambia Forum for Health Research

    Directory of Open Access Journals (Sweden)

    Kasonde Joseph M

    2012-10-01

    Full Text Available Abstract The concept of the Knowledge Translation Platform (KTP provides cohesion and leadership for national–level knowledge translation efforts. In this review, we discuss nine key lessons documenting the experience of the Zambia Forum for Health Research, primarily to inform and exchange experience with the growing community of African KTPs. Lessons from ZAMFOHR’s organizational development include the necessity of selecting a multi-stakeholder and -sectoral Board of Directors; performing comprehensive situation analyses to understand not only the prevailing research-and-policy dynamics but a precise operational niche; and selecting a leader that bridges the worlds of research and policy. Programmatic lessons include focusing on building the capacity of both policy-makers and researchers; building a database of local evidence and national-level actors involved in research and policy; and catalyzing work in particular issue areas by identifying leaders from the research community, creating policy-maker demand for research evidence, and fostering the next generation by mentoring both up-and-coming researchers and policy–makers. Ultimately, ZAMFOHR’s experience shows that an African KTP must pay significant attention to its organizational details. A KTP must also invest in the skill base of the wider community and, more importantly, of its own staff. Given the very real deficit of research-support skills in most low-income countries – in synthesis, in communications, in brokering, in training – a KTP must spend significant time and resources in building these types of in-house expertise. And lastly, the role of networking cannot be underestimated. As a fully-networked KTP, ZAMFOHR has benefited from the innovations of other KTPs, from funding opportunities and partnerships, and from invaluable technical support from both African and northern colleagues.

  7. A Doctoral Seminar in Qualitative Research Methods: Lessons Learned

    Directory of Open Access Journals (Sweden)

    Suzanne Franco

    2016-09-01

    Full Text Available New qualitative research methods continue to emerge in response to factors such as renewed interest in mixed methods, better understanding of the importance of a researcher’s philosophical stance, as well as the increased use of technology in data collection and analysis, to name a few. As a result, those facilitating research methods courses must revisit content and instructional strategies in order to prepare well-informed researchers. Approaches range from paradigm to pragmatic emphasis. This descriptive case study of a doctoral seminar for novice qualitative researchers describes the intricacies of the syllabus of a pragmatic approach in a constructivist/social constructionist learning environment. The purpose was to document the delivery and faculty/student interactions and reactions. Noteworthy were the contradictions and frustrations in the delivery as well as in student experiences. In the end, student input led to seminal learning experiences. The confirmation of the effectiveness of a constructivist/social constructivist learning environment is applicable to higher education pedagogy in general.

  8. Adaptation Insights: Lessons from participatory research in Africa ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    21 avr. 2016 ... The Adaptation Insights series consists of nine case studies from seven projects supported by the Climate Change Adaptation in Africaprogram. Each brief presents insights from research carried out with the active involvement of communities at risk from climate change. The series includes case studies ...

  9. Exploitation of the vulnerable in research: Responses to lessons ...

    African Journals Online (AJOL)

    and that this coincided with the development of the new science of ... findings were based on the category of race.[3] ... Among the greatest tragedies in human research experimentation, the heinous studies conducted during World War II by Nazi doctors on ... on concentration camp inmates were publicised during the.

  10. Lessons on consortium-based research in climate change and ...

    International Development Research Centre (IDRC) Digital Library (Canada)

    2014-04-03

    Apr 3, 2014 ... CARIAA is funded by Canada's International Development Research Centre and the UK's Department for International Development (DFID). The program aims to build the resilience of vulnerable populations and their livelihoods in three climate change hot spots in Africa and Asia. ​. Read the paper (PDF, ...

  11. Some Lessons from Art History for Art-Educational Research.

    Science.gov (United States)

    Feldman, Edmund Burke

    1980-01-01

    At present, art-educational research seems locked into a number of unexamined assumptions--largely derived from European Romantic ideology--about artistic productiveness as a desirable psychological trait. We need to know more about other cultural patterns of artistic behavior and the historic and social factors that influence them. (Author/SJL)

  12. Lessons in collaboration and effective field research from the Appalachian Headwaters Research Experience for Undergraduates Program

    Science.gov (United States)

    Jones, A. L.; Fox, J.; Wilder, M. S.

    2009-12-01

    In the summer of 2009, the authors launched year one of a three-year National Science Foundation-funded Research Experience for Undergraduates entitled "Carbon Storage and Headwater Health in the Appalachian Headwaters." Eight undergraduates selected from a nationally competitive field of more than 60 applicants participated in the ten-week field- and laboratory-based program along with three middle- and high-school teachers. Each student developed and completed an independent research project related to coal mining’s impact on soil organic carbon and sediment transport processes. Specifically, they used isotope ratio mass spectrometry to measure the carbon and nitrogen stable isotopic signature of soils and sediments in the Appalachian headwater landscapes and first order streams of Kentucky's southeastern coalfields. Among the program's innovative features was its fundamentally collaborative nature--which was represented in several ways. First, the background of the three program leaders was very different: an environmental planner with an academic background in land use planning and administration (Jones); a civil engineer trained in biogeochemistry and watershed modeling (Fox); and an environmental educator experienced in both formal and nonformal educator training and certification (Wilder). The program was also a collaboration between a Carnegie 1 research-oriented institution and an undergraduate/ teaching -focused regional comprehensive university. Finally, the participants themselves represented a diversity of disciplines and institutional backgrounds--including biology, geology, chemistry, environmental science and civil engineering. The Research Experience for Teachers component was another innovative program element. The teachers participated in all field and laboratory research activities during the first six weeks, then developed a unit of study for their own classrooms to be implemented during the current school year. In addition to the six

  13. Moving research into practice: lessons from the US Agency for Healthcare Research and Quality's IDSRN program

    Directory of Open Access Journals (Sweden)

    Taylor Erin

    2007-03-01

    Full Text Available Abstract Background The U.S. Agency for Healthcare Research and Quality's (AHRQ Integrated Delivery Systems Research Network (IDSRN program was established to foster public-private collaboration between health services researchers and health care delivery systems. Its broad goal was to link researchers and delivery systems to encourage implementation of research into practice. We evaluated the program to address two primary questions: 1 How successful was IDSRN in generating research findings that could be applied in practice? and 2 What factors facilitate or impede such success? Methods We conducted in-person and telephone interviews with AHRQ staff and nine IDSRN partner organizations and their collaborators, reviewed program documents, analyzed projects funded through the program, and developed case studies of four IDSRN projects judged promising in supporting research implementation. Results Participants reported that the IDSRN structure was valuable in creating closer ties between researchers and participating health systems. Of the 50 completed projects studied, 30 had an operational effect or use. Some kinds of projects were more successful than others in influencing operations. If certain conditions were met, a variety of partnership models successfully supported implementation. An internal champion was necessary for partnerships involving researchers based outside the delivery system. Case studies identified several factors important to success: responsiveness of project work to delivery system needs, ongoing funding to support multiple project phases, and development of applied products or tools that helped users see their operational relevance. Factors limiting success included limited project funding, competing demands on potential research users, and failure to reach the appropriate audience. Conclusion Forging stronger partnerships between researchers and delivery systems has the potential to make research more relevant to users

  14. Perspectives of an Interdisciplinaryg Research Team to Engage Practice: Lessons from a Knowledge Exchange Trainee Experience

    Science.gov (United States)

    Urquhart, Robin L.; Johnston, Grace M.; McVorran, Shauna M.; Burge, Fred I.

    2010-01-01

    End-of-life (EOL) care is an area of health services that will ultimately affect us all. To share the knowledge emerging from EOL research and to address inequities in the quality of EOL care in Nova Scotia, a knowledge exchange (KE) trainee was hired to translate research and surveillance into a Surveillance Report. The purpose of this paper is to reflect upon this initiative and share the research team's perspectives on their KE experiences. We describe four key competencies of the KE trainee selected, and discuss lessons learned from this KE trainee experience, to expand our understanding of KE. PMID:21532769

  15. Research Collaboration in a Communication Rights Campaign: Lessons Learned.

    Science.gov (United States)

    Ryan, Charlotte

    2018-01-01

    In building public support for social change, activists in communities of color routinely approach broader audiences via news media. Communities of color, however, routinely face disparities that limit their access to media including local news media outlets. This lack of access mirrors inequalities in political, social, and economic arenas and can slow public awareness campaigns to address disparities in health, environmental, and other quality-of-life issues. I describe two community-based collaborative action research studies that documented and challenged how local television newscasts underrepresented and misrepresented three communities of color in Boston. The linkage between communication rights and campaigns to address quality-of-life issues is presented, as well as unresolved challenges in the collaborative research process. The study has implications for environmental health campaigns.

  16. Lessons and Perspectives from a 25-Year Bioelectromagnetics Research Program

    Directory of Open Access Journals (Sweden)

    Andrew W. Wood

    2016-09-01

    Full Text Available The question of whether electromagnetic fields from electric power or telecommunications systems can be linked unequivocally to health detriments has occupied scientific research endeavors for nearly half a century. For 25 years, the bioelectromagnetic research group at Swinburne University in Melbourne, Australia, has pursued a series of investigations with relevant endpoints, such as neurophysiological and neuropsychological effects, cell calcium level changes, proliferation, and genotoxic effects. Most have shown no significant changes due to fields, however, in some pilot studies significant changes were revealed, but in most cases these were not replicated in follow-up studies. This highlights a feature of this research area, generally; the unambiguous identification of small changes in noisy data where the understanding of possible interaction mechanisms is lacking. On the other hand, mathematical modelling studies, particularly with respect to fields near metallic implants, in workers exposed to fields in harsh environmental conditions and at very high frequencies (THz, continue to add to the expanding knowledge database on the characteristics of the complex electromagnetic environment we live in today.

  17. Recent progress in structural biology: lessons from our research history.

    Science.gov (United States)

    Nitta, Ryo; Imasaki, Tsuyoshi; Nitta, Eriko

    2018-05-16

    The recent 'resolution revolution' in structural analyses of cryo-electron microscopy (cryo-EM) has drastically changed the research strategy for structural biology. In addition to X-ray crystallography and nuclear magnetic resonance spectroscopy, cryo-EM has achieved the structural analysis of biological molecules at near-atomic resolution, resulting in the Nobel Prize in Chemistry 2017. The effect of this revolution has spread within the biology and medical science fields affecting everything from basic research to pharmaceutical development by visualizing atomic structure. As we have used cryo-EM as well as X-ray crystallography since 2000 to elucidate the molecular mechanisms of the fundamental phenomena in the cell, here we review our research history and summarize our findings. In the first half of the review, we describe the structural mechanisms of microtubule-based motility of molecular motor kinesin by using a joint cryo-EM and X-ray crystallography method. In the latter half, we summarize our structural studies on transcriptional regulation by X-ray crystallography of in vitro reconstitution of a multi-protein complex.

  18. Participant views and experiences of participating in HIV research in sub-Saharan Africa: a qualitative systematic review.

    Science.gov (United States)

    Nalubega, Sylivia; Evans, Catrin

    2015-06-12

    Human immunodeficiency virus clinical trials are increasingly being conducted in sub-Saharan Africa. There is a tension between the pressure to increase levels of research participation and the need to ensure informed consent and protection of participants' rights. Researchers need to be aware of the particular ethical issues that underpin Human immunodeficiency virus research conduct in low income settings. This necessitates hearing from those who have participated in research and who have direct experience of the research process. This review aimed to synthesize and present the best available evidence in relation to Human immunodeficiency virus research participation in sub-Saharan Africa, based on the views and experiences of research participants. The review included studies whose participants were current or former adult Human immunodeficiency virus research participants from sub-Saharan African countries. Views, experiences, attitudes, understandings, perceptions and perspectives of Human immunodeficiency virus research participants in sub-Saharan Africa. Types of studies: This review considered studies that focused on qualitative data, including, but not limited to, designs such as phenomenology, ethnography, grounded theory, action research and feminist research. A three-step search strategy was utilized. Seven databases (CINAHL, Ovid MEDLINE (R) 1946, ASSIA, PsychInfo, Web of Science, EMBASE, and African Index Medicus) were searched with no limitation to years of publication, followed by hand searching of reference lists. Only studies published in the English language were considered. Methodological quality was assessed using the Qualitative Assessment and Review Instrument developed by the Joanna Briggs Institute. Qualitative findings were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Qualitative research findings were pooled using a pragmatic meta-aggregative approach and the Joanna Briggs Institute Qualitative

  19. Craigslist versus print newspaper advertising for recruiting research participants for alcohol studies: Cost and participant characteristics.

    Science.gov (United States)

    Gioia, Christopher J; Sobell, Linda Carter; Sobell, Mark B; Agrawal, Sangeeta

    2016-03-01

    Technology has transformed our lifestyles in dramatic and significant ways, including new and less expensive options for recruiting study participants. This study examines cost and participant differences between two recruitment sources, Craigslist (CL), and print newspapers (PNs). This paper also reviewed and compared studies involving clinical trials published since 2010 that recruited participants using CL alone or in combination with other methods. Secondary data analyses from a parent study involving a randomized controlled trial of a mail-based intervention to promote self-change with problem drinkers. Significant differences were found between CL and PN participants on most demographic and pretreatment drinking variables. While all participants had AUDIT scores suggestive of an alcohol problem and reported drinking at high-risk levels, CL participants had less severe drinking problem histories, were considerably younger, and had a higher socioeconomic status than PN participants. The total advertising costs for the 65 CL ads ($275) were significantly less than the 69 PN ads ($33, 311). The recruiting cost per eligible participant was vastly less expensive using CL ($1.46) compared to print newspaper ads ($116.88). Using CL is a viable recruitment method for soliciting participants, particularly those that are younger, for alcohol intervention studies. It is also less expensive than newspaper ads. When CL participants were recruited, they reported being slightly more confident to change their drinking than PN participants. Limitations of using CL are discussed, including that some initial ad responders gave inconsistent answers to similar questions and a few tried to enter the study more than once. Copyright © 2015 Elsevier Ltd. All rights reserved.

  20. Researching Lifelong Learning Participation through an Interdisciplinary Lens

    Science.gov (United States)

    Boeren, Ellen

    2017-01-01

    This paper explores the interdisciplinary nature of studies in the field of lifelong learning participation. Until recently, participation studies have been presented in a rather fragmented way, often drawing on insights from separate disciplines such as sociology or psychology. The complex nature of lifelong learning participation, however, urges…

  1. Tiltrotor research aircraft composite blade repairs: Lessons learned

    Science.gov (United States)

    Espinosa, Paul S.; Groepler, David R.

    1991-01-01

    The XV-15, N703NA Tiltrotor Research Aircraft located at the NASA Ames Research Center, Moffett Field, California, currently uses a set of composite rotor blades of complex shape known as the advanced technology blades (ATBs). The main structural element of the blades is a D-spar constructed of unidirectional, angled fiberglass/graphite, with the aft fairing portion of the blades constructed of a fiberglass cross-ply skin bonded to a Nomex honeycomb core. The blade tip is a removable laminate shell that fits over the outboard section of the spar structure, which contains a cavity to retain balance weights. Two types of tip shells are used for research. One is highly twisted (more than a conventional helicopter blade) and has a hollow core constructed of a thin Nomex-honeycomb-and-fiberglass-skin sandwich; the other is untwisted with a solid Nomex honeycomb core and a fiberglass cross-ply skin. During initial flight testing of the blades, a number of problems in the composite structure were encountered. These problems included debonding between the fiberglass skin and the honeycomb core, failure of the honeycomb core, failures in fiberglass splices, cracks in fiberglass blocks, misalignment of mated composite parts, and failures of retention of metal fasteners. Substantial time was spent in identifying and repairing these problems. Discussed here are the types of problems encountered, the inspection procedures used to identify each problem, the repairs performed on the damaged or flawed areas, the level of criticality of the problems, and the monitoring of repaired areas. It is hoped that this discussion will help designers, analysts, and experimenters in the future as the use of composites becomes more prevalent.

  2. Tiltrotor Research Aircraft composite blade repairs - Lessons learned

    Science.gov (United States)

    Espinosa, Paul S.; Groepler, David R.

    1992-01-01

    The XV-15, N703NA Tiltrotor Research Aircraft located at the NASA Ames Research Center, Moffett Field, California, currently uses a set of composite rotor blades of complex shape known as the advanced technology blades (ATBs). The main structural element of the blades is a D-spar constructed of unidirectional, angled fiberglass/graphite, with the aft fairing portion of the blades constructed of a fiberglass cross-ply skin bonded to a Nomex honeycomb core. The blade tip is a removable laminate shell that fits over the outboard section of the spar structure, which contains a cavity to retain balance weights. Two types of tip shells are used for research. One is highly twisted (more than a conventional helicopter blade) and has a hollow core constructed of a thin Nomex-honeycomb-and-fiberglass-skin sandwich; the other is untwisted with a solid Nomex honeycomb core and a fiberglass cross-ply skin. During initial flight testing of the blades, a number of problems in the composite structure were encountered. These problems included debonding between the fiberglass skin and the honeycomb core, failure of the honeycomb core, failures in fiberglass splices, cracks in fiberglass blocks, misalignment of mated composite parts, and failures of retention of metal fasteners. Substantial time was spent in identifying and repairing these problems. Discussed here are the types of problems encountered, the inspection procedures used to identify each problem, the repairs performed on the damaged or flawed areas, the level of criticality of the problems, and the monitoring of repaired areas. It is hoped that this discussion will help designers, analysts, and experimenters in the future as the use of composites becomes more prevalent.

  3. Cancer Research Participation Beliefs and Behaviors of a Southern Black Population: A Quantitative Analysis of the Role of Structural Factors in Cancer Research Participation.

    Science.gov (United States)

    Farr, Deeonna E; Brandt, Heather M; Comer, Kimberly D; Jackson, Dawnyéa D; Pandya, Kinjal; Friedman, Daniela B; Ureda, John R; Williams, Deloris G; Scott, Dolores B; Green, Wanda; Hébert, James R

    2015-09-01

    Increasing the participation of Blacks in cancer research is a vital component of a strategy to reduce racial inequities in cancer burden. Community-based participatory research (CBPR) is especially well-suited to advancing our knowledge of factors that influence research participation to ultimately address cancer-related health inequities. A paucity of literature focuses on the role of structural factors limiting participation in cancer research. As part of a larger CBPR project, we used survey data from a statewide cancer needs assessment of a Black faith community to examine the influence of structural factors on attitudes toward research and the contributions of both structural and attitudinal factors on whether individuals participate in research. Regression analyses and non-parametric statistics were conducted on data from 727 adult survey respondents. Structural factors, such as having health insurance coverage, experiencing discrimination during health care encounters, and locale, predicted belief in the benefits, but not the risks, of research participation. Positive attitudes toward research predicted intention to participate in cancer research. Significant differences in structural and attitudinal factors were found between cancer research participants and non-participants; however, directionality is confounded by the cross-sectional survey design and causality cannot be determined. This study points to complex interplay of structural and attitudinal factors on research participation as well as need for additional quantitative examinations of the various types of factors that influence research participation in Black communities.

  4. Health promotion, occupational therapy and multiculturalism: lessons from research.

    Science.gov (United States)

    Dyck, I

    1993-08-01

    Principles of occupational therapy practice make the profession an important potential partner in health promotion initiatives for immigrant groups. Health promotion embodies the principles of self-definition of health needs by target groups, and working with a community in initiating and supporting programmes. This paper discusses the implications of an exploratory study of the daily activities of immigrant Indo-Canadian mothers for translating health promotion principles into practice. The research process and an analysis of interviews conducted with the women suggest factors to consider in using a health promotion framework with immigrants who have experienced social and economic dislocation through the immigration process. Discussion of household structure, divisions of labour, childcare strategies, and parenting concerns raises issues requiring particular attention in sharing occupational therapy skills and knowledge with ethnocultural communities.

  5. Building clinicians-researchers partnerships: lessons from diverse natural settings and practice-oriented initiatives.

    Science.gov (United States)

    Castonguay, Louis G; Youn, Soo Jeong; Xiao, Henry; Muran, J Christopher; Barber, Jacques P

    2015-01-01

    In this concluding paper, we identify the type of studies conducted by 11 teams of contributors to a special issue on building clinicians-researchers partnerships. Those studies were conducted across a variety of clinical settings. We also integrate the lessons that have emerged from their collaborative initiatives in terms of obstacles faced, strategies adopted to address these challenges, benefits gained, and general recommendations offered to facilitate studies conducted with or by clinicians. The paper ends with the authors' thoughts about the future success of practice-oriented research in general.

  6. Standing Classrooms: Research and Lessons Learned from Around the World.

    Science.gov (United States)

    Hinckson, Erica; Salmon, Jo; Benden, Mark; Clemes, Stacey A; Sudholz, Bronwyn; Barber, Sally E; Aminian, Saeideh; Ridgers, Nicola D

    2016-07-01

    Children spend between 50 and 70 % of their time sitting while at school. Independent of physical activity levels, prolonged sitting is associated with poor health outcomes in adulthood. While there is mixed evidence of health associations among children and adolescents, public health guidelines in the USA, UK, Australia and Canada now recommend young people should break up long periods of sitting as frequently as possible. A potentially effective approach for reducing and breaking up sitting throughout the day is changing the classroom environment. This paper presents an overview of a relatively new area of research designed to reduce youth sitting time while at school by changing the classroom environment (n = 13 studies). Environmental changes included placement of height-adjustable or stand-biased standing desks/workstations with stools, chairs, exercise balls, bean bags or mats in the classroom. These 13 published studies suggest that irrespective of the approach, youth sitting time was reduced by between ~44 and 60 min/day and standing time was increased by between 18 and 55 min/day during classroom time at school. Other benefits include increased energy expenditure and the potential for improved management of students' behaviour in the classroom. However, few large trials have been conducted, and there remains little evidence regarding the impact on children's learning and academic achievement. Nevertheless, with an increasing demand placed on schools and teachers regarding students' learning outcomes, strategies that integrate moving throughout the school day and that potentially enhance the learning experience and future health outcomes for young people warrant further exploration.

  7. Cancer patient and survivor research from the cancer information service research consortium: a preview of three large randomized trials and initial lessons learned.

    Science.gov (United States)

    Marcus, Alfred C; Diefenbach, Michael A; Stanton, Annette L; Miller, Suzanne M; Fleisher, Linda; Raich, Peter C; Morra, Marion E; Perocchia, Rosemarie Slevin; Tran, Zung Vu; Bright, Mary Anne

    2013-01-01

    The authors describe 3 large randomized trials from the Cancer Information Service Research Consortium. Three web-based multimedia programs are being tested to help newly diagnosed prostate (Project 1) and breast cancer patients (Project 2) make informed treatment decisions and breast cancer patients prepare for life after treatment (Project 3). Project 3 also tests a telephone callback intervention delivered by a cancer information specialist. All participants receive standard print material specific to each project. Preliminary results from the 2-month follow-up interviews are reported for the initial wave of enrolled participants, most of whom were recruited from the Cancer Information Service (1-800-4-CANCER) telephone information program (Project 1: n =208; Project 2: n =340; Project 3: n =792). Self-reported use of the multimedia program was 51%, 52%, and 67% for Projects 1, 2, and 3, respectively. Self-reported use of the print materials (read all, most, or some) was 90%, 85%, and 83% for Projects 1, 2, and 3, respectively. The callback intervention was completed by 92% of Project 3 participants. Among those using the Cancer Information Service Research Consortium interventions, perceived usefulness and benefit was high, and more than 90% reported that they would recommend them to other cancer patients. The authors present 5 initial lessons learned that may help inform future cancer communications research.

  8. Understanding Ethical Issues of Research Participation from the Perspective of Participating Children and Adolescents: A Systematic Review

    Science.gov (United States)

    Broome, Marion E.

    2017-01-01

    Background The past twenty years have seen distinct shifts in the way the participation of children and adolescents in research is viewed. This has been emphasized by the growing pediatric research enterprise. Additional information on children’s and adolescents’ experiences during research participation is needed to better inform researchers on the ethical conduct of research with this vulnerable population. Aims The objective of this analysis was to examine ethical issues in research with children and adolescents from their perspective as participants, including: assent, parental consent, risk perception, impact of research participation, and incentives. Methods This systematic review was conducted per the Long et al. framework by means of an iterative searching process. Using the key words ‘research ethics’ and ‘child or pediatric or adolescent’, PubMed, CINAHL, and EBSCOhost databases were searched to identify articles. Limitations placed on the original searches were: English language, year of publication between 2003–2014, humans, abstract available, and age birth–18 years. Findings Twenty-three empiric studies were identified and formed the sample. Included studies represented a diverse range of areas of research, methods, settings, sample demographics, authors, and journals. Discussion Even young children demonstrated the ability to understand essential elements of research, although there is variability in children’s level of understanding. Trust was a significant contributing factor to children’s and adolescents’ participation in research, and also shaped their assessments of risk. Research participation was mainly beneficial for children and adolescents. Incentives were mainly viewed positively, although concerns of possible undue influence were expressed. Linking Evidence to Action This systematic review highlights the importance of including the perspectives of children and adolescents and provides researchers and nurse clinicians

  9. Addressing NCDs through research and capacity building in LMICs: lessons learned from tobacco control.

    Science.gov (United States)

    Sturke, Rachel; Vorkoper, Susan; Duncan, Kalina; Levintova, Marya; Parascondola, Mark

    2016-01-01

    Confronting the global non-communicable diseases (NCDs) crisis requires a critical mass of scientists who are well versed in regional health problems and understand the cultural, social, economic, and political contexts that influence the effectiveness of interventions. Investments in global NCD research must be accompanied by contributions to local research capacity. The National Institutes of Health (NIH) and the Fogarty International Center have a long-standing commitment to supporting research capacity building and addressing the growing burden of NCDs in low- and middle-income countries. One program in particular, the NIH International Tobacco and Health Research and Capacity Building Program (TOBAC program), offers an important model for conducting research and building research capacity simultaneously. This article describes the lessons learned from this unique funding model and demonstrates how a relatively modest investment can make important contributions to scientific evidence and capacity building that could inform ongoing and future efforts to tackle the global burden of NCDs.

  10. Addressing NCDs through research and capacity building in LMICs: lessons learned from tobacco control

    Directory of Open Access Journals (Sweden)

    Rachel Sturke

    2016-08-01

    Full Text Available Confronting the global non-communicable diseases (NCDs crisis requires a critical mass of scientists who are well versed in regional health problems and understand the cultural, social, economic, and political contexts that influence the effectiveness of interventions. Investments in global NCD research must be accompanied by contributions to local research capacity. The National Institutes of Health (NIH and the Fogarty International Center have a long-standing commitment to supporting research capacity building and addressing the growing burden of NCDs in low- and middle-income countries. One program in particular, the NIH International Tobacco and Health Research and Capacity Building Program (TOBAC program, offers an important model for conducting research and building research capacity simultaneously. This article describes the lessons learned from this unique funding model and demonstrates how a relatively modest investment can make important contributions to scientific evidence and capacity building that could inform ongoing and future efforts to tackle the global burden of NCDs.

  11. Customer Satisfaction in Participation Banks: A Research in Kastamonu

    Directory of Open Access Journals (Sweden)

    Serkan Dilek

    2017-10-01

    Full Text Available Interest income is considered as forbidden in Islam. Therefore in Turkey, conservatives generally don’t prefer general banking and by this way funds can’t be used in economic system. So saving deficit can’t be solved in country and saving of people depreciates against inflation. Participation banks which work according to Islamic rules are set up to bring these funds to economy. Participation banking operates in more than 60 countries today and conservatives generally prefer to work with because they are working to principles of profit instead of interest. To attract and persuade more people, at first participation banks should satisfy their customers. In our study we aim to measure customer satisfaction in participation banks in Kastamonu and to reveal the differences between demographic groups. To this aim we conducted a questionnaire to customers of participation banks in Kastamonu.

  12. The learning teacher in a collaborative lesson study team within the context of mathematics

    NARCIS (Netherlands)

    Goei, Sui Lin; Verhoef, Neeltje Cornelia

    2015-01-01

    This paper summarises results of two studies on teachers’ learning when participating in a collaborative Lesson Study team within the context of mathematics teaching. In study one, Lesson Study was used in the classic way of preparing, designing, executing and reflecting on the research lesson.

  13. Lessons learnt from the DECI project on different processes for public participation and transparency in decision making

    International Nuclear Information System (INIS)

    Andersson, K.

    2000-01-01

    This study emanates from the work in Oskarshamn to build a process for public participation related to the site selection for a nuclear waste repository (the 'Oskarshamn model'). The idea was to see how these experiences could be useful in a broader context of decision making in complex issues, especially considering issues of common interest in the Baltic Sea Region. A pre-study for a 'Decision Institute', DECI, was initiated to describe problems in today's society that DECI would address, explore methods for the enhancement of transparency and public participation, and to suggest approaches for research and application. The study was financed by Swebaltcop (a EU Baltic Sea Co-operation Programme), the Regional Council in Kalmar County, and the Municipality of Oskarshamn. It was conducted by an interdisciplinary research group from Karinta-Konsult, the Royal Institute of Technology and the University of Gothenburg. Besides the work in Oskarshamn, results from the RISCOM Pilot project and current developments in Environmental Impact Assessment (EIA) and Strategic Environmental Assessment (SEA) were in particular taken into account. This presentation: - Addresses problems with decisions on complex issues. - Discusses reasons for public participation. - Gives a framework for transparency. - Describes a number procedures aimed at public participation and transparency. - Gives a framework for how procedures can be structured. - Gives some conclusions with regard to present status and future work. (author)

  14. Barriers to Local Residents’ Participation in Community-Based Tourism: Lessons from Houay Kaeng Village in Laos

    Directory of Open Access Journals (Sweden)

    Kim Sangkyun

    2014-01-01

    Full Text Available This study aims to identify the barriers to local residents’ participation in the process of community-based tourism planning and development in a developing country. Focusing on the case of Houay Kaeng Village in Sayabouly Province, Laos, a qualitative exploratory study was conducted by adopting in-depth interviews with the various levels of local community’s members. The key barriers to local community participation identified in this research include: (1 low education levels and lack of knowledge about tourism; (2 poor living conditions and lack of financial support; (3 busy daily routine and lack of time for tourism participation; (4 local community’s perception of tourism as a seasonal business with low income; and (5 power disparities, institutional disincentives and local’s distrust in authorities. The results suggest that only a small number of the local residents in the village were satisfied with their current and on-going participation expressing their strong willingness to continue in participating in the process of tourism planning and development, whereas a large group of the residents were not willing to do it at all in the future. The paper further discusses implications for the government and communities in regard to community-based sustainable tourism development.

  15. 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

    about implementation and outputs. Policy literature endorses the need to include PPI representation at all stages of planning, performing and research dissemination, and recommends resource allocation to these roles; but details of how to make such inputs effective in practice are less common. While literature on power and participation informs the debate, there are relatively few published case studies of how this can play out through the lived experience of PPI in research; early findings highlight key issues around access to knowledge, resources, and interpersonal respect. This article describes the findings of a case study of PPI within a study about PPI in research. Methods The aim of the study was to look at how the PPI representatives' inputs had developed over time, key challenges and changes, and lessons learned. We used realist evaluation and normalisation process theory to frame and analyse the data, which was drawn from project documentation, minutes of meetings and workshops, field notes and observations made by PPI representatives and researchers; documented feedback after meetings and activities; and the structured feedback from two formal reflective meetings. Results Key findings included the need for named contacts who support, integrate and work with PPI contributors and researchers, to ensure partnership working is encouraged and supported to be as effective as possible. A structure for partnership working enabled this to be enacted systematically across all settings. Some individual tensions were nonetheless identified around different roles, with possible implications for clarifying expectations and deepening understandings of the different types of PPI contribution and of their importance. Even in a team with research expertise in PPI, the data showed that there were different phases and challenges to 'normalising' the PPI input to the project. Mutual commitment and flexibility, embedded through relationships across the team, led to inclusion and

  16. Surrogate receptivity to participation in critical illness genetic research: aligning research oversight and stakeholder concerns.

    Science.gov (United States)

    Freeman, Bradley D; Butler, Kevin; Bolcic-Jankovic, Dragana; Clarridge, Brian R; Kennedy, Carie R; LeBlanc, Jessica; Chandros Hull, Sara

    2015-04-01

    Collection of genetic biospecimens as part of critical illness investigations is increasingly commonplace. Oversight bodies vary in restrictions imposed on genetic research, introducing inconsistencies in study design, potential for sampling bias, and the possibility of being overly prohibitive of this type of research altogether. We undertook this study to better understand whether restrictions on genetic data collection beyond those governing research on cognitively intact subjects reflect the concerns of surrogates for critically ill patients. We analyzed survey data collected from 1,176 patients in nonurgent settings and 437 surrogates representing critically ill adults. Attitudes pertaining to genetic data (familiarity, perceptions, interest in participation, concerns) and demographic information were examined using univariate and multivariate techniques. We explored differences among respondents who were receptive (1,333) and nonreceptive (280) to genetic sample collection. Whereas factors positively associated with receptivity to research participation were "complete trust" in health-care providers (OR, 2.091; 95% CI, 1.544-2.833), upper income strata (OR, 2.319; 95% CI, 1.308-4.114), viewing genetic research "very positively" (OR, 3.524; 95% CI, 2.122-5.852), and expressing "no worry at all" regarding disclosure of results (OR, 2.505; 95% CI, 1.436-4.369), black race was negatively associated with research participation (OR, 0.410; 95% CI, 0.288-0.585). We could detect no difference in receptivity to genetic sample collection comparing ambulatory patients and surrogates (OR, 0.738; 95% CI, 0.511-1.066). Expressing trust in health-care providers and viewing genetic research favorably were associated with increased willingness for study enrollment, while concern regarding breach of confidentiality and black race had the opposite effect. Study setting had no bearing on willingness to participate.

  17. Research and Engagement Strategies for Young Adult Immigrants Without Documentation: Lessons Learned Through Community Partnership.

    Science.gov (United States)

    Raymond-Flesch, Marissa; Siemons, Rachel; Brindis, Claire D

    2016-01-01

    Limited research has focused on undocumented immigrants' health and access to care. This paper describes participant engagement strategies used to investigate the health needs of immigrants eligible for Deferred Action for Childhood Arrivals (DACA). Community-based strategies engaged advocates and undocumented Californians in study design and recruitment. Outreach in diverse settings, social media, and participant-driven sampling recruited 61 DACA-eligible focus group participants. Social media, community-based organizations (CBOs), family members, advocacy groups, and participant-driven sampling were the most successful recruitment strategies. Participants felt engaging in research was instrumental for sharing their concerns with health care providers and policymakers, noteworthy in light of their previously identified fears and mistrust of government officials. Using multiple culturally responsive strategies including participant-driven sampling, engagement with CBOs, and use of social media, those eligible for DACA eagerly engage as research participants. Educating researchers and institutional review boards (IRBs) about legal and safety concerns can improve research engagement.

  18. Research Ethics in Behavioral Interventions Among Special Populations: Lessons From the Peer Approaches to Lupus Self-Management Study.

    Science.gov (United States)

    Faith, Trevor D; Egede, Leonard; Williams, Edith M

    2018-02-01

    Research involving a homogenous cohort of participants belonging to a special population must make considerations to recruit and protect the subjects. This study analyses the ethical considerations made in the peer approaches to lupus self-management project which pilot tested a peer mentoring intervention for African American women with systemic lupus erythematosus. Considerations made at the outset of the project are described and their justifications and reasoning are given. Through analysis of feedback from a postintervention focus group and mentors' logs, implications on program outcomes and participant satisfaction are discussed. Feedback indicated the importance of recruiting and training capable mentors, consistent contact from study staff to avert adverse events and avert fear or mistrust and careful consideration that must go into the pairing of mentors and mentees. Participant feedback also indicated that sensitive topics must be addressed carefully to prevent distress and dissatisfaction. Applying the lessons learned from this work as well as the considerations that proved successful may improve the contextualization and ethical conduct of behavioral interventions in special populations resulting in improved tailoring and acceptability toward historically underserved individuals. Published by Elsevier Inc.

  19. Children's self reported discomforts as participants in clinical research.

    NARCIS (Netherlands)

    Staphorst, M.S.; Hunfeld, J.A.M.; van de Vathorst, S.; Passchier, J.; van Goudoever, J.B.

    2015-01-01

    Introduction: There is little empirical evidence on children's subjective experiences of discomfort during clinical research procedures. Therefore, Institutional Review Boards have limited empirical information to guide their decision-making on discomforts for children in clinical research. To get

  20. Children's self reported discomforts as participants in clinical research

    NARCIS (Netherlands)

    Staphorst, Mira S.; Hunfeld, Joke A. M.; van de Vathorst, Suzanne; Passchier, Jan; van Goudoever, Johannes B.

    2015-01-01

    There is little empirical evidence on children's subjective experiences of discomfort during clinical research procedures. Therefore, Institutional Review Boards have limited empirical information to guide their decision-making on discomforts for children in clinical research. To get more insight

  1. Children as Researchers in Primary Schools: Choice, Voice and Participation

    Science.gov (United States)

    Bucknall, Sue

    2012-01-01

    "Children as Researchers in Primary Schools" is an innovative and unique resource for practitioners supporting children to become "real world" researchers in the primary classroom. It will supply you with the skills and ideas you need to implement a "children as researchers" framework in your school that can be adapted for different ages and…

  2. Developing Research Collaborations in an Academic Clinical Setting: Challenges and Lessons Learned.

    Science.gov (United States)

    Sahs, John A; Nicasio, Andel V; Storey, Joan E; Guarnaccia, Peter J; Lewis-Fernández, Roberto

    2017-08-01

    Research collaboration in "real world" practice settings may enhance the meaningfulness of the findings and reduce barriers to implementation of novel intervention strategies. This study describes an initiative to integrate research into a hospital-based outpatient psychiatric clinic within an academic medical center, focusing on collaborative processes across three research projects. We report on the varied outcomes of the projects and utilize data from two focus groups to identify the key elements that contributed to the challenges and successes. We identify barriers to practice-research collaborations that emerged even when the initial circumstances of the partnership were favorable. These barriers include the presence of varied agendas across clinicians and investigators, resource constraints, limited staff buy-in, and staff turnover. In highlighting the lessons learned in this collaborative process, we hope to facilitate successful partnerships in other clinical settings.

  3. Potential Factors Influencing Indigenous Education Participation and Achievement. Research Report

    Science.gov (United States)

    Biddle, Nicholas; Cameron, Timothy

    2012-01-01

    This report examines two sets of issues, the first being whether Indigenous Australians obtain a lower return on investment in education and training than other Australians. If they do, then this would partly explain why, in general, Indigenous participation in education and training is relatively low. The second issue is whether Indigenous…

  4. Participation in Education. ACER Research Monograph No. 30.

    Science.gov (United States)

    Williams, Trevor; And Others

    Participation in education in Australia is reported, with attention to: completion of year 12; postsecondary education; technical and further education (TAFE); apprenticeships; higher education; universities; Colleges of Advanced Education (CAEs); and degree programs. Data from two national probability samples of young people 4 years apart in age…

  5. Developing Research-Ready Skills: Preparing Early Academic Students for Participation in Research Experiences

    Science.gov (United States)

    Charlevoix, D. J.; Morris, A. R.

    2015-12-01

    Engaging lower-division undergraduates in research experiences is a key but challenging aspect of guiding talented students into the geoscience research pipeline. UNAVCO conducted a summer internship program to prepare first and second year college students for participation in authentic, scientific research. Many students in their first two years of academic studies do not have the science content knowledge or sufficient math skills to conduct independent research. Students from groups historically underrepresented in the geosciences may face additional challenges in that they often have a less robust support structure to help them navigate the university environment and may be less aware of professional opportunities in the geosciences.UNAVCO, manager of NSF's geodetic facility, hosted four students during summer 2015 internship experience aimed to help them develop skills that will prepare them for research internships and skills that will help them advance professionally. Students spent eight weeks working with UNAVCO technical staff learning how to use equipment, prepare instrumentation for field campaigns, among other technical skills. Interns also participated in a suite of professional development activities including communications workshops, skills seminars, career circles, geology-focused field trips, and informal interactions with research interns and graduate student interns at UNAVCO. This presentation will outline the successes and challenges of engaging students early in their academic careers and outline the unique role such experiences can have in students' academic careers.

  6. Participant Outcomes from Methods of Recruitment for Videogame Research.

    Science.gov (United States)

    Ryan, Courtney; Dadabhoy, Hafza; Baranowski, Tom

    2018-02-01

    The most productive methods of recruitment for a videogame for health (G4H) trial are not known. Success or failure of recruitment methods has been reported for a variety of clinical trials, but few specifically for G4H trials. This study's goal was to recruit 444 overweight or obese (body mass index percentile between the 84.5th-99.4th percentiles) children between the ages of 10-12 years. The article reports the results of different methods of participant recruitment. Participants had to agree to three fasting blood samples (baseline, immediately after, and 2 months later); be willing to wear an accelerometer for 7 days at each assessment; read and speak English fluently (because the games were in English); have no history of any condition that would affect what he/she could eat or how much physical activity he/she could get; and have an eligible home computer purchased in the last 5 years with high-speed internet. Hardware criteria reflected the types of computers upon which Diab-Nano could be effectively played. Recruitment was conducted over a 35-month period and included electronic media, print advertising, community recruitment, and an internal volunteer list. Respondents were guided to a web-based screening questionnaire that asked for source of hearing about the study. Although diverse recruitment methods were used, slow recruitment resulted in obtaining only 45% of the recruitment goal (n = 199). Electronic media (e.g., radio, television, and internet), which reached millions of targeted parents, resulted in only 76 respondents, of whom 13 became participants; print media (e.g., magazine, newsletter/newspaper, and mail), which also reached large numbers of parents, resulted in 192 respondents, of whom 19 became participants; community recruitment (e.g., school, friend or family, doctors office, flyer, work, community program) resulted in 162 respondents, of whom 38 became participants; and the internal volunteer list resulted in 413 respondents, of

  7. Ethical Issues Affecting Human Participants in Community College Research

    Science.gov (United States)

    Wurtz, Keith

    2011-01-01

    The increasing demand of constituents to conduct analyses in order to help inform the decision-making process has led to the need for Institutional Research (IR) guidelines for community college educators. One method of maintaining the quality of research conducted by IR staff is to include professional development about ethics. This article…

  8. Triangulation, Respondent Validation, and Democratic Participation in Mixed Methods Research

    Science.gov (United States)

    Torrance, Harry

    2012-01-01

    Over the past 10 years or so the "Field" of "Mixed Methods Research" (MMR) has increasingly been exerting itself as something separate, novel, and significant, with some advocates claiming paradigmatic status. Triangulation is an important component of mixed methods designs. Triangulation has its origins in attempts to validate research findings…

  9. Disaster Preparation and Recovery: Lessons from Research on Resilience in Human Development

    Directory of Open Access Journals (Sweden)

    Ann S. Masten

    2008-06-01

    Full Text Available Four decades of theory and research on resilience in human development have yielded informative lessons for planning disaster response and recovery. In developmental theory, resilience following disaster could take multiple forms, including stress resistance, recovery, and positive transformation. Empirical findings suggest that fundamental adaptive systems play a key role in the resilience of young people facing diverse threats, including attachment, agency, intelligence, behavior regulation systems, and social interactions with family, peers, school, and community systems. Although human resilience research emphasizes the adaptive well-being of particular individuals, there are striking parallels in resilience theory across the developmental and ecological sciences. Preparing societies for major disasters calls for the integration of human research on resilience with the theory and knowledge gained from other disciplines concerned with resilience in complex, dynamic systems, and particularly those systems that interact with human individuals as disaster unfolds.

  10. A Grounded Theory Approach in a Branding Context: Challenges and lessons learnt during the research process

    Directory of Open Access Journals (Sweden)

    Anne Rindell, PhD.

    2009-06-01

    Full Text Available The purpose of this paper is to discuss challenges and lessons learnt when conducting a classic grounded theory study in a marketing context. The paper focuses on two specific challenges that were met during a specific research process. The first challenge related to positioning the study, namely, specifying“what the study is a study of”. The second challenge concerned the choice between formal or substantive theory. Both challenges were accentuated as the emerged core category concerned a phenomenon that has caught less attention in marketing, that is, the temporal dimension in corporate images. By the temporal dimension in corporate images we mean that corporate images often have roots in earlier times through consumer memories. In other words, consumers are not tabula rasa, that is, blank sheets of paper on which communication messages can be printed. Rather, consumers have a pre-understanding of the company that works as an interpretation framework for company actions in the present. The lessons learnt from this research process can be summarized as “stay faithful to the data”, “write memos on issues you reflect upon although they might be in another substantial field” as they might become useful later, and, “look into thinking in other disciplines” as disciplines do not develop equally.

  11. Group Health's participation in a shared decision-making demonstration yielded lessons, such as role of culture change.

    Science.gov (United States)

    King, Jaime; Moulton, Benjamin

    2013-02-01

    In 2007 Washington State became the first state to enact legislation encouraging the use of shared decision making and decision aids to address deficiencies in the informed-consent process. Group Health volunteered to fulfill a legislated mandate to study the costs and benefits of integrating these shared decision-making processes into clinical practice across a range of conditions for which multiple treatment options are available. The Group Health Demonstration Project, conducted during 2009-11, yielded five key lessons for successful implementation, including the synergy between efforts to reduce practice variation and increase shared decision making; the need to support modifications in practice with changes in physician training and culture; and the value of identifying best implementation methods through constant evaluation and iterative improvement. These lessons, and the legislated provisions that supported successful implementation, can guide other states and health care institutions moving toward informed patient choice as the standard of care for medical decision making.

  12. Northern Illinois U. students participate in particle research

    CERN Multimedia

    Goluszka, J

    2003-01-01

    University students are diligently working on a variety of high-tech research topics designed to improve digital technology. A typical project is "evaluating scintillation material for digital hadron calorimeters" (1 page).

  13. The Culture of Translational Science Research: Participants' Stories.

    Science.gov (United States)

    Kotarba, Joseph A; Wooten, Kevin; Freeman, Jean; Brasier, Allan R

    2013-01-01

    We apply a symbolic interactionist framework and a qualitative methodology to the examination of the everyday reality of translational science research (TSR). This is a growing scientific movement that aims to facilitate the efficient application of basic research to clinical service design and delivery. We describe the emerging culture of translational research at a mid-size medical center that received a Clinical and Translational Science Award from the National Institutes of Health. The stories related by scientists, clinicians, and students in interviews indicate that they make sense of the emerging inter- and cross-disciplinary, team-oriented culture of TSR through the refinement and redefinition of the significant symbols that inform their work while they attempt to master translational research by addressing the dilemmas it produces for them and their work. We see the strength, currency, adaptability, and energy of the core self-definition of "scientist" to be significant in shaping the emerging culture of translational research. We conclude by celebrating the value of interpretive ethnography for evaluation research.

  14. BiteScis: Connecting K-12 teachers with science graduate students to produce lesson plans on modern science research

    Science.gov (United States)

    Battersby, Cara

    2016-01-01

    Many students graduate high school having never learned about the process and people behind modern science research. The BiteScis program addresses this gap by providing easily implemented lesson plans that incorporate the whos, whats, and hows of today's scienctific discoveries. We bring together practicing scientists (motivated graduate students from the selective communicating science conference, ComSciCon) with K-12 science teachers to produce, review, and disseminate K-12 lesson plans based on modern science research. These lesson plans vary in topic from environmental science to neurobiology to astrophysics, and involve a range of activities from laboratory exercises to art projects, debates, or group discussion. An integral component of the program is a series of short, "bite-size" articles on modern science research written for K-12 students. The "bite-size" articles and lesson plans will be made freely available online in an easily searchable web interface that includes association with a variety of curriculum standards. This ongoing program is in its first year with about 15 lesson plans produced to date.

  15. 2010 NASA-AIHEC Summer Research Experience: Students and Teachers from TCUs Engage in GIS/Remote Sensing with Researchers and Scientists--Lessons Learned

    Science.gov (United States)

    Rock, B. N.; Carlson, M.; Mell, V.; Maynard, N.

    2010-12-01

    Researchers and scientists from the University of New Hampshire (UNH) and the Confederated Tribes of Grand Ronde joined with the National Aeronautics and Space Administration (NASA) to develop and present a Summer Research Experience (SRE) that trained 21 students and 10 faculty members from 9 of the 36 Tribal Colleges and Universities (TCUs) which comprise the American Indian Higher Education Council (AIHEC). The 10-week SRE program was an inquiry-based introduction to remote sensing, geographic information systems (GIS) and field science research methods. Teams of students and TCU faculty members developed research projects that explored climate change, energy development, contamination of water and air, fire damage in forests, and lost cultural resources on tribal lands. The UNH-Grand Ronde team presented SRE participants with an initial three-week workshop in the use of research tools and development of research projects. During the following seven weeks, the team conferred weekly with SRE participants to monitor and support their progress. Rock provided specific guidance on numerous scientific questions. Carlson coached students on writing and organization and provided laboratory analysis of foliar samples. Mell provided support on GIS technology. Eight of the SRE college teams completed substantial research projects by the end of the SRE while one other team developed a method for future research. Seventeen students completed individual research papers, oral presentations and posters. Nineteen students and all teachers maintained regular and detailed communication with the UNH-Grand Ronde mentors throughout the ten-week program. The SRE produced several significant lessons learned regarding outreach educational programs in inquiry-based science and technology applications. These include: Leadership by an active research scientist (Rock) inspired and supported students and teachers in developing their own scientific inquiries. An intensive schedule of

  16. New research on women's low participation in science and technology

    Science.gov (United States)

    Stout, Jane

    It is well known that women have historically been and continue to be grossly underrepresented in technical fields (i.e., the physical sciences, engineering, and computing). This presentation will address the following research questions: What dissuades women from entering into a technical career track, and what are women's experiences like within technical fields? At the same time, this presentation will acknowledge a shortcoming of decades of social science research and interventions designed to improve women's interest and persistence in technical fields: a narrow definition of ``women''. Given that the majority of women in colleges and universities (i.e., the typical sites of social science research) tend to be affluent and/or White, STEM education research that relies on convenience samples at colleges and universities paints a skewed picture of gender issues in technical fields. This presentation will showcase research findings that call into question conventional conceptions of gender disparities in technical fields. Specifically, the presentation will emphasize the importance of recognizing that women constitute more than their gender; women come from a diverse array of backgrounds, which no doubt play a role in the experience of being a woman in technical fields. By understanding the experiences of women from a broad array of demographics groups, the STEM education community can develop a corresponding set of strategies to recruit and retain women with diverse interests, experiences, and values (e.g., first generation versus second college students; women of different racial/ethnic backgrounds). The aim of this presentation is to promote social science research and interventions that acknowledge the nuanced experiences of diverse women in technical fields, in order to address the seemingly intractable problem of women's underrepresentation in technical fields. NSF DUE-1431112, NSF CNS-1246649.

  17. Researcher-participant positioning and the discursive work of categories

    DEFF Research Database (Denmark)

    Ringer, Agnes

    2013-01-01

    This paper reports on methodological experiences from an ethnographic study in psychiatric institutions in Denmark. Drawing on a poststructural framework and newer discussions within qualitative research that view methodological problems as sources of data, the paper analyzes how the challenges...... positions in between. At the same time, it is shown that the patients find ways to resist the objectifying practices of the researcher as well as of the mental health services. The conclusions are discussed against recent attempts within the mental health services to promote a more patient-centered approach...

  18. Some observations in university participation in nuclear engineering research

    International Nuclear Information System (INIS)

    Eickhoff, K.G.; Hill, K.M.

    1980-01-01

    A general discussion is presented on the kinds of problem which with suitable co-ordination would form appropriate topics for university research. R and D work can be done in-house, or with an industrial contractor, or with a university or polytechnic. The criteria are examined. Involvement by universities and polytechnics, and topics and location, are considered further. (U.K.)

  19. Participant Observation, Anthropology Methodology and Design Anthropology Research Inquiry

    Science.gov (United States)

    Gunn, Wendy; Løgstrup, Louise B.

    2014-01-01

    Within the design studio, and across multiple field sites, the authors compare involvement of research tools and materials during collaborative processes of designing. Their aim is to trace temporal dimensions (shifts/ movements) of where and when learning takes place along different sites of practice. They do so by combining participant…

  20. Listening to Children's Voices: Children as Participants in Research

    Science.gov (United States)

    McTavish, Marianne; Streelasky, Jodi; Coles, Linda

    2012-01-01

    Recently, researchers have begun to investigate the ways contemporary childhoods are being shaped by a range of multimodal communicative practices (Kress, "Literacy in the new media age," Routledge, New York, 2003; Lankshear and Knobel, "New literacies: Changing knowledge and classroom learning," Open University Press, Milton…

  1. PERCEIVED DISCOMFORT LEVELS IN HEALTHY CHILDREN PARTICIPATING IN VACCINE RESEARCH

    NARCIS (Netherlands)

    Westra, Anna E.; van Gils, Elske J. M.; Aarts, Fenne; Rodenburg, Gerwin D.; Veenhoven, Reinier H.; Hak, Eelko; Scharloo, Margreet; Sukhai, Ram N.; Wit, Jan M.; de Beaufort, Inez; Sanders, Elisabeth (Lieke) A. M.

    WHEN ASSESSING THE RISKS OF A research protocol, review boards need to consider not only the possible harms but also the expected discomfort levels caused by the various study procedures. However, data on how children experience various study procedures are scarce. This study assessed perceived

  2. Multimodality and Children's Participation in Classrooms: Instances of Research

    Science.gov (United States)

    Newfield, Denise

    2011-01-01

    This paper describes how language and literacy classrooms became more participatory, agentive spaces through addressing a central issue in teaching and learning: the forms of representation through which children make their meanings. It reconsiders pedagogic research in under-resourced Gauteng classrooms during the period 1994-2005, during the…

  3. Reporting intellectual capital in health care organizations: specifics, lessons learned, and future research perspectives.

    Science.gov (United States)

    Veltri, Stefania; Bronzetti, Giovanni; Sicoli, Graziella

    2011-01-01

    This article analyzes the concept of intellectual capital (IC) in the health sector sphere by studying the case of a major nonprofit research organization in this sector, which has for some time been publishing IC reports. In the last few years, health care organizations have been the object of great attention in the implementation and transfer of managerial models and tools; however, there is still a lack of attention paid to the strategic management of IC as a fundamental resource for supporting and enhancing performance improvement dynamics. The main aim of this article is to examine the IC reporting model used by the Center of Molecular Medicine (CMM), a Swedish health organization which is an outstanding benchmark in reporting its IC. We also consider the specifics of IC reporting for health organizations, the lessons learned by analyzing CMM's IC reporting, and future perspectives for research.

  4. Preventing plane-assisted suicides through the lessons of research on homicide and suicide-homicide.

    Science.gov (United States)

    Rice, Timothy R; Sher, Leo

    2016-08-01

    The Germanwings 9525 incident drew significant attention to the 'plane-assisted suicide' construct, yet little scientific literature exists on this topic. This paper reviews the available literature and applies lessons from the suicide-homicide and men's mental health literature to better understand this construct from a scientific perspective. A systematic review of the relevant clinical literature was undertaken. Multiple lines of evidence suggests the applicability and relevance of suicide-homicide research and men's mental health to the plane-assisted suicide phenomenon. Plane-assisted suicides occur within an overwhelmingly male, middle aged population who, in addition to suicide, commit large scale acts of murder. Issues of divorce, separation, and threats to masculinity appear integral to an effective prevention program. Further research in the understanding of plane-assisted suicide as a product of neuropsychiatric disorder may advance such prevention efforts and have the opportunity to reduce the loss of life in future tragedies.

  5. Broadening Participation in the Geosciences through Participatory Research

    Science.gov (United States)

    Pandya, R. E.; Hodgson, A.; Wagner, R.; Bennett, B.

    2009-12-01

    In spite of many efforts, the geosciences remain less diverse than the overall population of the United States and even other sciences. This lack of diversity threatens the quality of the science, the long-term viability of our workforce, and the ability to leverage scientific insight in service of societal needs. Drawing on new research into diversity specific to geosciences, this talk will explore underlying causes for the lack of diversity in the atmospheric and related sciences. Causes include the few geoscience majors available at institutions with large minority enrollment; a historic association of the geosciences with extractive industries which are negatively perceived by many minority communities, and the perception that science offers less opportunity for service than other fields. This presentation suggests a new approach - community-based participatory research (CBPR). In CBPR, which was first applied in the field of rural development and has been used for many years in biomedical fields, scientists and community leaders work together to design a research agenda that simultaneously advances basic understanding and addresses community priorities. Good CBPR integrates research, education and capacity-building. A CBRP approach to geoscience can address the perceived lack of relevance and may start to ameliorate a history of negative experiences of geosciences. Since CBPR works best when it is community-initiated, it can provide an ideal place for Minority-Serving Institutions to launch their own locally-relevant programs in the geosciences. The presentation will conclude by describing three new examples of CBPR. The first is NCAR’s partnerships to explore climate change and its impact on Tribal lands. The second approach a Denver-area listening conference that will identify and articulate climate-change related priorities in the rapidly-growing Denver-area Latino community. Finally, we will describe a Google-funded project that brings together

  6. Ecological Momentary Assessment in Behavioral Research: Addressing Technological and Human Participant Challenges.

    Science.gov (United States)

    Burke, Lora E; Shiffman, Saul; Music, Edvin; Styn, Mindi A; Kriska, Andrea; Smailagic, Asim; Siewiorek, Daniel; Ewing, Linda J; Chasens, Eileen; French, Brian; Mancino, Juliet; Mendez, Dara; Strollo, Patrick; Rathbun, Stephen L

    2017-03-15

    Ecological momentary assessment (EMA) assesses individuals' current experiences, behaviors, and moods as they occur in real time and in their natural environment. EMA studies, particularly those of longer duration, are complex and require an infrastructure to support the data flow and monitoring of EMA completion. Our objective is to provide a practical guide to developing and implementing an EMA study, with a focus on the methods and logistics of conducting such a study. The EMPOWER study was a 12-month study that used EMA to examine the triggers of lapses and relapse following intentional weight loss. We report on several studies that informed the implementation of the EMPOWER study: (1) a series of pilot studies, (2) the EMPOWER study's infrastructure, (3) training of study participants in use of smartphones and the EMA protocol and, (4) strategies used to enhance adherence to completing EMA surveys. The study enrolled 151 adults and had 87.4% (132/151) retention rate at 12 months. Our learning experiences in the development of the infrastructure to support EMA assessments for the 12-month study spanned several topic areas. Included were the optimal frequency of EMA prompts to maximize data collection without overburdening participants; the timing and scheduling of EMA prompts; technological lessons to support a longitudinal study, such as proper communication between the Android smartphone, the Web server, and the database server; and use of a phone that provided access to the system's functionality for EMA data collection to avoid loss of data and minimize the impact of loss of network connectivity. These were especially important in a 1-year study with participants who might travel. It also protected the data collection from any server-side failure. Regular monitoring of participants' response to EMA prompts was critical, so we built in incentives to enhance completion of EMA surveys. During the first 6 months of the 12-month study interval, adherence to

  7. Strong preference for mint snus flavor among research participants

    Directory of Open Access Journals (Sweden)

    Liane M. Schneller

    2017-12-01

    Full Text Available Introduction: The Family Smoking Prevention and Tobacco Control Act of 2009 allows the US FDA to regulate tobacco products, including the banning of characterizing flavors, such as fruit and candy, cigarettes. The availability of mint flavored snus may facilitate the use of the product if consumers find it more palatable with respect to taste, odor, pleasantness, and intensity. Methods: This study assessed product evaluation (PES, odor identification, odor intensity, and odor hedonics among 151 smokers enrolled in a clinical trial of snus substitution for cigarettes. Results: Far more participants selected Winterchill (N=110 than Robust (N=41, regardless of their menthol cigarette smoking status. Nicotine dependence was higher among those who selected Winterchill (4 vs 3 on Fagerstrom scale, p=0.017. Those who found Winterchill to be more satisfying, less aversive, and having a more intense, more pleasant odor than Robust were substantially more likely to select Winterchill for their one week trial. Conclusions: Findings indicate that subjective effect measures such as the PES and DEQ are capable of differentiating products in terms of flavor preference, and that smokers express a strong preference for mint flavored snus.

  8. Characteristics and lessons learned from practice-based research networks (PBRNs in the United States

    Directory of Open Access Journals (Sweden)

    Keller S

    2012-09-01

    Full Text Available Melinda M Davis,1,2 Sara Keller,1 Jennifer E DeVoe,1,3 Deborah J Cohen11Department of Family Medicine, 2Oregon Rural Practice-based Research Network, Oregon Health & Science University, Portland, OR, USA; 3OCHIN Practice-based Research Network, Portland, OR, USAAbstract: Practice-based research networks (PBRNs are organizations that involve practicing clinicians in asking and answering clinically relevant research questions. This review explores the origins, characteristics, funding, and lessons learned through practice-based research in the United States. Primary care PBRNs emerged in the USA in the 1970s. Early studies explored the etiology of common problems encountered in primary care practices (eg, headache, miscarriage, demonstrating the gap between research conducted in controlled specialty settings and real-world practices. Over time, national initiatives and an evolving funding climate have shaped PBRN development, contributing to larger networks, a push for shared electronic health records, and the use of a broad range of research methodologies (eg, observational studies, pragmatic randomized controlled trials, continuous quality improvement, participatory methods. Today, there are over 160 active networks registered with the Agency for Healthcare Research and Quality's PBRN Resource Center that engage primary care clinicians, pharmacists, dentists, and other health care professionals in research and quality-improvement initiatives. PBRNs provide an important laboratory for encouraging collaborative research partnerships between academicians and practices or communities to improve population health, conduct comparative effectiveness and patient-centered outcomes research, and study health policy reform. PBRNs continue to face critical challenges that include: (1 adapting to a changing landscape; (2 recruiting and retaining membership; (3 securing infrastructure support; (4 straddling two worlds (academia and community and managing

  9. Establishing community partnerships to support late-life anxiety research: lessons learned from the Calmer Life project.

    Science.gov (United States)

    Jameson, John Paul; Shrestha, Srijana; Escamilla, Monica; Clark, Sharonda; Wilson, Nancy; Kunik, Mark; Zeno, Darrell; Harris, Toi B; Peters, Alice; Varner, Ivory L; Scantlebury, Carolyn; Scott-Gurnell, Kathy; Stanley, Melinda

    2012-01-01

    This article outlines the development of the Calmer Life project, a partnership established between researchers and faith-based and social service organizations to examine the effectiveness of cognitive behavioral therapy (CBT) incorporating religious/spiritual components for older African Americans in low-income communities. The program was designed to bypass several barriers to delivery of CBT within the specified community; it allows multimodal delivery (in person or by telephone) that occurs outside traditional mental health settings through faith-based organizations and neighborhood community centers. It includes religion/spirituality as an element, dependent upon the preference of the participant, and is modular, so that people can select the skills they wish to learn. Established relationships within the community were built upon, and initial meetings were held in community settings, allowing feedback from community organizations. This ongoing program is functioning successfully and has strengthened relationships with community partners and facilitated increased availability of education and services in the community. The lessons learned in establishing these partnerships are outlined. The growth of effectiveness research for late-life anxiety treatments in underserved minority populations requires development of functional partnerships between academic institutions and community stakeholders, along with treatment modifications to effectively address barriers faced by these consumers. The Calmer Life project may serve as a model.

  10. Participant recruitment and retention in longitudinal preconception randomized trials: lessons learnt from the Calcium And Pre-eclampsia (CAP) trial.

    Science.gov (United States)

    Lawrie, Theresa A; Betrán, Ana Pilar; Singata-Madliki, Mandisa; Ciganda, Alvaro; Hofmeyr, G Justus; Belizán, José M; Purnat, Tina Dannemann; Manyame, Sarah; Parker, Catherine; Cormick, Gabriela

    2017-10-26

    The preconception period has the potential to influence pregnancy outcomes and randomized controlled trials (RCTs) are needed to evaluate a variety of potentially beneficial preconception interventions. However, RCTs commencing before pregnancy have significant participant recruitment and retention challenges. The Calcium And Pre-eclampsia trial (CAP trial) is a World Health Organization multi-country RCT of calcium supplementation commenced before pregnancy to prevent recurrent pre-eclampsia in which non-pregnant participants are recruited and followed up until childbirth. This sub-study explores recruitment methods and preconception retention of participants of the CAP trial to inform future trials. Recruiters at the study sites in Argentina, South Africa and Zimbabwe completed post-recruitment phase questionnaires on recruitment methods used. Qualitative data from these questionnaires and quantitative data on pre-pregnancy trial visit attendance and pregnancy rates up to September 2016 are reported in this paper. RStudio (Version 0.99.903 https://www.rstudio.org ) statistical software was used for summary statistics. Between July 2011 and 8 September 2016, 1354 women with previous pre-eclampsia were recruited. Recruitment took 2 years longer than expected and was facilitated mainly through medical record/register and maternity ward/clinic-based strategies. Recruiters highlighted difficulties associated with inadequate medical records, redundant patient contact details, and follow-up of temporarily ineligible women as some of the challenges faced. Whilst the attendance rates at pre-pregnancy visits were high (78% or more), visits often occurred later than scheduled. Forty-five percent of participants became pregnant (614/1354), 33.5% (454/1354) within 1 year of randomization. In preconception trials, both retrospective and prospective methods are useful for recruiting eligible women with certain conditions. However, these are time-consuming in low

  11. Moving beyond 'not enough time': factors influencing paediatric clinicians' participation in research.

    Science.gov (United States)

    Paget, Simon P; Caldwell, Patrina H Y; Murphy, Joyce; Lilischkis, Kimberley J; Morrow, Angie M

    2017-03-01

    Increasing the amount of clinical research that occurs in healthcare settings has been identified as an important mechanism to improve healthcare outcomes. While clinicians are key persons in achieving this aim, research participation amongst clinicians is generally limited. To identify the factors (barriers and facilitators) influencing clinician research participation and determine how professional culture impacts on these factors. Forty clinicians working at a tertiary children's hospital participated in six discipline-specific focus groups. Thematic analysis was performed using an inductive process based in grounded theory. Four major themes (cultural factors, personal factors, resources and solutions) and 16 subthemes were identified. Participants described how the current health system discourages clinician research. They reported that their research participation requires personal sacrifice of their own time; income or career progression. Research participation was seen to compete with other priorities in clinicians' workload and is disadvantaged because of the primacy of clinical work and the lack of immediate tangible benefit from research projects. Solutions suggested by our participants included better alignment of clinical and research goals, improved availability of research mentors and collaborative opportunities. Nurses and allied health professionals reported a changing professional culture that values research. Only doctors identified research participation to be important for career progression. For clinician research participation to flourish, significant changes in healthcare structure and priorities will be required that result in research becoming more embedded in healthcare delivery. Initiatives to improve collaboration between clinicians and universities may also support these aims. © 2016 Royal Australasian College of Physicians.

  12. Lessons learned from bacterial transport research at the South Oyster Site

    Energy Technology Data Exchange (ETDEWEB)

    Scheibe, T.; Hubbard, S.S.; Onstott, T.C.; DeFlaun, M.F.

    2011-04-01

    This paper provides a review of bacterial transport experiments conducted by a multi-investigator, multi-institution, multi-disciplinary team of researchers under the auspices of the U. S. Department of Energy (DOE). The experiments were conducted during the time period 1999-2001 at a field site near the town of Oyster, Virginia known as the South Oyster Site, and included four major experimental campaigns aimed at understanding and quantifying bacterial transport in the subsurface environment. Several key elements of the research are discussed here: (1) quantification of bacterial transport in physically, chemically and biologically heterogeneous aquifers, (2) evaluation of the efficacy of conventional colloid filtration theory, (3) scale effects in bacterial transport, (4) development of new methods for microbial enumeration and screening for low adhesion strains, (5) application of novel hydrogeophysical techniques for aquifer characterization, and (6) experiences regarding management of a large field research effort. Lessons learned are summarized in each of these areas. The body of literature resulting from South Oyster Site research has been widely cited and continues to influence research into the controls exerted by aquifer heterogeneity on reactive transport (including microbial transport). It also served as a model (and provided valuable experience) for subsequent and ongoing highly-instrumented field research efforts conducted by DOE-sponsored investigators.

  13. Planning adaptation for food and farming: lessons from 40 year's research

    Energy Technology Data Exchange (ETDEWEB)

    Reid, Hannah; Chambwera, Muyeye; Murray, Laurel

    2012-05-15

    Local farmers and pastoralists in poor countries have long coped with droughts, floods and variable rainfall patterns. This first-hand experience is invaluable for those working on climate change adaptation policies, but how do we access it? The International Institute for Environment and Development (IIED) has 40 years' experience working alongside vulnerable communities to help inform regional, national and global policies. Our research has shown that measures to increase climate change resilience must view food, energy, water and waste management systems as interconnected and mutually dependent. This holistic approach must also be applied to economic analysis on adaptation planning. Similarly, it is vital to use traditional knowledge and management skills, which can further support adaptation planning. Taking these lessons into account, we can then address the emerging policy challenges that we face.

  14. Storytelling in community intervention research: lessons learned from the walk your heart to health intervention.

    Science.gov (United States)

    LeBron, Alana M; Schulz, Amy J; Bernal, Cristina; Gamboa, Cindy; Wright, Conja; Sand, Sharon; Valerio, Melissa; Caver, Deanna

    2014-01-01

    Contextually and culturally congruent interventions are urgently needed to reduce racial, ethnic, and socioeconomic inequities in physical activity and cardiovascular disease. To examine a community-based participatory research (CBPR) process that incorporated storytelling into a physical activity intervention, and consider implications for reducing health inequities. We used a CBPR process to incorporate storytelling in an existing walking group intervention. Stories conveyed social support and problem-solving intervention themes designed to maintain increases in physical activity over time, and were adapted to the walking group context, group dynamics, challenges, and traditions. After describing of the CBPR process used to adapt stories to walking group sites, we discuss challenges and lessons learned regarding the adaptation and implementation of stories to convey key intervention themes. A CBPR approach to incorporating storytelling to convey intervention themes offers an innovative and flexible strategy to promote health toward the elimination of health inequities.

  15. The disclosure of diagnosis codes can breach research participants' privacy.

    Science.gov (United States)

    Loukides, Grigorios; Denny, Joshua C; Malin, Bradley

    2010-01-01

    De-identified clinical data in standardized form (eg, diagnosis codes), derived from electronic medical records, are increasingly combined with research data (eg, DNA sequences) and disseminated to enable scientific investigations. This study examines whether released data can be linked with identified clinical records that are accessible via various resources to jeopardize patients' anonymity, and the ability of popular privacy protection methodologies to prevent such an attack. The study experimentally evaluates the re-identification risk of a de-identified sample of Vanderbilt's patient records involved in a genome-wide association study. It also measures the level of protection from re-identification, and data utility, provided by suppression and generalization. Privacy protection is quantified using the probability of re-identifying a patient in a larger population through diagnosis codes. Data utility is measured at a dataset level, using the percentage of retained information, as well as its description, and at a patient level, using two metrics based on the difference between the distribution of Internal Classification of Disease (ICD) version 9 codes before and after applying privacy protection. More than 96% of 2800 patients' records are shown to be uniquely identified by their diagnosis codes with respect to a population of 1.2 million patients. Generalization is shown to reduce further the percentage of de-identified records by less than 2%, and over 99% of the three-digit ICD-9 codes need to be suppressed to prevent re-identification. Popular privacy protection methods are inadequate to deliver a sufficiently protected and useful result when sharing data derived from complex clinical systems. The development of alternative privacy protection models is thus required.

  16. Use of community engagement strategies to increase research participation in practice-based research networks (PBRNs).

    Science.gov (United States)

    Spears, William; Tsoh, Janice Y; Potter, Michael B; Weller, Nancy; Brown, Anthony E; Campbell-Voytal, Kimberly; Getrich, Christina M; Sussman, Andrew L; Pascoe, John; Neale, Anne Victoria

    2014-01-01

    Practice-based research networks (PBRNs) are increasingly encouraged to use community engagement approaches. The extent to which PBRNs engage clinic and community partners in strategies to recruit and retain participants from their local communities (specifically racial/ethnic communities) is the focus of this study. The design was a cross-sectional survey of PBRN directors in the United States. Survey respondents indicated whether their research network planned for, implemented, and has capacity for activities that engage clinic and community partners in 7 recommended strategies organized into study phases, called the cycle of trust. The objectives of the national survey were to (1) describe the extent to which PBRNs across the United States routinely implement the strategies recommended for recruiting diverse patient groups and (2) identify factors associated with implementing the recommended strategies. The survey response rate was 63%. Activities that build trust often are used more with clinic partners than with community partners. PBRNs that adopt engagement strategies when working with clinic and community partners have less difficulty in recruiting diverse populations. Multivariate analysis showed that the targeting racial/ethnic communities for study recruitment, Clinical and Translational Science Award affiliation, and planning to use community engagement strategies were independent correlates of PBRN implementation of the recommended strategies. PBRNs that successfully engage racial/ethnic communities as research partners use community engagement strategies. New commitments are needed to support PBRN researchers in developing relationships with the communities in which their patients live. Stable PBRN infrastructure funding that appreciates the value of maintaining community engagement between funded studies is critical to the research enterprise that values translating research findings into generalizable care models for patients in the community.

  17. U.S. Department of Energy student research participation programs. Underrepresented minorities in U.S. Department of Energy student research participation programs

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1996-03-01

    The purpose of this study was to identify those particular aspects of US Department of Energy (DOE) research participation programs for undergraduate and graduate students that are most associated with attracting and benefiting underrepresented minority students and encouraging them to pursue careers in science, engineering, and technology. A survey of selected former underrepresented minority participants, focus group analysis, and critical incident analysis serve as the data sources for this report. Data collected from underrepresented minority participants indicate that concerns expressed and suggestions made for conducting student research programs at DOE contractor facilities are not remarkably different from those made by all participants involved in such student research participation programs. With the exception of specific suggestions regarding recruitment, the findings summarized in this report can be interpreted to apply to all student research participants in DOE national laboratories. Clearly defined assignments, a close mentor-student association, good communication, and an opportunity to interact with other participants and staff are those characteristics that enhance any educational program and have positive impacts on career development.

  18. A Study Protocol for Applying User Participation and Co-Learning-Lessons Learned from the eBalance Project.

    Science.gov (United States)

    Åberg, Anna Cristina; Halvorsen, Kjartan; From, Ingrid; Bruhn, Åsa Bergman; Oestreicher, Lars; Melander-Wikman, Anita

    2017-05-10

    The eBalance project is based on the idea that serious exergames-i.e., computer gaming systems with an interface that requires physical exertion to play-that are well adapted to users, can become a substantial part of a solution to recognized problems of insufficient engagement in fall-prevention exercise and the high levels of fall-related injuries among older people. This project is carried out as a collaboration between eight older people who have an interest in balance training and met the inclusion criteria of independence in personal activities of daily living, access to and basic knowledge of a computer, four staff working with the rehabilitation of older adults, and an interdisciplinary group of six research coordinators covering the areas of geriatric care and rehabilitation, as well as information technology and computer science. This paper describes the study protocol of the project's initial phase which aims to develop a working partnership with potential users of fall-prevention exergames, including its conceptual underpinnings. The qualitative methodology was inspired by an ethnographical approach implying combining methods that allowed the design to evolve through the study based on the participants' reflections. A participatory and appreciative action and reflection (PAAR) approach, accompanied by inquiries inspired by the Normalization Process Theory (NPT) was used in interactive workshops, including exergame testing, and between workshop activities. Data were collected through audio recordings, photos, and different types of written documentation. The findings provide a description of the methodology thus developed and applied. They display a methodology that can be useful for the design and development of care service and innovations for older persons where user participation is in focus.

  19. Undergraduate Research as a Process for STEM Teaching and Learning Systemic Change: Lessons Learned from the Council on Undergraduate Research NSF CCLI and TUES Projects

    Science.gov (United States)

    Ambos, E. L.; Havholm, K. G.; Malachowski, M.; Osborn, J.; Karukstis, K.

    2013-12-01

    For more than seven years, the Council on Undergraduate Research (CUR), the primary organization supporting programs, services, and advocacy for undergraduate research, has been working with support from the NSF's Division of Undergraduate Education (DUE) to enhance, sustain, and institutionalize undergraduate research in diverse STEM disciplines and higher education settings. The Council on Undergraduate Research comprises more than 9000 individual and 670 institutional members within a divisional structure that includes geosciences, as well as 11 other thematic areas. Through its most recent grant: 'Transformational Learning through Undergraduate Research: Comprehensive Support for Faculty, Institutions, State Systems and Consortia' (NSF DUE CCLI III Award #09-20275), CUR has been collaborating with six higher education systems, each selected after a rigorous national application process in 2010 and 2011. These six systems, which collectively represent 79 individual institutions, are the Council of Public Liberal Arts Colleges (COPLAC), University of Wisconsin System (UWS), California State University System (CSU), City University of New York (CUNY), Great Lakes Colleges Association (GLCA), and Pennsylvania State System of Higher Education (PASSHE). The more than 350 participants of faculty and senior-level administrators from the six systems are engaged in shared multi-faceted and multi-year professional development experiences. Teams from each system attended customized institutes facilitated by CUR experts in 2011-2012, during which the teams developed specific action plans focused on institutionalizing undergraduate research on their campus and within their system. The systems were reconvened as a group a year after the first institute, to chart progress toward achieving their goals. Based on interviews and surveys with participants, campus teams are making substantial progress toward implementation of robust undergraduate research programs, and are making

  20. Nurturing transdisciplinary research - lessons from live experiments in prioritising and supporting novel risk science (Invited)

    Science.gov (United States)

    Rees, J.; Armstrong, C.; Barclay, J.; Moores, A.; Whitaker, D.

    2013-12-01

    The benefits of specialization over the last 150 years have meant that science has evolved within several distinct disciplines, such as physical, social or environmental. These have generated their own cultures, languages, agendas, institutions, measures of success and cohorts of suitably branded scientists. However, we increasingly see that society and the environment are exposed to many complex, interdependent and rapidly changing risks - not only from natural hazards, but also those associated with fast expanding and ageing populations, highly interconnected and interdependent economies, rapid climate change, and increasingly limited resources. Risks derived from such interacting drivers commonly generate non-linear effects or repercussions and future risks may be very different to those of today; significantly, they span many traditional science disciplines. We thus need to have a fresh look at transdisciplinary risk science, bring in novel ideas and new blood. But what are the best practical ways of sowing the seeds and fertilizing such approaches? The presentation describes novel practical steps to achieve this, all related to building and resourcing transdisciplinary research which incorporates natural hazard science within the UK over the last 5 years. These comprise instruments to prioritise science gaps and provide funding for transdisciplinary research by a) Academic research funders - the Research Councils UK (RCUK) Risk Research Network and current research programmes; b) Government and non-governmental research funders - the Living with Environmental Change Initiative, and the UK Flooding and coastal erosion risk management research strategy - and the UK Collaborative for Development Science sponsored Disasters Research Group; and c) Business funding - through integrated risk modelling for the insurance industry. Whilst young, all these initiatives are healthy and seek to build a portfolio of small scale initiatives that will breed success and develop

  1. Learning lessons from operational research in infectious diseases: can the same model be used for noncommunicable diseases in developing countries?

    Directory of Open Access Journals (Sweden)

    Bosu WK

    2014-12-01

    Full Text Available William K Bosu Department of Epidemics and Disease Control, West African Health Organisation, Bobo-Dioulasso, Burkina Faso Abstract: About three-quarters of global deaths from noncommunicable diseases (NCDs occur in developing countries. Nearly a third of these deaths occur before the age of 60 years. These deaths are projected to increase, fueled by such factors as urbanization, nutrition transition, lifestyle changes, and aging. Despite this burden, there is a paucity of research on NCDs, due to the higher priority given to infectious disease research. Less than 10% of research on cardiovascular diseases comes from developing countries. This paper assesses what lessons from operational research on infectious diseases could be applied to NCDs. The lessons are drawn from the priority setting for research, integration of research into programs and routine service delivery, the use of routine data, rapid-assessment survey methods, modeling, chemoprophylaxis, and the translational process of findings into policy and practice. With the lines between infectious diseases and NCDs becoming blurred, it is justifiable to integrate the programs for the two disease groups wherever possible, eg, screening for diabetes in tuberculosis. Applying these lessons will require increased political will, research capacity, ownership, use of local expertise, and research funding. Keywords: infectious diseases, noncommunicable diseases, operational research, developing countries, integration

  2. Measuring the Impact of Research: Lessons from the UK's Research Excellence Framework 2014.

    Directory of Open Access Journals (Sweden)

    Gobinda Chowdhury

    Full Text Available Impactful academic research plays a stellar role in society, pressing to ask the question of how one measures the impact created by different areas of academic research. Measuring the societal, cultural, economic and scientific impact of research is currently the priority of the National Science Foundation, European Commission and several research funding agencies. The recently concluded United Kingdom's national research quality exercise, the Research Excellence Framework (REF 2014, which piloted impact assessment as part of the overall evaluation offers a lens to view how impact of research in different disciplines can be measured. Overall research quality was assessed through quality of outputs, 'impact' and research environment. We performed two studies using the REF 2014 as a case study. The first study on 363 Impact Case Studies (ICSs submitted in 5 research areas (UoAs reveals that, in general, the impact scores were constructed upon a combination of factors i.e. quantity of quartile-one (Q1 publications, quantity and value of grants/income, number of researchers stated in the ICSs, spin-offs created, discoveries/patents and presentation of esteem data, informing researchers/ academics of the factors to consider in order to achieve a better impact score in research impact assessments. However, there were differences among disciplines in terms of the role played by the factors in achieving their overall scores for the ICSs. The outcome of this study is thus a set of impact indicators, and their relationship with the overall score of impact of research in different disciplines as determined in REF2014, which would in the first instance provide some answers to impact measures that would be useful for researchers in different disciplines. The second study extracts the general themes of impact reported by universities by performing a word frequency analysis in all the ICSs submitted in the five chosen research areas, which were substantially

  3. Decision making process and factors contributing to research participation among general practitioners: A grounded theory study.

    Science.gov (United States)

    Tong, Seng Fah; Ng, Chirk Jenn; Lee, Verna Kar Mun; Lee, Ping Yein; Ismail, Irmi Zarina; Khoo, Ee Ming; Tahir, Noor Azizah; Idris, Iliza; Ismail, Mastura; Abdullah, Adina

    2018-01-01

    The participation of general practitioners (GPs) in primary care research is variable and often poor. We aimed to develop a substantive and empirical theoretical framework to explain GPs' decision-making process to participate in research. We used the grounded theory approach to construct a substantive theory to explain the decision-making process of GPs to participate in research activities. Five in-depth interviews and four focus group discussions were conducted among 21 GPs. Purposeful sampling followed by theoretical sampling were used to attempt saturation of the core category. Data were collected using semi-structured open-ended questions. Interviews were recorded, transcribed verbatim and checked prior to analysis. Open line-by-line coding followed by focus coding were used to arrive at a substantive theory. Memoing was used to help bring concepts to higher abstract levels. The GPs' decision to participate in research was attributed to their inner drive and appreciation for primary care research and their confidence in managing their social and research environments. The drive and appreciation for research motivated the GPs to undergo research training to enhance their research knowledge, skills and confidence. However, the critical step in the GPs' decision to participate in research was their ability to align their research agenda with priorities in their social environment, which included personal life goals, clinical practice and organisational culture. Perceived support for research, such as funding and technical expertise, facilitated the GPs' participation in research. In addition, prior experiences participating in research also influenced the GPs' confidence in taking part in future research. The key to GPs deciding to participate in research is whether the research agenda aligns with the priorities in their social environment. Therefore, research training is important, but should be included in further measures and should comply with GPs' social

  4. Turning Participatory Microbiome Research into Usable Data: Lessons from the American Gut Project.

    Science.gov (United States)

    Debelius, Justine W; Vázquez-Baeza, Yoshiki; McDonald, Daniel; Xu, Zhenjiang; Wolfe, Elaine; Knight, Rob

    2016-03-01

    The role of the human microbiome is the subject of continued investigation resulting in increased understanding. However, current microbiome research has only scratched the surface of the variety of healthy microbiomes. Public participation in science through crowdsourcing and crowdfunding microbiome research provides a novel opportunity for both participants and investigators. However, turning participatory science into publishable data can be challenging. Clear communication with the participant base and among researchers can ameliorate some challenges. Three major aspects need to be considered: recruitment and ongoing interaction, sample collection, and data analysis. Usable data can be maximized through diligent participant interaction, careful survey design, and maintaining an open source pipeline. While participatory science will complement rather than replace traditional avenues, it presents new opportunities for studies in the microbiome and beyond.

  5. Turning Participatory Microbiome Research into Usable Data: Lessons from the American Gut Project

    Directory of Open Access Journals (Sweden)

    Justine W. Debelius

    2015-10-01

    Full Text Available The role of the human microbiome is the subject of continued investigation resulting in increased understanding. However, current microbiome research has only scratched the surface of the variety of healthy microbiomes. Public participation in science through crowdsourcing and crowdfunding microbiome research provides a novel opportunity for both participants and investigators. However, turning participatory science into publishable data can be challenging. Clear communication with the participant base and among researchers can ameliorate some challenges. Three major aspects need to be considered: recruitment and ongoing interaction, sample collection, and data analysis. Usable data can be maximized through diligent participant interaction, careful survey design, and maintaining an open source pipeline. While participatory science will complement rather than replace traditional avenues, it presents new opportunities for studies in the microbiome and beyond.

  6. Using Classroom Recordings in Educational History Research. An East German Civics Lesson

    Science.gov (United States)

    Jehle, May; Blessing, Benita

    2014-01-01

    Students learned in civics lessons in the German Democratic Republic (GDR, or East Germany) that their socialist society uniquely guaranteed all individuals the right to work, and that, as good socialists, they had the duty to take on socially meaningful work. Using the example of a video recording of an East German civics lesson and its…

  7. Lessons from Oil Pollution Research: Consensus, Controversy, and Education of Policy Makers and the Public.

    Science.gov (United States)

    Farrington, J. W.

    2007-12-01

    Controversies concerning scientific research findings, consensus of a majority of expert scientists, and attempts by vested interest groups to offer alternative interpretations from the consensus with the goal of influencing policy makers" and the public's understanding is not a new phenomenon with respect to complex environmental issues. For example, controversies about new scientific research findings from studies of oil spills and other aspects of petroleum and petroleum refined product inputs, fates and effects in the marine environment intensified in the late 1960s to early 1970s and continues today as evidenced by ongoing debates surrounding the Exxon Valdez Oil Spill. This paper provides an overview of the interactions between authentic new scientific findings with respect to oil pollution in the marine environment in the late 1960s and early 1970s, the consensus gained in the ensuing years by continued research, and through various science - policy processes, and a spectrum of concomitant public education efforts. Lessons learned from this ongoing process may be instructive to current debates in other arenas of environmental science.

  8. Communicating Climate Change: Lessons Learned from a Researcher-Museum Collaboration †

    Science.gov (United States)

    Parker, Christopher T.; Cockerham, Debbie; Foss, Ann W.

    2018-01-01

    The need for science education and outreach is great. However, despite the ever-growing body of available scientific information, facts are often misrepresented to or misunderstood by the general public. This can result in uninformed decisions that negatively impact society at both individual and community levels. One solution to this problem is to make scientific information more available to the public through outreach programs. Most outreach programs, however, focus on health initiatives, STEM programs, or young audiences exclusively. This article describes a collaboration between the Research and Learning Center at the Fort Worth Museum of Science and History and an interdisciplinary team of researchers from the Dallas–Fort Worth (DFW) metroplex area. The collaboration was a pilot effort of a science communication fellowship and was designed to train researchers to effectively convey current science information to the public with a focus on lifelong learning. We focus on the broader idea of a university-museum collaboration that bridges the science communication gap as we outline the process of forming this collaboration, lessons we learned from the process, and directions that can support future collaborations. PMID:29904536

  9. Strategies to successfully recruit and engage clinical nurses as participants in qualitative clinical research.

    Science.gov (United States)

    Coyne, Elisabeth; Grafton, Eileen; Reid, Alayne

    2016-12-01

    Research conducted in the clinical area promotes the delivery of evidence-based patient care. Involving nurses as participants in research is considered essential to link patient care with evidence-based interventions. However recruitment is influenced by nurses' competing demands and understanding engagement strategies may assist future research. This reflective analysis aimed to understand influencing factors and strategies that support successful recruitment nurses in clinical research. A reflective analysis of research notes and focus group data from research with oncology nurses was completed. This research identified that gaining support from key staff, understanding work constraints and developing a rapport with nurses is important. Establishing clear relevance and benefits of the research and being flexible with research requirements enabled nurses to participate in the research. Clear information and a willingness to accommodate the demands and dynamic nature of the environment, ensures ongoing support and engagement of nurses in the clinical setting as participants in research.

  10. An Online Student Research Institute Designed to Engage Students in Original Scientific Research Using State of the Art Technologies to Increase Participation in STEM Fields

    Science.gov (United States)

    Freed, R.

    2015-12-01

    Affordable and accessible technology has advanced tremendously in the last decade allowing educational paradigms to change dramatically to more student-centered, experiential and project-based models. Additionally, as the need to increase the number of students entering STEM fields in the United States becomes more critical it is imperative to understand the factors that determine student career pathways and to provide opportunities for students to experience, understand and pursue scientific endeavors. The Institute for Student Astronomical Research was founded in order to provide a means for high school and early undergraduate students to engage in meaningful and relevant scientific research. A major goal is to give students the experience of true-to-life scientific investigation from the planning and proposal stages to the data collection and analysis, writing up and presenting of scientific findings and finally to the publication of results. Furthermore, the Institute is designed to collect data on how involvement in the Science Research Seminars influences educational and career choices for students in longitudinal studies following participants for several years. In the first year of the online course of the Institute 10 student teams conducted original research and published their findings in peer-reviewed journals. Lessons learned from the pilot year are being applied to the Institute as efforts to scale up the program are underway.

  11. A Study Protocol for Applying User Participation and Co-Learning—Lessons Learned from the eBalance Project

    Science.gov (United States)

    Åberg, Anna Cristina; Halvorsen, Kjartan; From, Ingrid; Bruhn, Åsa Bergman; Oestreicher, Lars; Melander-Wikman, Anita

    2017-01-01

    The eBalance project is based on the idea that serious exergames—i.e., computer gaming systems with an interface that requires physical exertion to play—that are well adapted to users, can become a substantial part of a solution to recognized problems of insufficient engagement in fall-prevention exercise and the high levels of fall-related injuries among older people. This project is carried out as a collaboration between eight older people who have an interest in balance training and met the inclusion criteria of independence in personal activities of daily living, access to and basic knowledge of a computer, four staff working with the rehabilitation of older adults, and an interdisciplinary group of six research coordinators covering the areas of geriatric care and rehabilitation, as well as information technology and computer science. This paper describes the study protocol of the project’s initial phase which aims to develop a working partnership with potential users of fall-prevention exergames, including its conceptual underpinnings. The qualitative methodology was inspired by an ethnographical approach implying combining methods that allowed the design to evolve through the study based on the participants’ reflections. A participatory and appreciative action and reflection (PAAR) approach, accompanied by inquiries inspired by the Normalization Process Theory (NPT) was used in interactive workshops, including exergame testing, and between workshop activities. Data were collected through audio recordings, photos, and different types of written documentation. The findings provide a description of the methodology thus developed and applied. They display a methodology that can be useful for the design and development of care service and innovations for older persons where user participation is in focus. PMID:28489067

  12. Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants: a systematic review

    NARCIS (Netherlands)

    Bemelmans, S.A.S.A.; K. Tromp (Krista); E.M. Bunnik (Eline); Milne, R.J.; Badger, S.; C. Brayne (Carol); M.H.N. Schermer (Maartje); Richard, E.

    2016-01-01

    textabstractBackground: Current Alzheimer's disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological,

  13. Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants: a systematic review

    NARCIS (Netherlands)

    Bemelmans, S.AS.A.; Tromp, K.; Bunnik, E.M.; Milne, R.J.; Badger, S.; Brayne, C.; Schermer, M.H.; Richard, E.

    2016-01-01

    BACKGROUND: Current Alzheimer's disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological, behavioral and

  14. Psychological, behavioral and social effects of disclosing Alzheimer's disease biomarkers to research participants : A systematic review

    NARCIS (Netherlands)

    Bemelmans, S.A.; K. Tromp (Krista); E.M. Bunnik (Eline); Milne, R.J.; Badger, S.; C. Brayne (Carol); M.H.N. Schermer (Maartje); E. Richard (Edo)

    2016-01-01

    markdownabstractBACKGROUND: Current Alzheimer's disease (AD) research initiatives focus on cognitively healthy individuals with biomarkers that are associated with the development of AD. It is unclear whether biomarker results should be returned to research participants and what the psychological,

  15. A partnership model for a reflective narrative for researcher and participant.

    Science.gov (United States)

    Murphy, Gill; Peters, Kath; Wilkes, Lesley; Jackson, Debra

    2016-09-01

    Background Conceptual frameworks are important to ensure a clear underpinning research philosophy. Further, the use of conceptual frameworks can support structured research processes. Aim To present a partnership model for a reflective narrative for researcher and participant. Discussion This paper positions the underpinning philosophical framework of the model in social constructionism (the idea that jointly constructed understandings form the basis for shared assumptions) and narrative enquiry. The model has five stages - study design, invitation to share a research space and partnership, a metaphorical research space, building a community story, and reading the community story to others. Core principles of the partnership model are continual reflection by the researcher, potential reflections by participants, reciprocal sharing, and partnership in research. Conclusion A 'trajectory of self' for both participants and researchers can be enhanced within reflective partnerships. Implications for practice This model can be applied to studies that use narrative enquiry and are seeking a humanistic approach with participant engagement.

  16. 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.

  17. 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

  18. Sustaining Community-University Partnerships: Lessons learned from a participatory research project with elderly Chinese

    Directory of Open Access Journals (Sweden)

    XinQi Dong

    2011-11-01

    Full Text Available The strength of community-engaged research has been well documented in public health literature. It is recognised as a useful approach for eliminating health disparities by linking research and practice. While the framework of community-engaged research encompasses a broad range of research collaborations, community-based participatory research (CBPR places most emphasis on involving the community as a full, equitable partner throughout the collaboration. Despite growing interest in and demand for community-university partnerships, less attention is given to the issue of partnership sustainability. The purpose of this article is to present the challenges faced in sustaining a community-university partnership when conducting a CBPR project with an elderly Chinese population in Chicago’s Chinatown. Lessons and strategies learned from the cultural and linguistic complexities of the Chinese community are also detailed. In addition, based on a well-accepted sustainability conceptual framework, we reflect on the initial stage, mid-term actions and long-term goals of developing partnership sustainability. Working with the Chinese community required trust and respect for its unique cultural values and diversity. The cultural, social and environmental contexts within which the partnership operated served as critical forces for long-term sustainability: a culturally sensitive approach is instrumental in sustaining community-university partnership. Also discussed are the significant implications for evidence-based, impact-driven partnerships to develop culturally appropriate strategies to meet the needs of diverse populations. Keywords Community-based participatory research, community health partnerships, health promotion, Chinese Americans, ageing

  19. 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.

  20. TRANSVAC research infrastructure - Results and lessons learned from the European network of vaccine research and development.

    Science.gov (United States)

    Geels, Mark J; Thøgersen, Regitze L; Guzman, Carlos A; Ho, Mei Mei; Verreck, Frank; Collin, Nicolas; Robertson, James S; McConkey, Samuel J; Kaufmann, Stefan H E; Leroy, Odile

    2015-10-05

    TRANSVAC was a collaborative infrastructure project aimed at enhancing European translational vaccine research and training. The objective of this four year project (2009-2013), funded under the European Commission's (EC) seventh framework programme (FP7), was to support European collaboration in the vaccine field, principally through the provision of transnational access (TNA) to critical vaccine research and development (R&D) infrastructures, as well as by improving and harmonising the services provided by these infrastructures through joint research activities (JRA). The project successfully provided all available services to advance 29 projects and, through engaging all vaccine stakeholders, successfully laid down the blueprint for the implementation of a permanent research infrastructure for early vaccine R&D in Europe. Copyright © 2015. Published by Elsevier Ltd.

  1. Recruitment of multiple stakeholders to health services research: Lessons from the front lines

    Directory of Open Access Journals (Sweden)

    Brouwers Melissa C

    2010-05-01

    Full Text Available Abstract Background Self-administered surveys are an essential methodological tool for health services and knowledge translation research, and engaging end-users of the research is critical. However, few documented accounts of the efforts invested in recruitment of multiple different stakeholders to one health services research study exist. Here, we highlight the challenges of recruiting key stakeholders (policy-makers, clinicians, guideline developers to a Canadian Institutes of Health Research (CIHR funded health services research (HSR study aimed to develop an updated and refined version of a guideline appraisal tool, the AGREE. Methods Using evidence-based methods of recruitment, our goal was to recruit 192 individuals: 80 international guideline developers, 80 Canadian clinicians and 32 Canadian policy/decision-makers. We calculated the participation rate and the recruitment efficiency. Results We mailed 873 invitation letters. Of 838 approached, our participation rate was 29%(240 and recruitment efficiency, 19%(156. One policy-maker manager did not allow policy staff to participate in the study. Conclusions Based on the results from this study, we suggest that future studies aiming to engage similar stakeholders in HSR over sample by at least 5 times to achieve their target sample size and allow for participant withdrawals. We need continued efforts to communicate the value of research between researchers and end-users of research (policy-makers, clinicians, and other researchers, integration of participatory research strategies, and promotion of the value of end-user involvement in research. Future research to understand methods of improving recruitment efficiency and engaging key stakeholders in HSR is warranted.

  2. Recruitment of multiple stakeholders to health services research: lessons from the front lines.

    Science.gov (United States)

    Kho, Michelle E; Rawski, Ellen; Makarski, Julie; Brouwers, Melissa C

    2010-05-13

    Self-administered surveys are an essential methodological tool for health services and knowledge translation research, and engaging end-users of the research is critical. However, few documented accounts of the efforts invested in recruitment of multiple different stakeholders to one health services research study exist. Here, we highlight the challenges of recruiting key stakeholders (policy-makers, clinicians, guideline developers) to a Canadian Institutes of Health Research (CIHR) funded health services research (HSR) study aimed to develop an updated and refined version of a guideline appraisal tool, the AGREE. Using evidence-based methods of recruitment, our goal was to recruit 192 individuals: 80 international guideline developers, 80 Canadian clinicians and 32 Canadian policy/decision-makers. We calculated the participation rate and the recruitment efficiency. We mailed 873 invitation letters. Of 838 approached, our participation rate was 29%(240) and recruitment efficiency, 19%(156). One policy-maker manager did not allow policy staff to participate in the study. Based on the results from this study, we suggest that future studies aiming to engage similar stakeholders in HSR over sample by at least 5 times to achieve their target sample size and allow for participant withdrawals. We need continued efforts to communicate the value of research between researchers and end-users of research (policy-makers, clinicians, and other researchers), integration of participatory research strategies, and promotion of the value of end-user involvement in research. Future research to understand methods of improving recruitment efficiency and engaging key stakeholders in HSR is warranted.

  3. Ethics is for human subjects too: participant perspectives on responsibility in health research.

    Science.gov (United States)

    Cox, Susan M; McDonald, Michael

    2013-12-01

    Despite the significant literature as well as energy devoted to ethical review of research involving human subjects, little attention has been given to understanding the experiences of those who volunteer as human subjects. Why and how do they decide to participate in research? Is research participation viewed as a form of social responsibility or as a way of obtaining individual benefits? What if anything do research subjects feel they are owed for participation? And what do they feel that they owe the researcher? Drawing on in-depth individual interviews conducted in 2006 and 2007 with 41 subjects who participated in a variety of types of health research in Canada, this paper focuses on subject perspectives on responsibility in research. Highlighting the range of ways that subjects describe their involvement in research and commitments to being a 'good' subject, we present a typology of narratives that sheds new light on the diverse meanings of research participation. These narratives are not mutually exclusive or prescriptive but are presented as ideal types typifying a set of circumstances and values. As such, they collectively illuminate a range of motivations expressed by human subjects as well as potential sources of vulnerability. The typology adds a new dimension to the literature in this area and has significant implications for researchers seeking more human-subject centred approaches to research recruitment and retention, as well as research ethics boards trying to better anticipate the perspectives of prospective participants. Copyright © 2013 Elsevier Ltd. All rights reserved.

  4. Heuristic decision-making about research participation in children with cystic fibrosis.

    Science.gov (United States)

    Christofides, Emily; Dobson, Jennifer A; Solomon, Melinda; Waters, Valerie; O'Doherty, Kieran C

    2016-08-01

    Traditional perspectives on informed consent assume that when faced with decisions about whether to participate in research, individuals behave according to principles of classical rationality, taking into account all available information to weigh risks and benefits to come to a decision that is optimal for them. However, theoretical and empirical research in psychology suggests that people may not make decisions in this way. Less is known about decision-making processes as they pertain to participating in biomedical research, particularly when the participants are children. We sought to better understand research decision processes especially in children who tend to participate extensively in research due to chronic illness. To learn more about children's decision-making in this context, we interviewed 19 young patients with cystic fibrosis (male n = 7; female n = 12) aged 8-18 years (M = 13 years) at a children's hospital in Canada between April and August 2013. We found that participants generally had a default approach to participation decisions, which they attributed to their parents' attitudes to research, experiences of having grown up participating in research, trusting the researchers, and wanting to help. Most of our participants made the decision to participate in research based on a heuristic with a baseline to say "yes", subject to change based on aspects of the research or particular preferences. In particular, concerns with the procedure, unwillingness to talk about cystic fibrosis, logistical challenges, and perceptions of risk all influenced the decision, as did the perceived importance or personal relevance of the research. Our study illustrates that rather than conducting risk/benefit analyses, participants tended to adopt a heuristic-like approach, consistent with decision theories that view heuristic decision-making as ecologically rational. Copyright © 2016 Elsevier Ltd. All rights reserved.

  5. Lessons and Perspectives on Balancing Research and Diversity-Oriented Service

    Science.gov (United States)

    Emanuel, R. E.

    2012-12-01

    Diversity among scientists is necessary to bring together the range of personal and professional perspectives required to address many grand challenges of research in the earth and environmental sciences. Despite gains in recent decades, African Americans and American Indians remain severely under-represented at the graduate level in the environmental sciences, posing an impediment to ethnic diversity in the ranks of professional scientists. For example, the US National Science Foundation reported that in one recent year African Americans received 1,041 (3%) and American Indians received 120 (0.4%) of the 33,284 science and engineering doctoral degrees granted in the US. These fractions are smaller than African American and American Indian representation among bachelor's degree recipients, and they are smaller than representation in the general US population. Lessons from multiple disciplines (chemistry, medicine and geoscience) suggest that group learning, longitudinal mentoring and networking opportunities are critical elements in the retention of under-represented minority students and their conversion to professionals in scientific fields. With this in mind, I have worked to incorporate these elements into my own research program, which moved recently from a predominantly undergraduate institution to a research extensive university. I discuss the outcomes, successes and challenges of a recent project engaging 14 students and 5 faculty mentors from 6 institutions, including 2 HBCUs, in a yearlong study of secondary ecosystem succession in North Carolina. I frame this discussion in the general context of my own experience, as an American Indian academic, balancing diversity-related service and more traditionally recognized forms of scholarship (i.e. teaching and research) at both predominantly undergraduate and research extensive universities.

  6. Linking Government to Academic Research: Lessons from the American Progressive Era

    Directory of Open Access Journals (Sweden)

    Valentin Filip

    2015-05-01

    Full Text Available This paper intends to explore why and how the U.S. government involved academic scholars in the policy-making process during the Progressive Era, with a focus on President Woodrow Wilson‘s formation and use of the Inquiry. It further attempts to draw upon the lessons learned from this case study in history in order to stimulate new thinking with regard to the interest of the governmental decision-makers in exploiting academic potential. The paper rests mainly on the research dedicated to Progressivism and Wilsonianism and it consists of an analysis based on the literature review and the case study of The Inquiry. The conclusions highlight the impact that the intellectual potential from within universities and research centres might have in informing policies, revealing alternative tracks and finally supporting the process as a whole. Thus, the paper aims to offer ―food for thought‖ for further debates, raise the awareness on the issue of benefiting from a stronger and deeper government-academia relationship and nurture the mutual interest for partnership and even possible integration.

  7. Sophisticated lessons from simple organisms: appreciating the value of curiosity-driven research

    Directory of Open Access Journals (Sweden)

    Robert J. Duronio

    2017-12-01

    Full Text Available For hundreds of years, biologists have studied accessible organisms such as garden peas, sea urchins collected at low tide, newt eggs, and flies circling rotten fruit. These organisms help us to understand the world around us, attracting and inspiring each new generation of biologists with the promise of mystery and discovery. Time and time again, what we learn from such simple organisms has emphasized our common biological origins by proving to be applicable to more complex organisms, including humans. Yet, biologists are increasingly being tasked with developing applications from the known, rather than being allowed to follow a path to discovery of the as yet unknown. Here, we provide examples of important lessons learned from research using selected non-vertebrate organisms. We argue that, for the purpose of understanding human disease, simple organisms cannot and should not be replaced solely by human cell-based culture systems. Rather, these organisms serve as powerful discovery tools for new knowledge that could subsequently be tested for conservation in human cell-based culture systems. In this way, curiosity-driven biological research in simple organisms has and will continue to pay huge dividends in both the short and long run for improving the human condition.

  8. Using research data to impact consumer protection legislation: lessons learned from CITY100 dissemination efforts.

    Science.gov (United States)

    Hoerster, Katherine D; Mayer, Joni A

    2013-09-01

    The Correlates of Indoor Tanning in Youth (CITY100) project evaluated individual, built-environmental, and policy correlates of indoor tanning by adolescents in the 100 most populous US cities. After CITY100's completion, the research team obtained supplemental dissemination funding to strategically share data with stakeholders. The primary CITY100 dissemination message was to encourage state-level banning of indoor tanning among youth. We created a user-friendly website to broadly share the most relevant CITY100 data. Journalists were a primary target audience, as were health organizations that would be well positioned to advocate for legislative change. CITY100 data were used to pass the first US state law to ban indoor tanning among those under 18 (CA, USA), as well as in other legislative advocacy activities. This paper concludes with lessons learned from CITY100 dissemination activities that we hope will encourage more health researchers to proactively address policy implications of their data and to design relevant, effective dissemination strategies.

  9. Soil and land use research in Europe: Lessons learned from INSPIRATION bottom-up strategic research agenda setting.

    Science.gov (United States)

    Bartke, Stephan; Boekhold, Alexandra E; Brils, Jos; Grimski, Detlef; Ferber, Uwe; Gorgon, Justyna; Guérin, Valérie; Makeschin, Franz; Maring, Linda; Nathanail, C Paul; Villeneuve, Jacques; Zeyer, Josef; Schröter-Schlaack, Christoph

    2018-05-01

    We introduce the INSPIRATION bottom-up approach for the development of a strategic research agenda for spatial planning, land use and soil-sediment-water-system management in Europe. Research and innovation needs were identified by more than 500 European funders, endusers, scientists, policy makers, public administrators and consultants. We report both on the concept and on the implementation of the bottom-up approach, provide a critique of the process and draw key lessons for the development of research agendas in the future. Based on identified strengths and weaknesses we identified as key opportunities and threats 1) a high ranking and attentiveness for the research topics on the political agenda, in press and media or in public awareness, 2) availability of funding for research, 3) the resources available for creating the agenda itself, 4) the role of the sponsor of the agenda development, and 5) the continuity of stakeholder engagement as bases for identification of windows of opportunity, creating ownership for the agenda and facilitating its implementation. Our derived key recommendations are 1) a clear definition of the area for which the agenda is to be developed and for the targeted user, 2) a conceptual model to structure the agenda, 3) making clear the expected roles, tasks, input formats regarding the involvement and communication with the stakeholders and project partners, 4) a sufficient number of iterations and checks of the agenda with stakeholders to insure completeness, relevance and creation of co-ownership for the agenda, and 5) from the beginning prepare the infrastructure for the network to implement the agenda. Copyright © 2017 Elsevier B.V. All rights reserved.

  10. Lessons learned from setting up the NOWESP research data base: Experiences in an interdisciplinary research project

    Science.gov (United States)

    Radach, Günther; Gekeler, Jens

    1996-09-01

    Research carried out within the framework of the MAST project NOWESP (North-West European Shelf Programme) was based on a multi-parameter data set of existing marine data, relevant for estimating trends, variability and fluxes on the Northwest European Shelf. The data sets were provided by the partners of the project. Additional data sets were obtained from several other institutions. During the project, the data were organized in the NOWESP Research Data Base (NRDB), for which a special data base scheme was defined that was capable of storing different types of marine data. Data products, like time series and interpolated fields, were provided to the partners for analysis (Radach et al. [1997]). After three years of project time, the feasibility of such an approach is discussed. Ways of optimizing data access and evaluation are proposed. A project-oriented Research Data Base is a useful tool because of its flexibility and proximity to the research being carried out. However, several requirements must be met to derive optimum benefits from this type of service unit. Since this task usually is carried out by a limited number of staff, an early start of project data management is recommended. To enable future projects to succeed in an analogous compilation of relevant data for their use, as performed in NOWESP, the task of organizing the data sets for any short-term project should be shared between a research data base group and a national or international data centre whose experience and software could be used. It must be ensured that only quality controlled data sets from the individual data-produ cing projects are delivered to the national data centres. It is recommended that data quality control should be performed by the originators and/or data centres before delivering any data sets to the research data base. Delivery of the (full) data sets should be checked and their quality should be approved by authorized data centres.

  11. Quantitative valuation placed by children and teenagers on participation in two hypothetical research scenarios.

    Science.gov (United States)

    Funnell, Dan; Fertleman, Caroline; Carrey, Liz; Brierley, Joe

    2012-11-01

    For paediatric medicine to advance, research must be conducted specifically with children. Concern about poor recruitment has led to debate about payments to child research participants. Although concerns about undue influence by such 'compensation' have been expressed, it is useful to determine whether children can relate the time and inconvenience associated with participation to the value of payment offered. This study explores children's ability to determine fair remuneration for research participation, and reviews payments to children participating in research. Forty children were interviewed before outpatient visits at two London Hospitals: Great Ormond Street Children's Hospital and the Whittington Hospital District General Hospital. Children were asked to value their involvement in two hypothetical research scenarios - the first an 'additional blood sample', the second also involving daily oral oil capsules taken for a fortnight before further venesection. Background knowledge about familiarity with money, and experience with hospitalisation was assessed. The mean valuation of involvement in the second scenario (£13.18) was higher than in the first (£2.84) (pfair valuation for participation in medical research. The monetary sums are influenced by the time and inconvenience involved in the research, and by the extent of recent experience with hospital procedures. The authors review current ethical thinking regarding payments to child research participants and suggest that a fair wage model might be an ethically acceptable way to increase participation of children in research.

  12. Key Stakeholders' Perceptions of Motivators for Research Participation Among Individuals Who Are Incarcerated.

    Science.gov (United States)

    Hanson, Bridget L; Faulkner, Sherilyn A; Brems, Christiane; Corey, Staci L; Eldridge, Gloria D; Johnson, Mark E

    2015-10-01

    Understanding motivations of research participants is crucial for developing ethical research protocols, especially for research with vulnerable populations. Through interviews with 92 institutional review board members, prison administrators, research ethicists, and researchers, we explored key stakeholders' perceptions of what motivates incarcerated individuals to participate in research. Primary motivators identified were a desire to contribute to society, gaining knowledge and health care, acquiring incentives, and obtaining social support. The potential for undue influence or coercion were also identified as motivators. These results highlight the need for careful analysis of what motivates incarcerated individuals to participate in research as part of developing or reviewing ethically permissible and responsible research protocols. Future research should expand this line of inquiry to directly include perspectives of incarcerated individuals. © The Author(s) 2015.

  13. Factors associated with willingness to participate in biospecimen research among Chinese Americans.

    Science.gov (United States)

    Gao, Wanzhen; Ma, Grace X; Tan, Yin; Fang, Carolyn; Weaver, JoEllen; Jin, Ming; Lai, Philip

    2014-04-01

    A paucity of information exists on the recruitment of Asian Americans for biospecimen research. Although studies show that Chinese Americans are at high risk for hepatitis B virus (HBV) infection, little is known about their willingness to participate in HBV-related biospecimen research and how knowledge, attitudes, and cultural factors impact their willingness to participate. The study was guided by Community-Based Participatory Research principles. Data were derived from an assessment study on HBV-related biospecimen research participation among Chinese Americans in the Philadelphia region. The assessment was conducted with 415 Chinese Americans recruited from eight Chinese community-based organizations. Cultural beliefs, knowledge, and attitudes toward biospecimen research were examined for associations with their willingness to participate in biospecimen banking research. Overall, 192 (46.3%) of 415 participants who completed the assessment indicated they were willing to participate if they were invited to donate blood to be frozen and stored for future HBV biospecimen studies. Cultural variables significant in bivariate analysis included collectivism, knowledge about biospecimen research, and Yin-Yang beliefs. Fatalism and individualism were not associated with participation willingness. In multivariate analysis, age, health care attitudes, and trust were significantly associated with willingness to participate in biospecimen banking research. Asian American communities have little knowledge of biospecimen banking and will benefit from educational campaigns that emphasize collective benefits and attitudes towards and trust in the health care system. Understanding cultural factors is important for improving Chinese Americans' knowledge, awareness, and intentions of participation in biospecimen research. Similar efforts need to be undertaken to develop culturally appropriate educational intervention programs to increase participation in biospecimen research

  14. Factors Associated with Willingness to Participate in Biospecimen Research Among Chinese Americans

    Science.gov (United States)

    Gao, Wanzhen; Tan, Yin; Fang, Carolyn; Weaver, JoEllen; Jin, Ming; Lai, Philip

    2014-01-01

    A paucity of information exists on the recruitment of Asian Americans for biospecimen research. Although studies show that Chinese Americans are at high risk for hepatitis B virus (HBV) infection, little is known about their willingness to participate in HBV-related biospecimen research and how knowledge, attitudes, and cultural factors impact their willingness to participate. The study was guided by Community-Based Participatory Research principles. Data were derived from an assessment study on HBV-related biospecimen research participation among Chinese Americans in the Philadelphia region. The assessment was conducted with 415 Chinese Americans recruited from eight Chinese community-based organizations. Cultural beliefs, knowledge, and attitudes toward biospecimen research were examined for associations with their willingness to participate in biospecimen banking research. Overall, 192 (46.3%) of 415 participants who completed the assessment indicated they were willing to participate if they were invited to donate blood to be frozen and stored for future HBV biospecimen studies. Cultural variables significant in bivariate analysis included collectivism, knowledge about biospecimen research, and Yin-Yang beliefs. Fatalism and individualism were not associated with participation willingness. In multivariate analysis, age, health care attitudes, and trust were significantly associated with willingness to participate in biospecimen banking research. Asian American communities have little knowledge of biospecimen banking and will benefit from educational campaigns that emphasize collective benefits and attitudes towards and trust in the health care system. Understanding cultural factors is important for improving Chinese Americans' knowledge, awareness, and intentions of participation in biospecimen research. Similar efforts need to be undertaken to develop culturally appropriate educational intervention programs to increase participation in biospecimen research

  15. Research-Design Model for Professional Development of Teachers: Designing Lessons with Physics Education Research

    Science.gov (United States)

    Eylon, Bat-Sheva; Bagno, Esther

    2006-01-01

    How can one increase the awareness of teachers to the existence and importance of knowledge gained through physics education research (PER) and provide them with capabilities to use it? How can one enrich teachers' physics knowledge and the related pedagogical content knowledge of topics singled out by PER? In this paper we describe a professional…

  16. Views of potential research participants on financial conflicts of interest: barriers and opportunities for effective disclosure.

    Science.gov (United States)

    Weinfurt, Kevin P; Friedman, Joëlle Y; Allsbrook, Jennifer S; Dinan, Michaela A; Hall, Mark A; Sugarman, Jeremy

    2006-09-01

    There is little guidance regarding how to disclose researchers' financial interests to potential research participants. To determine what potential research participants want to know about financial interests, their capacity to understand disclosed information and its implications, and the reactions of potential research participants to a proposed disclosure statement. Sixteen focus groups in 3 cities, including 6 groups of healthy adults, 6 groups of adults with mild chronic illness, 1 group of parents of healthy children, 1 group of parents of children with leukemia or brain tumor, 1 group of adults with heart failure, and 1 group of adults with cancer. Focus group discussions covered a range of topics including financial relationships in clinical research, whether people should be told about them, and how they should be told. Audio-recordings of focus groups were transcribed, verified, and coded for analysis. Participants wanted to know about financial interests, whether or not those interests would affect their participation. However, they varied in their desire and ability to understand the nature and implications of financial interests. Whether disclosure was deemed important depended upon the risk of the research. Trust in clinicians was also related to views regarding disclosure. If given the opportunity to ask questions during the consent process, some participants would not have known what to ask; however, after the focus group sessions, participants could identify information they would want to know. Financial interests are important to potential research participants, but obstacles to effective disclosure exist.

  17. A Personal Touch: The Most Important Strategy for Recruiting Latino Research Participants.

    Science.gov (United States)

    García, Alexandra A; Zuñiga, Julie A; Lagon, Czarina

    2017-07-01

    People from non-White racial groups and other underserved populations, including Latinos, are frequently reluctant to participate in research. Yet their participation into research is foundational to producing information that researchers and health care providers need to address health disparities. The purpose of this article is to describe challenges we have encountered along with culturally relevant strategies we used in five research studies to recruit Mexican American participants from community settings, some of whom were also of low socioeconomic status. We found that the most effective recruitment strategies reflect the common cultural values of personalismo, simpátia, confianza, respeto, and familismo.

  18. Clinical verification of genetic results returned to research participants: findings from a Colon Cancer Family Registry.

    Science.gov (United States)

    Laurino, Mercy Y; Truitt, Anjali R; Tenney, Lederle; Fisher, Douglass; Lindor, Noralane M; Veenstra, David; Jarvik, Gail P; Newcomb, Polly A; Fullerton, Stephanie M

    2017-11-01

    The extent to which participants act to clinically verify research results is largely unknown. This study examined whether participants who received Lynch syndrome (LS)-related findings pursued researchers' recommendation to clinically verify results with testing performed by a CLIA-certified laboratory. The Fred Hutchinson Cancer Research Center site of the multinational Colon Cancer Family Registry offered non-CLIA individual genetic research results to select registry participants (cases and their enrolled relatives) from 2011 to 2013. Participants who elected to receive results were counseled on the importance of verifying results at a CLIA-certified laboratory. Twenty-six (76.5%) of the 34 participants who received genetic results completed 2- and 12-month postdisclosure surveys; 42.3% of these (11/26) participated in a semistructured follow-up interview. Within 12 months of result disclosure, only 4 (15.4%) of 26 participants reported having verified their results in a CLIA-certified laboratory; of these four cases, all research and clinical results were concordant. Reasons for pursuing clinical verification included acting on the recommendation of the research team and informing future clinical care. Those who did not verify results cited lack of insurance coverage and limited perceived personal benefit of clinical verification as reasons for inaction. These findings suggest researchers will need to address barriers to seeking clinical verification in order to ensure that the intended benefits of returning genetic research results are realized. © 2017 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals, Inc.

  19. Scientific familial lessons in ingestive behavior research: 2016 Alan N. Epstein research award.

    Science.gov (United States)

    Hayes, Matthew R

    2017-07-01

    While energy balance is under the control of the central nervous system (CNS), a major source of neural regulation for the behavioral, physiological and endocrine processes governing energy balance originates in the periphery. Indeed, the organs of the gastrointestinal (GI) tract, supporting organs of the peritoneal cavity and adipose tissue are the source of numerous neurotransmitter and neuroendocrine signals released from non-neuronal peripheral tissue that signal in a paracrine and endocrine fashion to regulate the physiological and behavioral processes that affect energy balance. Given the ever increasing appreciation that chronic hyperphagia of highly-palatable/rewarding food is a major contributing factor to the obesity epidemic, it is not surprising that the field has increased research efforts focusing on understanding what role peripherally-derived neuroendocrine signals play in modulating food reward and motivated behaviors. Research throughout my career has focused on understanding gut-to-brain communication of relevance to energy balance control. Through very fortuitous opportunities and amazing collaborations, my research program has also expanded widely to include analyses of multiple GI-, pancreatic- and adipose tissue-derived anorectic signals involved in food intake and energy balance control, as well as analyses of higher-order determinants of food reward, nausea, aversion and maladaptive motivated behaviors. I am honored to be the recipient of the 2016 Alan N. Epstein Research Award from the Society for the Study of Ingestive Behavior, and express much appreciation for the amazing collaborations I have had with my mentors, colleagues and trainees. Copyright © 2017 Elsevier Inc. All rights reserved.

  20. The significant impact of education, poverty, and race on Internet-based research participant engagement.

    Science.gov (United States)

    Hartz, Sarah M; Quan, Tiffany; Ibiebele, Abiye; Fisher, Sherri L; Olfson, Emily; Salyer, Patricia; Bierut, Laura J

    2017-02-01

    Internet-based technologies are increasingly being used for research studies. However, it is not known whether Internet-based approaches will effectively engage participants from diverse racial and socioeconomic backgrounds. A total of 967 participants were recruited and offered genetic ancestry results. We evaluated viewing Internet-based genetic ancestry results among participants who expressed high interest in obtaining the results. Of the participants, 64% stated that they were very or extremely interested in their genetic ancestry results. Among interested participants, individuals with a high school diploma (n = 473) viewed their results 19% of the time relative to 4% of the 145 participants without a diploma (P Internet-based research was low despite high reported interest. This suggests that explicit strategies should be developed to increase diversity in Internet-based research.Genet Med 19 2, 240-243.

  1. Research Market Gap in Law Enforcement Technology: Lessons from Czech Security Research Funding Programmes

    Directory of Open Access Journals (Sweden)

    Luděk Moravec

    2014-12-01

    Full Text Available While security research funding schemes are nothing new to the EU (Horizon 2020 and FP7, or to several Member States, their priorities and procedures are usually decided administratively or shaped by advisory groups of varying membership. Only recently did the EU shift its focus to the role of end users in security research programmes, seeking their input in order to maximise the utility of funded solutions. Such a hint to limited usefulness of some industrial solutions is not exactly inconspicuous. This paper discusses the gap between the stated needs of law enforcement agencies in terms of R&D funding and the grant project applications in the area of law enforcement. It aims to define and describe the gap, and consequently the market opportunities, between the supply and demand sides represented by industry-driven grant project applications and end-user-formulated calls. The study is based on empirical data from two Czech security research funding programmes that have been running since 2010 and should deliver their results by 2015. It seeks to contribute some preliminary observations about the structure of both end user needs and industry capabilities in such a particular area as law enforcement technology.

  2. Barriers to participation in mental health research: findings from the Genetics and Psychosis (GAP) Study.

    Science.gov (United States)

    Woodall, Anna; Howard, Louise; Morgan, Craig

    2011-01-01

    The aim of this study was to investigate why people with a first episode of psychosis choose or decline to participate in mental health research, using a qualitative study design. Participants were recruited via referrals from the Genetics and Psychosis (GAP) study. A total of 26 individuals with a first-episode of psychosis (nine of whom declined participation in the GAP study and 17 who participated) were individually interviewed and asked about their attitudes towards mental health research participation. Thematic analysis of interview transcripts was used to determine dominant themes and sub-themes on what constituted barriers and facilitators to participation. Reasons for research participation identified included a desire to help others, curiosity, and positive experiences with clinicians. Decisions to participate or not were also influenced by practical issues, including the timing of the approach, researchers' communication skills and whether individuals had concerns that it may be potentially harmful to their health. Other barriers to participation included patients' conceptualizations of mental health problems and the influence of other inpatients. Information on barriers and facilitators to recruitment in mental health research could inform recruitment strategies, thereby maximizing recruitment rates and minimizing the risk of selection biases.

  3. Political Ideology, Confidence in Science, and Participation in Alzheimer Disease Research Studies.

    Science.gov (United States)

    Gabel, Matthew; Gooblar, Jonathan; Roe, Catherine M; Selsor, Natalie J; Morris, John C

    2018-01-18

    Americans' confidence in science varies based on their political ideology. This ideological divide has potentially important effects on citizens' engagement with and participation in clinical studies of Alzheimer disease (AD). A probability sample of 1583 Americans was surveyed about their willingness to participate in longitudinal AD research and about their political attitudes. These survey results were compared with a survey of 382 participants in a longitudinal AD study at the Knight Alzheimer Disease Research Center. Among Americans, more conservative ideology decreases willingness to participate in a hypothetical longitudinal cohort study of AD both directly and through its negative effect on confidence in science. The Knight Alzheimer Disease Research Center study participants expressed more liberal ideology and greater confidence in science than Americans in general. Of the survey respondents opposed to participation, over a quarter changed to neutral or positive if the study returned their research results to them. Clinical studies of AD are likely biased toward participants who are more liberal and have higher confidence in science than the general population. This recruitment bias may be reduced by lowering the trust demanded of participants through measures such as returning research results to participants.

  4. Protecting vulnerable research participants: a Foucault-inspired analysis of ethics committees.

    Science.gov (United States)

    Juritzen, Truls I; Grimen, Harald; Heggen, Kristin

    2011-09-01

    History has demonstrated the necessity of protecting research participants. Research ethics are based on a concept of asymmetry of power, viewing the researcher as powerful and potentially dangerous and establishing ethics committees as external agencies in the field of research. We argue in favour of expanding this perspective on relationships of power to encompass the ethics committees as one among several actors that exert power and that act in a relational interplay with researchers and participants. We employ Michel Foucault's ideas of power as an omnipresent force which is dynamic and unstable, as well as the notion that knowledge and power are inextricably intertwined. The article discusses how research ethics committees may affect academic freedom. In addition it is pointed out that research participants could be harmed - not only by unfortunate research practices, but also by being subjected to the protective efforts of ethics monitoring bodies.

  5. Lessons learned from research and surveillance directed at highly pathogenic influenza A viruses in wild birds inhabiting North America

    Science.gov (United States)

    Ramey, Andy M.; DeLiberto, Thomas J.; Berhane, Yohannes; Swayne, David E.; Stallknecht, David E.

    2018-01-01

    Following detections of highly pathogenic (HP) influenza A viruses (IAVs) in wild birds inhabiting East Asia after the turn of the millennium, the intensity of sampling of wild birds for IAVs increased throughout much of North America. The objectives for many research and surveillance efforts were directed towards detecting Eurasian origin HP IAVs and understanding the potential of such viruses to be maintained and dispersed by wild birds. In this review, we highlight five important lessons learned from research and surveillance directed at HP IAVs in wild birds inhabiting North America: (1) Wild birds may disperse IAVs between North America and adjacent regions via migration, (2) HP IAVs can be introduced to wild birds in North America, (3) HP IAVs may cross the wild bird-poultry interface in North America, (4) The probability of encountering and detecting a specific virus may be low, and (5) Population immunity of wild birds may influence HP IAV outbreaks in North America. We review empirical support derived from research and surveillance efforts for each lesson learned and, furthermore, identify implications for future surveillance efforts, biosecurity, and population health. We conclude our review by identifying five additional areas in which we think future mechanistic research relative to IAVs in wild birds in North America are likely to lead to other important lessons learned in the years ahead.

  6. Lessons learned from research and surveillance directed at highly pathogenic influenza A viruses in wild birds inhabiting North America.

    Science.gov (United States)

    Ramey, Andrew M; DeLiberto, Thomas J; Berhane, Yohannes; Swayne, David E; Stallknecht, David E

    2018-05-01

    Following detections of highly pathogenic (HP) influenza A viruses (IAVs) in wild birds inhabiting East Asia after the turn of the millennium, the intensity of sampling of wild birds for IAVs increased throughout much of North America. The objectives for many research and surveillance efforts were directed towards detecting Eurasian origin HP IAVs and understanding the potential of such viruses to be maintained and dispersed by wild birds. In this review, we highlight five important lessons learned from research and surveillance directed at HP IAVs in wild birds inhabiting North America: (1) Wild birds may disperse IAVs between North America and adjacent regions via migration, (2) HP IAVs can be introduced to wild birds in North America, (3) HP IAVs may cross the wild bird-poultry interface in North America, (4) The probability of encountering and detecting a specific virus may be low, and (5) Population immunity of wild birds may influence HP IAV outbreaks in North America. We review empirical support derived from research and surveillance efforts for each lesson learned and, furthermore, identify implications for future surveillance efforts, biosecurity, and population health. We conclude our review by identifying five additional areas in which we think future mechanistic research relative to IAVs in wild birds in North America are likely to lead to other important lessons learned in the years ahead. Published by Elsevier Inc.

  7. 'What do I know? Should I participate?' Considerations on participation in HIV related research among HIV infected adults in Bangalore, South India.

    Directory of Open Access Journals (Sweden)

    Rashmi J Rodrigues

    Full Text Available BACKGROUND: India has the highest number of HIV infected persons in the world after South Africa. Much HIV related behavioral, clinical and laboratory based research is ongoing in India. Yet little is known on Indian HIV patients' knowledge of research, their processes of decision making and motives for participation. We aimed to explore these areas among HIV infected individuals to understand their reasons for participating in research. METHODOLOGY/PRINCIPAL FINDINGS: This is a cross sectional survey among 173 HIV infected adults at a tertiary level hospital in Bangalore, India, done between October 2010 and January 2011. A pre-tested questionnaire was administered to the participants by trained research assistants to assess their knowledge regarding research, willingness to participate, decision making and determinants of participation. Participants were presented with five hypothetical HIV research studies. Each study had a different level of intervention and time commitment. Of respondents, 103(60%, said that research meant 'to discover something new' and 138(80% were willing to participate in research. A third of the respondents were unaware of their right to refuse participation. Willingness to participate in research varied with level of intervention. It was the lowest for the hypothetical study involving sensitive questions followed by the hypothetical drug trial; and was the highest for the hypothetical cross sectional questionnaire based study (p<0.0015. Individual health benefits and altruism were the primary motives for participation in research and indicate the presence of therapeutic misconception. Women were less likely to make autonomous decisions for participation in interventional studies. CONCLUSIONS/SIGNIFICANCE: Despite a majority willing to participate, over a third of respondents did not have any knowledge of research or the voluntary nature of participation. This has ethical implications. Researchers need to focus on

  8. Financial remuneration for clinical and behavioral research participation: ethical and practical considerations.

    Science.gov (United States)

    Permuth-Wey, Jennifer; Borenstein, Amy R

    2009-04-01

    Although the practice of providing payment to clinical research participants has been ongoing for more than a century, it remains an ethically controversial topic among members of the research community. The aims of this commentary are to summarize ethical and practical considerations regarding financial remuneration of research participants and to make recommendations for researchers contemplating this practice. A PubMed search was conducted to explore the ethical implications surrounding financial remuneration and review the body of empiric data on this topic. Financial remuneration is perceived to be ethically acceptable by many researchers and research participants and can be helpful in the recruitment process. It is recommended that when investigators are contemplating whether to offer payment to research participants, they should consider the nature of the study and the potential benefits and risks to the participants, institutional or organizational guidelines, and cultural and societal norms specific to the population being studied. Financial remuneration has the ability to serve as a sign of appreciation for the contributions of research participants and a way to facilitate clinical and behavioral research.

  9. Final cleanup of buildings within in legacy French research facilities: strategy, tools and lessons learned

    International Nuclear Information System (INIS)

    Le Goaller, C.; Doutreluingne, C.; Berton, M.A.; Doucet, O.

    2007-01-01

    This paper describes the methodology followed by the French Atomic Energy Commission (CEA) to decommission the buildings of former research facilities for demolition or possible reuse. It is a well known fact that the French nuclear safety authority has decided not to define any general release level for the decommissioning of nuclear facilities, thus effectively prohibiting radiological measurement-driven decommissioning. The decommissioning procedure therefore requires an intensive in-depth examination of each nuclear plant. This requires a good knowledge of the past history of the plant, and should be initiated as early as possible. The paper first describes the regulatory framework recently unveiled by the French Safety Authority, then, reviews its application to ongoing decommissioning projects. The cornerstone of the strategy is the definition of waste zoning in the buildings to segregate areas producing conventional waste from those generating nuclear waste. After dismantling, suitable measurements are carried out to confirm the conventional state of the remaining walls. This requires low-level measurement methods providing a suitable detection limit within an acceptable measuring time. Although this generally involves particle counting and in-situ low level gamma spectrometry, the paper focuses on y spectrometry. Finally, the lessons learned from ongoing projects are discussed. (authors)

  10. Experience and lessons learned in the assessment of safety justifications for experiments mounted in research reactors

    International Nuclear Information System (INIS)

    Cox, R.F.

    1990-01-01

    Some experiments in research reactors are arguably a risky undertaking due to their uncertain outcome. The justifications for such experiments require careful assessment to validate their undertaking. The public, the operators and the installation itself must be safeguarded. Assessment of the potential risk is an acquired skill but in doing so the route can be eased by learning from the lessons experience can teach. This paper, essentially for the usage of safety managers, sets out some of the issues relating to the assessment process gained from our experience over a few tens of years in the assessment of experiments. Many of the conclusions reached may appear all too obvious viewed in retrospect, but they were not necessarily clear at the time. Those organizations setting up assessment teams may find some of the conclusions of value such that their proposed management system can embrace methodologies for assessment that can avoid or lessen the impact of some of the pitfalls we have tried to identify. Failure to recognise some of these points may run the risk of delayed clearances, dilated timescales and cost overruns. It is in the hope of reducing all these penalties that we offer our experiences

  11. When Patient Engagement and Research Ethics Collide: Lessons from a Dementia Forum.

    Science.gov (United States)

    Robillard, Julie M; Feng, Tanya L

    2017-01-01

    The importance of patient engagement in research has been gaining recognition since the turn of the 21st century. However, little is known about the perspectives of people with dementia on the process of discovery. To fill this gap and to inform priorities in patient engagement in the context of dementia research, the Clinic for Alzheimer Disease and Related Disorders at the University of British Columbia hosted an interactive session for members of the patient community and of the general public to share their views on various ethical aspects of the research process. Results from the session indicate that several current research ethics policies and norms in dementia research are not in line with participants' preferences. Here we discuss the importance of bridging the gap between researchers and patients and call for reforms in current standards of dementia research.

  12. Implementation of a nationwide health economic consultation service to assist substance use researchers: Lessons learned.

    Science.gov (United States)

    Murphy, Sean M; Leff, Jared A; Linas, Benjamin P; Morgan, Jake R; McCollister, Kathryn; Schackman, Bruce R

    2018-03-20

    Health economic evaluation findings assist stakeholders in improving the quality, availability, scalability, and sustainability of evidence-based services, and in maximizing the efficiency of service delivery. The Center for Health Economics of Treatment Interventions for Substance Use Disorders, HCV, and HIV (CHERISH) is a NIDA-funded multi-institutional center of excellence whose mission is to develop and disseminate health-economic research on healthcare utilization, health outcomes, and health-related behaviors that informs substance use disorder treatment policy, and HCV and HIV care of people who use substances. We designed a consultation service that is free to researchers whose work aligns with CHERISH's mission. The service includes up to six hours of consulting time. After prospective consultees submit their request online, they receive a screening call from the consultation service director, who connects them with a consultant with relevant expertise. Consultees and consultants complete web-based evaluations following the consultation; consultees also complete a six-month follow-up. We report on the status of the service from its inception in July 2015 through June 2017. We have received 28 consultation requests (54% Early Stage Investigators, 57% MD or equivalent, 28% PhD, 61% women) on projects typically related to planning a study or grant application (93%); 71% were HIV/AIDS-related. Leading topics included cost-effectiveness (43%), statistical-analysis/econometrics (36%), cost (32%), cost-benefit (21%), and quality-of-life (18%). All consultees were satisfied with their overall experience, and felt that consultation expectations and objectives were clearly defined and the consultant's expertise was matched appropriately with their needs. Results were similar for consultants, who spent a median of 3 hours on consultations. There is a need for health-economic methodological guidance among substance use, HCV, and HIV researchers. Lessons learned

  13. The Role of High School Research Experiences in Shaping Students' Research Self-Efficacy and Preparation for Undergraduate Research Participation

    Science.gov (United States)

    Swan, Amy K.; Inkelas, Karen Kurotsuchi; Jones, Jill N.; Pretlow, Joshua; Keller, Tierney F.

    2018-01-01

    The effects of undergraduate research participation are well documented, but less is known about students' pathways into undergraduate research participation. This mixed-methods study explored the role of an International Baccalaureate research project in students' development of research self-efficacy in high school, and how this development…

  14. A Framework for Clarifying "Participation" in Participatory Research to Prevent its Rejection for the Wrong Reasons

    Directory of Open Access Journals (Sweden)

    Olivier Barreteau

    2010-06-01

    Full Text Available Participatory research relies on stakeholder inputs to obtain its acclaimed benefits of improved social relevance, validity, and actionability of research outcomes. We focus here on participatory research in the context of natural resource management. Participants' acceptance of participatory research processes is key to their implementation. Our first assumption is that this positive view and acceptance of participation in research processes is a public good for the whole participatory research community. We also assume that the diversity of participatory forms of research is rarely considered by potential participants when they make their decisions about whether or not to participate in a proposed process. We specifically address how to avoid stakeholders' reluctance to be involved in participatory research projects based on disillusion with past experiences. We argue that the disappointment experienced by stakeholders and other participants (i.e., researchers and policy makers can be avoided by being upfront and precise about how "participation" will be implemented, and what kind of involvement is expected from participants. Such a collective effort from the research community can also clarify the variety of possible implementations for potential participants. Building on earlier efforts to characterize and categorize the diversity of participatory research approaches, we develop a conceptual analytic procedural framework to make participants' roles explicit in the implementation of different participatory research processes. This framework consists of three facets: (1 the flows of information among participants and the control over these flows for each step in a process, i.e., who will be expected to produce information, who will use this information, and who will receive the results; (2 the timing of the involvement of participants in the different steps of the research process, and the framing power that is associated with each process

  15. Understandings of Participation in Behavioural Research: A Qualitative Study of Gay and Bisexual Men in Scotland.

    Directory of Open Access Journals (Sweden)

    Nicola Boydell

    Full Text Available An array of empirical research has emerged related to public participation in health research. To date, few studies have explored the particular perspectives of gay and bisexual men taking part in behavioural surveillance research, which includes the donation of saliva swabs to investigate HIV prevalence and rates of undiagnosed HIV. Semi-structured interviews were conducted with twenty-nine gay and bisexual men in Scotland who had participated in a bar-based survey. Thematic analysis of men's accounts of their motives for participation and their perceptions of not receiving individual feedback on HIV status suggested a shared understanding of participation in research as a means of contributing to 'community' efforts to prevent the spread of HIV. Most men expressed sophisticated understandings of the purpose of behavioural research and distinguished between this and individual diagnostic testing. Despite calls for feedback on HIV results broadly, for these men feedback on HIV status was not deemed crucial.

  16. Understandings of Participation in Behavioural Research: A Qualitative Study of Gay and Bisexual Men in Scotland.

    Science.gov (United States)

    Boydell, Nicola; Fergie, Gillian May; McDaid, Lisa Margaret; Hilton, Shona

    2015-01-01

    An array of empirical research has emerged related to public participation in health research. To date, few studies have explored the particular perspectives of gay and bisexual men taking part in behavioural surveillance research, which includes the donation of saliva swabs to investigate HIV prevalence and rates of undiagnosed HIV. Semi-structured interviews were conducted with twenty-nine gay and bisexual men in Scotland who had participated in a bar-based survey. Thematic analysis of men's accounts of their motives for participation and their perceptions of not receiving individual feedback on HIV status suggested a shared understanding of participation in research as a means of contributing to 'community' efforts to prevent the spread of HIV. Most men expressed sophisticated understandings of the purpose of behavioural research and distinguished between this and individual diagnostic testing. Despite calls for feedback on HIV results broadly, for these men feedback on HIV status was not deemed crucial.

  17. Accessing Fellow Academics as Research Participants: Constraints, Collegiality, and “Academic Citizenship”

    Directory of Open Access Journals (Sweden)

    Yongyan Li

    2015-06-01

    Full Text Available In this paper I discuss some constraints and implications in accessing fellow academics as research participants, a topic that has rarely been addressed thus far in the literature. I will point out that a lack of cooperation from fellow academics may defeat our research purposes, and will survey some studies involving U.S., European, and Chinese academics as research participants to illustrate education researchers’ efforts to work with fellow academics against the odds. By referencing my personal experience of engaging with Chinese academics, I will then discuss the role of personal contacts in research and reflect upon various constraints in accessing fellow academics as research participants. I will suggest that, when we do participate in a fellow researcher’s project, the incentive is a desire to support our peers in the spirit of “academic citizenship.”

  18. Recruitment and Participation of Older Lesbian and Bisexual Women in Intervention Research.

    Science.gov (United States)

    Wood, Susan F; Brooks, Jacquetta; Eliason, Michele J; Garbers, Samantha; McElroy, Jane A; Ingraham, Natalie; Haynes, Suzanne G

    2016-07-07

    Very little research has addressed issues of recruitment and participation of lesbian and bisexual (LB) women, aged 40 and older, into research studies. This study is based on a larger cross-site intervention study that recruited women from five geographic regions in the United States for culturally specific LB healthy weight programs, lasting 12 or 16 weeks. Principal investigators (PIs) of the five intervention programs completed a questionnaire on recruitment and participation strategies and barriers. Participant data on completion and sociodemographic variables were compiled and analyzed. The recruitment strategies the programs' PIs identified as most useful included word-of-mouth participant referrals, emails to LB participants' social networks, and use of electronic health records (at the two clinic-based programs) to identify eligible participants. Flyers and web postings were considered the least useful. Once in the program, participation and completion rates were fairly high (approximately 90%), although with varying levels of engagement in the different programs. Women who were younger or single were more likely to drop out. Women with disabilities had a lower participation/completion rate (82%) than women without any disability (93%). Dropouts were associated with challenges in scheduling (time of day, location) and changes in health status. Implementation of key strategies can improve both recruitment and participation, but there is a great need for further study of best practices to recruit and promote participation of LB women for health intervention research. Copyright © 2016 Jacobs Institute of Women's Health. All rights reserved.

  19. Engaging the oldest old in research: lessons from the Newcastle 85+ study

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    Davies Karen

    2010-09-01

    Full Text Available Abstract Background Those aged 85 and over, the oldest old, are now the fastest growing sector of the population. Information on their health is essential to inform future planning; however, there is a paucity of up-to-date information on the oldest old, who are often excluded from research. The aim of the Newcastle 85+ Study is to investigate the health of a cohort of 85-year-olds from a biological, medical and psychosocial perspective. This paper describes the methods employed for the successful recruitment, retention and evaluation of this cohort. Methods Participants were all individuals born in 1921 and registered with a participating general practice in Newcastle and North Tyneside, UK. Involvement comprised detailed health assessments, by a nurse, in their usual place of residence and/or review of their general practice medical records. Results Of the 1453 individuals eligible to participate, 72% (n = 1042 were recruited; 59% (n = 851 consented to both health assessment and review of general practice records. Key factors for successful involvement included protected time to engage with family and other key gatekeepers, minimising participant burden, through for example home based assessment, and flexibility of approach. Cognitive impairment is a significant issue; due consideration should be given to the ethical and legal issues of capacity and consent. Interim withdrawal rates at phase 2 (18 month post baseline, show 88 out of 854 participants (10% had withdrawn with approval for continued use of data and materials and a further 2 participants (0.2% had withdrawn and requested that all data be destroyed. Attrition due to death of participants within this same time frame was 135 (16%. Conclusion Our recruitment rates were good and compared favourably with other similar UK and international longitudinal studies of the oldest old. The challenges of and successful strategies for involving, recruiting and retaining the oldest old in research

  20. Decision-making and motivation to participate in biomedical research in southwest Nigeria.

    Science.gov (United States)

    Osamor, Pauline E; Kass, Nancy

    2012-08-01

    Motivations and decision-making styles that influence participation in biomedical research vary across study types, cultures, and countries. While there is a small amount of literature on informed consent in non-western cultures, few studies have examined how participants make the decision to join research. This study was designed to identify the factors motivating people to participate in biomedical research in a traditional Nigerian community, assess the degree to which participants involve others in the decision-making process, and examine issues of autonomy in decision-making for research. A descriptive cross-sectional study was conducted with 100 adults (50 men, 50 women) in an urban Nigerian community who had participated in a biomedical research study. Subjects were interviewed using a survey instrument. Two-thirds of the respondents reported participating in the biomedical study to learn more about their illness, while 30% hoped to get some medical care. Over three-quarters (78%) of participants discussed the enrollment decision with someone else and 39% reported obtaining permission from a spouse or family member to participate in the study. Women were more than twice as likely as men to report obtaining permission from someone else before participating. More specifically, half of the female participants reported seeking permission from a spouse before enrolling. The findings suggest that informed consent in this community is understood and practised as a relational activity that involves others in the decision making process. Further studies are needed in non-Western countries concerning autonomy, decision-making, and motivation to participate in research studies. © 2012 Blackwell Publishing Ltd.

  1. The Ripple Effect: Lessons from a Research and Teaching Faculty Learning Community

    Science.gov (United States)

    Hershberger, Andrew; Spence, Maria; Cesarini, Paul; Mara, Andrew; Jorissen, Kathleen Topolka; Albrecht, David; Gordon, Jeffrey J.; Lin, Canchu

    2009-01-01

    Building upon a related 2005 panel presentation at the 25th annual Lilly Conference on College Teaching, Miami University, Oxford, Ohio, the authors, several tenure-track assistant professors and tenured associate professors who have participated in a Research and Teaching Faculty Learning Community at Bowling Green State University, share their…

  2. Why female sex workers participate in HIV research: the illusion of voluntariness.

    Science.gov (United States)

    Reed, Elizabeth; Fisher, Celia B; Blankenship, Kim M; West, Brooke S; Khoshnood, Kaveh

    2017-07-01

    The purpose of this study was to examine factors influencing the motivation for and perceived voluntariness of participation in non-intervention HIV research among female sex workers (FSW) in India. FSW (n = 30) who participated in non-intervention HIV studies in the previous three years were recruited from a local community-based organization. Semi-structured qualitative interviews focused on women's personal and economic motivations for participation and their perceptions of the informed consent process. Interviews were audio-recorded, translated, transcribed, and reviewed for common themes. Content analysis indicated that while many women reported willing participation, reports of obligatory participation were also a common theme. Obligations included money-related pressures and coercion by other FSW, social pressures, not wanting to disappoint the researchers, and perceiving that they had a contractual agreement to complete participation as a result of signing the consent form. Findings suggest a need for additional efforts during and following informed consent to prevent obligatory participation in HIV research studies among FSW. Findings emphasize the importance of integrating ongoing participant feedback into research ethics practices to identify issues not well addressed via standard ethics protocols when conducting HIV research among vulnerable populations.

  3. Let's Play it Safe: Ethical Considerations from Participants in a Photovoice Research Project

    Directory of Open Access Journals (Sweden)

    Karin Hannes PhD

    2014-02-01

    Full Text Available The use of images and other visual data in qualitative research projects poses new ethical challenges, particularly in the context of participatory research projects that engage research participants in conducting fieldwork. Little is known about how research participants deal with the ethical challenges involved in conducting fieldwork, or whether they succeed in making balanced ethical judgments in collecting images of identifiable people and places. This study aims to increase our understanding of these ethical challenges. From an inductive analysis of interview data generated from nine participants recently involved in a photovoice research project we conclude that raising awareness about ethical aspects of conducting visual research increases research participants' sensitivity toward ethical issues related to privacy, anonymity, and confidentiality of research subjects. However, personal reasons (e.g., cultural, emotional and cautions about potential ethical dilemmas also prompt avoidance behavior. While ethics sessions may empower participants by equipping them with the knowledge of research ethics, ethics sessions may also have an unintentional impact on research.

  4. Researchers’ participation in and motivations for engaging with research information management systems

    Science.gov (United States)

    Wu, Shuheng; Lee, Dong Joon

    2018-01-01

    Researchers’ participation in online RIMSs This article examined how researchers participated in research information management systems (RIMSs), their motivations for participation, and their priorities for those motivations. Profile maintenance, question-answering, and endorsement activities were used to define three cumulatively increasing levels of participation: Readers, Record Managers, and Community Members. Junior researchers were more engaged in RIMSs than were senior researchers. Postdocs had significantly higher odds of endorsing other researchers for skills and being categorized as Community Members than did full and associate professors. Assistant professors were significantly more likely to be Record Managers than were members of any other seniority categories. Finally, researchers from the life sciences showed a significantly higher propensity for being Community Members than Readers and Record Managers when compared with researchers from engineering and the physical sciences, respectively. Researchers’ motivations to participate in RIMSs When performing activities, researchers were motivated by the desire to share scholarship, feel competent, experience a sense of enjoyment, improve their status, and build ties with other members of the community. Moreover, when researchers performed activities that directly benefited other members of a RIMS, they assigned higher priorities to intrinsic motivations, such as perceived self-efficacy, enjoyment, and building community ties. Researchers at different stages of their academic careers and disciplines ranked some of the motivations for engaging with RIMSs differently. The general model of research participation in RIMSs; the relationships among RIMS activities; the motivation scales for activities; and the activity, seniority, and discipline-specific priorities for the motivations developed by this study provide the foundation for a framework for researcher participation in RIMSs. This framework can be

  5. Participatory research towards co-management: lessons from artisanal fisheries in coastal Uruguay.

    Science.gov (United States)

    Trimble, Micaela; Berkes, Fikret

    2013-10-15

    Participatory research has become increasingly common in natural resources management. Even though participatory research is considered a strategy to facilitate co-management, there is little empirical evidence supporting this. The objective of the present paper is to analyze the contributions of participatory research to help encourage the emergence of co-management, based on a case study in Piriápolis artisanal fishery in coastal Uruguay (where management has been top-down). We argue that participatory research involving artisanal fishers, government, and other stakeholders (university scientists and NGOs) can be a key stimulus towards co-management. We build this argument by considering "seven faces" by which co-management can be analyzed: (1) as power sharing; (2) as institution building; (3) as trust building; (4) as process; (5) as learning and knowledge co-production; (6) as problem solving; and (7) as governance. Our findings show that participatory research had an impact on these various faces: (1) power was shared when making research decisions; (2) a multi-stakeholder group (POPA), with a common vision and goals, was created; (3) trust among participants increased; (4) the process of group formation was valued by participants; (5) stakeholders learned skills for participation; (6) two problem-solving exercises were conducted; and (7) a diversity of stakeholders of the initial problem identified by fishers (sea lions' impact on long-line fishery) participated in the process. The case shows that participatory research functions as a platform which enhances learning and knowledge co-production among stakeholders, paving the way towards future co-management. Copyright © 2013 Elsevier Ltd. All rights reserved.

  6. Cultivating Research Pedagogies with Adolescents: Created Spaces, Engaged Participation, and Embodied Inquiry

    Science.gov (United States)

    Wissman, Kelly K.; Staples, Jeanine M.; Vasudevan, Lalitha; Nichols, Rachel E.

    2015-01-01

    This paper conceptualizes an approach to adolescent literacies research we call "research pedagogies." This approach recognizes the pedagogical features of the research process and includes three dimensions: created spaces, engaged participation, and embodied inquiry. By drawing upon and sometimes recasting foundational anthropological…

  7. Reciprocity-based reasons for benefiting research participants: most fail, the most plausible is problematic.

    Science.gov (United States)

    Sofaer, Neema

    2014-11-01

    A common reason for giving research participants post-trial access (PTA) to the trial intervention appeals to reciprocity, the principle, stated most generally, that if one person benefits a second, the second should reciprocate: benefit the first in return. Many authors consider it obvious that reciprocity supports PTA. Yet their reciprocity principles differ, with many authors apparently unaware of alternative versions. This article is the first to gather the range of reciprocity principles. It finds that: (1) most are false. (2) The most plausible principle, which is also problematic, applies only when participants experience significant net risks or burdens. (3) Seldom does reciprocity support PTA for participants or give researchers stronger reason to benefit participants than equally needy non-participants. (4) Reciprocity fails to explain the common view that it is bad when participants in a successful trial have benefited from the trial intervention but lack PTA to it. © 2013 John Wiley & Sons Ltd.

  8. Active student participation and citizenship education

    NARCIS (Netherlands)

    Veugelers, W.

    2009-01-01

    What are the possibilities for active student participation in citizenship education and how are students involved in the school as a community? We researched active student participation in schools and in out-of-school learning activities: students’ own lessons, their own school, their own

  9. 'What do I know? Should I participate?' Considerations on participation in HIV related research among HIV infected adults in Bangalore, South India.

    Science.gov (United States)

    Rodrigues, Rashmi J; Antony, Jimmy; Krishnamurthy, Shubha; Shet, Anita; De Costa, Ayesha

    2013-01-01

    India has the highest number of HIV infected persons in the world after South Africa. Much HIV related behavioral, clinical and laboratory based research is ongoing in India. Yet little is known on Indian HIV patients' knowledge of research, their processes of decision making and motives for participation. We aimed to explore these areas among HIV infected individuals to understand their reasons for participating in research. This is a cross sectional survey among 173 HIV infected adults at a tertiary level hospital in Bangalore, India, done between October 2010 and January 2011. A pre-tested questionnaire was administered to the participants by trained research assistants to assess their knowledge regarding research, willingness to participate, decision making and determinants of participation. Participants were presented with five hypothetical HIV research studies. Each study had a different level of intervention and time commitment. Of respondents, 103(60%), said that research meant 'to discover something new' and 138(80%) were willing to participate in research. A third of the respondents were unaware of their right to refuse participation. Willingness to participate in research varied with level of intervention. It was the lowest for the hypothetical study involving sensitive questions followed by the hypothetical drug trial; and was the highest for the hypothetical cross sectional questionnaire based study (pWomen were less likely to make autonomous decisions for participation in interventional studies. Despite a majority willing to participate, over a third of respondents did not have any knowledge of research or the voluntary nature of participation. This has ethical implications. Researchers need to focus on enabling potential research participants understand the concepts of research, promote autonomous decisions, especially by women and restrict therapeutic misconception.

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

    DEFF Research Database (Denmark)

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

    2007-01-01

    background information but no follow up. METHODS: 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. RESULTS: The interviewed participants are generally in favour......, 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. CONCLUSION: Medical research ethics do not only amount to specific types......BACKGROUND: 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...

  11. Public Libraries, Museums and User Participation - An outline of a research projeckt

    DEFF Research Database (Denmark)

    Jochumsen, Henrik; Rasmussen, Casper Hvenegaard

    2013-01-01

    The aim of this paper is to sketch a research project on user participation in public libraries and museums. For several years’ user participation, participatory culture and user driven innovation have been “buzzwords” in the ongoing development of cultural institutions in general and in museums...... of the research project. The case of Roskilde is particularly illustrative as it not only contains user participation, libraries and museums but also illustrate how the development of user participation actually blurs the borders of the two institutions. After a definition of the concept of user participation...... and a brief discussion of the institutional and political relevance of doing research into the field, we will pinpoint some challenges that both libraries and museums are facing so as to emphasize the importance of studying how the increasing focus on user development is expressed in both institutions...

  12. Broadening participation in Research Experiences for Undergraduates (REU) programs: an evaluation of the team research model for undergraduate research experiences

    Science.gov (United States)

    Berthelote, A. R.; Geraghty Ward, E. M.; Dalbotten, D. M.

    2014-12-01

    The REU site on sustainable land and water resources has a goal of broadening participation in the geosciences by underrepresented groups and particularly Native American students. We are evaluating modifications to the traditional REU model in order to better support these students. First, we review a team research model for REU students, where students are placed on teams and work together in peer groups supported by a team of mentors. Second, the REU takes place in locations that have high populations of Native American students to remove barriers to participation for non-traditional students. Finally, the teams do research on issues related to local concerns with cultural focus. Traditional REU models (1 faculty to 1 student/on campus) have been shown to be effective in supporting student movement into graduate programs but often fail to attract a diverse group of candidates. In addition, they rely for success on the relationship between faculty and student, which can often be undermined by unrealistic expectations on the part of the student about the mentor relationship, and can be exacerbated by cultural misunderstanding, conflicting discourse, or students' personal or family issues. At this REU site, peer mentorship and support plays a large role. Students work together to select their research question, follow the project to completion and present the results. Students from both native and non-native backgrounds learn about the culture of the partner reservations and work on a project that is of immediate local concern. The REU also teaches students protocols for working on Native American lands that support good relations between reservation and University. Analysis of participant data gathered from surveys and interview over the course of our 3-year program indicates that the team approach is successful. Students noted that collaborating with other teams was rewarding and mentors reported positively about their roles in providing guidance for the student

  13. Community-Engaged Strategies to Increase Diversity of Participants in Health Education Research.

    Science.gov (United States)

    Khubchandani, Jagdish; Balls-Berry, Joyce; Price, James H; Webb, Fern J

    2016-05-01

    Minorities have historically been underrepresented in health-related research. Several strategies have been recommended to increase the participation of minorities in health-related research. However, most of the recommendations and guidelines apply to research in clinical or laboratory contexts. One of the more prominent methods to enhance minority participation in health-related research that has recently come to the fore is the use of community-engaged strategies. The purpose of this article is to summarize community-engaged outreach efforts that can be translated into useable strategies for health education research teams seeking to diversify the pool of research participants. Also, we provide a succinct overview of the various components of a research endeavor that may influence minority participation in health-related research. Finally, we analyze how health education specialists and SOPHE (Society of Public Health Education) can play a leading role in helping enhance minority participation in health-related research. © 2016 Society for Public Health Education.

  14. Participants' perceptions of research benefits in an African genetic epidemiology study.

    Science.gov (United States)

    Appiah-Poku, John; Newton, Sam; Kass, Nancy

    2011-12-01

      Both the Council for International Organization of Medical Sciences and the Helsinki Declaration emphasize that the potential benefits of research should outweigh potential harms; consequently, some work has been conducted on participants' perception of benefits in therapeutic research. However, there appears to be very little work conducted with participants who have joined non-therapeutic research. This work was done to evaluate participants' perception of benefits in a genetic epidemiological study by examining their perception of the potential benefits of enrollment.   In-depth interviews lasting between 45 and 60 minutes were conducted with a convenient sample of 25 ill patients and 25 healthy accompanying relatives enrolled in a genetic epidemiological study of tuberculosis. Recorded interviews were transcribed and analyzed using content analysis.   Participants perceived that research was beneficial and some of the benefits included the generation of new knowledge, finding the cause of diseases, as well as the control, eradication and prevention of disease. Some thought that research was risky whilst others thought that the benefits outweighed the risks.   Participants perceived research to be beneficial and most of them thought that, though it was risky, the benefits outweighed the risks. It is our view that researchers need to give serious consideration to participant's perception of benefits in designing their consent forms, to see to the fulfillment of achievable goals. © 2011 Blackwell Publishing Ltd.

  15. Why families choose not to participate in research: feedback from non-responders.

    Science.gov (United States)

    Levickis, Penny; Naughton, Geraldine; Gerner, Bibi; Gibbons, Kay

    2013-01-01

    Subjects who did not respond to an invitation to participate in a community-based randomised controlled trial for childhood obesity in Melbourne, Australia were approached to investigate reasons for non-participation. Between January and September 2007, 305 families were sent a brief questionnaire and invited to take part in the current study. Thirty-seven questionnaires were returned and 12 parents agreed to a follow-up interview. Questionnaire data were quantitatively analysed. The interviews were conducted via the telephone and provided detailed qualitative information on non-participation. Lack of time was cited as a main reason for non-participation. Different aspects of time were discussed including lack of time to dedicate to a topic seen as low priority, overestimated perception of time for study commitments and the inappropriate timing of the request. Other major reasons for non-participation included risk of negative experiences and the impact of the initial contact with the study. This study illustrates the experiences of potential participants during the recruitment process, their perceptions of study commitments and how their previous experiences impact on their decision to participate in research. These findings provide insight into the decision not to participate in health research and could be used to modify recruitment procedures for future health research as a way of improving the recruitment experience for potential participants as well as enhancing recruitment rates. © 2012 The Authors. Journal of Paediatrics and Child Health © 2012 Paediatrics and Child Health Division (Royal Australasian College of Physicians).

  16. [The system of protection of scientific biomedical research participants in France and in Poland].

    Science.gov (United States)

    Czarkowski, Marek; Sieczych, Alicja

    2013-07-01

    Realizing scientific biomedical research conducted on human-beings demands obeying ample ethical rules. However, states keep independence in the means of implementing deontological guidelines to legislative acts. The aim of the article is to compare rules of law relative to protection of scientific biomedical research participants in two European Union member states--France and Poland. French regulations cover more types of scientific biomedical research than those in Poland. In France almost all types of interventional scientific biomedical research including research on human biological samples and research on cosmetics are covered by the rules of law. Polish regulations are limited to interventional research conducted by doctors and dentists. In both states projects of clinical trials of medicinal products demands double acceptance - from bioethics committee and from competent state authority. In protection of scientific biomedical research participants the role of state authority competent for personal data is more vital in France than it is in Poland. In France there is also National Ethics Advisory Committee whereas in Poland there is no such institution. The systems protecting scientific biomedical research participants differs therefore in both states in many vital aspects and French measures cover more types of scientific biomedical research, hence the level of participants protection in various types of research is more equitable.

  17. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Science.gov (United States)

    2010-04-01

    ... 22 Foreign Relations 1 2010-04-01 2010-04-01 false Grants to foreign participants to lecture, teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND CULTURAL...

  18. Sports participation and alcohol use among adolescents: the impact of measurement and other research design elements.

    Science.gov (United States)

    Mays, Darren; Gatti, Margaret E; Thompson, Nancy J

    2011-06-01

    Sports participation, while offering numerous developmental benefits for adolescents, has been associated with alcohol use in prior research. However, the relationship between sports participation and alcohol use among adolescents remains unclear, particularly how research design elements impact evidence of this relationship. We reviewed the evidence regarding sports participation and alcohol use among adolescents, with a focus on examining the potential impact of research design elements on this evidence. Studies were assessed for eligibility and coded based on research design elements including: study design, sampling method, sample size, and measures of sports participation and alcohol use. Fifty-four studies were assessed for eligibility, 29 of which were included in the review. Nearly two-thirds used a cross-sectional design and a random sampling method, with sample sizes ranging from 178 to 50,168 adolescents (Median = 1,769). Sixteen studies used a categorical measure of sports participation, while 7 applied an index-type measure and 6 employed some other measure of sports participation. Most studies assessed alcohol-related behaviors (n = 18) through categorical measures, while only 6 applied frequency only measures of alcohol use, 1 study applied quantity only measures, and 3 studies used quantity and frequency measures. Sports participation has been defined and measured in various ways, most of which do not differentiate between interscholastic and community-based contexts, confounding this relationship. Stronger measures of both sports participation and alcohol use need to be applied in future studies to advance our understanding of this relationship among youths.

  19. The Climate Impacts Research Consortium: Lessons Learned from the Evaluation of Co-production projects

    Science.gov (United States)

    Sokolovska, I.; Andrepont, J. A.; Lach, D.

    2017-12-01

    The Pacific Northwest Climate Impacts Research Consortium (CIRC) is a climate-science-to-climate-action team funded by the National Oceanic and Atmospheric Administration (NOAA), member of NOAA's Regional Integrated Sciences and Assessments (RISA) program. The internal evaluation of the last 6 years of CIRC's work focused on the co-production of knowledge process. The evaluation was based on CIRC's Reflection and Logic model and used a mixed methods design. During regular monthly meetings in 2014/15, all CIRC PIs reflected on the co-production process and presented their evaluation of the projects they worked on. Additionally, we conducted semi-structured interviews with CIRC participants, purposefully targeting key informants. The Climate Impacts Research Consortium teams also administered surveys to assess participants' experiences of the coproduction process as they were engaging in it. Identifying and cultivating an informant from the local stakeholder group with deep, accessible roots within the target community can lead to better coproduction results than having to build those relationships from naught. Across projects, most participants agreed that the project increased their understanding of their area's hazards and by the end of the project most participants were confident the project would produce useful results for themselves. Finally, most participants intended to share what they had learned from this experience with their colleagues and we found that co-production built capacities necessary for communities to incorporate climate change in discussions even after the end of CIRC's participation. During the projects, the involvement of non-traditional participants along with experts was critical to success and a lot of work and preparation needs to be put into the planning of any co-production meeting to overcome various barriers to communication and build trust.

  20. On the utility of within-participant research design when working with patients with neurocognitive disorders.

    Science.gov (United States)

    Steingrimsdottir, Hanna Steinunn; Arntzen, Erik

    2015-01-01

    Within-participant research designs are frequently used within the field of behavior analysis to document changes in behavior before, during, and after treatment. The purpose of the present article is to show the utility of within-participant research designs when working with older adults with neurocognitive disorders. The reason for advocating for these types of experimental designs is that they provide valid information about whether the changes that are observed in the dependent variable are caused by manipulations of the independent variable, or whether the change may be due to other variables. We provide examples from published papers where within-participant research design has been used with patients with neurocognitive disorders. The examples vary somewhat, demonstrating possible applications. It is our suggestion that the within-participant research design may be used more often with the targeted client group than is documented in the literature at the current date.

  1. A participatory study of teenagers and young adults views on access and participation in cancer research.

    Science.gov (United States)

    Taylor, Rachel M; Solanki, Anita; Aslam, Natasha; Whelan, Jeremy S; Fern, Lorna A

    2016-02-01

    The purpose of this study was to elicit young people's views on access and participation in cancer research. Eight young people aged 18-25 years with a previous cancer diagnosis aged 15-24 participated in a one day workshop utilising participatory methodology. The workshop consisted of four exercises: role play/scene setting; focus group examining thoughts and opinions of research access and participation; individual reflection on access to different types of research; and creative interpretation of the workshop. Further consultation with 222 young people with cancer was conducted using an electronic survey. Three themes emerged: • Patient choice: Young people thought it was their right to know all options about available research. Without knowledge of all available studies they would be unable to make an informed choice about participation. • Role of healthcare professionals as facilitators/barriers: Young people suggested non-clinical healthcare professionals such as social workers and youth support coordinators may be more suited to approaching young people about participation in psychosocial and health services research. • Value of the research: The what, when and how information was delivered was key in relaying the value of the study and assisting young people in their decision to participate. Further consultation showed approximately 70% wanted to find out about all available research. However, one third trusted healthcare professionals to decide which research studies to inform them of. Effective ways to support healthcare professionals approaching vulnerable populations about research are needed to ensure young people are empowered to make informed choices about research participation. Copyright © 2015 Elsevier Ltd. All rights reserved.

  2. High hospital research participation and improved colorectal cancer survival outcomes: a population-based study.

    Science.gov (United States)

    Downing, Amy; Morris, Eva Ja; Corrigan, Neil; Sebag-Montefiore, David; Finan, Paul J; Thomas, James D; Chapman, Michael; Hamilton, Russell; Campbell, Helen; Cameron, David; Kaplan, Richard; Parmar, Mahesh; Stephens, Richard; Seymour, Matt; Gregory, Walter; Selby, Peter

    2017-01-01

    In 2001, the National Institute for Health Research Cancer Research Network (NCRN) was established, leading to a rapid increase in clinical research activity across the English NHS. Using colorectal cancer (CRC) as an example, we test the hypothesis that high, sustained hospital-level participation in interventional clinical trials improves outcomes for all patients with CRC managed in those research-intensive hospitals. Data for patients diagnosed with CRC in England in 2001-2008 (n=209 968) were linked with data on accrual to NCRN CRC studies (n=30 998). Hospital Trusts were categorised by the proportion of patients accrued to interventional studies annually. Multivariable models investigated the relationship between 30-day postoperative mortality and 5-year survival and the level and duration of study participation. Most of the Trusts achieving high participation were district general hospitals and the effects were not limited to cancer 'centres of excellence', although such centres do make substantial contributions. Patients treated in Trusts with high research participation (≥16%) in their year of diagnosis had lower postoperative mortality (presearch participation, with a reduction in postoperative mortality of 1.5% (6.5%-5%, pstudies for all patients with CRC treated in the hospital study participants. Improvement precedes and increases with the level and years of sustained participation. 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/.

  3. Lessons of an experience on peasant participation in an ecological restoration process at Las Orquideas National Natural Park, Colombia

    International Nuclear Information System (INIS)

    Turbay Ceballos, Sandra

    2013-01-01

    The formulation of strategies for conservation and sustainable use of biodiversity are a focus for discussion in protected areas overlapping with family farms. The purpose of this study was to identify the factors affecting farmer participation in an ecological restoration project promoted by Las Orquideas National Natural Park, located west of the department of Antioquia. The results reveal that the people is afraid of expropriation and distrusts technicians, and that there are communication failures, economic and cultural obstacles to limit cattle farming and social restrictions to intensify the exploitation of labor force demanded by new technologies proposed by the Park.

  4. Patient participation in ERS guidelines and research projects: the EMBARC experience.

    Science.gov (United States)

    Chalmers, James D; Timothy, Alan; Polverino, Eva; Almagro, Marta; Ruddy, Thomas; Powell, Pippa; Boyd, Jeanette

    2017-09-01

    The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) is a European Respiratory Society (ERS) Clinical Research Collaboration dedicated to improving research and clinical care for people with bronchiectasis. EMBARC has created a European Bronchiectasis Registry, funded by the ERS and by the European Union (EU) Innovative Medicines Initiative Programme. From the outset, EMBARC had the ambition to be a patient-focussed project. In contrast to many respiratory diseases, however, there are no specific patient charities or European patient organisations for patients with bronchiectasis and no existing infrastructure for patient engagement. This article describes the experience of EMBARC and the European Lung Foundation in establishing a patient advisory group and then engaging this group in European guidelines, an international registry and a series of research studies. Patient involvement in research, clinical guidelines and educational activities is increasingly advocated and increasingly important. Genuine patient engagement can achieve a number of goals that are critical to the success of an EU project, including focussing activities on patient priorities, allowing patients to direct the clinical and research agenda, and dissemination of guidelines and research findings to patients and the general public. Here, we review lessons learned and provide guidance for future ERS task forces, EU-funded projects or clinical research collaborations that are considering patient involvement. To understand the different ways in which patients can contribute to clinical guidelines, research projects and educational activities.To understand the barriers and potential solutions to these barriers from a physician's perspective, in order to ensure meaningful patient involvement in clinical projects.To understand the barriers and potential solutions from a patient's perspective, in order to meaningfully involve patients in clinical projects.

  5. Translation and Adaptation of Tests: Lessons Learned and Recommendations for Countries Participating in timss, pisa and other International Comparisons

    Directory of Open Access Journals (Sweden)

    Guillermo Solano-Flores

    2006-11-01

    Full Text Available In this paper we present a conceptual model and methodology for the review of translated tests in the context of such international comparisons as the Trends in International Mathematics and Science Study (TIMSS and the Programme for International Student Assessment (PISA. We also present the results of an investigation into the quality of the Mexican translation of the TIMSS-1995 into the Spanish language. We identified translation errors in a significant percentage of the items, as well as relatively high correlations between the severity of translation errors and the items’ p-values. These findings indicate that our error-coding system is highly sensitive to test-translation error. The results underscore the need for improved translation and translation-review procedures in international comparisons. In our opinion, to implement the guidelines properly for test translation in international comparisons, each participating country needs to have internal procedures that would ensure a rigorous review of its own translations. The article concludes with four recommendations for countries participating in international comparisons. These recommendations relate to: (a the characteristics of the individuals in charge of translating instruments; (b the use of review, not simply at the end of the process, but during the process of test translation; (c the minimum time needed for various translation review iterations to take place; and (d the need for proper documentation of the entire process of test translation.

  6. Promoting the legitimacy and agency of new graduate nurses' participation in nursing research.

    Science.gov (United States)

    Matikainen, Mary Ann

    2017-06-01

    This paper explores the legitimacy and agency of new graduate mental health nurses to participate in research activities as a regular part of their professional nursing role. There is a wealth of literature describing personal and organisational factors that act as barriers to nurses' engagement in research and overcoming these barriers remains a challenge for health organisations. Some new graduate nurses are well positioned to contribute to research and yet the literature has given little attention to this specific cohort. This paper will show how facilitating new graduates' participation in research benefits the new graduate and the health service. New graduates learn research skills from experienced researchers and this ensures a sustainable future workforce of researchers. Employers who support staff to pursue professional challenges such as research are more likely to generate organisational commitment and loyalty amongst staff.

  7. Factors Affecting Women's Autonomous Decision Making In Research Participation Amongst Yoruba Women Of Western Nigeria.

    Science.gov (United States)

    Princewill, Chitu Womehoma; Jegede, Ayodele S; Nordström, Karin; Lanre-Abass, Bolatito; Elger, Bernice Simone

    2017-04-01

    Research is a global enterprise requiring participation of both genders for generalizable knowledge; advancement of science and evidence based medical treatment. Participation of women in research is necessary to reduce the current bias that most empirical evidence is obtained from studies with men to inform health care and related policy interventions. Various factors are assumed to limit autonomy amongst the Yoruba women of western Nigeria. This paper seeks to explore the experience and understanding of autonomy by the Yoruba women in relation to research participation. Focus is on factors that affect women's autonomous decision making in research participation. An exploratory qualitative approach comprising four focus group discussions, 42 in-depth interviews and 14 key informant interviews was used. The study permits a significant amount of triangulation, as opinions of husbands and religious leaders are also explored. Interviews and discussions were audiotaped and transcribed verbatim. Content analysis was employed for data analysis. Findings show that concepts of autonomy varied amongst the Yoruba women. Patriarchy, religion and culture are conceived to have negative impact on the autonomy of women in respect to research participation. Among the important findings are: 1) male dominance is strongly emphasized by religious leaders who should teach equality, 2) while men feel that by making decisions for women, they are protecting them, the women on the other hand see this protection as a way of limiting their autonomy. We recommend further studies to develop culturally appropriate and workable recruitment methods to increase women's participation in research. © 2016 John Wiley & Sons Ltd.

  8. Risk perception and decision processes underlying informed consent to research participation.

    Science.gov (United States)

    Reynolds, William W; Nelson, Robert M

    2007-11-01

    According to the rational choice model, informed consent should consist of a systematic, step-by-step evaluation of all information pertinent to the treatment or research participation decision. Research shows that people frequently deviate from this normative model, however, employing decision-making shortcuts, or heuristics. In this paper we report findings from a qualitative study of 32 adolescents and (their) 31 parents who were recruited from two Northeastern US hospitals and asked to consider the risks of and make hypothetical decisions about research participation. The purpose of this study was to increase our understanding of how diabetic and at-risk adolescents (i.e., those who are obese and/or have a family history of diabetes) and their parents perceive risks and make decisions about research participation. Using data collected from adolescents and parents, we identify heuristic decision processes in which participant perceptions of risk magnitude, which are formed quickly and intuitively and appear to be based on affective responses to information, are far more prominent and central to the participation decision than are perceptions of probability. We discuss participants' use of decision-making heuristics in the context of recent research on affect and decision processes, and we consider the implications of these findings for researchers.

  9. Consulting the oracle: ten lessons from using the Delphi technique in nursing research.

    Science.gov (United States)

    Keeney, Sinead; Hasson, Felicity; McKenna, Hugh

    2006-01-01

    The aim of this paper was to provide insight into the Delphi technique by outlining our personal experiences during its use over a 10-year period in a variety of applications. As a means of achieving consensus on an issue, the Delphi research method has become widely used in healthcare research generally and nursing research in particular. The literature on this technique is expanding, mainly addressing what it is and how it should be used. However, there is still much confusion and uncertainty surrounding it, particularly about issues such as modifications, consensus, anonymity, definition of experts, how 'experts' are selected and how non-respondents are pursued. This issues that arise when planning and carrying out a Delphi study include the definition of consensus; the issue of anonymity vs. quasi-anonymity for participants; how to estimate the time needed to collect the data, analyse each 'round', feed back results to participants, and gain their responses to this feedback; how to define and select the 'experts' who will be asked to participate; how to enhance response rates; and how many 'rounds' to conduct. Many challenges and questions are raised when using the Delphi technique, but there is no doubt that it is an important method for achieving consensus on issues where none previously existed. Researchers need to adapt the method to suit their particular study.

  10. Family and physician influence on asthma research participation decisions for adolescents: the effects of adolescent gender and research risk.

    Science.gov (United States)

    Brody, Janet L; Scherer, David G; Annett, Robert D; Turner, Charles; Dalen, Jeanne

    2006-08-01

    There is considerable ethical and legal ambiguity surrounding the role of adolescents in the decision-making process for research participation. Depending on the nature of the study and the regulations involved, adolescents may have independent responsibility for providing informed consent, they may be asked to provide their assent, or they may be completely excluded from the decision-making process. This study examined parent and adolescent perceptions of decision-making authority and sources of influence on adolescent research participation decisions, and examined whether perceptions of influence differed based on adolescent gender and level of research risk. Adolescents (n = 36) with asthma and their parents reviewed 9 pediatric research protocols, decided whether they would choose to participate, rated the extent they would be responsible for the actual decision, and indicated the ability of family and physician to influence their decisions. Multivariate analyses of variance were used to evaluate differences in perceptions of decision-making authority and sources of influence on the decisions. Adolescents were less willing to cede decision making authority to parents than parents anticipated. Parents and adolescents acknowledged a greater openness to influence from physicians than from family for above minimal risk studies. Parents were more willing to consider opinions from male adolescents. Adolescents desire responsibility for research participation decisions, though parents may not share these views. Physicians' views on research participation are important to families, especially for above minimal risk studies. Parents may grant more decision-making autonomy to adolescent males than to females. Researchers, physicians, and institutions play a key role in facilitating the ethical enrollment of adolescents into biomedical research. Educational, policy, and oversight processes that support both adolescent autonomy and parental responsibility for research

  11. Trends in 'poor responder' research: lessons learned from RCTs in assisted conception.

    Science.gov (United States)

    Papathanasiou, Athanasios; Searle, Belinda J; King, Nicole M A; Bhattacharya, Siladitya

    2016-04-01

    A substantial minority of women undergoing IVF will under-respond to controlled ovarian hyperstimulation. These women-so-called 'poor responders'-suffer persistently reduced success rates after IVF. Currently, no single intervention is unanimously accepted as beneficial in overcoming poor ovarian response (POR). This has been supported by the available research on POR, which consists mainly of randomized controlled trials (RCTs ) with an inherent high-risk of bias. The aim of this review was to critically appraise the available experimental trials on POR and provide guidance towards more useful-less wasteful-future research. A comprehensive review was undertaken of RCTs on 'poor responders' published in the last 15 years. Data on various methodological traits as well as important clinical characteristics were extracted from the included studies and summarized, with a view to identifying deficiencies from which lessons can be learned. Based on this analysis, recommendations were provided for further research in this field of assisted conception. We selected and analysed 75 RCTs. A valid, 'low-risk' randomization method was reported in three out of four RCTs. An improving trend in reporting concealment of patient allocation was also evident over the 15-year period. In contrast, methodological quality were more likely to have been published in a high-impact journal. Overall, the majority of published trials on POR suffer from methodological flaws and are, thus, regarded as being high-risk for bias. The same trials have used a variety of definitions for their poor responders and a variety of interventions for their head-to-head comparisons. Not surprisingly, discrepancies are also evident in the findings of trials comparing similar interventions. Based on the identified deficiencies, this novel type of 'methodology and clinical' review has introduced custom recommendations on how to improve future experimental research in the 'poor responder' population. © The Author

  12. Strategies for Enhancing Family Participation in Research in the ICU: Findings From a Qualitative Study.

    Science.gov (United States)

    Dotolo, Danae; Nielsen, Elizabeth L; Curtis, J Randall; Engelberg, Ruth A

    2017-08-01

    Family members of critically ill patients who participate in research focused on palliative care issues have been found to be systematically different from those who do not. These differences threaten the validity of research and raise ethical questions about worsening disparities in care by failing to represent diverse perspectives. This study's aims were to explore: 1) barriers and facilitators influencing family members' decisions to participate in palliative care research; and 2) potential methods to enhance research participation. Family members who were asked to participate in a randomized trial testing the efficacy of a facilitator to improve clinician-family communication in the intensive care unit (ICU). Family members who participated (n = 17) and those who declined participation (n = 7) in Family Communication Study were interviewed about their recruitment experiences. We also included family members of currently critically ill patients to assess current experiences (n = 4). Interviews were audio-recorded and transcribed. Investigators used thematic analysis to identify factors influencing family members' decisions. Transcripts were co-reviewed to synthesize codes and themes. Three factors influencing participants' decisions were identified: Altruism, Research Experience, and Enhanced Resources. Altruism and Research Experience described intrinsic characteristics that are less amenable to strategies for improving participation rates. Enhanced Resources reflects families' desires for increased access to information and logistical and emotional support. Family members found their recruitment experiences to be positive when staff were knowledgeable about the ICU, sensitive to the stressful circumstances, and conveyed a caring attitude. By training research staff to be supportive of families' emotional needs and need for logistical knowledge about the ICU, recruitment of a potentially more diverse sample of families may be enhanced. Copyright © 2017

  13. Software Writing Skills for Your Research - Lessons Learned from Workshops in the Geosciences

    Science.gov (United States)

    Hammitzsch, Martin

    2016-04-01

    reviews. This assumes that scientist learn to write and release code and software as they learn to write and publish papers. Having this in mind, software could be valued and assessed as a contribution to science. But this requires the relevant skills that can be passed to colleagues and followers. Therefore, the GFZ German Research Centre for Geosciences performed three workshops in 2015 to address the passing of software writing skills to young scientists, the next generation of researchers in the Earth, planetary and space sciences. Experiences in running these workshops and the lessons learned will be summarized in this presentation. The workshops have received support and funding by Software Carpentry, a volunteer organization whose goal is to make scientists more productive, and their work more reliable, by teaching them basic computing skills, and by FOSTER (Facilitate Open Science Training for European Research), a two-year, EU-Funded (FP7) project, whose goal to produce a European-wide training programme that will help to incorporate Open Access approaches into existing research methodologies and to integrate Open Science principles and practice in the current research workflow by targeting the young researchers and other stakeholders.

  14. Diagnostic Labels, Stigma, and Participation in Research Related to Dementia and Mild Cognitive Impairment

    Science.gov (United States)

    Garand, Linda; Lingler, Jennifer H.; Conner, Kyaien O.; Dew, Mary Amanda

    2010-01-01

    Health care professionals use diagnostic labels to classify individuals for both treatment and research purposes. Despite their clear benefits, diagnostic labels also serve as cues that activate stigma and stereotypes. Stigma associated with the diagnostic labels of dementia and mild cognitive impairment (MCI) can have a significant and negative impact on interpersonal relationships, interactions with the health care community, attitudes about service utilization, and participation in clinical research. The impact of stigma also extends to the family caregivers of individuals bearing such labels. In this article, we use examples from our investigations of individuals with dementia or MCI and their family caregivers to examine the impact of labeling and stigma on clinical research participation. We also discuss how stigma can affect numerous aspects of the nursing research process. Strategies are presented for addressing stigma-related barriers to participation in clinical research on dementia and MCI. PMID:20077972

  15. Developing and providing an online (web-based) clinical research design course in Japan: lessons learned.

    Science.gov (United States)

    Clark, Glenn T; Mulligan, Roseann; Baba, Kazuyoshi

    2011-04-01

    This article reports on the lessons learned while teaching an 8-week-long online course about the principles of clinical research design in Japan. Student activity data and how it relates to performance in the course are presented. As prolog, this article focuses on the barriers and solutions to creating and delivering a web-based course and it lists and discusses the most common concerns that educators often have about this process, namely, cost of the system and time requirement of the faculty. Options that must be considered when selecting the support software and hardware needed to conduct live streaming lecture, online video-based conference course are presented. The ancillary role of e-mail based distribution lists as an essential instruction tool within an interactive, instructor-supervised online course is discussed. This article then discusses the inclusion of active learning elements within an online course as well as the pros and cons regarding open-book versus closed book, proctored testing. Lastly, copyright issues the online instructor should know about are discussed. The student tracking data show that as the course progresses, students will reduce the number for page viewings. We speculate that this reduction is due to a combination of conflicting priorities plus increasing efficiency of the students at extracting the critical information. The article also concludes that software and hardware costs to deliver an online course are relatively minor but the faculty's time requirement is initially substantially higher than teaching in a conventional face-to-face course. Copyright © 2011 Japan Prosthodontic Society. Published by Elsevier Ltd. All rights reserved.

  16. Multiple Comorbidities and Interest in Research Participation Among Clients of a Nonprofit Food Distribution Site.

    Science.gov (United States)

    Higashi, Robin T; Craddock Lee, Simon J; Leonard, Tammy; Cuate, Erica L; Cole, Jay; Pruitt, Sandi L

    2015-10-01

    Persons accessing food from nonprofit distribution sites face numerous challenges and typically have significant unmet health needs. However, given limited and intermittent healthcare system engagement, this vulnerable population is underrepresented in clinical research. We sought to better understand the health needs of a nonclinical population to inform future research and interventions. Focus groups were conducted in English (n = 4) and Spanish (n = 4) with clients of Crossroads Community Services (CCS), the largest distributor of North Texas Food Bank. Discussions probed participants' health status, healthcare utilization, understanding and utilization of mammography, and attitudes toward participation in research. Participants included 42 CCS clients, primarily Hispanic or African American women. Participants reported multiple comorbid conditions among household members, yet utilization of health services was often limited by cost. The majority expressed interest in participating in research to communicate their health concerns and obtain emotional support. CCS clients represent a high-need, under-reached population willing to engage in health-related research that affords them opportunity to connect with peers in group settings and obtain information to improve management of daily life challenges. The Community Assistance Research (CARe) Initiative, a community-academic collaboration, establishes a much-needed opportunity for ongoing clinical research and intervention among this underserved population. © 2015 Wiley Periodicals, Inc.

  17. Beliefs and attitudes towards participating in genetic research – a population based cross-sectional study

    Directory of Open Access Journals (Sweden)

    Kerath Samantha M

    2013-02-01

    Full Text Available Abstract Background Biobanks have the potential to offer a venue for chronic disease biomarker discovery, which would allow for disease early detection and for identification of carriers of a certain predictor biomarker. To assess the general attitudes towards genetic research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such research, participants from the NSLIJ hospital system were surveyed. Methods Participants were recruited at six hospital centers in the NSLIJ system during the summers of 2009 and again in 2011 (n = 1,041. Those who opted to participate were given a questionnaire containing 22 questions assessing demographics, lifestyle and attitudes towards genetic research. These questions addressed individual participant’s beliefs about the importance of genetic research, willingness to participate in genetic research themselves, and their views on informed consent issues. Results Respondents took a generally positive view of genetic research in general, as well as their own participation in such research. Those with reservations were most likely to cite concerns over the privacy of their medical and genetic information. Those who were married tended to view genetic research as important, while those in the younger age group viewed it as less important. Prior blood donation of respondents was found to be a predictor of their approval for genetic research. Demographic factors were not found to be predictive of personal willingness to participate in genetic research, or of approval for the opt-out approach to consent. Conclusions While respondents were generally inclined to approve of genetic research, and those who disapproved did not do so based on an underlying moral objection to such research, there is a disconnect between the belief in the importance of genetic research and the willingness of individuals to participate themselves. This indicates a

  18. Lesson Study-Building Communities of Learning Among Pre-Service Science Teachers

    Science.gov (United States)

    Hamzeh, Fouada

    Lesson Study is a widely used pedagogical approach that has been used for decades in its country of origin, Japan. It is a teacher-led form of professional development that involves the collaborative efforts of teachers in co-planning and observing the teaching of a lesson within a unit for evidence that the teaching practices used help the learning process (Lewis, 2002a). The purpose of this research was to investigate if Lesson Study enables pre-service teachers to improve their own teaching in the area of science inquiry-based approaches. Also explored are the self-efficacy beliefs of one group of science pre-service teachers related to their experiences in Lesson Study. The research investigated four questions: 1) Does Lesson Study influence teacher preparation for inquiry-based instruction? 2) Does Lesson Study improve teacher efficacy? 3) Does Lesson Study impact teachers' aspiration to collaborate with colleagues? 4) What are the attitudes and perceptions of pre-service teachers to the Lesson Study idea in Science? The 12 participants completed two pre- and post-study surveys: STEBI- B, Science Teaching Efficacy Belief Instrument (Enochs & Riggs, 1990) and ASTQ, Attitude towards Science Teaching. Data sources included student teaching lesson observations, lesson debriefing notes and focus group interviews. Results from the STEBI-B show that all participants measured an increase in efficacy throughout the study. This study added to the body of research on teaching learning communities, professional development programs and teacher empowerment.

  19. Ecology and Ethics in Participatory Collaborative Action Research: An Argument for the Authentic Participation of Students in Educational Research

    Science.gov (United States)

    Collins, Steve

    2004-01-01

    A conception of action research is offered that is collaborative, participatory, targets ethical issues and includes students. Collaboration is "organic" in that all members share the goal of the research and are interdependent in pursuing that goal. Participation is authentic, requiring a continuing negotiation of planning, roles, power…

  20. Project management lessons learned from building the Wendelstein 7-x stellerator fusion research reactor

    Energy Technology Data Exchange (ETDEWEB)

    Freire-Gormaly, M.; Gittens, A.; Zhang, L., E-mail: m.freire.gormaly@utoronto.ca, E-mail: antonio.gittens@mail.utoronto.ca, E-mail: lavender.zhang@outlook.com [University of Toronto, Toronto, ON (Canada)

    2015-07-01

    Wendelstein 7-X (W7-X) is the world's largest 'stellerator' nuclear fusion reactor being commissioned in Greifswald, Germany. It will inform the international fusion energy test device (ITER). The complexity of W7- X added challenges since industrial expertise to manufacture components did not exist. The construction was completed eight years behind schedule and almost 100% over budget. Key take-away lessons in project management were revealed from W7-X which can be applied to any nuclear project. These lessons are aligned with the project management knowledge areas of schedule, stakeholder, procurement, scope, schedule, cost, communication, risk, quality, human resources and procurement management. (author)

  1. Project management lessons learned from building the Wendelstein 7-x stellerator fusion research reactor

    International Nuclear Information System (INIS)

    Freire-Gormaly, M.; Gittens, A.; Zhang, L.

    2015-01-01

    Wendelstein 7-X (W7-X) is the world's largest 'stellerator' nuclear fusion reactor being commissioned in Greifswald, Germany. It will inform the international fusion energy test device (ITER). The complexity of W7- X added challenges since industrial expertise to manufacture components did not exist. The construction was completed eight years behind schedule and almost 100% over budget. Key take-away lessons in project management were revealed from W7-X which can be applied to any nuclear project. These lessons are aligned with the project management knowledge areas of schedule, stakeholder, procurement, scope, schedule, cost, communication, risk, quality, human resources and procurement management. (author)

  2. Informing potential participants about research: observational study with an embedded randomized controlled trial.

    Directory of Open Access Journals (Sweden)

    Helen M Kirkby

    Full Text Available OBJECTIVES: To assess: 1 the feasibility of electronic information provision; 2 gather evidence on the topics and level of detail of information potential research participant's accessed; 3 to assess satisfaction and understanding. DESIGN: Observational study with an embedded randomised controlled trial. SETTING: Low risk intervention study based in primary care. PARTICIPANTS: White British & Irish, South Asian and African-Caribbean subjects aged between 40-74 years eligible for a blood pressure monitoring study. INTERVENTIONS: PDF copy of the standard paper participant information sheet (PDF-PIS and an electronic Interactive Information Sheet (IIS where participants could choose both the type and level of detail accessed. MAIN OUTCOME MEASURES: 1 Proportion of participants providing an email address and accessing electronic information 2 Willingness to participate in a recruitment clinic. 3 Type and depth of information accessed on the IIS. 4 Participant satisfaction and understanding. RESULTS: 1160 participants were eligible for the study. Of these, 276 (24% provided an active email address, of whom 84 did not respond to the email. 106 responded to the email but chose not to access any electronic information and were therefore ineligible for randomisation. 42 were randomised to receive the PDF-PIS and 44 to receive the IIS (with consent rates of 48% and 36%, respectively; odds ratio 0.6, 95% confidence interval 0.25 to 1.4. Electronic observation of information accessed by potential participants showed 41% chose to access no information and only 9% accessed the detail presented on the Research Ethics Committee approved participant information sheet before booking to attend a recruitment clinic for the intervention study. 63 of the 106 participants (59% who chose not to access any electronic information also booked an appointment. CONCLUSIONS: Current written information about research may not be read, emphasising the importance of the consent

  3. Social participation: redesign of education, research, and practice in occupational therapy*.

    Science.gov (United States)

    Piškur, Barbara

    2013-01-01

    There is growing attention to participation and social participation in literature and policy reports. Occupational therapists strongly believe that creating coherence between the person's occupations and environment will facilitate participation of each individual. Nowadays, societal developments such as "health literacy and self-management", "Web 2.0 social media", "empowering communities", and "Nothing About Us Without Us" increase opportunities for people to interact on different levels of social participation. Social participation can be used as an outcome, though it can also be seen as a means to change society and to develop solutions for barriers experienced by people with chronic diseases or disabilities. Societal developments will have an impact on social participation in terms of supporting each other and contributing to society. Additionally, these changes will have a major influence on the way we educate, conduct research, and deliver occupational therapy practice.

  4. Developing and managing transdisciplinary and transformative research on the coastal dynamics of sea level rise: Experiences and lessons learned

    Science.gov (United States)

    DeLorme, Denise E.; Kidwell, David; Hagen, Scott C.; Stephens, Sonia H.

    2016-05-01

    There is increasing emphasis from funding agencies on transdisciplinary approaches to integrate science and end-users. However, transdisciplinary research can be laborious and costly and knowledge of effective collaborative processes in these endeavors is incomplete. More guidance grounded in actual project experiences is needed. Thus, this article describes and examines the collaborative process of the Ecological Effects of Sea Level Rise in the Northern Gulf of Mexico transdisciplinary research project, including its development, implementation, and evaluation. Reflections, considerations, and lessons learned from firsthand experience are shared, supported with examples, and connected to relevant scholarly literature.

  5. Decision-making by adolescents and parents of children with cancer regarding health research participation.

    Science.gov (United States)

    Read, Kate; Fernandez, Conrad Vincent; Gao, Jun; Strahlendorf, Caron; Moghrabi, Albert; Pentz, Rebecca Davis; Barfield, Raymond Carlton; Baker, Justin Nathaniel; Santor, Darcy; Weijer, Charles; Kodish, Eric

    2009-09-01

    Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials.

  6. Recruitment of Individuals With Dementia and Their Carers for Social Research: Lessons Learned From Nine Studies.

    Science.gov (United States)

    Beattie, Elizabeth; Fielding, Elaine; O'Reilly, Maria; Brooks, Deborah; MacAndrew, Margaret; McCrow, Judy

    2018-05-01

    Many health and social care research studies report difficulties recruiting sufficient numbers of participants, adding to time and money expenditures and potentially jeopardizing the generalizability of findings. The current article reports the effectiveness and resource requirements of recruitment strategies used in nine dementia-related studies conducted in Australia. Articles, notices, or advertisements in targeted specialist newsletters were the most cost-effective method of recruitment. The use of service providers to aid recruitment yielded mixed results, but was lengthy in terms of research time. Online and social media were low cost but not reliably effective in terms of recruitment potential. Despite using multiple strategies to maximize recruitment, significant challenges were encountered achieving the required sample sizes; in most cases these challenges resulted in delays in the recruitment phase. Implications for researchers in the fields of dementia and general social/health research are discussed. [Res Gerontol Nurs. 2018; 11(3):119-128.]. Copyright 2018, SLACK Incorporated.

  7. Exploitation of the vulnerable in research: Responses to lessons learnt in history.

    Science.gov (United States)

    Dhai, Amaboo

    2017-05-24

    The Nuremberg Trials raised insightful issues on how and why doctors who were trained in the Hippocratic tradition were able to commit such egregious and heinous medical crimes. The vulnerable were considered to be subhuman, of decreased intelligence, of no moral status and lacking human dignity. The reputation of the medical profession had been undermined, professionalism questioned and the doctor-patient relationship damaged as a result of the Nazi medical experiments. The World Medical Association's Declaration of Helsinki has been hailed as one of the most successful efforts in rescuing medical research from the darkness of the scandals and tragedies in health research. The first Research Ethics Committee in South Africa was established in 1966 at the University of the Witwatersrand. From the mid-1970s other institutions followed suit. The promulgation of the National Health Act No. 61 of 2003, in 2004, resulted in strong protectionism for research participants in the country.

  8. Exploitation of the vulnerable in research: Responses to lessons learnt in history

    Directory of Open Access Journals (Sweden)

    Amaboo Dhai

    2017-06-01

    Full Text Available The Nuremberg Trials raised insightful issues on how and why doctors who were trained in the Hippocratic tradition were able to commit such egregious and heinous medical crimes. The vulnerable were considered to be subhuman, of decreased intelligence, of no moral status and lacking human dignity. The reputation of the medical profession had been undermined, professionalism questioned and the doctor-patient relationship damaged as a result of the Nazi medical experiments. The World Medical Association’s Declaration of Helsinki has been hailed as one of the most successful efforts in rescuing medical research from the darkness of the scandals and tragedies in health research. The first Research Ethics Committee in South Africa was established in 1966 at the University of the Witwatersrand. From the mid-1970s other institutions followed suit. The promulgation of the National Health Act No. 61 of 2003, in 2004, resulted in strong protectionism for research participants in the country.

  9. Challenges in the Use of Social Networking Sites to Trace Potential Research Participants

    Science.gov (United States)

    Marsh, Jackie; Bishop, Julia C.

    2014-01-01

    This paper reports on a number of challenges faced in tracing contributors to research projects that were originally conducted many decades previously. The need to trace contributors in this way arises in projects which focus on involving research participants in previous studies who have not been maintained on a database, or with whom the…

  10. Facilitating the participation of people with aphasia in research : a description of strategies

    NARCIS (Netherlands)

    Dalemans, R.; Wade, D.T.; van den Heuvel, W.J.A.; de Witte, L.P.

    2009-01-01

    Background: People with aphasia are often excluded from research because of their communication impairments, especially when an investigation into the communication impairment is not the primary goal. In our research concerning social participation of people with aphasia, we wanted to include people

  11. Educating for a Critical Democracy: Civic Participation Reimagined in the Council of Youth Research

    Science.gov (United States)

    Mirra, Nicole; Morrell, Ernest D.; Cain, Ebony; Scorza, D'Artagnan; Ford, Arlene

    2013-01-01

    This article explores civic learning, civic participation, and the development of civic agency within the Council of Youth Research (the Council), a program that engages high school students in youth participatory action research projects that challenge school inequalities and mobilize others in pursuit of educational justice. We critique the…

  12. Our Anonymous Online Research Participants Are Not Always Anonymous: Is This a Problem?

    Science.gov (United States)

    Dawson, Phillip

    2014-01-01

    When educational research is conducted online, we sometimes promise our participants that they will be anonymous--but do we deliver on this promise? We have been warned since 1996 to be careful when using direct quotes in Internet research, as full-text web search engines make it easy to find chunks of text online. This paper details an empirical…

  13. 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.

  14. Low participation rates amongst Asian women: implications for research in reproductive medicine.

    Science.gov (United States)

    Talaulikar, V S; Hussain, S; Perera, A; Manyonda, I T

    2014-03-01

    The last two decades have witnessed tremendous advances in the field of reproductive medicine, especially assisted reproductive technology and stem cell research. As research continues in future, it is vital to ensure that individuals from all ethnic backgrounds are represented in the study populations so that the findings of the research can be generalised for the benefit of all. Many studies, however, have noted a trend of low participation rates amongst Asian women in reproductive research. Inequalities in the ethnicity of research participants can be a source of substantial bias, and have major ethical and scientific ramifications. Several factors such as educational status, fear of wrong-doing, communication barriers, and socio-cultural beliefs have been suggested to play a role. There is a need for further exploration of the factors influencing Asian women's decision to accept or decline participation in reproductive research and for development of effective targeted strategies for research recruitment with the aim of encouraging research participation as well as donation of cryopreserved embryos or other reproductive tissues. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.

  15. Building Bridges across Knowledge Systems: Ubuntu and Participative Research Paradigms in Bantu Communities

    Science.gov (United States)

    Muwanga-Zake, J. W. F.

    2009-01-01

    This paper discusses how Ubuntu as a philosophy and a methodology was used among Bantu in South Africa together with participative Western paradigms in evaluating an educational computer game. The paper argues that research among Bantu has to articulate research experiences within Ubuntu paradigms if valid outcomes are to be realised. (Contains 1…

  16. Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

    Science.gov (United States)

    Haas, Kaaren; Costley, Debra; Falkmer, Marita; Richdale, Amanda; Sofronoff, Kate; Falkmer, Torbjörn

    2016-01-01

    Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and…

  17. Creative and Arts-Based Research Methods in Academic Research. Lessons from a Participatory Research Project in the Netherlands

    Directory of Open Access Journals (Sweden)

    Gwenda van der Vaart

    2018-05-01

    Full Text Available This article contributes to the discussion on the value of creative and arts-based research methods to researchers interested in community resilience. Based on a participatory research project that used a mix of these methods conducted in a Dutch village, we provide more nuanced, concrete insights into their value. We elaborate on the three project stages: walking interviews, group discussions, and a creative workshop that resulted in an exhibition, and on the challenges encountered during our project. We discuss how each project stage contributed to producing multifaceted knowledge. Researchers can benefit from the discussions about the process and implications of creative and arts-based methods such as ours as, to date, there has been relatively little methodological reflection on these methods. Based on our study, we conclude that despite some challenges, creative and arts-based research methods have much to offer researchers interested in community resilience. We found they can: 1. generate deep insight by going beyond rational-cognitive ways of knowing and providing new ways of understanding people's real lived experiences and views; and 2. offer ways to "give back" and contribute to a community, potentially igniting a spark among community members to engage in further action and contribute to their community's resilience. This aligns with the, currently often articulated, aims of researchers to directly benefit those involved and to share their research findings with a broader non-academic audience.

  18. Note On Research Design For The Study Of Community Participation In Health Care Programmes

    Directory of Open Access Journals (Sweden)

    Rifkin Susan B

    1986-01-01

    Full Text Available After describing types of research designs for the study of community participation in health care programmes, this paper examines one methodology, the quantitative methodology, the quantitative methodology, in detail. It presents some of the major attractions and limitations of this approach. The attractions include the need for evaluation of success and failure and of cost effectiveness of programmes. The limitations include the inability of the approach to deal with definitions and interventions that cannot be quantitified and the difficulty of identifying casual relationship between interventions and outcomes. These characteristics are illustrated by a case by a medical school in Asia. Research design, research developments and research outcomes are described and analysed. The paper concludes that an alternative analysis which examines the linkages between participation and health improvements would be more useful as it would allow the political, social and economic dimensions of community participation to be examined.

  19. Improving subject recruitment, retention, and participation in research through Peplau's theory of interpersonal relations.

    Science.gov (United States)

    Penckofer, Sue; Byrn, Mary; Mumby, Patricia; Ferrans, Carol Estwing

    2011-04-01

    Recruitment and retention of persons participating in research is one of the most significant challenges faced by investigators. Although incentives are often used to improve recruitment and retention, evidence suggests that the relationship of the patient to study personnel may be the single, most important factor in subject accrual and continued participation. Peplau's theory of interpersonal relations provides a framework to study the nurse-patient relationship during the research process. In this paper the authors provide a brief summary of research strategies that have been used for the recruitment and retention of subjects and an overview of Peplau's theory of interpersonal relations including its use in research studies. In addition, a discussion of how this theory was used for the successful recruitment and retention of women with type 2 diabetes who participated in a clinical trial using a nurse-delivered psychoeducational intervention for depression is addressed.

  20. Kick-off research coordination meeting of the IAEA coordinated research project on analyses of, and lessons learned from the operational experience with fast reactor equipment and systems. Working material

    International Nuclear Information System (INIS)

    2007-01-01

    The specific objectives of the IAEA Coordinated Research Project (CRP) on Analyses of, and Lessons Learned from the Operational Experience with Fast Reactor Equipment and Systems are to - Preserve the feedback from commissioning, operation, and decommissioning experience of experimental and power sodium cooled fast reactors; - Enable easy access to the information from this feedback; - Produce lessons-learned/synthesis reports from the commissioning, operation, and decommissioning of experimental and power sodium cooled fast reactors. To achieve these objectives, the CRP participants will retrieve, assess and archive all the documentation and information relevant to feedback from commissioning, operation, and decommissioning of sodium cooled fast reactors. The archiving step may include conversion of the documents in electronic form and the preparation of electronic databases organized along scientific/technical topics and reactors. Then, the CRP will work on the critical review, assessment, and systematization of the available data, and will publish synthesis reports, including the appropriate recommendations from the 'lessons learned'. It is important to stress that these generalization efforts are crucial in view of the generational change occurring now: preserving the knowledge and experience of the generation who participated in the initial development work of sodium cooled fast reactors and is now retiring, and ultimately ensuring the systematic use of the operational feedback in the form of a 'lessons learned' approach, is essential since it was in the early stage of the studies that the key decisions and design choices were made. To accomplish the lessons-learned and synthesising work requires for as many as possible of the highly skilled specialists and pioneers in the sodium cooled fast reactor research and development area to be actively involved in the CRP. Thus, the first stage of the CRP will address feedback from operational experience with regard to

  1. Do East Asian and Euro-Canadian women differ in sexual psychophysiology research participation?

    Science.gov (United States)

    Woo, Jane S T; Brotto, Lori A; Yule, Morag A

    2010-07-01

    Evidence from studies of ethnic differences in sexual conservativeness and Papanicolaou (Pap) testing behaviors suggests that there may be culture-linked differences in rates of participation in physically invasive sexuality studies, resulting in volunteer bias. The effects of ethnicity and acculturation on participation in female psychophysiological sexual arousal research were investigated in a sample of Euro-Canadian (n = 50) and East Asian (n = 58) women. Participants completed a battery of questionnaires and were given either course credits or $10 for their participation. Participants were then informed about the opportunity to participate in a second phase of the study, which involved psychophysiological sexual arousal testing and which was completely optional. Contrary to expectations, the results showed that the East Asian women were more likely to participate in Phase 2 than the Euro-Canadian women. Among the East Asian women, greater heritage acculturation and lower mainstream acculturation predicted a lower likelihood of Phase 2 participation. The findings suggest the need to be wary of overgeneralizing female psychophysiological sexual arousal research results and may have implications for improving Pap testing behaviors in East Asian women.

  2. Suitability of customer relationship management systems for the management of study participants in biomedical research.

    Science.gov (United States)

    Schwanke, J; Rienhoff, O; Schulze, T G; Nussbeck, S Y

    2013-01-01

    Longitudinal biomedical research projects study patients or participants over a course of time. No IT solution is known that can manage study participants, enhance quality of data, support re-contacting of participants, plan study visits, and keep track of informed consent procedures and recruitments that may be subject to change over time. In business settings management of personal is one of the major aspects of customer relationship management systems (CRMS). To evaluate whether CRMS are suitable IT solutions for study participant management in biomedical research. Three boards of experts in the field of biomedical research were consulted to get an insight into recent IT developments regarding study participant management systems (SPMS). Subsequently, a requirements analysis was performed with stakeholders of a major biomedical research project. The successive suitability evaluation was based on the comparison of the identified requirements with the features of six CRMS. Independently of each other, the interviewed expert boards confirmed that there is no generic IT solution for the management of participants. Sixty-four requirements were identified and prioritized in a requirements analysis. The best CRMS was able to fulfill forty-two of these requirements. The non-fulfilled requirements demand an adaption of the CRMS, consuming time and resources, reducing the update compatibility, the system's suitability, and the security of the CRMS. A specific solution for the SPMS is favored instead of a generic and commercially-oriented CRMS. Therefore, the development of a small and specific SPMS solution was commenced and is currently on the way to completion.

  3. Employees' perspectives on ethically important aspects of genetic research participation: a pilot study.

    Science.gov (United States)

    Roberts, Laura Weiss; Warner, Teddy D; Geppert, Cynthia M A; Rogers, Melinda; Green Hammond, Katherine A

    2005-01-01

    Insights from genetic research may greatly improve our understanding of physical and mental illnesses and assist in the prevention of disease. Early experience with genetic information suggests that it may lead to stigma, discrimination, and other psychosocial harms, however, and this may be particularly salient in some settings, such as the workplace. Despite the importance of these issues, little is known about how healthy adults, including workers, perceive and understand ethically important issues in genetic research pertaining to physical and mental illness. We developed, pilot tested, and administered a written survey and structured interview to 63 healthy working adults in 2 settings. For this paper, we analyzed a subset of items that assessed attitudes toward ethically relevant issues related to participation in genetic research on physical and mental illness, such as its perceived importance, its acceptability for various populations, and appropriate motivations for participation. Our respondents strongly endorsed the importance of physical and mental illness genetic research. They viewed participation as somewhat to very acceptable for all 12 special population groups we asked about, including persons with mental illness. They perceived more positives than negatives in genetic research participation, giving neutral responses regarding potential risks. They affirmed many motivations for participation to varying degrees. Men tended to affirm genetic research participation importance, acceptability, and motivations more strongly than women. Healthy working persons may be willing partners in genetic research related to physical and mental illnesses in coming years. This project suggests the feasibility and value of evidence-based ethics inquiry, although further study is necessary. Evidence regarding stakeholders' perspectives on ethically important issues in science may help in the development of research practices and policy.

  4. Promising and Established Investigators' Experiences Participating in the National Athletic Trainers' Association Foundation Research Mentor Program.

    Science.gov (United States)

    Nottingham, Sara L; Mazerolle, Stephanie M; Barrett, Jessica L

    2017-04-01

      Mentorship is a helpful resource for individuals who transition from doctoral student to tenure-track faculty member. The National Athletic Trainers' Association (NATA) Research & Education Foundation offers a Research Mentor Program to provide mentorship to promising investigators, particularly as they work to establish independent lines of research.   To gain the perspectives of promising and established investigators on their participation in the NATA Foundation Research Mentor Program.   Qualitative, phenomenological research.   Higher education institutions.   Seven promising investigators (5 women, 2 men) and 7 established investigators (2 women, 5 men), all of whom had completed the NATA Foundation Research Mentor Program. Data Collection and Analysis We developed and piloted intervi: ew guides designed to gain participants' perspectives on their experiences participating in the NATA Foundation Research Mentor Program. Semistructured telephone interviews were completed with each individual and transcribed verbatim. Data were analyzed using a phenomenological approach, and saturation was obtained. Trustworthiness was established with the use of member checking, multiple-analyst triangulation, and data-source triangulation.   Three themes emerged from the interviews: (1) motivation, (2) collaboration, and (3) resources. Participants were motivated to become involved because they saw the value of mentorship, and mentees desired guidance in their research. Participants believed that collaboration on a project contributed to a positive relationship, and they also desired additional program and professional resources to support novice faculty.   Promising and established investigators should be encouraged to engage in mentoring relationships to facilitate mentees' research agendas and professional development. The NATA Foundation and athletic training profession may consider providing additional resources for novice faculty, such as training on

  5. Research Participation Decision-Making Among Youth and Parents of Youth With Chronic Health Conditions.

    Science.gov (United States)

    Pagano-Therrien, Jesica; Sullivan-Bolyai, Susan

    The aims of this qualitative descriptive study were to describe how past experiences with research (including communication, information, values, and support) may contribute to research fatigue among youth and parents of youth with HIV, cystic fibrosis, and Type 1 diabetes. Eighteen parents and youth were purposively recruited from outpatient subspecialty clinics at a major academic medical center. They took part in qualitative interviews and completed a demographics form and the Decisional Conflict Scale. Youth participants also completed the Erikson Psychosocial Stage Inventory. Two major themes emerged: Blurred Lines and Hope for the Future. Research fatigue was not found in this sample. Results point to challenges with informed consent in settings where research and clinical care are integrated and suggest that protective factors allow for continued participation without excess burden on youth and parents. Strategies to minimize research fatigue and support engagement in research are offered. Copyright © 2016 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.

  6. Making the case for OWTS management: lessons from case studies and research

    Science.gov (United States)

    Rahm, B.; Woods, F.; Hwang, S.; Walter, M. T.; Grantham, D. G.; Riha, S. J.

    2016-12-01

    On-site wastewater treatment systems (OWTS) are used in 20-25% of homes in the United States and can be an efficient and cost-effective alternative to conventional centralized systems. However, OWTS also represent a source of non-point nutrient, pathogen, and micro-contaminant pollution to surface and groundwater if they are poorly designed, sited and/or maintained. Despite their ubiquity and potential to negatively impact water resources, the contribution of OWTS to local and regional water contamination issues is poorly understood. There are no federal regulations or uniform standards for the operation, maintenance, and management of these systems. The effectiveness of educational programs and best management practices developed by the US Environmental Protection Agency, along with local and regional governments, remains uncertain. Here we describe attempts to increase our knowledge of the state of OWTS in relation to water resources and their management. Specifically, we summarize 1) efforts to modernize a NY State-wide inventory of residential OWTS using GIS-based tools; 2) research aimed at better understanding the impact of OWTS on surface and ground water in 5 upstate NY counties across a gradient of land uses; 3) lessons learned from 13 case studies of municipal OWTS management programs across the US; and 4) observations on the roles of data, education and policy in creating and evaluating successful municipal OWTS management programs. Initial results show that total numbers of OWTS in NY State continue to grow, particularly in areas associated with ex-urban migration. Research into the relationship between OWTS and nutrient and pathogen contamination in ground and surface waters, respectively, suggests location-specific variation. This has implications for management approaches: preventing failure of any individual OWTS may be just as effective as programs attempting to bring all OWTS up to a high level of performance. Case studies of management programs

  7. Redes En Acción. Increasing Hispanic participation in cancer research, training, and awareness.

    Science.gov (United States)

    Ramirez, Amelie G; Talavera, Gregory A; Marti, Jose; Penedo, Frank J; Medrano, Martha A; Giachello, Aida L; Pérez-Stable, Eliseo J

    2006-10-15

    Hispanics are affected by many health care disparities. The National Cancer Institute (NCI), through its Special Populations Branch, is supporting networking and capacity-building activities designed to increase Hispanic participation and leadership in cancer research. Redes En Acción established a national network of cancer research centers, community-based organizations, and federal partners to facilitate opportunities for junior Hispanic scientists to participate in training and research projects on cancer control. Since 2000, Redes En Acción has established a network of more than 1800 Hispanic leaders involved in cancer research and education. The project has sustained 131 training positions and submitted 29 pilot projects to NCI for review, with 16 awards for a total of $800,000, plus an additional $8.8 million in competing grant funding based on pilot study results to date. Independent research has leveraged an additional $32 million in non-Redes funding, and together the national and regional network sites have participated in more than 1400 community and professional awareness events. In addition, the program conducted extensive national survey research that provided the basis for the Redes En Acción Latino Cancer Report, a national agenda on Hispanic cancer issues. Redes En Acción has increased participation in cancer control research, training, and awareness among Hispanic scientists and within Hispanic communities. Cancer 2006. (c) 2006 American Cancer Society.

  8. ?Decision-making capacity for research participation among addicted people: a cross-sectional study?

    OpenAIRE

    Mor?n-S?nchez, In?s; Luna, Aurelio; S?nchez-Mu?oz, Maria; Aguilera-Alcaraz, Beatriz; P?rez-C?rceles, Maria D.

    2016-01-01

    Background Informed consent is a key element of ethical clinical research. Addicted population may be at risk for impaired consent capacity. However, very little research has focused on their comprehension of consent forms. The aim of this study is to assess the capacity of addicted individuals to provide consent to research. Methods 53 subjects with DSM-5 diagnoses of a Substance Use Disorder (SUD) and 50 non psychiatric comparison subjects (NPCs) participated in the survey from December 201...

  9. Ethical perspectives of children's assent for research participation: deontology and on utilitarianism.

    Science.gov (United States)

    Pieper, Pam

    2008-01-01

    Is a child's assent to participate in research that does not have the potential to directly benefit the child ethically mandated? Analysis of this particular dilemma of health care research in children using two competing theories results in different answers. Deontology (principle-based ethics) will be contrasted with utilitarianism (consequentialism). Historical cases of research with children will be used as exemplars of these two theoretical positions.

  10. Trust Building Recruitment Strategies for Researchers Conducting Studies in African American (AA) Churches: Lessons Learned.

    Science.gov (United States)

    Bonner, Gloria; Williams, Sharon; Wilkie, Diana; Hart, Alysha; Burnett, Glenda; Peacock, Geraldine

    2017-12-01

    An initial and vital important step in recruiting participants for church-based hospice and palliative care research is the establishment of trust and credibility within the church community. Mistrust of medical research is an extremely important barrier hindering recruitment in African American (AA) communities. A church-based EOL dementia education project is currently being conducted at four large urban AA churches. Church leaders voiced mistrust concerns of previous researchers who conducted investigations in their faith-based institutions. We explored strategies to ameliorate the mistrust concerns. Specific aim: To identify trust-rebuilding elements for researchers following others who violated trust of AA church leaders. Face-to-face, in-depth interviews were conducted from a convenient sample of four established AA church leaders. Interviews were held in the informants' churches to promote candor and comfort in revealing sensitive information about trust /mistrust. Content analysis framework was used to analyze the data. Elements identified from the analysis were then used to create themes. Multidimensional overarching themes emerged from the analysis included: Experience with researchers (positive and extremely negative), violation of trust and trust building strategies. Findings suggest that researchers who wish to conduct successful studies in the AA religious institutions must implement trust rebuilding strategies that include mutual respect, collaboration and partnership building. If general moral practices continue to be violated, threat to future hospice and palliative care research within the institutions may prevail. Thus, potential benefits are thwarted for the church members, AA community, and advancement of EOL care scholarship.

  11. Is a "wage-payment" model for research participation appropriate for children?

    Science.gov (United States)

    Bagley, Stephen J; Reynolds, William W; Nelson, Robert M

    2007-01-01

    Our goal was to evaluate the applicability of a "wage-payment" model to inducements for children to participate in research. We interviewed 42 children and adolescents between the ages of 4 and 16 years who had diabetes, asthma, seizures, or no chronic medical condition. The interview explored hypothetical participation decisions for up to 4 research scenarios. To evaluate factors that would influence children and adolescents' decision-making for research participation, we probed for the impact of monetary and other incentives. The interviews were transcribed and coded for specific themes related to money or other rewards and incentives. Older children, mainly those >9 years of age, showed an appreciation for the role and value of money through (a) an accurate concept of the material value of money in society or (b) asking for a realistic amount of money in exchange for their research participation. Younger children, primarily those payment model for compensating older children (>9 years of age) and adolescents for the time and effort of research participation is appropriate because they generally understand the meaning and value of a wage.

  12. [10 theses of the disabled persons' organizations - why participation research with a social perspective is needed].

    Science.gov (United States)

    Hinz, T

    2012-12-01

    The 5 professional associations for the disabled and the self-help organisations of disabled people state that in Germany a general concept for "participation research" is needed. This concept should address expectations and processes in developing aid services and improve self-determined participation of people with disabilities according to the human rights postulated in the UN Convention on the Rights of People with Disabilities (2006). A concept of "participation research" will go beyond the objectives and methods of i. e., disability studies - it is a focus in the context of which the social and equal participation of the disabled (especially those with multiple and/or intellectual handicaps) has to be addressed. In this context the 5 professional associations for the disabled have drafted 10 theses which are presented in the following article. © Georg Thieme Verlag KG Stuttgart · New York.

  13. Teachers' participation in research programs improves their students' achievement in science.

    Science.gov (United States)

    Silverstein, Samuel C; Dubner, Jay; Miller, Jon; Glied, Sherry; Loike, John D

    2009-10-16

    Research experience programs engage teachers in the hands-on practice of science. Program advocates assert that program participation enhances teachers' skills in communicating science to students. We measured the impact of New York City public high-school science teachers' participation in Columbia University's Summer Research Program on their students' academic performance in science. In the year before program entry, students of participating and nonparticipating teachers passed a New York State Regents science examination at the same rate. In years three and four after program entry, participating teachers' students passed Regents science exams at a rate that was 10.1% higher (P = 0.049) than that of nonparticipating teachers' students. Other program benefits include decreased teacher attrition from classroom teaching and school cost savings of U.S. $1.14 per $1 invested in the program.

  14. A 2-1-1 research collaboration: participant accrual and service quality indicators.

    Science.gov (United States)

    Eddens, Katherine S; Alcaraz, Kassandra I; Kreuter, Matthew W; Rath, Suchitra; Greer, Regina

    2012-12-01

    In times of crises, 2-1-1 serves as a lifeline in many ways. These crises often cause a spike in call volume that can challenge 2-1-1's ability to meet its service quality standards. For researchers gathering data through 2-1-1s, a sudden increase in call volume might reduce accrual as 2-1-1 has less time to administer study protocols. Research activities imbedded in 2-1-1 systems may affect directly 2-1-1 service quality indicators. Using data from a 2-1-1 research collaboration, this paper examines the impact of crises on call volume to 2-1-1, how call volume affects research participant accrual through 2-1-1, and how research recruitment efforts affect 2-1-1 service quality indicators. t-tests were used to examine the effect of call volume on research participant accrual. Linear and logistic regressions were used to examine the effect of research participant accrual on 2-1-1 service quality indicators. Data were collected June 2010-December 2011; data were analyzed in 2012. Findings from this collaboration suggest that crises causing spikes in call volume adversely affect 2-1-1 service quality indicators as well as accrual of research participants. Administering a brief (2-3 minute) health risk assessment did not affect service quality negatively, but administering a longer (15-18 minute) survey had a modest adverse effect on these indicators. In 2-1-1 research collaborations, both partners need to understand the dynamic relationship among call volume, research accrual, and service quality and adjust expectations accordingly. If research goals include administering a longer survey, increased staffing of 2-1-1 call centers may be needed to avoid compromising service quality. Copyright © 2012 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.

  15. Collaborative adaptations in social work intervention research in real-world settings: lessons learned from the field.

    Science.gov (United States)

    Blank Wilson, Amy; Farkas, Kathleen

    2014-01-01

    Social work research has identified the crucial role that service practitioners play in the implementation of evidence-based practices. This has led some researchers to suggest that intervention research needs to incorporate collaborative adaptation strategies in the design and implementation of studies focused on adapting evidence-based practices to real-world practice settings. This article describes a collaborative approach to service adaptations that was used in an intervention study that integrated evidence-based mental health and correctional services in a jail reentry program for people with serious mental illness. This description includes a discussion of the nature of the collaboration engaged in this study, the implementation strategies that were used to support this collaboration, and the lessons that the research team has learned about engaging a collaborative approach to implementing interventions in research projects being conducted in real-world social service delivery settings.

  16. The importance of experienced relevance and consequences related to research participation in migration and integration research

    DEFF Research Database (Denmark)

    Nielsen, Annemette; Ditlevsen, Kia

    2014-01-01

    Internationally, research within the area of health sciences has always suffered from a failure to include certain population groups in quantitative as well as qualitative research. Such population groups include migrant and ethnic minority groups. This bias in inclusion of different population...... segments has consequences for the representativity and possibility of generalizing study results and consequently may result in policies being designed to meet the needs of only the most resourceful segments of society. The lack of insight in to the experiences, attitudes of practices of certain population...... groups hence also represents a democratic problem in terms of ensuring the socially inclusive character of policies. This paper seeks to discuss how to better engage migrant populations and 'gatekeepers' around them in research. The paper takes its point of departure in three recent projects which have...

  17. Using Facebook and participant information clips to recruit emergency nurses for research.

    Science.gov (United States)

    Child, Rebekah Jay Howerton; Mentes, Janet C; Pavlish, Carol; Phillips, Linda R

    2014-07-01

    To examine the use of social networking sites in recruiting research participants. Workplace violence is an important issue for staff and patients. One workplace that reports the highest levels of violence is the emergency department. The ability to research issues such as workplace violence in real time is important in addressing them expeditiously, and social media can be used to advertise and recruit research subjects, implement studies and disseminate information. The experience of recruiting subjects through social networks, specifically Facebook, and the use of participant information clips (PICs) for advertising. A brief discussion of the history of advertising and communication using the internet is presented to provide an understanding of the trajectory of social media and implications for recruitment in general. The paper then focuses on the lead author's experience of recruiting subjects using Facebook, including its limitations and advantages, and her experience of using participant information clips. The low cost of advertising and recruiting participants this way, as well as the convenience provided to participants, resulted in almost half the study's total participants being obtained within 72 hours. Using Facebook to target a younger age range of nurses to participate in a study was successful and yielded a large number of completed responses in a short time period at little cost to the researcher. Recording the PIC was cheap, and posting it and a link to the site on pre-existing group pages was free, providing valuable viral marketing and snowball recruiting. Future researchers should not overlook using social network sites for recruitment if the demographics of the desired study population and subject matter permit it.

  18. Influence of ethical safeguards on research participation: comparison of perspectives of people with schizophrenia and psychiatrists.

    Science.gov (United States)

    Roberts, Laura W; Hammond, Katherine A Green; Warner, Teddy D; Lewis, Rae

    2004-12-01

    Several safeguards have been developed to protect research volunteers, but little is known about how the people involved in this research-the stakeholders-view these efforts to assure participant rights and well-being. The authors' goal was to examine these perspectives. As part of a larger study, 60 people with schizophrenia and 69 psychiatrists rated the protectiveness and influence on patients' willingness to participate in research of five safeguards: informed consent, alternative decision makers, institutional review boards, data safety monitoring boards, and confidentiality measures. All safeguards were perceived by both the participants with schizophrenia and by the psychiatrists as protective: on a scale of 1-5 on which 1=not protective at all and 5=very much protects, the mean scores ranged from 3.54 to 4.07. Four of the five safeguards were perceived by both the people with schizophrenia and by the psychiatrists as positively influencing patients' participation decisions. On a scale of 1-5 on which 1=much less willing and 5=much more willing to participate, the mean scores for these four safeguards ranged from 3.86 to 4.30. The mean score for the safeguard of an alternative decision maker, however, was 3.09. The ratings of protectiveness made by both the people with schizophrenia and the psychiatrists were correlated with their ratings of patients' willingness to participate in studies. Ethical commitment to research volunteers is expressed in safeguards. These efforts appear to be viewed positively by key stakeholders and may influence research participation decision making.

  19. Cost-effectiveness of health research study participant recruitment strategies: a systematic review.

    Science.gov (United States)

    Huynh, Lynn; Johns, Benjamin; Liu, Su-Hsun; Vedula, S Swaroop; Li, Tianjing; Puhan, Milo A

    2014-10-01

    A large fraction of the cost of conducting clinical trials is allocated to recruitment of participants. A synthesis of findings from studies that evaluate the cost and effectiveness of different recruitment strategies will inform investigators in designing cost-efficient clinical trials. To systematically identify, assess, and synthesize evidence from published comparisons of the cost and yield of strategies for recruitment of participants to health research studies. We included randomized studies in which two or more strategies for recruitment of participants had been compared. We focused our economic evaluation on studies that randomized participants to different recruitment strategies. We identified 10 randomized studies that compared recruitment strategies, including monetary incentives (cash or prize), direct contact (letters or telephone call), and medical referral strategies. Only two of the 10 studies compared strategies for recruiting participants to clinical trials. We found that allocating additional resources to recruit participants using monetary incentives or direct contact yielded between 4% and 23% additional participants compared to using neither strategy. For medical referral, recruitment of prostate cancer patients by nurses was cost-saving compared to recruitment by consultant urologists. For all underlying study designs, monetary incentives cost more than direct contact with potential participants, with a median incremental cost per recruitment ratio of Int$72 (Int$-International dollar, a theoretical unit of currency) for monetary incentive strategy compared to Int$28 for direct contact strategy. Only monetary incentives and source of referral were evaluated for recruiting participants into clinical trials. We did not review studies that presented non-monetary cost or lost opportunity cost. We did not adjust for the number of study recruitment sites or the study duration in our economic evaluation analysis. Systematic and explicit reporting of

  20. Protection of human research participants: accreditation of programmes in the Indian context.

    Science.gov (United States)

    Bhosale, Neelambari; Nigar, Shagoofa; Das, Soma; Divate, Uma; Divate, Pathik

    2014-01-01

    The recent negative media reports on the status of participants in clinical trials in India, together with the concerns expressed by the regulatory bodies, have raised questions regarding India's credibility in the conduct of clinical research. Even though the regulations require the registration of trials with the Clinical Trial Registry-India and despite the recently mandated registration of ethics committees (ECs) with the Drugs Controller General of India, the lack of governmental audit and accreditation procedures and bodies has resulted in inadequate protection of human participants in clinical research. Institutions and research sites would benefit by implementing a human research protection programme, which would safeguard the rights, safety and wellbeing of participants in clinical trials, in addition to improving the processes and procedures for the conduct of the trial. The Jehangir Clinical Development Centre, Pune has received accreditation from the Association for the Accreditation of Human Research Protection Programme (AAHRPP). A unique feature of the AAHRPP is the integrative nature of the programme, wherein the sponsors of the trial, investigators, EC members and institution work towards the common goal of protecting research participants. Here, we discuss the improvement needed in the quality standards of institutions for them to be able to meet the requirements of the AAHRPP. We also suggest the need for a governmental accreditation body, which will be required for the future promotion of and improvement in the standards for clinical practice in India.

  1. Comparisons of the utility of researcher-defined and participant-defined successful ageing.

    Science.gov (United States)

    Brown, Lynsey J; Bond, Malcolm J

    2016-03-01

    To investigate the impact of different approaches for measuring 'successful ageing', four alternative researcher and participant definitions were compared, including a novel measure informed by cluster analysis. Rates of successful ageing were explored, as were their relative associations with age and measures of successful adaptation, to assess construct validity. Participants, aged over 65, were recruited from community-based organisations. Questionnaires (assessing successful ageing, lifestyle activities and selective optimisation with compensation) were completed by 317 individuals. Successful ageing ranged from 11.4% to 87.4%, with higher rates evident from participant definitions. Though dependent upon the definition, successful agers were typically younger, reported greater engagement with lifestyle activities and more frequent optimisation. While the current study suggested an improved classification algorithm using a common research definition, future research should explore how subjective and objective aspects of successful ageing may be combined to derive a measure relevant to policy and practice. © 2016 AJA Inc.

  2. The power of research exploration within education: lessons from an international field hydrology course

    Science.gov (United States)

    Abou Najm, M. R.; Stewart, R. D.; Rupp, D. E.; Selker, J. S.; Lane, J. W.; Casanova, F.; Arumí, J.; Rivera, D.

    2011-12-01

    Educating the next generation of scientists requires new educational methods and unconventional approaches to facilitate the interdisciplinary scholarship required to cope with fast-paced developments in the geosciences. We believe incorporation of field training with active research missions is an effective educational model. By participating in active research and open science dialogue, students are exposed to real-world examples of the principles and processes of complex systems in a manner that allows them to develop a deeper understanding of the subject. We find students are highly motivated by the knowledge that data they collect will advance the research mission; such an environment stokes their passions and imaginations and allows the students to explore the roots of their interest in geoscience. In this context, a two-week educational field course on hydrologic processes and measurements was integrated with ongoing research in Chile to understand the effect of soil shrinkage and swelling properties on watershed hydrologic response. Students witnessed the iterative process of field-experiment design and became part of science in the making. They experienced the complexity of field work and developed problem-solving skills through the myriad of challenges presented in the acquisition of field data in a remote area. All of these factors contributed to an atmosphere of creativity that led to an outstanding research and educational experience. We find the coupling of field training with active research to be extremely rewarding, and time- and cost-effective education in this fast-paced and cost-cautious age.

  3. The Impact of and Lessons Learned from NITARP, the NASA/IPAC Teacher Archive Research Program

    Science.gov (United States)

    Rebull, L. M.; Nitarp Team

    2014-07-01

    NITARP, the NASA/IPAC Teacher Archive Research Program, gets teachers involved in authentic astronomical research. We partner small groups of educators with a professional astronomer mentor for a year-long original research project. The teams echo the entire research process, from writing a proposal, to doing the research, to presenting the results at an American Astronomical Society (AAS) meeting. The program runs from January through January. Applications are available annually in May and are due in September. The educators' experiences color their teaching for years to come, influencing hundreds of students per teacher. This program differs from other programs we know of that get real astronomy data into the classroom in three ways. First, each team works on an original, unique project. There are no canned labs here! Second, each team presents their results in posters in science sessions at an American Astronomical Society meeting alongside other researchers' work (participants are not given a “free pass” because they are educators or students). Third, the “product” is the scientific result, not any sort of curriculum packet. The teachers adapt their project and their experiences to fit in their classroom environment. NITARP changes the way teachers think about science and scientists. More information is available online at http://nitarp.ipac.caltech.edu/.

  4. Legislative Issues in Disclosing Financial Conflicts of Interest to Participants in Biomedical Research: Effectiveness and Methodology.

    Science.gov (United States)

    Kim, Jae Sun

    2017-12-01

    This research focuses on the analysis regarding disclosure of financial conflicts of interest (FCOI) after Gelsinger v. University of Pennsylvania (Penn). The main legal issue was that the participants did not have enough opportunity to make an autonomous decision about participating in the research because he was not informed about the researchers' and the institution's substantial FCOI. The disclosure system was adopted by the Code of Federal Regulations. Under the regulation, researchers and institutions need to report FCOI over $5,000 to the institution, and the internal review boards have to report to the federal authority if needed. In case of human research, the disclosure to Food and Drug Administration is mandatory. FCOI disclosure system would help participants to make an autonomous decision, and increase trust to the research process and researchers. Moreover, the system would let researchers keep fiduciary duty while (possibly) lowering legal liability in case of a lawsuit. There were discussions about the disclosure methodology in the United States. However, there have not been a lot of discussions in Korea even after the "Humidifier Disinfectant" case. Therefore, new legislations need to be considered. First, the system requires disclosure funded by not only government but also private institutions. Second, like California Supreme Court, the subject would be reviewed under the reasonable person standard by participants, including patents, equity, and stock. Third, the disclosure needs to include simple or brief explanation to the FCOI to be better understood by the participants. Fourth, the disclosure should be in the informed consent process. © 2017 The Korean Academy of Medical Sciences.

  5. Planning Today for Tomorrow’s Research: Analysis of Factors Influencing Participation in a Pediatric Cancer Research Biorepository

    Directory of Open Access Journals (Sweden)

    Rania M. Labib

    2018-01-01

    Full Text Available BackgroundBiobanks have become a powerful tool that fosters biomedical research. The success of biobanks depends upon people’s perception and willingness to donate their samples for research. This is the first biorepository in Egypt, hence, little is known about the beliefs and attitudes of parents toward participation.AimTo investigate the level of willingness of Egyptians to donate samples of their children and themselves for research and the different factors influencing participation.Materials and methodsA structured questionnaire was designed covering multiple items expected to affect the enrollment decision. This was conducted in-person, and data collected included demographic data, socioeconomic, and educational level. In addition, in the case of refusal, participants were asked about reasons behind their decision.ResultsOnly about 3.1% of patients have not been enrolled in the project, and 0.3% have withdrawn. Three demographic factors were found having disparate trends in the decision-making process to participate or not: father’s education (p = 0.0001, mother’s education (p = 0.0001, and father’s age (p = 0.034.ConclusionEgyptian parents were willing to donate their samples as well as their children’s samples in our research biorepository. The idea of participation was presented in an interview during which the consent form was explained in a comprehensive transparent way allowing participants the right to refuse or withdraw at any time. Still, different communication approaches are needed with older, more highly educated parents to encourage them to participate.

  6. Split views among parents regarding children's right to decide about participation in research: a questionnaire survey.

    Science.gov (United States)

    Swartling, U; Helgesson, G; Hansson, M G; Ludvigsson, J

    2009-07-01

    Based on extensive questionnaire data, this paper focuses on parents' views about children's right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at some point be allowed decisional authority when participating in research: 41.6% of the parents reported being against or unsure. Those who responded positively believed that children should be allowed to decide about blood-sampling procedures (70%), but to a less extent about participation (48.5%), analyses of samples (19.7%) and biological bank storage (15.4%). That as many as possible should remain in the study, and that children do not have the competence to understand the consequences for research was strongly stressed by respondents who do not think children should have a right to decide. When asked what interests they consider most important in paediatric research, child autonomy and decision-making was ranked lowest. We discuss the implications of these findings.

  7. Ethics review of health research on human participants in South Africa.

    Science.gov (United States)

    van Wyk, Christa

    2010-06-01

    In terms of South African legislation, all health research on human participants must be submitted to an accredited research ethics committee for independent ethics review. Health research covers a broad spectrum of research, including clinical trials. This article sets out the ethical-legal framework for the functioning and composition of such committees. It also deals with the newly created National Health Research Ethics Council, which registers and audits health research ethics committees. Special attention is given to the conduct of clinical trials. In conclusion, it is submitted that the National Health Act, the Draft Regulations Relating to Research on Human Subjects, and two sets of ethical guidelines adopted by the Department of Health provide a much needed and coherent ethical-legal framework for research in South Africa.

  8. The regulation of informed consent to participation in clinical research by mentally ill persons: An overview

    Directory of Open Access Journals (Sweden)

    A Nienaber

    2010-12-01

    Full Text Available The article examines the legal requirements relating to the informed consent of mentally ill persons to participation in clinical research in South Africa. First, the juridical basis of informed consent in South African law is outlined; and second, the requirements for lawful consent developed in South African common law and case law are presented. Finally, the article deliberates upon the requirements for the participation of mentally ill persons in research as laid down by the Mental Health Care Act and its regulations, the National Health Act and its (draft regulations, and the South African Constitution.

  9. Participants' perception of pharmaceutical clinical research: a cross-sectional controlled study

    Directory of Open Access Journals (Sweden)

    González-Saldivar G

    2016-04-01

    Full Text Available Gerardo González-Saldivar,1 René Rodríguez-Gutiérrez,2 José Luis Viramontes-Madrid,3 Alejandro Salcido-Montenegro,2 Kevin Erick Gabriel Carlos-Reyna,2 Andrés Marcelo Treviño-Alvarez,2 Neri Alejandro Álvarez-Villalobos,4 José Gerardo González-González2 1Ophthalmology Department, 2Endocrinology Division, Hospital Universitario “Dr. José E. González”, Facultad de Medicina, Universidad Autónoma de Nuevo León, Monterrey, Nuevo León, 3Instituto Nacional de Salud Pública, Cuernavaca, Morelos, 4Medical Statistics Department, Hospital Universitario “Dr. José E. González”, Facultad de Medicina, Universidad Autónoma de Nuevo León, Monterrey, Nuevo León, Mexico Background: There is scarce scientific information assessing participants’ perception of pharmaceutical research in developed and developing countries concerning the risks, safety, and purpose of clinical trials.Methods: To assess the perception that 604 trial participants (cases and 604 nonparticipants (controls of pharmaceutical clinical trials have about pharmaceutical clinical research, we surveyed participants with one of four chronic diseases from 12 research sites throughout Mexico.Results: Participation in clinical trials positively influences the perception of pharmaceutical clinical research. More cases (65.4% than controls (50.7% perceived that the main purpose of pharmaceutical research is to cure more diseases and to do so more effectively. In addition, more cases considered that there are significant benefits when participating in a research study, such as excellent medical care and extra free services, with this being the most important motivation to participate for both groups (cases 52%, controls 54.5%. We also found a sense of trust in their physicians to deal with adverse events, and the perception that clinical research is a benefit to their health, rather than a risk. More controls believed that clinical trial participants’ health is put at risk

  10. Recruiting Adolescent Research Participants: In-Person Compared to Social Media Approaches.

    Science.gov (United States)

    Moreno, Megan A; Waite, Alan; Pumper, Megan; Colburn, Trina; Holm, Matt; Mendoza, Jason

    2017-01-01

    Recruiting adolescent participants for research is challenging. The purpose of this study was to compare traditional in-person recruitment methods to social media recruitment. We recruited adolescents aged 14-18 years for a pilot physical activity intervention study, including a wearable physical activity tracking device and a Facebook group. Participants were recruited (a) in person from a local high school and an adolescent medicine clinic and (b) through social media, including Facebook targeted ads, sponsored tweets on Twitter, and a blog post. Data collected included total exposure (i.e., reach), engagement (i.e., interaction), and effectiveness. Effectiveness included screening and enrollment for each recruitment method, as well as time and resources spent on each recruitment method. In-person recruitment reached a total of 297 potential participants of which 37 enrolled in the study. Social media recruitment reached a total of 34,272 potential participants of which 8 enrolled in the study. Social media recruitment methods utilized an average of 1.6 hours of staff time and cost an average of $40.99 per participant enrolled, while in-person recruitment methods utilized an average of 0.75 hours of staff time and cost an average of $19.09 per participant enrolled. Social media recruitment reached more potential participants, but the cost per participant enrolled was higher compared to traditional methods. Studies need to consider benefits and downsides of traditional and social media recruitment methods based on study goals and population.

  11. Avatar Web-Based Self-Report Survey System Technology for Public Health Research: Technical Outcome Results and Lessons Learned.

    Science.gov (United States)

    Savel, Craig; Mierzwa, Stan; Gorbach, Pamina M; Souidi, Samir; Lally, Michelle; Zimet, Gregory; Interventions, Aids

    2016-01-01

    This paper reports on a specific Web-based self-report data collection system that was developed for a public health research study in the United States. Our focus is on technical outcome results and lessons learned that may be useful to other projects requiring such a solution. The system was accessible from any device that had a browser that supported HTML5. Report findings include: which hardware devices, Web browsers, and operating systems were used; the rate of survey completion; and key considerations for employing Web-based surveys in a clinical trial setting.

  12. Strategies for moving towards equity in recruitment of rural and Aboriginal research participants.

    Science.gov (United States)

    Wong, Sabrina T; Wu, Leena; Boswell, Brooke; Housden, Laura; Lavoie, Josee

    2013-01-01

    Equitable recruitment strategies, designed to ensure improved opportunities to participate in the research, are needed to include First Nations (FN) communities. The purpose of this article is to report on a set of successful strategies trialed with rural and FN communities in Canada. The strategies discussed were designed as part of a larger mixed-method study examining the effectiveness of Group Medical Visits (GMVs) on the quality of primary healthcare (PHC) in both FN reserve and northern communities in British Columbia (BC). Community partners and the study's decision-maker partners helped to identify and recruit primary care practices and reserve communities who were offering GMVs. Eleven communities (6 rural and 5 FN reserve) within the Northern Health Authority, BC participated in the study. Participants completed a survey either in person or via telephone. Content analysis was conducted on team meeting and field notes, focusing on issues related to the data collection process. Financial analysis was conducted on monetary resources spent on recruitment efforts in the various communities. Data were recorded regarding the number of times potential participants were contacted and mode of interview. Descriptive statistics were used to examine whether there were differences by mode of data collection, gender, and FN status. Logistic regression was used to examine whether FN status remained statistically significant after controlling for sex, education, employment status, age and health status. Once people were contacted, participation rate was 68% with 269 (n=90 men, n=179 women) people. Of those who participated in the survey, 42% were from FN communities. Content analysis revealed two overarching categories: (1) communication and coordination of the geographically dispersed research team and participating communities was maintained using synchronous and asynchronous methods; and (2) flexibility was needed to tailor recruitment strategies. Financial resources

  13. Balancing the risks and benefits of genomic data sharing: genome research participants' perspectives.

    Science.gov (United States)

    Oliver, J M; Slashinski, M J; Wang, T; Kelly, P A; Hilsenbeck, S G; McGuire, A L

    2012-01-01

    Technological advancements are rapidly propelling the field of genome research forward, while lawmakers attempt to keep apace with the risks these advances bear. Balancing normative concerns of maximizing data utility and protecting human subjects, whose privacy is at risk due to the identifiability of DNA data, are central to policy decisions. Research on genome research participants making real-time data sharing decisions is limited; yet, these perspectives could provide critical information to ongoing deliberations. We conducted a randomized trial of 3 consent types affording varying levels of control over data release decisions. After debriefing participants about the randomization process, we invited them to a follow-up interview to assess their attitudes toward genetic research, privacy and data sharing. Participants were more restrictive in their reported data sharing preferences than in their actual data sharing decisions. They saw both benefits and risks associated with sharing their genomic data, but risks were seen as less concrete or happening in the future, and were largely outweighed by purported benefits. Policymakers must respect that participants' assessment of the risks and benefits of data sharing and their privacy-utility determinations, which are associated with their final data release decisions, vary. In order to advance the ethical conduct of genome research, proposed policy changes should carefully consider these stakeholder perspectives. Copyright © 2011 S. Karger AG, Basel.

  14. Research priorities in health communication and participation: international survey of consumers and other stakeholders

    Science.gov (United States)

    Bragge, Peter; Lowe, Dianne; Nunn, Jack S; O’Sullivan, Molly; Horvat, Lidia; Tong, Allison; Kay, Debra; Ghersi, Davina; McDonald, Steve; Poole, Naomi; Bourke, Noni; Lannin, Natasha; Vadasz, Danny; Oliver, Sandy; Carey, Karen; Hill, Sophie J

    2018-01-01

    Objective To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in ‘health communication and participation’ (including such concepts as patient experience, shared decision-making and health literacy). Setting International. Participants We included anyone with an interest in health communication and participation. Up to 151 participants (18–80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both). Design Survey. Methods We invited people to submit their research ideas via an online survey open for 4 weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes. Results Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), ‘official’ health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals

  15. Axelrod, the pineal and the melatonin hypothesis: lessons of 50 years to shape chronodisruption research.

    Science.gov (United States)

    Erren, Thomas C; Reiter, Russel J

    2010-01-01

    With key work in the 1950s and 1960s, the 1970 Nobel laureate Julius Axelrod made major contributions to the development of pineal science. Looking back at some of his accomplishments in and for the field, we feel that lessons can be derived for future work regarding impairments of the pineal gland's and melatonin's many functions for promoting health and preventing disease in man.

  16. "The magic is in the mix": lessons from research capacity building in the Canadian tobacco control community, 2000-2010.

    Science.gov (United States)

    Riley, Barbara L; Viehbeck, Sarah M; Cohen, Joanna E; Chia, Marie C

    2013-02-25

    Global public health issues, including tobacco use, will be addressed most effectively if informed by relevant evidence. Additional capacity is needed to undertake and sustain relevant and rigorous research that will inform and enable learning from interventions. Despite the undisputed importance of research capacity building (RCB), there is little evidence about how to create relevant capacities. RCB for tobacco control in Canada from 2000-2010 offers a rich experience from which to learn. Lessons were derived using structured data collection from seven capacity-building initiatives and an invitational workshop, at which reflections on major contributions and lessons learned were discussed by initiative leads. Ten years of RCB for tobacco control in Canada revealed the importance of a) taking an organic approach to RCB, b) targeting and sustaining investments in a mix of RCB activities, c) vision and collaborative leadership at organizational and initiative levels, d) a focus on building community, and e) studying capacity building. The experience also provided tangible examples of RCB initiatives and how independent investments can be linked to create a coherent approach. Looking ahead, promising directions may include positioning RCB within a broader context of "field building", focusing on practical approaches to sustainability, and enhancing research on RCB.

  17. The limitations of language: male participants, stoicism, and the qualitative research interview.

    Science.gov (United States)

    Affleck, William; Glass, Kc; Macdonald, Mary Ellen

    2013-03-01

    The semistructured, open-ended interview has become the gold standard for qualitative health research. Despite its strengths, the long interview is not well suited for studying topics that participants find difficult to discuss, or for working with those who have limited verbal communication skills. A lack of emotional expression among male research participants has repeatedly been described as a significant and pervasive challenge by health researchers in a variety of different fields. This article explores several prominent theories for men's emotional inexpression and relates them to qualitative health research. The authors argue that investigators studying emotionally sensitive topics with men should look beyond the long interview to methods that incorporate other modes of emotional expression. This article concludes with a discussion of several such photo-based methods, namely, Photovoice, Photo Elicitation, and Visual Storytelling.

  18. The CAMPARE Program:A New Model Promoting Minority Participation in Astronomy Research and Education

    Science.gov (United States)

    Rudolph, Alexander L.; Impey, C. D.; Bieging, J. H.; Phillips, C. B.; Tieu, J.; Povich, M. S.

    2014-01-01

    The California-Arizona Minority Partnership for Astronomy Research and Education (CAMPARE) program represents a new and innovative kind of research program for undergraduates: one that can effectively carry out the goal of recruiting qualified minority and female students to participate in Astronomy and Planetary Science research opportunities, while mentoring them in a way to maximize the chance that these students will persist in obtaining their undergraduate degrees in STEM fields, and potentially go on to obtain their PhDs or pursue careers in those fields. The members of CAMPARE comprise a network of comprehensive universities and community colleges in Southern California and Arizona (most of which are minority serving institutions), and four major research institutions (University of Arizona Steward Observatory, the SETI Institute, and JPL/Caltech). Most undergraduate research programs focus on a single research institution. By having multiple institutions, we significantly broaden the opportunities for students, both in terms of breadth of research topics and geographical location.

  19. Initial experience with a group presentation of study results to research participants

    Directory of Open Access Journals (Sweden)

    Bent Stephen

    2008-03-01

    Full Text Available Abstract Background Despite ethical imperatives, informing research participants about the results of the studies in which they take part is not often performed. This is due, in part, to the costs and burdens of communicating with each participant after publication of the results. Methods Following the closeout and publication of a randomized clinical trial of saw palmetto for treatment of symptoms of benign prostatic hyperplasia, patients were invited back to the research center to participate in a group presentation of the study results. Results Approximately 10% of participants attended one of two presentation sessions. Reaction to the experience of the group presentation was very positive among the attendees. Conclusion A group presentation to research participants is an efficient method of communicating study results to those who desire to be informed and was highly valued by those who attended. Prospectively planning for such presentations and greater scheduling flexibility may result in higher attendance rates. Trial Registration Number Clinicaltrials.gov #NCT00037154

  20. Adapting an evidence-based model to retain adolescent study participants in longitudinal research.

    Science.gov (United States)

    Davis, Erin; Demby, Hilary; Jenner, Lynne Woodward; Gregory, Alethia; Broussard, Marsha

    2016-02-01

    Maintaining contact with and collecting outcome data from adolescent study participants can present a significant challenge for researchers conducting longitudinal studies. Establishing an organized and effective protocol for participant follow-up is crucial to reduce attrition and maintain high retention rates. This paper describes our methods in using and adapting the evidence-based Engagement, Verification, Maintenance, and Confirmation (EVMC) model to follow up with adolescents 6 and 12 months after implementation of a health program. It extends previous research by focusing on two key modifications to the model: (1) the central role of cell phones and texting to maintain contact with study participants throughout the EVMC process and, (2) use of responsive two-way communication between staff and participants and flexible administration modes and methods in the confirmation phase to ensure that busy teens not only respond to contacts, but also complete data collection. These strategies have resulted in high overall retention rates (87-91%) with adolescent study participants at each follow-up data collection point without the utilization of other, more involved tracking measures. The methods and findings presented may be valuable for other researchers with limited resources planning for or engaged in collecting follow-up outcome data from adolescents enrolled in longitudinal studies. Copyright © 2015. Published by Elsevier Ltd.

  1. Mars Public Mapping Project: Public Participation in Science Research; Providing Opportunities for Kids of All Ages

    Science.gov (United States)

    Rogers, L. D.; Valderrama Graff, P.; Bandfield, J. L.; Christensen, P. R.; Klug, S. L.; Deva, B.; Capages, C.

    2007-12-01

    The Mars Public Mapping Project is a web-based education and public outreach tool developed by the Mars Space Flight Facility at Arizona State University. This tool allows the general public to identify and map geologic features on Mars, utilizing Thermal Emission Imaging System (THEMIS) visible images, allowing public participation in authentic scientific research. In addition, participants are able to rate each image (based on a 1 to 5 star scale) to help build a catalog of some of the more appealing and interesting martian surface features. Once participants have identified observable features in an image, they are able to view a map of the global distribution of the many geologic features they just identified. This automatic feedback, through a global distribution map, allows participants to see how their answers compare to the answers of other participants. Participants check boxes "yes, no, or not sure" for each feature that is listed on the Mars Public Mapping Project web page, including surface geologic features such as gullies, sand dunes, dust devil tracks, wind streaks, lava flows, several types of craters, and layers. Each type of feature has a quick and easily accessible description and example image. When a participant moves their mouse over each example thumbnail image, a window pops up with a picture and a description of the feature. This provides a form of "on the job training" for the participants that can vary with their background level. For users who are more comfortable with Mars geology, there is also an advanced feature identification section accessible by a drop down menu. This includes additional features that may be identified, such as streamlined islands, valley networks, chaotic terrain, yardangs, and dark slope streaks. The Mars Public Mapping Project achieves several goals: 1) It engages the public in a manner that encourages active participation in scientific research and learning about geologic features and processes. 2) It helps to

  2. 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.

  3. Participative mental health consumer research for improving physical health care: An integrative review.

    Science.gov (United States)

    Happell, Brenda; Ewart, Stephanie B; Platania-Phung, Chris; Stanton, Robert

    2016-10-01

    People with mental illness have a significantly lower life expectancy and higher rates of chronic physical illnesses than the general population. Health care system reform to improve access and quality is greatly needed to address this inequity. The inclusion of consumers of mental health services as co-investigators in research is likely to enhance service reform. In light of this, the current paper reviews mental health consumer focussed research conducted to date, addressing the neglect of physical health in mental health care and initiatives with the aim of improving physical health care. The international literature on physical healthcare in the context of mental health services was searched for articles, including mental health consumers in research roles, via Medline, CINAHL and Google Scholar, in October 2015. Four studies where mental health consumers participated as researchers were identified. Three studies involved qualitative research on barriers and facilitators to physical health care access, and a fourth study on developing technologies for more effective communication between GPs and patients. This review found that participatory mental health consumer research in physical health care reform has only become visible in the academic literature in 2015. Heightened consideration of mental health consumer participation in research is required by health care providers and researchers. Mental health nurses can provide leadership in increasing mental health consumer research on integrated care directed towards reducing the health gap between people with and without mental illness. © 2016 Australian College of Mental Health Nurses Inc.

  4. Lessons learned obtaining informed consent in research with vulnerable populations in community health center settings

    Directory of Open Access Journals (Sweden)

    Riden Heather E

    2012-11-01

    Full Text Available Abstract Background To improve equity in access to medical research, successful strategies are needed to recruit diverse populations. Here, we examine experiences of community health center (CHC staff who guided an informed consent process to overcome recruitment barriers in a medical record review study. Methods We conducted ten semi-structured interviews with CHC staff members. Interviews were audiotaped, transcribed, and structurally and thematically coded. We used NVivo, an ethnographic data management software program, to analyze themes related to recruitment challenges. Results CHC interviewees reported that a key challenge to recruitment included the difficult balance between institutional review board (IRB requirements for informed consent, and conveying an appropriate level of risk to patients. CHC staff perceived that the requirements of IRB certification itself posed a barrier to allowing diverse staff to participate in recruitment efforts. A key barrier to recruitment also included the lack of updated contact information on CHC patients. CHC interviewees reported that the successes they experienced reflected an alignment between study aims and CHC goals, and trusted relationships between CHCs and staff and the patients they recruited. Conclusions Making IRB training more accessible to CHC-based staff, improving consent form clarity for participants, and developing processes for routinely updating patient information would greatly lower recruitment barriers for diverse populations in health services research.

  5. Comparative Research of Residents’ Effect Perception and Participation Capacity and Willingness on Pro-poor Tourism

    Institute of Scientific and Technical Information of China (English)

    Guoqing; HUANG; Hong; SHU

    2014-01-01

    In this article,comparative research on residents’ effect perception,participation capacity and willingness on Pro-poor Tourism( PPT) is given based on the questionnaire carried out in Wulong County and Fengjie County in Three Gorges Area,Chongqing,China. Some technologies,such as SPSS 13. 0,ANOVA and T-test are applied to analyze the data and results show Wulong residents’ perception behavior is better than that of Fengjie residents. Moreover,the residents with different demographic characteristics have different participation behavior.Finally,multiple regression analysis is applied to identify the key factors influencing residents’ perception behavior,that is participation willingness and positive economic effect perception,positive social and cultural effect perception and participation capacity.

  6. A Review of Barriers to Minorities' Participation in Cancer Clinical Trials: Implications for Future Cancer Research.

    Science.gov (United States)

    Salman, Ali; Nguyen, Claire; Lee, Yi-Hui; Cooksey-James, Tawna

    2016-04-01

    To enhance nurses' awareness and competencies in practice and research by reporting the common barriers to participation of minorities in cancer clinical trials and discussing facilitators and useful strategies for recruitment. Several databases were searched for articles published in peer reviewed journals. Some of the barriers to minorities' participation in clinical trials were identified within the cultural social-context of cancer patients. The involvement of community networking was suggested as the most effective strategy for the recruitment of minorities in cancer clinical trials. Using culturally sensitive approaches to enhance ethnic minorities' participation is important for advancing cancer care and eliminating health disparities. Awareness of barriers and potential facilitators to the enrollment of ethnic minority cancer patients may contribute to enhancing nurses' competencies of recruiting ethnic minorities in nursing research, playing efficient roles in cancer clinical trials team, and providing culturally competent quality care.

  7. A Trend Analysis of Participant and Setting Characteristics in Autism Intervention Research

    Science.gov (United States)

    Crosland, Kimberly A.; Clarke, Shelley; Dunlap, Glen

    2013-01-01

    The current trend analysis was conducted to empirically document the characteristics of individuals with autism who participated in intervention research published between 1995 and 2009 in three journals ("Journal of Applied Behavior Analysis," "Journal of Autism and Developmental Disorders," and "Focus on Autism and Other…

  8. 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

  9. Rethinking Data Sharing and Human Participant Protection in Social Science Research: Applications from the Qualitative Realm

    Directory of Open Access Journals (Sweden)

    Dessi Kirilova

    2017-09-01

    Full Text Available While data sharing is becoming increasingly common in quantitative social inquiry, qualitative data are rarely shared. One factor inhibiting data sharing is a concern about human participant protections and privacy. Protecting the confidentiality and safety of research participants is a concern for both quantitative and qualitative researchers, but it raises specific concerns within the epistemic context of qualitative research. Thus, the applicability of emerging protection models from the quantitative realm must be carefully evaluated for application to the qualitative realm. At the same time, qualitative scholars already employ a variety of strategies for human-participant protection implicitly or informally during the research process. In this practice paper, we assess available strategies for protecting human participants and how they can be deployed. We describe a spectrum of possible data management options, such as de-identification and applying access controls, including some already employed by the Qualitative Data Repository (QDR in tandem with its pilot depositors. Throughout the discussion, we consider the tension between modifying data or restricting access to them, and retaining their analytic value. We argue that developing explicit guidelines for sharing qualitative data generated through interaction with humans will allow scholars to address privacy concerns and increase the secondary use of their data.

  10. Disclosure of individual genetic data to research participants: the debate reconsidered

    NARCIS (Netherlands)

    Bredenoord, A.L.; Kroes, H.Y.; Cuppen, E.; Parker, M.; van Delden, J.J.M.

    2010-01-01

    Despite extensive debate, there is no consensus on whether individual genetic data should be disclosed to research participants. The emergence of whole-genome sequencing methods is increasingly generating unequalled amounts of genetic data, making the need for a clear feedback policy even more

  11. Motives for participating in a clinical research trial: a pilot study in Brazil

    Directory of Open Access Journals (Sweden)

    Nappo Solange A

    2013-01-01

    Full Text Available Abstract Background In the past, clinical study participants have suffered from the experiments that they were subjected to. Study subjects may not understand the study process or may participate in clinical studies because they do not have access to medical care. The objectives of the present study were 1. to analyze the motives that might cause a volunteer to participate as a study subject; 2. to identify the social-demographic profile of this study subjects; and 3. to determine whether the motives to volunteer as a study subject are in accordance with the established legal and ethical principles for research in Brazil. Methods Mixed-methods research was used (a qualitative-quantitative approach. A sample of 80 volunteers underwent a semi-structured interview, which was based on a survey script that was elaborated from discussions with key informants. The sample was randomly selected from a database of clinical study volunteers that was provided by Brazilian clinical study centers. The interviews were recorded and transcribed. Descriptive statistics were used for content analysis, including contingency tables with hypothesis testing. Results The motivations for clinical study participation were linked to types of benefit. The most frequently encountered motivations were financial gain and therapeutic alternative. Altruism was not a common motivator, and when altruism was present, it was observed as a secondary motivator. All participants reported that they understood the Informed Consent Statement (ICS. However, only two parts of the form were remembered by all of the volunteers: the section on being able to leave the study at any point and the section that stated that there would be some responsible professional at their disposal for the entirety of the study. Conclusions The present study shows that study participants are primarily motivated by personal benefit when volunteering to participate in clinical studies. Whether these study

  12. Motives for participating in a clinical research trial: a pilot study in Brazil.

    Science.gov (United States)

    Nappo, Solange A; Iafrate, Giovanna B; Sanchez, Zila M

    2013-01-10

    In the past, clinical study participants have suffered from the experiments that they were subjected to. Study subjects may not understand the study process or may participate in clinical studies because they do not have access to medical care. The objectives of the present study were 1. to analyze the motives that might cause a volunteer to participate as a study subject; 2. to identify the social-demographic profile of this study subjects; and 3. to determine whether the motives to volunteer as a study subject are in accordance with the established legal and ethical principles for research in Brazil. Mixed-methods research was used (a qualitative-quantitative approach). A sample of 80 volunteers underwent a semi-structured interview, which was based on a survey script that was elaborated from discussions with key informants. The sample was randomly selected from a database of clinical study volunteers that was provided by Brazilian clinical study centers. The interviews were recorded and transcribed. Descriptive statistics were used for content analysis, including contingency tables with hypothesis testing. The motivations for clinical study participation were linked to types of benefit. The most frequently encountered motivations were financial gain and therapeutic alternative. Altruism was not a common motivator, and when altruism was present, it was observed as a secondary motivator. All participants reported that they understood the Informed Consent Statement (ICS). However, only two parts of the form were remembered by all of the volunteers: the section on being able to leave the study at any point and the section that stated that there would be some responsible professional at their disposal for the entirety of the study. The present study shows that study participants are primarily motivated by personal benefit when volunteering to participate in clinical studies. Whether these study participants had an integral understanding of the ICS is not clear.

  13. Developing longitudinal qualitative designs: lessons learned and recommendations for health services research.

    Science.gov (United States)

    Calman, Lynn; Brunton, Lisa; Molassiotis, Alex

    2013-02-06

    Longitudinal qualitative methods are becoming increasingly used in the health service research, but the method and challenges particular to health care settings are not well described in the literature.We reflect on the strategies used in a longitudinal qualitative study to explore the experience of symptoms in cancer patients and their carers, following participants from diagnosis for twelve months; we highlight ethical, practical, theoretical and methodological issues that need to be considered and addressed from the outset of a longitudinal qualitative study. Key considerations in undertaking longitudinal qualitative projects in health research, include the use of theory, utilizing multiple methods of analysis and giving consideration to the practical and ethical issues at an early stage. These can include issues of time and timing; data collection processes; changing the topic guide over time; recruitment considerations; retention of staff; issues around confidentiality; effects of project on staff and patients, and analyzing data within and across time. As longitudinal qualitative methods are becoming increasingly used in health services research, the methodological and practical challenges particular to health care settings need more robust approaches and conceptual improvement. We provide recommendations for the use of such designs. We have a particular focus on cancer patients, so this paper will have particular relevance for researchers interested in chronic and life limiting conditions.

  14. Researcher readiness for participating in community-engaged dissemination and implementation research: a conceptual framework of core competencies.

    Science.gov (United States)

    Shea, Christopher M; Young, Tiffany L; Powell, Byron J; Rohweder, Catherine; Enga, Zoe K; Scott, Jennifer E; Carter-Edwards, Lori; Corbie-Smith, Giselle

    2017-09-01

    Participating in community-engaged dissemination and implementation (CEDI) research is challenging for a variety of reasons. Currently, there is not specific guidance or a tool available for researchers to assess their readiness to conduct CEDI research. We propose a conceptual framework that identifies detailed competencies for researchers participating in CEDI and maps these competencies to domains. The framework is a necessary step toward developing a CEDI research readiness survey that measures a researcher's attitudes, willingness, and self-reported ability for acquiring the knowledge and performing the behaviors necessary for effective community engagement. The conceptual framework for CEDI competencies was developed by a team of eight faculty and staff affiliated with a university's Clinical and Translational Science Award (CTSA). The authors developed CEDI competencies by identifying the attitudes, knowledge, and behaviors necessary for carrying out commonly accepted CE principles. After collectively developing an initial list of competencies, team members individually mapped each competency to a single domain that provided the best fit. Following the individual mapping, the group held two sessions in which the sorting preferences were shared and discrepancies were discussed until consensus was reached. During this discussion, modifications to wording of competencies and domains were made as needed. The team then engaged five community stakeholders to review and modify the competencies and domains. The CEDI framework consists of 40 competencies organized into nine domains: perceived value of CE in D&I research, introspection and openness, knowledge of community characteristics, appreciation for stakeholder's experience with and attitudes toward research, preparing the partnership for collaborative decision-making, collaborative planning for the research design and goals, communication effectiveness, equitable distribution of resources and credit, and

  15. Ethical issues in identifying and recruiting participants for familial genetic research.

    Science.gov (United States)

    Beskow, Laura M; Botkin, Jeffrey R; Daly, Mary; Juengst, Eric T; Lehmann, Lisa Soleymani; Merz, Jon F; Pentz, Rebecca; Press, Nancy A; Ross, Lainie Friedman; Sugarman, Jeremy; Susswein, Lisa R; Terry, Sharon F; Austin, Melissa A; Burke, Wylie

    2004-11-01

    Family-based research is essential to understanding the genetic and environmental etiology of human disease. The success of family-based research often depends on investigators' ability to identify, recruit, and achieve a high participation rate among eligible family members. However, recruitment of family members raises ethical concerns due to the tension between protecting participants' privacy and promoting research quality, and guidelines for these activities are not well established. The Cancer Genetics Network Bioethics Committee assembled a multidisciplinary group to explore the scientific and ethical issues that arise in the process of family-based recruitment. The group used a literature review as well as expert opinion to develop recommendations about appropriate approaches to identifying, contacting, and recruiting family members. We conclude that there is no single correct approach, but recommend a balanced approach that takes into account the nature of the particular study as well as its recruitment goals. Recruitment of family members should be viewed as part of the research protocol and should require appropriate informed consent of the already-enrolled participant. Investigators should inform prospective participants why they are being contacted, how information about them was obtained, and what will happen to that information if they decide not to participate. The recruitment process should also be sensitive to the fact that some individuals from families at increased genetic risk will have no prior knowledge of their risk status. These recommendations are put forward to promote further discussion about the advantages and disadvantages of various approaches to family-based recruitment. They suggest a framework for considering alternative recruitment strategies and their implications, as well as highlight areas in need of further empirical research. (c) 2004 Wiley-Liss, Inc.

  16. Community Partner Perspectives on Benefits, Challenges, Facilitating Factors, and Lessons Learned from Community-Based Participatory Research Partnerships in Detroit.

    Science.gov (United States)

    Caldwell, Wilma Brakefield; Reyes, Angela G; Rowe, Zachary; Weinert, Julia; Israel, Barbara A

    2015-01-01

    There is an extensive body of literature on community-based participatory research (CBPR) and the role of community-academic partnerships, much of which has involved community partners in the conceptualization and preparation of publications. However, there has been a relative dearth of solely community voices addressing these topics, given the other roles and responsibilities which community members and leaders of community-based organizations (CBOs) have. The purpose of this article is to share the perspectives of three long-time (>20 years) community partners involved in the Detroit Community-Academic Urban Research Center and its affiliated partnerships. In this article, we community partners provide our assessment of the benefits and challenges in using a CBPR approach at the personal, organizational, and community levels; the factors that facilitate effective partnerships; and our lessons learned through engagement in CBPR. We also present specific recommendations from a community perspective to researchers and institutions interested in conducting CBPR.

  17. Domestic violence among adolescents in HIV prevention research in Tanzania: Participant experiences and measurement issues

    Science.gov (United States)

    Baumgartner, Joy Noel; Kaaya, Sylvia; Karungula, Happy; Kaale, Anna; Headley, Jennifer; Tolley, Elizabeth

    2014-01-01

    Objectives Under-representation of female adolescents in HIV clinical trials may inhibit their access to future prevention technologies. Domestic violence, broadly defined as violence perpetrated by intimate partners and/or family members, may affect trial participation. This study describes violence in the lives of adolescents and young women in Tanzania, explores use of the Women’s Experience with Battering (WEB) Scale to measure battering, and examines the associations between battering and socio-demographic and HIV risk factors. Methods Community formative research (CFR) and a mock clinical trial (MCT) were conducted to examine the challenges of recruiting younger (15-17) versus older (18-21) participants into HIV prevention trials. The CFR included qualitative interviews with 23 participants and there were 135 MCT participants. The WEB was administered in both the CFR and MCT. Results Nineteen CFR participants experienced physical/sexual violence and 17% scored positive for battering. All married participants reported partner-related domestic violence, and half scored positive for battering. Many believed beatings were normal. None of the single participants scored positive on battering, but one-third reported abuse by relatives. Among MCT participants, 15% scored positive for battering; most perpetrators were relatives. Younger participants were more likely to report battering. Conclusions Adolescents experienced high rates of domestic violence and the WEB captured battering from both partners and relatives. The level of familial violence was unexpected and has implications for parental roles in study recruitment. Addressing adolescent abuse in HIV prevention trials and in the general population should be a public health priority. PMID:24740725

  18. Participation in college laboratory research apprenticeships among students considering careers in medicine

    Directory of Open Access Journals (Sweden)

    Dorothy A. Andriole

    2015-06-01

    Full Text Available Objective: We sought to determine the prevalence of college laboratory research apprenticeship (CLRA participation among students considering medical careers and to examine the relationship between CLRA participation and medical-school acceptance among students who applied to medical school. Methods: We used multivariate logistic regression to identify predictors of: 1 CLRA participation in a national cohort of 2001–2006 Pre-Medical College Admission Test (MCAT Questionnaire (PMQ respondents and 2 among those PMQ respondents who subsequently applied to medical school, medical-school acceptance by June 2013, reporting adjusted odds ratios (aOR and 95% confidence intervals (95% CI. Results: Of 213,497 PMQ respondents in the study sample (81.2% of all 262,813 PMQ respondents in 2001–2006, 72,797 (34.1% reported CLRA participation. Each of under-represented minorities in medicine (URM race/ethnicity (vs. white, aOR: 1.04; 95% CI: 1.01–1.06, Asian/Pacific Islander race/ethnicity (vs. white, aOR: 1.20; 95% CI: 1.17–1.22, and high school summer laboratory research apprenticeship (HSLRA participation (aOR: 3.95; 95% CI: 3.84–4.07 predicted a greater likelihood of CLRA participation. Of the 213,497 PMQ respondents in the study sample, 144,473 (67.7% had applied to medical school and 87,368 (60.5% of 144,473 medical-school applicants had been accepted to medical school. Each of female gender (vs. male, aOR: 1.19; 95% CI: 1.16–1.22, URM race/ethnicity (vs. white, aOR: 3.91; 95% CI: 3.75–4.08, HSLRA participation (aOR: 1.11; 95% CI: 1.03–1.19, CLRA participation (aOR: 1.12; 95% CI: 1.09–1.15, college summer academic enrichment program participation (aOR: 1.26; 95% CI: 1.21–1.31, and higher MCAT score (per point increase, aOR: 1.31; 95% CI: 1.30–1.31 predicted a greater likelihood of medical-school acceptance. Conclusions: About one-third of all PMQ respondents had participated in CLRAs prior to taking the MCAT, and such participation

  19. Public Engagement Through Shared Immersion: Participating in the Processes of Research.

    Science.gov (United States)

    Tang, Jessica Janice; Maroothynaden, Jason; Bello, Fernando; Kneebone, Roger

    2013-10-01

    Recently, the literature has emphasized the aims and logistics of public engagement, rather than its epistemic and cultural processes. In this conceptual article, we use our work on surgical simulation to describe a process that has moved from the classroom and the research laboratory into the public sphere. We propose an innovative shared immersion model for framing the relationship between engagement activities and research. Our model thus frames the public engagement experience as a participative encounter, which brings visitor and researcher together in a shared (surgical) experience mediated by experts from a range of domains.

  20. Breathing Life into Engineering: A Lesson Study Life Science Lesson

    Science.gov (United States)

    Lawrence, Maria; Yang, Li-Ling; Briggs, May; Hession, Alicia; Koussa, Anita; Wagoner, Lisa

    2016-01-01

    A fifth grade life science lesson was implemented through a lesson study approach in two fifth grade classrooms. The research lesson was designed by a team of four elementary school teachers with the goal of emphasizing engineering practices consistent with the "Next Generation Science Standards" (NGSS) (Achieve Inc. 2013). The fifth…

  1. The potential therapeutic value for bereaved relatives participating in research: An exploratory study.

    Science.gov (United States)

    Germain, Alison; Mayland, Catriona R; Jack, Barbara A

    2016-10-01

    Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable. This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data. The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits. The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.

  2. Implementation of Motivational Interviewing in Substance Use Disorder Treatment: Research Network Participation and Organizational Compatibility.

    Science.gov (United States)

    Rieckmann, Traci R; Abraham, Amanda J; Bride, Brian E

    Despite considerable empirical evidence that psychosocial interventions improve addiction treatment outcomes across populations, implementation remains problematic. A small body of research points to the importance of research network participation as a facilitator of implementation; however, studies examined limited numbers of evidence-based practices. To address this gap, the present study examined factors impacting implementation of motivational interviewing (MI). This study used data from a national sample of privately funded treatment programs (n = 345) and programs participating in the National Drug Abuse Treatment Clinical Trials Network (CTN) (n = 156). Data were collected via face-to-face interviews with program administrators and clinical directors (2007-2009). Analysis included bivariate t tests and chi-square tests to compare private and CTN programs, and multivariable logistic regression of MI implementation. A majority (68.0%) of treatment programs reported use of MI. Treatment programs participating in the CTN (88.9%) were significantly more likely to report use of MI compared with non-CTN programs (58.5%; P Motivational Interviewing Network of Trainers as compared with private programs (56.1%; P tool were more likely to use MI, whereas programs placing greater emphasis on confrontational group therapy were less likely to use MI. Findings suggest the critical role of research network participation, access to psychiatrists, and organizational compatibility in adoption and sustained use of MI.

  3. Lessons from Zhu Xi’s Views on Inquiry and Learning for Contemporary Advanced Humanities Education and Research

    Directory of Open Access Journals (Sweden)

    Kirill Ole THOMPSON

    2017-06-01

    Full Text Available We are bearing witness to the rapid rise of a brave new world of education as flashy websites and interactive software replace individual study and classroom lectures. The expansion of college lecture halls has been stretched thin with video lessons and distance learning, and the siren call of massive open online courses (MOOCs by star Ivy League professors renders the traditional classroom barren in the eyes of savvy students who have the system pegged. Several questions arise in this context. Can the students of today receive a college education in the full sense? Does learning still have the same quality without close interactions with teachers and classmates in small to medium sized classrooms? Does research hold the same significance today when much of the work is done and so much information supplied by computers? What lessons do Zhu Xi’s teachings on inquiry and learning have for this educational world of e-texts and cyber-lessons? While not a Luddite tract, the present study raises questions and concerns about the goals and conduct of higher education today which, as Heisenberg avers, should not only aim at transmitting knowledge understood in set ways, but also at inculcating new ways of thinking and understanding. A college education, as Zhu Xi holds for “advanced learning”, is as much about cultivating a thoughtful, responsible person as producing a professional expert. Such education should include cultivating a student’s sensitivity, logic, and judgment, as well as knowledge about humanity, society, and the world. It is often forgotten that such sensitivity, logic, knowledge, and commitment not only make the student more thoughtful and responsible, in short more self-conscious, but also give her additional perspectives and enhance her professional expertise.

  4. Academic research as human activity: Occupational Therapy contributions for consumer participation

    Directory of Open Access Journals (Sweden)

    Tatiana Dimov

    2016-07-01

    Full Text Available The involvement of consumers in research is a recent trend in the world. Involving consumers in researches on health services, therapeutic approaches, effectiveness of support groups, mutual help groups, and even on medication is crucial for obtaining academic results that are representative of the group of consumers, and influence public policies that are effective and functional for consumers. This paper presents an analysis of how consumers can get involved in a research and what can be the role of an occupational therapist in such activity. When governed by the principles of autonomy, empowerment, and recovery, researches with consumer participation promote the principles of equality and recognition, allowing inclusion in the research process, and promoting the recognition of consumer knowledge. As an activity, research can be a motivator, mobilizing wills and desires. It can also be a possibility of leaving stagnation and making decisions. The occupational therapist can help this process. Occupational therapy focus on activities that are significant to the life of individuals. Participation in research becomes a focus for the therapeutic process to the extent that it presents itself as a demand for the client.

  5. Lessons of Researcher-Teacher Co-design of an Environmental Health Afterschool Club Curriculum

    Science.gov (United States)

    Hundal, Savreen; Levin, Daniel M.; Keselman, Alla

    2014-06-01

    This paper addresses the impact of teachers' beliefs about argumentation and their community of practice framed views of teaching on co-designing an environmental health afterschool club curriculum with researchers. Our team collaborated with a group of four middle school teachers, asking them to co-design a club that would facilitate (1) students' understanding of environmental health, (2) use of electronic resources, and (3) argumentation skills. The process included researcher-led sessions emphasizing the importance of argumentation to science and teacher-led curriculum design sessions. The qualitative analysis of the meetings and teacher interview transcripts suggests that while teachers viewed argumentation as important, its practice was relegated to the background by the focus on student engagement and perceived logistical and systemic constraints. The paper concludes that in addition to stressing relevance of argumentation to science learning, researchers involved in co-design need to emphasize the potential of argumentation to engage students and to fit into science curriculum. The analysis also reveals teacher-participants' views of environmental health as an important area of middle school education, relevant to students' lives, linkable to the existing curriculum, essential for informed citizenship, and capable of inspiring interest in science. These findings underscore the importance of integrating environmental health into science education and advocating for its inclusion in informal and formal educational settings.

  6. 25 Years of DECOVALEX - Research Advances and Lessons Learned from an International Model Comparison Initiative

    Science.gov (United States)

    Birkholzer, J. T.

    2017-12-01

    This presentation provides an overview of an international research and model comparison collaboration (DECOVALEX) for advancing the understanding and modeling of coupled thermo-hydro-mechanical-chemical (THMC) processes in geological systems. Prediction of these coupled effects is an essential part of the performance and safety assessment of geologic disposal systems for radioactive waste and spent nuclear fuel, and is also relevant for a range of other sub-surface engineering activities. DECOVALEX research activities have been supported by a large number of radioactive-waste-management organizations and regulatory authorities. Research teams from more than a dozen international partner organizations have participated in the comparative modeling evaluation of complex field and laboratory experiments in the UK, Switzerland, Japan, France and Sweden. Together, these tasks (1) have addressed a wide range of relevant issues related to engineered and natural system behavior in argillaceous, crystalline and other host rocks, (2) have yielded in-depth knowledge of coupled THM and THMC processes associated with nuclear waste repositories and wider geo-engineering applications, and (3) have advanced the capability, as well as demonstrated the suitability, of numerical simulation models for quantitative analysis.

  7. Research participants' skills development as HIV prevention peer educators in their communities.

    Science.gov (United States)

    Morar, Neetha Shagan; Naidoo, Sarita; Goolam, Ahmed; Ramjee, Gita

    2016-06-01

    This article describes the influence of a peer education programme on skills development among 22 women participating in HIV prevention trials. Interviews were used to collect data on peer educator experiences and their opinions of the trainings. The training enhanced their agency and confidence to engage their family and community on health promotion, including HIV prevention research procedures, thus improving their self-esteem and communication skills. Training and partnering with clinical trial participants as peer educators is an effective and sustainable community-based approach for HIV prevention.

  8. Research study on public relations and public participation in the nuclear energy field

    International Nuclear Information System (INIS)

    Gunji, Ikuko; Tabata, Rimiko; Otoshi, Sachio; Kuwagaki, Reiko; Ishibashi, Yoichiro

    2006-01-01

    The purpose of this research is to clarify the effect of public relations activities in the nuclear energy field and public participation toward the improvement of the risk literacy of nuclear energy. According to the survey results of the actual public relations activities taken by nuclear energy industry, the opportunity for interactive communications between the public and the industry is insufficient. Consequently, we propose building up more opportunities for participation and collaboration of citizens and industries in order to improve interactive communications reflecting public opinions and points of view. (author)

  9. The use of technology enhanced learning in health research capacity development: lessons from a cross country research partnership.

    Science.gov (United States)

    Byrne, E; Donaldson, L; Manda-Taylor, L; Brugha, R; Matthews, A; MacDonald, S; Mwapasa, V; Petersen, M; Walsh, A

    2016-05-10

    With the recognition of the need for research capacity strengthening for advancing health and development, this research capacity article explores the use of technology enhanced learning in the delivery of a collaborative postgraduate blended Master's degree in Malawi. Two research questions are addressed: (i) Can technology enhanced learning be used to develop health research capacity?, and: (ii) How can learning content be designed that is transferrable across different contexts? An explanatory sequential mixed methods design was adopted for the evaluation of technology enhanced learning in the Masters programme. A number of online surveys were administered, student participation in online activities monitored and an independent evaluation of the programme conducted. Remote collaboration and engagement are paramount in the design of a blended learning programme and support was needed for selecting the most appropriate technical tools. Internet access proved problematic despite developing the content around low bandwidth availability and training was required for students and teachers/trainers on the tools used. Varying degrees of engagement with the tools used was recorded, and the support of a learning technologist was needed to navigate through challenges faced. Capacity can be built in health research through blended learning programmes. In relation to transferability, the support required institutionally for technology enhanced learning needs to be conceptualised differently from support for face-to-face teaching. Additionally, differences in pedagogical approaches and styles between institutions, as well as existing social norms and values around communication, need to be embedded in the content development if the material is to be used beyond the pilot resource-intensive phase of a project.

  10. Lessons Learned from Sandia National Laboratories' Operational Readiness Review of the Annular Core Research Reactor (ACRR)

    International Nuclear Information System (INIS)

    Bendure, Albert O.; Bryson, James W.

    1999-01-01

    The Sandia ACRR (a Hazard Category 2 Nuclear Reactor Facility) was defueled in June 1997 to modify the reactor core and control system to produce medical radioisotopes for the Department of Energy (DOE) Isotope Production Program. The DOE determined that an Operational Readiness Review (ORR) was required to confirm readiness to begin operations within the revised safety basis. This paper addresses the ORR Process, lessons learned from the Sandia and DOE ORRS of the ACRR, and the use of the ORR to confirm authorization basis implementation

  11. Participation in the IAEA Coordinated Research Project Fumex III: Final Report of AREVA NP

    International Nuclear Information System (INIS)

    2013-01-01

    After the Coordinated Research Project (CRP) FUMEXII, participants asked for a new exercise within an IAEA CRP. This CRP started in December 2008 in Vienna with the first Research Coordination Meeting (RCM). The CRP is titled ''Improvement of Computer Codes Used for Fuel Behaviour Simulation FUMEX III''. The object of FUMEX III were the improvement of fuel rod performance codes for modeling high burnup phenomena in modern fuel. This includes transient behavior, as well as mechanical interaction between pellet and cladding and, in progression to the FUMEX II exercise, fission gas release during various conditions (steady state, load follow, transient). AREVA NP agreed on participating in this exercise under the IAEA research agreement no. 15369 and expressed interest in the modeling of pelletclad mechanical interactions as well as fission gas release under steady state and transient conditions. In this exercise AREVA NP used its new global fuel rod code GALILEO, which is still under development (formerly known under the project name COPERNIC 3). During a Consultants Meeting potential topics and a proposed selection of cases have been prepared, which were discussed during the 1st Research Coordination Meeting (RCM) in Vienna in December 2008. During the discussions a number of additional cases motivated by the participants have been identified. Finally, a case table has been agreed upon, which included several cases for the different topics. Most of the cases have been based on the International Fuel Performance Experiments (IFPE) database, but additional cases have been provided during the exercise (e.g., the AREVA idealized case

  12. 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.

  13. Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation.

    Science.gov (United States)

    Northway, Ruth; Howarth, Joyce; Evans, Lynne

    2015-02-01

    The aim of this paper is to explore how making reasonable adjustments to the process of securing ethical approval for research can facilitate the meaningful involvement of people with intellectual disabilities as members of a research team. This is achieved through critical reflection upon the approach taken within one participatory research study whose objective was to explore how people with intellectual disabilities understand abuse. Internationally participatory research studies (in which active involvement of community members in all stages of the research process is sought) are becoming increasingly common in the context of health care and, more specifically, within research involving people with intellectual disabilities. However, whilst it is acknowledged that participatory research gives rise to specific ethical challenges, how (or if) involvement in securing ethical approval is facilitated, is not discussed in most research reports. The significance of this paper is that it seeks to address this gap by exploring how meaningful participation can be promoted by making reasonable adjustments. Within the study, the research team worked in collaboration with the ethics committee to identify potential barriers that could prevent the participation of members of the research team who had intellectual disabilities. Reasonable adjustments (such as redesigning forms) were made to the processes involved in securing ethical approval. This study demonstrated that it is possible to ensure that ethical standards are upheld and the requirements of ethics committees met whilst also facilitating the meaningful involvement of people with intellectual disabilities. The reasonable adjustments approach explored within this paper can be translated into the context of clinical practice: making changes to the way that services are delivered can promote greater involvement of people with intellectual disabilities in their own health care. © 2014 John Wiley & Sons Ltd.

  14. Lung Cancer Screening Participation: Developing a Conceptual Model to Guide Research.

    Science.gov (United States)

    Carter-Harris, Lisa; Davis, Lorie L; Rawl, Susan M

    2016-11-01

    To describe the development of a conceptual model to guide research focused on lung cancer screening participation from the perspective of the individual in the decision-making process. Based on a comprehensive review of empirical and theoretical literature, a conceptual model was developed linking key psychological variables (stigma, medical mistrust, fatalism, worry, and fear) to the health belief model and precaution adoption process model. Proposed model concepts have been examined in prior research of either lung or other cancer screening behavior. To date, a few studies have explored a limited number of variables that influence screening behavior in lung cancer specifically. Therefore, relationships among concepts in the model have been proposed and future research directions presented. This proposed model is an initial step to support theoretically based research. As lung cancer screening becomes more widely implemented, it is critical to theoretically guide research to understand variables that may be associated with lung cancer screening participation. Findings from future research guided by the proposed conceptual model can be used to refine the model and inform tailored intervention development.

  15. 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.

  16. Anticipating students' reasoning and planning prompts in structured problem-solving lessons

    Science.gov (United States)

    Vale, Colleen; Widjaja, Wanty; Doig, Brian; Groves, Susie

    2018-02-01

    Structured problem-solving lessons are used to explore mathematical concepts such as pattern and relationships in early algebra, and regularly used in Japanese Lesson Study research lessons. However, enactment of structured problem-solving lessons which involves detailed planning, anticipation of student solutions and orchestration of whole-class discussion of solutions is an ongoing challenge for many teachers. Moreover, primary teachers have limited experience in teaching early algebra or mathematical reasoning actions such as generalising. In this study, the critical factors of enacting the structured problem-solving lessons used in Japanese Lesson Study to elicit and develop primary students' capacity to generalise are explored. Teachers from three primary schools participated in two Japanese Lesson Study teams for this study. The lesson plans and video recordings of teaching and post-lesson discussion of the two research lessons along with students' responses and learning are compared to identify critical factors. The anticipation of students' reasoning together with preparation of supporting and challenging prompts was critical for scaffolding students' capacity to grasp and communicate generality.

  17. Truth in Advertising: Disclosure of Participant Payment in Research Recruitment Materials.

    Science.gov (United States)

    Gelinas, Luke; Lynch, Holly Fernandez; Largent, Emily A; Shachar, Carmel; Cohen, I Glenn; Bierer, Barbara E

    2018-05-01

    The practice of paying research participants has received significant attention in the bioethics literature, but the focus has been almost exclusively on consideration of factors relevant to determining acceptable payment amounts. Surprisingly little attention has been paid to what happens once the payment amount is set. What are the ethical parameters around how offers of payment may be advertised to prospective participants? This article seeks to answer this question, focusing on the ethical and practical issues associated with disclosing information about payment, and payment amounts in particular, in recruitment materials. We argue that it is permissible-and indeed typically ethically desirable-for recruitment materials to disclose the amount that participants will be paid. Further, we seek to clarify the regulatory guidance on "emphasizing" payment in a way that can facilitate design and review of recruitment materials.

  18. Are parents just treading water? The impact of participation in swim lessons on parents' judgments of children's drowning risk, swimming ability, and supervision needs.

    Science.gov (United States)

    Morrongiello, Barbara A; Sandomierski, Megan; Schwebel, David C; Hagel, Brent

    2013-01-01

    Drowning is a leading cause of child mortality globally. Strategies that have been suggested to reduce pediatric drowning risk include increased parental awareness of children's swimming ability and drowning risk, improved adult supervision of child swimmers, and providing swim lessons to children. This study explored how parents' beliefs relevant to children's drowning risk, perception of children's swimming ability, and judgments of supervision needs changed as children aged two through 5 years accumulated experience in swim lessons, and compared a parent group who received regular, detailed feedback about their child's swim skills with one that did not. Parents completed questionnaire measures near the beginning and end of a series of 10 weekly swim lessons. Results revealed that parental accuracy in judging children's swimming abilities remained relatively poor even though it improved from the beginning to the end of the swim lessons. Supervision needs were underestimated and did not vary with program or change over the course of swim lessons. Children's ability to keep themselves from drowning was overestimated and did not change over lessons or vary with program; parents believed that children could save themselves from drowning by the age of 6.21 years. Parents who had experienced a close call for drowning showed greater awareness of children's drowning risk and endorsed more watchful and proximal supervision. Results suggest that expanding learn-to-swim programs to include a parent-focused component that provides detailed tracking of swim skills and delivers messaging targeting perceptions of children's drowning risk and supervision needs may serve to maximize the drowning protection afforded by these programs. Delivering messaging in the form of 'close-call' drowning stories may prove especially effective to impact parents' supervision practices in drowning risk situations. Copyright © 2012 Elsevier Ltd. All rights reserved.

  19. Lessons Learned from the Construction of Upgrades to the NASA Glenn Icing Research Tunnel and Re-activation Testing

    Science.gov (United States)

    Sheldon, David W.; Andracchio, Charles R.; Krivanek, Thomas M.; Spera, David A.; Austinson, Todd A.

    2001-01-01

    Major upgrades were made in 1999 to the 6- by 9-Foot (1.8- by 2.7-m) Icing Research Tunnel (IRT) at the NASA Glenn Research Center. These included replacement of the electronic controls for the variable-speed drive motor, replacement of the heat exchanger, complete replacement and enlargement of the leg of the tunnel containing the new heat-exchanger, the addition of flow-expanding and flow-contracting turning vanes upstream and downstream of the heat exchanger, respectively, and the addition of fan outlet guide vanes (OGV's). This paper presents an overview of the construction and reactivation testing phases of the project. Important lessons learned during the technical and contract management work are documented.

  20. Research participants want to feel they are better off than they were before research was introduced to them”: engaging cameroonian rural plantation populations in HIV research

    Directory of Open Access Journals (Sweden)

    Kiawi Emmanuel

    2012-06-01

    Full Text Available Abstract Background During a period of evolving international consensus on how to engage communities in research, facilitators and barriers to participation in HIV prevention research were explored in a rural plantation community in the coastal region of Cameroon. Methods A formative rapid assessment using structured observations, focus group discussions (FGD, and key informant interviews (KIIs was conducted with a purposive non-probabilistic sample of plantation workers and their household members. Eligibility criteria included living or working >1 year within the plantation community and age >18 years. Both rapid and in-depth techniques were used to complete thematic analysis. Results Sixty-five persons participated in the study (6 FGDs and 12 KIIs. Participants viewed malaria and gastrointestinal conditions as more common health concerns than HIV. They identified three factors as contributing to HIV risk: concurrent sexual relationships, sex work, and infrequent condom use. Interviewees perceived that the community would participate in HIV research if it is designed to: (1 improve community welfare, (2 provide comprehensive health services and treatment for illnesses, (3 protect the personal information of participants, especially those who test positive for HIV, (4 provide participant incentives, (5 incorporate community input, and (6 minimize disruptions to “everyday life”. Barriers to participation included: (1 fear of HIV testing, (2 mistrust of researchers given possible disrespect or intolerance of plantation community life and lack of concern for communication, (3 time commitment demands, (3 medical care and treatment that would be difficult or costly to access, and (4 life disruptions along with potential requirements for changes in behaviour (i.e., engage in or abstain from alcohol use and sex activities. Conclusions Consistent with UNAIDS guidelines for good participatory practice in HIV prevention research, study

  1. Research priorities in health communication and participation: international survey of consumers and other stakeholders.

    Science.gov (United States)

    Synnot, Anneliese; Bragge, Peter; Lowe, Dianne; Nunn, Jack S; O'Sullivan, Molly; Horvat, Lidia; Tong, Allison; Kay, Debra; Ghersi, Davina; McDonald, Steve; Poole, Naomi; Bourke, Noni; Lannin, Natasha; Vadasz, Danny; Oliver, Sandy; Carey, Karen; Hill, Sophie J

    2018-05-08

    To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in 'health communication and participation' (including such concepts as patient experience, shared decision-making and health literacy). International. We included anyone with an interest in health communication and participation. Up to 151 participants (18-80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both). Survey. We invited people to submit their research ideas via an online survey open for 4 weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes. Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), 'official' health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals. Consumers and other stakeholders want research addressing

  2. A booklet on participants' rights to improve consent for clinical research: a randomized trial.

    Directory of Open Access Journals (Sweden)

    Jocelyne R Benatar

    Full Text Available OBJECTIVE: Information on the rights of subjects in clinical trials has become increasingly complex and difficult to understand. This study evaluates whether a simple booklet which is relevant to all research studies improves the understanding of rights needed for subjects to provide informed consent. METHODS: 21 currently used informed consent forms (ICF from international clinical trials were separated into information related to the specific research study, and general information on participants' rights. A booklet designed to provide information on participants' rights which used simple language was developed to replace this information in current ICF's Readability of each component of ICF's and the booklet was then assessed using the Flesch-Kincaid Reading ease score (FK. To further evaluate the booklet 282 hospital inpatients were randomised to one of three ways to present research information; a standard ICF, the booklet combined with a short ICF, or the booklet combined with a simplified ICF. Comprehension of information related to the research proposal and to participant's rights was assessed by questionnaire. RESULTS: Information related to participants' rights contributed an average of 44% of the words in standard ICFs, and was harder to read than information describing the clinical trial (FK 25 versus (vs. 41 respectively, p = 0.0003. The booklet reduced the number of words and improved FK from 25 to 42. The simplified ICF had a slightly higher FK score than the standard ICF (50 vs. 42. Comprehension assessed in inpatients was better for the booklet and short ICF 62%, (95% confidence interval (CI 56 to 67 correct, or simplified ICF 62% (CI 58 to 68 correct compared to 52%, (CI 47 to 57 correct for the standard ICF, p = 0.009. This was due to better understanding of questions on rights (62% vs. 49% correct, p = 0.0008. Comprehension of study related information was similar for the simplified and standard ICF (60% vs. 64

  3. A booklet on participants' rights to improve consent for clinical research: a randomized trial.

    Science.gov (United States)

    Benatar, Jocelyne R; Mortimer, John; Stretton, Matthew; Stewart, Ralph A H

    2012-01-01

    Information on the rights of subjects in clinical trials has become increasingly complex and difficult to understand. This study evaluates whether a simple booklet which is relevant to all research studies improves the understanding of rights needed for subjects to provide informed consent. 21 currently used informed consent forms (ICF) from international clinical trials were separated into information related to the specific research study, and general information on participants' rights. A booklet designed to provide information on participants' rights which used simple language was developed to replace this information in current ICF's Readability of each component of ICF's and the booklet was then assessed using the Flesch-Kincaid Reading ease score (FK). To further evaluate the booklet 282 hospital inpatients were randomised to one of three ways to present research information; a standard ICF, the booklet combined with a short ICF, or the booklet combined with a simplified ICF. Comprehension of information related to the research proposal and to participant's rights was assessed by questionnaire. Information related to participants' rights contributed an average of 44% of the words in standard ICFs, and was harder to read than information describing the clinical trial (FK 25 versus (vs.) 41 respectively, p = 0.0003). The booklet reduced the number of words and improved FK from 25 to 42. The simplified ICF had a slightly higher FK score than the standard ICF (50 vs. 42). Comprehension assessed in inpatients was better for the booklet and short ICF 62%, (95% confidence interval (CI) 56 to 67) correct, or simplified ICF 62% (CI 58 to 68) correct compared to 52%, (CI 47 to 57) correct for the standard ICF, p = 0.009. This was due to better understanding of questions on rights (62% vs. 49% correct, p = 0.0008). Comprehension of study related information was similar for the simplified and standard ICF (60% vs. 64% correct, p = 0.68). A booklet

  4. The participation of IPEN in the IAEA coordinated research projects on accelerators driven systems (ADS)

    Energy Technology Data Exchange (ETDEWEB)

    Maiorino, J.R.; Santos, A.; Carluccio, T.; Rossi, P.C.R.; Antunes, A.; Oliveira, F. de; Lee, S.M. [Instituto de Pesquisas Energeticas e Nucleares (IPEN/CNEN-SP), Sao Paulo, SP (Brazil)]. E-mail: maiorino@ipen.br

    2007-07-01

    This paper describes the participation of the IPEN in the International Atomic Energy Agency (IAEA) Coordinated Research Projects(CRP) on Analytical and Experimental Benchmark Analysis on ADS and Low Enriched Uranium Fuel Utilization in ADS. The first CRP has as specific objective to improve the present understanding of the coupling of an external neutron source [e.g. a spallation source in the case of the accelerator driven system (ADS)] with a multiplicative sub-critical core, and the second CRP, or collaborative work, the utilization of LEU in existing or planned ADS facilities. IPEN participate in both CRP through a research contract (13388), and although there are several benchmarks defined in both CRP, presently IPEN is participating in the activities related with reactor physics benchmark of the Yalina Booster facility in Belarus, in the analytical and numerical benchmarking of methods and codes for ADS kinetics, and in the ADS target calculations. Besides, since there are plans to introduce a compact neutron generator in a sub critical core of the IPEN-MB-01 facility, a benchmark of a simulation of such project has been proposed in the LEU-ADS CRP. The paper will review the CRPs with details on the activities in which IPEN is participating. (author)

  5. The participation of IPEN in the IAEA coordinated research projects on accelerators driven systems (ADS)

    International Nuclear Information System (INIS)

    Maiorino, J.R.; Santos, A.; Carluccio, T.; Rossi, P.C.R.; Antunes, A.; Oliveira, F. de; Lee, S.M.

    2007-01-01

    This paper describes the participation of the IPEN in the International Atomic Energy Agency (IAEA) Coordinated Research Projects(CRP) on Analytical and Experimental Benchmark Analysis on ADS and Low Enriched Uranium Fuel Utilization in ADS. The first CRP has as specific objective to improve the present understanding of the coupling of an external neutron source [e.g. a spallation source in the case of the accelerator driven system (ADS)] with a multiplicative sub-critical core, and the second CRP, or collaborative work, the utilization of LEU in existing or planned ADS facilities. IPEN participate in both CRP through a research contract (13388), and although there are several benchmarks defined in both CRP, presently IPEN is participating in the activities related with reactor physics benchmark of the Yalina Booster facility in Belarus, in the analytical and numerical benchmarking of methods and codes for ADS kinetics, and in the ADS target calculations. Besides, since there are plans to introduce a compact neutron generator in a sub critical core of the IPEN-MB-01 facility, a benchmark of a simulation of such project has been proposed in the LEU-ADS CRP. The paper will review the CRPs with details on the activities in which IPEN is participating. (author)

  6. Online Facebook Focus Group Research of Hard-to-Reach Participants

    Directory of Open Access Journals (Sweden)

    Anastasia Aldelina Lijadi

    2015-12-01

    Full Text Available Conducting discovery-oriented qualitative research about the life experiences of hard-to-reach individuals posed several challenges for recruiting participants and collecting rich textual data. In a study pertaining the experiences of Third Culture Kids (TCKs, we explored the benefits of the social media, such as Facebook as a platform to collect data. TCKs are individuals who define their sense of belonging to the third culture trailing their parents moving across borders during their developmental years. Adult TCKs live in many different countries, and accessing and interviewing respondents could be a difficult and costly endeavor. In this article, the authors share their experience conducting online, asynchronous focus groups using a Facebook platform. We reflect upon the process of setting up a secret Facebook focus group for research purposes, recruiting participants, rapport building between facilitator and participants, monitoring and keeping track of participants’ responses, and the dynamics emerging within an online focus group. We also discuss the novelty, limitations, and benefits of the Facebook focus group as an emerging mode for collecting qualitative data from hard-to-reach participants.

  7. Perceptions of parents on the participation of their infants in clinical research

    DEFF Research Database (Denmark)

    Gammelgaard, A; Knudsen, Lisbeth E.; Bisgaard, H

    2006-01-01

    OBJECTIVE: To analyse the motivations and perceptions of parents on the participation of their infants and young children in a comprehensive and invasive clinical research study. METHODS: Semistructured qualitative interviews were conducted with 23 mothers with asthma whose infants and young...... children were participating in the Copenhagen Prospective Study on Asthma in Childhood. The interviews were audiotaped, transcribed and analysed using the template analysis method. RESULTS: Parents were motivated by altruism and by the opportunity to get their child checked regularly by medical experts...... to prevent the possible development of asthma. Parents found it very important that their children enjoyed their visits to the research clinic, and that they could withdraw from the study if their child started responding negatively to those visits. No apparent difference was seen in the attitude between...

  8. Implementation of IAEA coordinated research program and study on strategy for effective participation in the program

    International Nuclear Information System (INIS)

    Choi, P. H.; Kim, G. P.; Kim, M. R.; Sim, J. S.

    2002-05-01

    One of the important aims of this project is the expansion of participation in the CRP with the support of research funds. In order to achieve this aim, the information on the support of research funds was announced, and 31 projects were proposed by May 2001. As a result of evaluation of the projects, 60,100,000 won were funded for these 31 projects. The IAEA announces the next year projects to Member States and invites public participation of new projects in around November every year. However, it was announced at the end of December 2001, and the guide for project proposal was published. In addition to that, there was a briefing for the understanding of the CRP and the guide for project proposals on 19 February 2002

  9. Using the ICF in transition research and practice? Lessons from a scoping review.

    Science.gov (United States)

    Nguyen, Tram; Stewart, Debra; Rosenbaum, Peter; Baptiste, Sue; Kraus de Camargo, Olaf; Gorter, Jan Willem

    2018-01-01

    The International Classification of Functioning, Disability and Health (ICF) and subsequent ICF-CY (child and youth version) recognize the importance of personal and environmental factors in facilitating holistic transition planning and service delivery for youth with chronic health conditions (YCHC). The objective of this scoping review is to investigate the degree to which the ICF and ICF-CY have been used in transition research and practice since its initial publication. Arksey and O'Malley's five-stage methodological framework guided the scoping review using the following databases: AMED, CINAHL, EMBASE, HealthSTAR, MEDLINE, and PsycINFO. Keywords included: 'ICF', 'ICF-CY', and 'transition', which were adapted to each database. 25 articles met final inclusion. Two key themes emerged regarding use of the ICF: 1) the ICF enhances transdisciplinary processes to inform transition planning and interventions; and 2) the ICF facilitates comprehensive and developmentally appropriate transition services over a youth's lifecourse. The strengths and limitations of the ICF in guiding the planning and delivery of transition services are discussed. Some limitations include the large number of items inherent within the ICF and a lack of clarity between the components of activity and participation. Key recommendations include: i) further explanation and development of items for quality of life and well-being, personal factors, and psychological issues; and ii) additional research to advance knowledge towards developing empirically- based evidence for the application of the ICF in clinical practice to facilitate transition. Copyright © 2017 Elsevier Ltd. All rights reserved.

  10. Lessons from the evolution of 401(k) retirement plans for increased consumerism in health care: an application of behavioral research.

    Science.gov (United States)

    DiCenzo, Jodi; Fronstin, Paul

    2008-08-01

    Employment-based health and retirement benefit programs have followed a similar path of evolution. The relative decision-making roles of the employer and the worker have shifted from the employer to the worker, and workers are more responsible than perhaps they ever have been for their well being--both in terms of their health in general and their financial security during retirement. This shift has been supported, in part, by legislation--namely ERISA, the HMO Act of 1973, the Revenue Act of 1978, and most recently, the Pension Protection Act. This Issue Brief does not pass judgment on this development or address who should bear the responsibilities of preparing workers for retirement or of rationing health care services. The current trend in health care design is toward increased "consumerism." Consumer-driven health is based on the assumption that the combination of greater cost sharing (by workers) and better information about the cost and quality of health care will engage workers to become better health care decision makers. It is hoped that workers will seek important, necessary, high-quality, cost-effective care and services, and become less likely to engage providers and services that are unnecessary and ineffective from either a quality or cost perspective. As employers look ahead toward continually improved plan design, there may be benefits in considering the lessons learned from studying worker behaviors. Specifically, there is evidence about the effects of choice, financial incentives, and information on worker decision making. As a result of research in this area, many retirement plan sponsors have moved toward plan designs and programs that recognize the benefits of well-designed defaults, simplified choices, required active decision making, framing, and commitment to future improvements. With respect to choice, it is now known that more is not always better and may even be worse in some cases. Just as fewer shoppers actually bought a jar of jelly

  11. Schizophrenia research participants' responses to protocol safeguards: recruitment, consent, and debriefing.

    Science.gov (United States)

    Roberts, Laura Weiss; Warner, Teddy D; Anderson, Charles T; Smithpeter, Megan V; Rogers, Melinda K

    2004-04-01

    To examine the perspectives and preferences regarding ethically important aspects of recruitment, consent, and debriefing of people with schizophrenia who volunteered for research protocols. A structured interview to assess research-related views of people with schizophrenia was developed and piloted. Data collection occurred at three sites. For this analysis, we examined the subset of responses from schizophrenia patients currently enrolled in a protocol. Data from 28 schizophrenia research volunteers were analyzed. Of these, 22 were men and 11 were voluntary inpatients. Most (n=23) recalled speaking with someone before enrolling in the protocol, and most (n=26) reported trusting the person who told them about it. Participants reported a moderate understanding of their protocols. All but one person (n=27) remembered signing a consent form. Twenty-one volunteers indicated that consent forms are meant to help both the patient and the researcher. Most (n=23) reported making the enrollment decision alone, with 22 making this decision prior to reviewing the consent form. The decision was described as relatively easy. Respondents felt some pressure to enroll, with women experiencing more pressure. Debriefing practices were strongly endorsed by participants. All 28 of the volunteers wished to be informed if a health problem (i.e., "something wrong") was discovered during the protocol. The persons living with schizophrenia who were interviewed for this project expressed interesting perspectives and preferences regarding ethically important aspects of recruitment, consent, and debriefing in clinical research that may help guide efforts to make research processes more attuned to participants and merit further inquiry.

  12. Barriers and Motivators to Participating in mHealth Research Among African American Men.

    Science.gov (United States)

    James, Delores C S; Harville, Cedric

    2017-11-01

    Most African American (AA) men own a smartphone, which positions them to be targeted for a variety of programs, services, and health interventions using mobile devices (mHealth). The goal of this study was to assess AA men's use of technology and the barriers and motivators to participating in mHealth research. A self-administered survey was completed by 311 men. Multinomial logistic regression examined associations between three age groups (18-29 years, 30-50 years, and 51+ years), technology access, and motivators and barriers to participating in mHealth research. Sixty-five percent of men owned a smartphone and a laptop. Men aged 18 to 29 years were more likely willing to use a health app and smartwatch/wristband monitor than older men ( p motivated to participate for a free cell phone/upgraded data plan and contribution to the greater good ( p motivated to become more educated about the topic ( p < .05). Younger men were more likely than older ones to report lack of interest in the topic as a barrier to participating ( p < .01), while older men were more likely than younger ones to cite lack of research targeted to minority communities as a barrier ( p < .05). This study suggests that culturally tailored mHealth research using smartphones may be of interest to AA men interested in risk reduction and chronic disease self-management. Opportunities also exist to educate AA men about the topic at hand and why minority men are being targeted for the programs and interventions.

  13. The Use of Facebook in Recruiting Participants for Health Research Purposes: A Systematic Review

    OpenAIRE

    Whitaker, Christopher; Stevelink, Sharon; Fear, Nicola

    2017-01-01

    Background: Social media is a popular online tool that allows users to communicate and exchange information. It allows digitalcontent such as pictures, videos and websites to be shared, discussed, republished and endorsed by its users, their friends andbusinesses. Adverts can be posted and promoted to specific target audiences by demographics such as region, age or gender.Recruiting for health research is complex with strict requirement criteria imposed on the participants. Traditional resear...

  14. Crocodile years: the traditional image of science and physical scientists' participation in weapons research

    Energy Technology Data Exchange (ETDEWEB)

    Crews, R.J.

    1985-01-01

    This thesis examines one dimension of the relationship between science and the arms race. More specifically, it develops and empirically examines a theoretical model of the relationship between the social demand for defense-related and weapons research, traditional scientific values related to the worldview of classical physics, and differential participation by physical scientists in such research. The theoretical model suggests that an antiquated traditional image of science exists, and that it may explain, in part, participation by physical scientists in defense-related or weapons research. Two major hypotheses are suggested by the model: first, that a constellation of values representing a traditional image of science obtains today among young physical scientists; and second, that those who currently engage (or are willing to engage) in defense-related or weapons research are more likely to agree with the values implicit in the traditional image of science than those who do not (or would not) engage in such research. The theoretical model is located within the sociologies of knowledge and science. This study includes chapters that provide an overview of the literature of these subdisciplines. This investigation concludes with an empirical examination of the model and hypotheses.

  15. [The use of interviews in participative intervention and research: the GAM tool as a collective interview].

    Science.gov (United States)

    Sade, Christian; de Barros, Leticia Maria Renault; Melo, Jorge José Maciel; Passos, Eduardo

    2013-10-01

    This paper seeks to assess a way of conducting interviews in line with the ideology of Brazilian Psychiatric Reform. In the methodology of participative intervention and research in mental health, the interview is less a data collection than a data harvesting procedure. It is designed to apply the principles of psychosocial care, autonomy as the basis for treatment, the predominance of the users and of their social networks and civic participation. Inspired by the Explicitation Interview technique, the contention is that the handling of the interview presupposes an open attitude able to promote and embrace different viewpoints. This attitude makes the interview a collective experience of sharing and belonging, allowing participants to reposition themselves subjectively in treatment with the emergence of groupality. As an example of using the interview as a methodological tool in mental health research, we examine research into adaptation of the tool of Autonomous Medication Management (GAM). It is an interventionist approach guided by principles that foster autonomy and the protagonist status of users of psychotropic medication, their quality of life, their rights and recognition of the multiple significances of medication, understood here as a collective interview technique.

  16. Occupational therapy practice community: process evaluation by the participants and researchers

    Directory of Open Access Journals (Sweden)

    Sandra Maria Galheigo

    2015-09-01

    Full Text Available This article presents the results of a participatory action research with occupational therapists in a community of practice which purpose was to discuss the care production provided by occupational therapy to hospitalized children and adolescents. The participants were nine occupational therapists from hospitals of the city of São Paulo. Ten face-to-face meetings were conducted and a Web-mediated environment was created for conducting virtual activities. The face meetings were recorded and tapped. This article aims to present the evaluation made by the participants and researchers about the process experienced in the community. Through content analysis, seventeen reporting units were identified and grouped into four main themes: the dialogic process; theoretical and practical implications; reflective process; participatory process and its barriers. The process evaluation showed that dialogue during the meetings contributed to a sense of belonging, integration, and awareness/group cohesion and made possible discussing and reflecting on topics relevant to the practice of occupational therapist. Direct communication proved to be the main form of exchange among the professionals in the group. The participants working conditions, the computers and virtual environments access issues, the surplus work generated by meetings and the displacement in urban centers were complicating factors for the participant’s greater adhesion. Evaluation showed that this strategy favored the construction of shared knowledge, and its implementation can foster reflection, research development and knowledge production, as well as contribute to the occupational therapist professional practice improvement.

  17. Susceptibility of elderly Asian immigrants to persuasion with respect to participation in research.

    Science.gov (United States)

    Brugge, Doug; Kole, Alison; Lu, Weibo; Must, Aviva

    2005-04-01

    Familism, respect for authority, and a sense of shame/pride are cultural characteristics that might influence research participation of Asian Americans. We compared 79 elderly Asian immigrants, most of whom immigrated from China or Hong Kong, with 58 elders who were not Asian and mostly not immigrants. Responding to hypothetical situations presented on a self-administered questionnaire, the Asian group professed to be more likely to be influenced by a request from a son/daughter, landlord, physician, or advertisement (p<0.001) and by a monetary incentive (p=0.05). Multivariate adjustment for potential confounders attenuated the strength of these relations, but except in the case of the monetary offer, differences remained statistically significant. Within the Asian group, multivariate logistic regression modeling indicated that years lived in the US was associated with more likelihood of refusing requests to participate in research. We conclude that acculturation or assimilation into American society may build resistance to pressure to participate in research. Our findings also suggest that elderly Asian immigrants may need additional protections to achieve truly informed consent.