WorldWideScience

Sample records for human research participants

  1. 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

  2. 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.

  3. 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…

  4. Impact of Open Data Policies on Consent to Participate in Human Subjects Research: Discrepancies between Participant Action and Reported Concerns.

    Science.gov (United States)

    Cummings, Jorden A; Zagrodney, Jessica M; Day, T Eugene

    2015-01-01

    Research outlets are increasingly adopting open data policies as a requisite for publication, including studies with human subjects data. We investigated whether open data policies influence participants' rate of consent by randomly assigning participants to view consent forms with and without discussion of open data policies. No participants declined to participate, regardless of condition, nor did rates of drop-out vs. completion vary between conditions. Furthermore, no significant change in potential consent rates was reported when participants were openly asked about the influence of open data policies on their likelihood of consent. However, follow-up analyses indicated possible poor attention to consent forms, consistent with previous research. Moreover, thematic analysis of participants' considerations of open data policy indicated multiple considerations such as concerns regarding confidentiality, anonymity, data security, and study sensitivity. The impact of open data policies on participation raises complex issues at the intersection of ethics and scientific innovation. We conclude by encouraging researchers to consider participants as stakeholders in open data policy and by providing recommendations for open data policies in human subjects research.

  5. 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.

  6. [Discussion paper participation research].

    Science.gov (United States)

    Farin, Erik

    2012-12-01

    This contribution introduces the "Diskussionspapier Teilhabeforschung" (discussion paper participation research) of the German Association for Rehabilitation (DVfR) and German Society for Rehabilitation Science (DGRW). The aim of this paper is to more clearly define current scientific research activity on the subject of participation and the significance of interdisciplinary participation research. The authors emphasise the desirability of a stronger scientific basis for instruments designed to improve the participation of disabled individuals. The paper is meant to be understood as an initial basis for the discussion about participation research development, and the authors are open to suggestions and elaboration.Participation research is understood in this discussion paper as an interdisciplinary research field with 7 goals and characteristics: 1. focussing on participation and self-determination; 2. contextual approach (taking environmental and personal factors into consideration that affect participation); 3. the participation of disabled persons in participation research; 4. interdisciplinary cooperation; 5. involving organisations and institutions whose approaches to participation research overlap; 6. referring to social and healthcare policies; 7. national and international orientations.The authors discuss the rationale behind increasing the support for participation research and theoretical models thereof. Fundamental concepts with high relevance to participation research include the biopsychosocial model of the International Classification of Functionality, Disability and Health (ICF), the inclusion concept, empowerment concept, and capabilities concept. The authors conclude their paper with recommendations for strengthening the research funding for participation research, and specify concrete steps toward greater participation research. © Georg Thieme Verlag KG Stuttgart · New York.

  7. 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...

  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...... articles are identified, analysed and classified within the categories of eParticipation actors, activities, contextual factors, effects, and evaluation. Findings show that the field has a high level of dynamism, as focuses on eParticipation activities, contextual factors and effects have shifted in time...

  9. 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

    completing EMA surveys was high, with 88.3% (66,978/75,888) completion of random assessments and around 90% (23,411/25,929 and 23,343/26,010) completion of time-contingent assessments, despite the duration of EMA data collection and challenges with implementation. This work informed us of the necessary preliminary steps to plan and prepare a longitudinal study using smartphone technology and the critical elements to ensure participant engagement in the potentially burdensome protocol, which spanned 12 months. While this was a technology-supported and -programmed study, it required close oversight to ensure all elements were functioning correctly, particularly once human participants became involved.

  10. Considerations for the use of human participants in vector biology research: a tool for investigators and regulators.

    Science.gov (United States)

    Achee, Nicole L; Youngblood, Laura; Bangs, Michael J; Lavery, James V; James, Stephanie

    2015-02-01

    A thorough search of the existing literature has revealed that there are currently no published recommendations or guidelines for the interpretation of US regulations on the use of human participants in vector biology research (VBR). An informal survey of vector biologists has indicated that issues related to human participation in vector research have been largely debated by academic, national, and local Institutional Review Boards (IRBs) in the countries where the research is being conducted, and that interpretations and subsequent requirements made by these IRBs have varied widely. This document is intended to provide investigators and corresponding scientific and ethical review committee members an introduction to VBR methods involving human participation and the legal and ethical framework in which such studies are conducted with a focus on US Federal Regulations. It is also intended to provide a common perspective for guiding researchers, IRB members, and other interested parties (i.e., public health officials conducting routine entomological surveillance) in the interpretation of human subjects regulations pertaining to VBR.

  11. Exposures recorded for participants in the UK Chemical Warfare Agent Human Research Programme, 1941-1989.

    Science.gov (United States)

    Keegan, T J; Walker, S A S; Brooks, C; Langdon, T; Linsell, L; Maconochie, N E S; Doyle, P; Fletcher, T; Nieuwenhuijsen, M J; Carpenter, L M; Venables, K M

    2009-01-01

    This study describes exposures to military veterans who participated between 1941 and 1989 in British research at Porton Down on the effects of exposure to chemical warfare agents and to defences against those agents. The study is part of a programme of epidemiological research initiated in response to service veterans' concerns about possible long-term health effects of their participation. All entries in 97 books held in the Porton Down historical experimental archive covering the years 1939-1989 were reviewed. For tests between April 1941 and December 1989, data were abstracted on chemicals used, with additional detail abstracted for tests involving vesicants and nerve agents. For tests recorded during 1939-1941, similar data were abstracted for a representative sample of tests. Historical data were abstracted for 17 303 veterans included in the cohort study of 18,276 servicemen who took part in tests at Porton Down between 1941 and 1989. The median number of days per veteran on which tests were carried out was 2 days. The median difference between the last and first day of testing was 4 days. A large number of chemicals were tested over this period (n = 492). The type of chemical tested varied over time. Exposures were often modified by respirator use or use of protective clothing or protective equipment. It was possible to assign a quantitative measure of cumulative exposure to 73% of veterans exposed to the vesicant sulphur mustard--3491 (34%) of exposed veterans had cumulative exposures > or =10.63 mg and for 70% of veterans exposed to the nerve agent sarin--658 (29%) of exposed veterans had cumulative exposures > or =15.0 mg min m(-3). Ninety-three per cent of veterans exposed to sulphur mustard were classified to a semi-quantitative scale of dermal effect--3771 (37%) had a vesicle or necrosed area, and 69% of veterans exposed to sarin could be categorized by change in blood cholinesterase activity--1033 (31%) had a depression in cholinesterase activity of

  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. The participating researcher

    DEFF Research Database (Denmark)

    Hansen, Louise Ejgod

    2014-01-01

    producers of artistic works in new corporations with professional artists. Art on the Fringe is a series of local festivals aiming at producing new artistic encounters by combining the means and knowledge of professional theatre artists with the contribution of citizens and their existing talents...... new ways of participatory research, and hopefully the conference will give input to that development as well....

  14. The influence of race and ethnicity on becoming a human subject: Factors associated with participation in research

    Directory of Open Access Journals (Sweden)

    Mary A. Garza, PhD

    2017-09-01

    Conclusions: Results suggest that African Americans and Latinos have no automatic predisposition to decline participation in research studies. These results can inform culturally tailored interventions for ethical recruitment of minorities into research and clinical trials.

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

    Science.gov (United States)

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

    2018-01-01

    Article retraction is a measure taken by journals or authors where there is evidence of research misconduct or error, redundancy, plagiarism or unethical research. Recently, the retraction of scientific publications has been on the rise. In this survey, we aimed to describe the characteristics and distribution of retracted articles and the reasons for retractions. We searched retracted articles on the PubMed database and Retraction Watch website from 1980 to February 2016. The primary outcomes were the characteristics and distribution of retracted articles and the reasons for retractions. The secondary outcomes included how article retractions were handled by journals and how to improve the journal practices toward article retractions. We included 1,339 retracted articles. Most retracted articles had six authors or fewer. Article retraction was most common in the USA (26%), Japan (11%) and Germany (10%). The main reasons for article retraction were misconduct (51%, n = 685) and error (14%, n = 193). There were 66% (n = 889) of retracted articles having male senior or corresponding authors. Of the articles retracted after August 2010, 63% (n = 567) retractions were reported on Retraction Watch. Large discrepancies were observed in the ways that different journals handled article retractions. For instance, articles were completely withdrawn from some journals, while in others, articles were still available with no indication of retraction. Likewise, some retraction notices included a detailed account of the events that led to article retraction, while others only consisted of a statement indicating the article retraction. The characteristics, geographic distribution and reasons for retraction of published articles involving human research participants were examined in this survey. More efforts are needed to improve the consistency and transparency of journal practices toward article retractions.

  16. 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...... 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...... 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...

  17. Computational challenges and human factors influencing the design and use of clinical research participant eligibility pre-screening tools

    Directory of Open Access Journals (Sweden)

    Pressler Taylor R

    2012-05-01

    Full Text Available Abstract Background Clinical trials are the primary mechanism for advancing clinical care and evidenced-based practice, yet challenges with the recruitment of participants for such trials are widely recognized as a major barrier to these types of studies. Data warehouses (DW store large amounts of heterogenous clinical data that can be used to enhance recruitment practices, but multiple challenges exist when using a data warehouse for such activities, due to the manner of collection, management, integration, analysis, and dissemination of the data. A critical step in leveraging the DW for recruitment purposes is being able to match trial eligibility criteria to discrete and semi-structured data types in the data warehouse, though trial eligibility criteria tend to be written without concern for their computability. We present the multi-modal evaluation of a web-based tool that can be used for pre-screening patients for clinical trial eligibility and assess the ability of this tool to be practically used for clinical research pre-screening and recruitment. Methods The study used a validation study, usability testing, and a heuristic evaluation to evaluate and characterize the operational characteristics of the software as well as human factors affecting its use. Results Clinical trials from the Division of Cardiology and the Department of Family Medicine were used for this multi-modal evaluation, which included a validation study, usability study, and a heuristic evaluation. From the results of the validation study, the software demonstrated a positive predictive value (PPV of 54.12% and 0.7%, respectively, and a negative predictive value (NPV of 73.3% and 87.5%, respectively, for two types of clinical trials. Heuristic principles concerning error prevention and documentation were characterized as the major usability issues during the heuristic evaluation. Conclusions This software is intended to provide an initial list of eligible patients to a

  18. Computational challenges and human factors influencing the design and use of clinical research participant eligibility pre-screening tools

    Science.gov (United States)

    2012-01-01

    Background Clinical trials are the primary mechanism for advancing clinical care and evidenced-based practice, yet challenges with the recruitment of participants for such trials are widely recognized as a major barrier to these types of studies. Data warehouses (DW) store large amounts of heterogenous clinical data that can be used to enhance recruitment practices, but multiple challenges exist when using a data warehouse for such activities, due to the manner of collection, management, integration, analysis, and dissemination of the data. A critical step in leveraging the DW for recruitment purposes is being able to match trial eligibility criteria to discrete and semi-structured data types in the data warehouse, though trial eligibility criteria tend to be written without concern for their computability. We present the multi-modal evaluation of a web-based tool that can be used for pre-screening patients for clinical trial eligibility and assess the ability of this tool to be practically used for clinical research pre-screening and recruitment. Methods The study used a validation study, usability testing, and a heuristic evaluation to evaluate and characterize the operational characteristics of the software as well as human factors affecting its use. Results Clinical trials from the Division of Cardiology and the Department of Family Medicine were used for this multi-modal evaluation, which included a validation study, usability study, and a heuristic evaluation. From the results of the validation study, the software demonstrated a positive predictive value (PPV) of 54.12% and 0.7%, respectively, and a negative predictive value (NPV) of 73.3% and 87.5%, respectively, for two types of clinical trials. Heuristic principles concerning error prevention and documentation were characterized as the major usability issues during the heuristic evaluation. Conclusions This software is intended to provide an initial list of eligible patients to a clinical study

  19. Mortality in British military participants in human experimental research into chemical warfare agents at Porton Down: cohort study.

    Science.gov (United States)

    Venables, K M; Brooks, C; Linsell, L; Keegan, T J; Langdon, T; Fletcher, T; Nieuwenhuijsen, M J; Maconochie, N E S; Doyle, P; Beral, V; Carpenter, L M

    2009-03-24

    To investigate any long term effects on mortality in participants in experimental research related to chemical warfare agents from 1941 to 1989. Historical cohort study. Data sources Archive of UK government research facility at Porton Down, UK military personnel records, and national death and cancer records. Participants 18,276 male members of the UK armed forces who had spent one or more short periods (median 4 days between first and last test) at Porton Down and a comparison group of 17,600 non-Porton Down veterans followed to 31 December 2004. Mortality rate ratio of Porton Down compared with non-Porton Down veterans and standardised mortality ratio of each veteran group compared with the general population. Both ratios adjusted for age group and calendar period. Porton Down veterans were similar to non-Porton Down veterans in year of enlistment (median 1951) but had longer military service (median 6.2 v 5.0 years). After a median follow-up of 43 years, 40% (7306) of Porton Down and 39% (6900) of non-Porton Down veterans had died. All cause mortality was slightly greater in Porton Down veterans (rate ratio 1.06, 95% confidence interval 1.03 to 1.10, Pchemical exposure and cause specific mortality. The mortality in both groups of veterans was lower than that in the general population (standardised mortality ratio 0.88, 0.85 to 0.90; 0.82, 0.80 to 0.84). Mortality was slightly higher in Porton Down than non-Porton Down veterans. With lack of information on other important factors, such as smoking or service overseas, it is not possible to attribute the small excess mortality to chemical exposures at Porton Down.

  20. Vulnerable participants in health research

    DEFF Research Database (Denmark)

    Nordentoft, Helle Merete; Nanna, Kappel

    2011-01-01

    and leave both professionals and researchers in ethical and moral dilemmas. In the 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 you can illuminate the needs...

  1. 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…

  2. 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....

  3. Manipulation in the enrollment of research participants.

    Science.gov (United States)

    Mandava, Amulya; Millum, Joseph

    2013-01-01

    Researchers can design recruitment and consent processes so that potential participants are more likely to decide to enroll. These strategies work by subtly manipulating the participants. But how much manipulation is acceptable?

  4. Research participation improves student's exam performance.

    Science.gov (United States)

    Gil-Gómez de Liaño, Beatriz; León, Orfelio G; Pascual-Ezama, David

    2012-07-01

    Although there have been several attempts to explore for beneficial effects of research participation in social sciences, most of them have mainly explored satisfaction and students learning perceptions (e.g., Bowman & Waite, 2003). Very few works have studied learning by measuring exam performance. Moreover, participation has been usually conceptualized as a mixture of active and passive participation, including in the same measure different practices such as filling up questionnaires, running experiments or reading and answering questions about a journal article or a scientific conference. The present work tries to determine if there is an advantage due to research participation comparing exam performance, satisfaction and perceived learning of the matter Research Methods in Psychology, in three different groups (non-participating, passive and active participating). As we can see in the results, the mere participation benefits exam performance. Results are discussed in terms of the use of research participation as a new powerful active method in education.

  5. 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 ...

  6. 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…

  7. On Measuring Community Participation in Research

    Science.gov (United States)

    Khodyakov, Dmitry; Stockdale, Susan; Jones, Andrea; Mango, Joseph; Jones, Felica; Lizaola, Elizabeth

    2013-01-01

    Active participation of community partners in research aspects of community-academic partnered projects is often assumed to have a positive impact on the outcomes of such projects. The value of community engagement in research, however, cannot be empirically determined without good measures of the level of community participation in research…

  8. Toward ethical research practice with deaf participants.

    Science.gov (United States)

    Singleton, Jenny L; Jones, Gabrielle; Hanumantha, Shilpa

    2014-07-01

    In recent years, scholars have been critical of what they consider unethical conduct by researchers whose studies focus on members of the Deaf or signing communities. This is the first empirical study that investigates ethical concerns and recommendations from the perspective of three stakeholder groups (Deaf research participants, researchers, and Deaf studies experts). We analyzed focus group discussions using strategies from grounded theory and community-based participatory research. The themes we identified highlight the need for the broader scientific research community to include linguistically and culturally sensitive research procedures that more adequately protect the rights of Deaf research participants, as well as other marginalized groups. We address the need to increase the number of Deaf scientists and reconsider collaboration practices between Deaf and hearing researchers. © The Author(s) 2014.

  9. Why do people participate in epidemiological research?

    Science.gov (United States)

    Slegers, Claudia; Zion, Deborah; Glass, Deborah; Kelsall, Helen; Fritschi, Lin; Brown, Ngiare; Loff, Bebe

    2015-06-01

    Many assumptions are made about public willingness to participate in epidemiological research, yet few empirical studies have been conducted to ascertain whether such assumptions are correct. Our qualitative study of the public and of expert stakeholders leads us to suggest that people are generally prepared to participate in epidemiological research, particularly if it is conducted by a trusted public institution such as a government health department, charity, or university. However, there is widespread community distrust of research conducted or sponsored by pharmaceutical companies. Individuals are prompted to take part if the study concerns an illness they or a family member or friend have personally experienced or if they believe the research will confer a widespread public benefit. Preferences vary about the mode of contact for the research to be conducted. Willingness to participate in telephone surveys has decreased in recent years, and this may be a consequence of an increase in calls to homes by telemarketers and market researchers. Participants also stressed the importance of knowing where their names and contact details were sourced and suggested that this information be available to prospective study participants as a matter of course in the first approach or letter. We provide valuable information to epidemiologists in designing studies.

  10. Assessing research participants' perceptions of their clinical research experiences.

    Science.gov (United States)

    Kost, Rhonda G; Lee, Laura M; Yessis, Jennifer; Coller, Barry S; Henderson, David K

    2011-12-01

    Participants' perceptions of their research experiences provide valuable measures of ethical treatment, yet no validated instruments exist to measure these experiences. We conducted focus groups of research participants and professionals as the initial step in developing a validated instrument. Research participants enrolled in 12 focus groups, consisting of: (1) individuals with disorders undergoing interventions; (2) in natural history studies; or (3) healthy volunteers. Research professionals participated in six separate groups of: (1) institutional review board members, ethicists, and Research Subject Advocates; (2) research nurses/coordinators; or (3) investigators. Focus groups used standard methodologies. Eighty-five participants and 29 professionals enrolled at eight academic centers. Altruism and personal relevance of the research were commonly identified motivators; financial compensation was less commonly mentioned. Participants were satisfied with informed consent processes but disappointed if not provided test results, or study outcomes. Positive relationships with research teams were valued highly. Research professionals were concerned about risks, undue influence, and informed consent. Participants join studies for varied, complex reasons, notably altruism and personal relevance. They value staff relationships, health gains, new knowledge, and compensation, and expect professionalism and good organization. On the basis of these insights, we propose specific actions to enhance participant recruitment, retention, and satisfaction. © 2011 Wiley Periodicals, Inc.

  11. 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.

  12. Community participation in clinical health research - a new research ...

    African Journals Online (AJOL)

    The purpose of this review article is to explore and describe the notion of community participation in clinical health research, the complexities and challenges thereof and the paradigm shift of closing the gap between theory and practice, researcher and community in clinical health research. A new research paradigm is ...

  13. Indigenous Participation in VET: Understanding the Research

    Science.gov (United States)

    Ackehurst, Maree; Polvere, Rose-Anne; Windley, Georgina

    2017-01-01

    Indigenous educational and employment disadvantage is a much researched and discussed subject. The latest Prime Minister's Closing the Gap report (DPM&C 2017) shows that, while the gap is slowly decreasing in regard to participation in tertiary education, reducing employment disparity, particularly in remote areas, lags behind. This is despite…

  14. Challenges to participation in action research.

    Science.gov (United States)

    de Toledo, Renata Ferraz; Giatti, Leandro Luiz

    2015-03-01

    In order to understand and take action in complex health and environmental issues, we intend to analyse the conditions that are needed for those at risk to participate in research and intervention projects. In this study, we describe and discuss an action research experience carried out with an indigenous community in the Brazilian Amazon that suffers from serious sanitary problems, where cultural aspects in the relationship with the environment and health are particularly relevant. Different types of tools were deployed and combined and were subsequently classified according to their dialectic efficacy and ability to both conduct and steer the research and encourage the participation of social actors within a process of feedback. Even tools that were considered to be non-dialectic proved to be important sources of feedback. We present a research flow as a model of analysis and a framework for implementing action research, in which challenges to the participation of social actors are classified according to their priority through a critical review of the methodology developed. These challenges are social mobilization, co-operation, appropriation and a proactive stance. We conclude that a cyclic combination of dialectic and non-dialectic tools can increase participation, which though difficult to achieve is nevertheless necessary. During the development of this process, social mobilization is a prerequisite, whereas a proactive stance, the highest level of participation, requires continuous effort and the successive deployment of a variety of tools. © The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  15. Community participation in clinical health research - a new research ...

    African Journals Online (AJOL)

    The idea of community participation in health and research can be found in all major international and national declarations, including South Africa. Researchers are no longer perceived as having the right to exercise monopoly on conducting and explaining their research, but are perceived to have a duty to empower the ...

  16. Decision Making for Participation in Dementia Research

    Science.gov (United States)

    Black, Betty S.; Wechsler, Malory; Fogarty, Linda

    2011-01-01

    Objectives This study examined the decision-making process used by individuals asked to participate in dementia research and their opinions on how future proxy research decisions would or should be made, including participants’ preferred ethical standards for decision-making. Design Cross-sectional qualitative methods. Setting University research institutions. Participants Informants were 39 of 46 cognitively impaired individuals (i.e., subjects) who were asked to join one of six dementia studies and 46 study partners or surrogate decision-makers. Measurements Semi-structured individual interviews were audio recorded and transcribed for content analysis. Results Within dyads, subjects and surrogates often differed in their perspectives on how decisions were made regarding whether to join a study, and no single method was identified as a predominant approach. While there was only fair agreement within dyads on who ultimately made the decision, subjects and surrogates most often said it was the subject. For future proxy research decisions, subjects and surrogates most often preferred the ethical standard of best interests and least often favored substituted judgment. However, many participants preferred a combination of best interests and substituted judgment or a more complex approach that also considers the interests of others. Conclusions Individuals with mild to moderate cognitive impairment can and do engage to some extent in the decision-making process for dementia research and can discuss their opinions on how they would want such decisions made for them in the future. These findings support the recommended approach for obtaining proxy consent and subject assent if the individual lacks consent capacity. PMID:23498382

  17. Consent Issues in Genetic Research: Views of Research Participants

    Science.gov (United States)

    Goodman, Deborah; Johnson, Catherine O.; Wenzel, Lari; Bowen, Deborah; Condit, Celeste; Edwards, Karen L.

    2016-01-01

    Background With the arrival of large-scale population-based genomic research studies, such as the Precision Medicine Initiative (PMI), the question of how to best consent participants is significant, and in an era of patient-centered research, few studies have evaluated participants’ preferences about re-consent and broad consent. Using quantitative methods, this study evaluates participants’ views regarding the acceptability of re-consent and broad consent in subjects from the Participant Issues Project. Methods 450 participants were recruited from a cancer genetics registry, including cancer patients, their relatives, and controls. Participants completed a secure online survey. Results Most participants endorsed re-consent when investigating an unrelated health condition or sharing their de-identified data with an investigator at a different institution. Notification rather than re-consent was preferred when studying a different gene but the same disease. Over 80% of respondents endorsed re-consent when parents of a child gave the original consent and the child has now reached adulthood. Preferences for some scenarios varied by history of cancer at baseline, gender, stage of cancer, or case versus control group. The large majority of participants preferred the option to select broad consent categories of research. Conclusion Understanding research participants’ preferences, including their views on the need for re-consent, are critical to the success of the PMI. PMID:27376949

  18. Paying Clinical Research Participants: One Institution's Research Ethics Committees' Perspective.

    Science.gov (United States)

    Ripley, Elizabeth B D; Macrina, Frank L; Markowitz, Monika

    2006-12-01

    REGULATORY GUIDELINES LEAVE determination of coercion and undue influence of research participants open to interpretation. A web-based survey was conducted of the research ethics committees members at Virginia Commonwealth University (VCU) to evaluate their perspectives on paying participants in clinical research via general questions, as well as 8 short cases involving hypertension placebo-controlled trials, a pilot exercise study, a survey of substance abusers, a healthy-volunteer pharmacokinetic study, a twin study involving DNA samples, and an asthma medication study in children. Research ethics committee members were asked to state what payment they would consider appropriate for a given type of protocol. The results suggest that risk, time required, reimbursement for expenses, and inconvenience were important in determining appropriate payment, while income and funding source were not. The case studies revealed wide variation in recommended payments both within type of study and between studies.

  19. Human Research Program

    Data.gov (United States)

    National Aeronautics and Space Administration — Strategically, the HRP conducts research and technology development that: 1) enables the development or modification of Agency-level human health and performance...

  20. Human Research Ethics Committees in Technical Universities

    NARCIS (Netherlands)

    Koepsell, D.R.; Brinkman, W.P.; Pont, S.C.

    2014-01-01

    Human research ethics has developed in both theory and practice mostly from experiences in medical research. Human participants, however, are used in a much broader range of research than ethics committees oversee, including both basic and applied research at technical universities. Although

  1. 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

  2. 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

  3. IN HUMAN RESEARCH PROPOSALS

    African Journals Online (AJOL)

    These researchers tested the effect of. Hallucinogenic ... stories illustrating human cruelty as well as strong advocacy for the ... Experiments must be strictly beneficial to individuals,their communities, or the society in general. Same experiments previously conducted on animals and the natural history of the disease must be ...

  4. 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...

  5. Parents' Perspectives on Participating in Genetic Research in Autism

    Science.gov (United States)

    Trottier, Magan; Roberts, Wendy; Drmic, Irene; Scherer, Stephen W.; Weksberg, Rosanna; Cytrynbaum, Cheryl; Chitayat, David; Shuman, Cheryl; Miller, Fiona A.

    2013-01-01

    Genetic research in autism depends on the willingness of individuals with autism to participate; thus, there is a duty to assess participants' needs in the research process. We report on families' motives and expectations related to their participation in autism genetic research. Respondents valued having a genetic result, as it alleviates guilt,…

  6. Research altruism as motivation for participation in community-centered environmental health research.

    Science.gov (United States)

    Carrera, Jennifer S; Brown, Phil; Brody, Julia Green; Morello-Frosch, Rachel

    2018-01-01

    Protection of human subjects in research typically focuses on extrinsic rather than intrinsic motivations for participation in research. Recent sociological literature on altruism suggests that multiple kinds of altruism exist and are grounded in a sense of connection to common humanity. We interviewed participants in eight community-centered research studies that sampled for endocrine disrupting compounds and that shared research findings with participants. The results of our analysis of participation in these studies indicate that altruistic motivations were commonly held. We found that these sentiments were tied to feeling a sense of connection to society broadly, a sense of connection to science, or a sense of connection with the community partner organization. We develop a new concept of banal altruism to address mundane practices that work towards promoting social benefits. Further, we offer that research altruism is a specific type of banal altruism that is a multi-faceted and important reason for which individuals choose to participate in community-centered research. Copyright © 2017 Elsevier Ltd. All rights reserved.

  7. Overcoming barriers to student participation in research

    Directory of Open Access Journals (Sweden)

    Tanna R

    2015-09-01

    Full Text Available Ravina Tanna,1,* Nikhil Patel,1,* Sameera Tanna21Imperial College School of Medicine, Imperial College London, South Kensington, 2King's College London Medical School, King's College London, London Bridge, London, UK  *These authors contributed equally to this workWe read with great interest Sheikh et al’s study1 on factors contributing to lack of interest in research among medical students in Pakistan. As students in London, UK, we agree that there are a number of barriers preventing medical students engaging in research activities, such as underestimating the importance of research and difficulties making contacts with academics in order to undertake a project.View original article by Sheikh et al

  8. Farmer participation in soil management research process

    African Journals Online (AJOL)

    encouraged to relate soil to suitability of particular crops, prioritizing for soil management research work in Tanzania. and discuss soil fertility management. Tripp and Woolley (1989) suggested a six-step format in. The farms were later revisited for formal interviews on identifying factors for experimentation and Lightfoot et al.'.

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

    Science.gov (United States)

    Crane, Stacey; Broome, Marion E

    2017-06-01

    The past 20 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. 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. This systematic review was conducted per the Long, Godfrey, Randall, Brettle, and Grant 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 searches were: English language, year of publication between 2003 and 2014, humans, abstract available, and age birth-18 years. 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. 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. © 2017 Sigma Theta Tau International.

  10. Informed consent for research participation in frail older persons.

    Science.gov (United States)

    Barron, Jeremy S; Duffey, Patricia L; Byrd, Linda Jo; Campbell, Robin; Ferrucci, Luigi

    2004-02-01

    Informed consent has been the most scrutinized and controversial aspect of clinical research ethics. Institutional review boards (IRBs), government regulatory agencies, and the threat of litigation have all contributed to increasingly detailed consent documents that hope to ensure that subjects are not misled or coerced. Unfortunately, the growing regulatory burden on researchers has not succeeded in protecting subjects, but has rather made the consent process less effective and has discouraged research on vulnerable populations. As a matter of fact, investigators and ethicists continue to identify failures of the consenting process, particularly concerning participation in research of older individuals. The challenges involved in ensuring appropriate consent from the elderly include physical frailty, reduced autonomy and privacy, and impaired decision-making capacity due to dementia, delirium, or other neuropsychiatric illnesses. Ageism among investigators also contributes to failure of informed consent. The evaluation and continuing re-evaluation of an individual's decision-making capacity is critical but difficult. In the most extreme cases, the older adult's ability to participate in the consent process is clearly impaired. However, in many instances, the decision-making capacity is only partially impaired but declines during the course of a research project. Implementing methods of effective communication may enable many frail elderly individuals to make informed decisions. Special challenges are posed by research on end-of-life care, which typically involves frail, older subjects who are uniquely vulnerable, and research is conducted in institutional settings where subtle violations of autonomy are routine. Clearly, the frail elderly represent a vulnerable population that deserves special attention when developing and evaluating an informed consent process. Two important ethical conflicts should be kept in mind. First, although vulnerable older patients must

  11. Human parasitology worldwide research.

    Science.gov (United States)

    Garrido-Cardenas, Jose Antonio; Mesa-Valle, Concepción; Manzano-Agugliaro, Francisco

    2017-11-09

    In this article, the trends in human parasitology have been studied through the analysis of the number of publications in this area. The parameters studied were: number of articles, language, countries and institutions with the highest number of publications, and keywords with greater presence in the articles of human parasitology. The results of the analysis confirm the growing interest in this area, observing an exponential growth in the number of publications in the last decades. We also verified that the main country in terms of scientific production is the USA, although among the most important institutions, we find non-US centres such as the Oswaldo Cruz Foundation and the London School of Hygiene and Tropical Medicine. For observing the relative importance of the journals that publish articles in this specific topic, an index has been created based on the h-index of the journal with publications related to human parasitology and divided by every 100 items. This rank is led fist by 'Journal of Medical Entomology' closely followed by 'Parasitology'. The analysis of the keywords allows to draw conclusions about the great importance of malaria in the current world research. A change in analytical methodology is also observed, and molecular techniques are now being imposed. These techniques, in the near future, have to influence in an improvement in the treatments and prevention of the diseases caused by parasites. Finally, it can be seen that diseases traditionally studied as helminthiasis and amebiasis are currently as well studied as others such as toxoplasmosis or leishmaniasis.

  12. Factors associated with non-participation in a research ...

    African Journals Online (AJOL)

    Participation in research is crucial for success of research. It has been widely argued to be an important factor in interpreting research and implementation of the findings. In this study, factors associated with non-participation in the home based RCT VCT study in rural communities in Monze were explored. Methodology: ...

  13. 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: 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...... 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...

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

    Science.gov (United States)

    Rahman, Sayeeda; Majumder, Md Anwarul Azim; Shaban, Sami F; Rahman, Nuzhat; Ahmed, Moslehuddin; Abdulrahman, Khalid Bin; D'Souza, Urban Ja

    2011-01-01

    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 research culture'. This article examines the barriers to and benefits of physician participation in clinical research as well as interventions needed to increase their participation, including the specific role of undergraduate medical education. The main challenge is the unwillingness of many physicians and patients to participate in clinical trials. Barriers to participation include lack of time, lack of resources, trial-specific issues, communication difficulties, conflicts between the role of clinician and scientist, inadequate research experience and training for physicians, lack of rewards and recognition for physicians, and sometimes a scientifically uninteresting research question, among others. Strategies to encourage physician participation in clinical research include financial and nonfinancial incentives

  15. Deep Play: Arts experiments as strategies of participative research

    Directory of Open Access Journals (Sweden)

    Margarete Jahrmann

    2015-12-01

    Full Text Available This essay elaborates on historic and contemporary case studies of experimental game mechanics applied within the field of arts, that can be consequently identified as viable methods of research in the field of social interaction. Humanities and arts draw insights on experiments based on game mechanics. Practices of role-play starting with the beginning of experiments in modern physics will be analysed herein and compared to contemporary arts and games practices. Strategies of artistic avant-grades lead to contemporary models of networked forms of playful research practice considering installations as experimental systems in order to generate artistic artefacts as epistemic objects. This inquiry draws on ideas of a participative research method applied in the study of playfulness as introduced in anthropologies and ethnologies. The concepts of a Ludic Society (Constant 1958 and The Ludic Society 2006 - 2016 serve as evidence for this form of participatory research in the arts, about game mechanics and social games, about the systemic power of academic writing and the necessity of membership in arts and research associations, that enables one to publish peer-reviewed writings. As a critical playful society is central to developing creative research, these examples not only provide conclusions on research methods and arts strategies, but also on possibilities of interventions to the society as a whole. The essay’s aim is to provide a theoretical framework for the analysis of play as process in arts-based research experiments. Secondly, it questions the power of canonical writing versus poetic and automatic writing as tools of inquiry in arts and design research.

  16. 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…

  17. 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.

  18. Human subjects research handbook: Protecting human research subjects. Second edition

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1996-01-30

    This handbook serves as a guide to understanding and implementing the Federal regulations and US DOE Orders established to protect human research subjects. Material in this handbook is directed towards new and continuing institutional review board (IRB) members, researchers, institutional administrators, DOE officials, and others who may be involved or interested in human subjects research. It offers comprehensive overview of the various requirements, procedures, and issues relating to human subject research today.

  19. 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.

  20. 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...... and collaboration. A special case of this is when objects behave in unpredictable ways, leading workshop participants to express their surprise, which, reportedly, invariably provokes joint participation. Using a conversation analytic approach, I examine cases where participants in the research workshop express...... 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....

  1. Equitable sampling of participants in biomedical research and clinical experiments

    Directory of Open Access Journals (Sweden)

    Klajn-Tatić Vesna

    2014-01-01

    Full Text Available There are several aspects of the requirement to provide for an equitable sampling of research participants. On the one hand, equitable sampling implies that the scientific research objectives shall be the cornerstone for determining the groups and individuals to be selected and included as research participants, rather than some other properties which are unrelated to research objectives (such as the subjects' vulnerability or privileges]. On the other hand, groups and individuals should not be denied the opportunity to participate in scientific research without a solid scientific justification. The concept of equitable sampling also implies that groups and individuals that have borne the risks and burden of research should enjoy some benefit from the research. The unjustified and excessive inclusion of certain groups as research participants is equally unfair and inequitable as their unjustified and excessive exclusion from research. In many cases, the excessive inclusion of some groups is often based on the administrative availability of population rather than on the scientific rationale, which is considered unacceptable. In the British and American law, the sampling of research participants has to be a reflection of the multi-cultural society, which implies taking into account the participants' ethnicity, gender, disability, age and sexual orientation in the process of planning, executing and implementing the research plan. However, literature shows that the exclusion of some groups from participation in the research is not the most important issue in sampling but whether it concurrently implies the exclusion from the benefits stemming from the research results, which would be unfair. In addressing these issues, the literature differentiates between equitable sampling in terms of benefits from a quantitative research and equitable sampling in terms of benefits from a qualitative research. Generally, sampling in the quantitative research is

  2. Perceptions and attitudes to clinical research participation in Qatar

    Directory of Open Access Journals (Sweden)

    Hiba Tohid

    2017-12-01

    Full Text Available Recruitment into clinical research studies is a major challenge. This study was carried out to explore the perceptions and attitudes towards clinical research participation among the general public in Qatar. A population based questionnaire study was carried out at public events held in Qatar. Residents of Qatar, 18 years or above in age were surveyed, anonymously, following verbal consent. Descriptive and multivariate analyses were conducted. We administered 2517 questionnaires to examine clinical research participation, of which 2379 complete forms were analyzed. Those who had previously been approached to participate in research completed a more detailed assessment. Data showed that only 5.7% participants (n = 134 had previously been approached to participate in a clinical research study. Of these 63.4% (n = 85 had agreed to participate while 36.6% (n = 49 had declined. The main reasons for declining participation included: time constraint (47.8%, n = 11, ‘fear’ (13.0%, n = 3, lack of awareness about clinical research (8.7%, n = 2 and lack of interest (8.7%, n = 2. ‘To help others’ (31.8%, n = 27 and ‘thought it might improve my access to health care’ (24.7%, n = 21 were the prime motivators for participation. There was a general agreement among participants that their previous research experience was associated with positive outcomes for self and others, that the research conduct was ethical, and that opportunities for participation will be welcomed in future. More than ten years of stay within Qatar was a statistically significant determinant of willingness to participate, adjusted odds ratio 5.82 (95% CI 1.93–17.55, p = 0.002. Clinical research participation in Qatar needs improvement. Time constraints, lack of trust in and poor awareness about clinical research are main barriers to participation. Altruism, and improved health access are reported as prime motivators. Deeper insight in to the factors

  3. Ethics, Ethical Human Research and Human Research Ethics Committees

    Science.gov (United States)

    Lindorff, Margaret

    2010-01-01

    Non-medical research involves the same issues of justice, beneficence, and respect for persons that apply to non-medical research. It also may involve risk of harm to participants, and conflicts of interest for researchers. It is therefore not possible to argue that such research should be exempt from ethical review. This paper argues that…

  4. Public Participation in Scientific Research: a Framework for Deliberate Design

    Directory of Open Access Journals (Sweden)

    Jennifer L. Shirk

    2012-06-01

    Full Text Available Members of the public participate in scientific research in many different contexts, stemming from traditions as varied as participatory action research and citizen science. Particularly in conservation and natural resource management contexts, where research often addresses complex social-ecological questions, the emphasis on and nature of this participation can significantly affect both the way that projects are designed and the outcomes that projects achieve. We review and integrate recent work in these and other fields, which has converged such that we propose the term public participation in scientific research (PPSR to discuss initiatives from diverse fields and traditions. We describe three predominant models of PPSR and call upon case studies suggesting that - regardless of the research context - project outcomes are influenced by (1 the degree of public participation in the research process and (2 the quality of public participation as negotiated during project design. To illustrate relationships between the quality of participation and outcomes, we offer a framework that considers how scientific and public interests are negotiated for project design toward multiple, integrated goals. We suggest that this framework and models, used in tandem, can support deliberate design of PPSR efforts that will enhance their outcomes for scientific research, individual participants, and social-ecological systems.

  5. Human Performance Research Center

    Data.gov (United States)

    Federal Laboratory Consortium — Biochemistry:Improvements in energy metabolism, muscular strength and endurance capacity have a basis in biochemical and molecular adaptations within the human body....

  6. Participation of the left inferior frontal gyrus in human originality.

    Science.gov (United States)

    Kleinmintz, Oded M; Abecasis, Donna; Tauber, Amitay; Geva, Amit; Chistyakov, Andrei V; Kreinin, Isabella; Klein, Ehud; Shamay-Tsoory, Simone G

    2018-01-01

    Human creative cognition is commonly described as a twofold cyclic process that involves an idea generation phase and an idea evaluation phase. Although the evaluation phase makes a crucial contribution to originality, its underlying mechanisms have not received sufficient research attention. Here, we suggest that the left inferior frontal gyrus (lIFG) plays a major role in the interplay between the evaluation and generation networks and that inhibiting this region's activity may have an effect on "releasing" the generation neural network, resulting in greater originality. To examine the neural networks that mediate the generation and evaluation of ideas, we conducted an fMRI experiment on a group of healthy human participants (Study 1), in which we compared an idea generation task to an idea evaluation task. We found that evaluating the originality of ideas is indeed associated with a relative increase in lIFG activation, as opposed to generating original ideas. We further showed that temporarily inhibiting the lIFG using continuous theta-burst stimulation (Study 2) results in less strict evaluation on the one hand and increased originality scores on the other. Our findings provide converging evidence from multiple methods to show that the lIFG participates in evaluating the originality of ideas.

  7. Participation Levels in 25 Community-Based Participatory Research Projects

    Science.gov (United States)

    Spears Johnson, C. R.; Kraemer Diaz, A. E.; Arcury, T. A.

    2016-01-01

    This analysis describes the nature of community participation in National Institutes of Health and Centers for Disease Control and Prevention funded community-based participatory research (CBPR) projects, and explores the scientific and social implications of variation in community participation. We conducted in-depth interviews in 2012 with…

  8. Opinions of children about participation in medical genetic research

    NARCIS (Netherlands)

    Pal, S.M. van der; Sozanska, B.; Madden, D.; Kosmeda, A.; Debinska, A.; Danielewicz, H.; Boznanski, A.; Detmar, S.

    2011-01-01

    Aims: The objective was to evaluate children's opinions about their participation in a large research project. Methods: Polish children between 6 and 14 years of age completed a questionnaire about their participation in the Polish Gabriel study (which aims to identify genetic and environmental

  9. (Why) should we require consent to participation in research?

    Science.gov (United States)

    Wertheimer, Alan

    2014-06-01

    It is widely accepted that informed consent is a requirement of ethical biomedical research. It is less clear why this is so. As an argumentative strategy the article asks whether it would be legitimate for the state to require people to participate in research. This article argues that the consent requirement cannot be defended by appeal to any simple principle, such as not treating people merely as a means, bodily integrity, and autonomy. As an argumentative strategy the article asks whether it would be legitimate for the state to require people to participate in research. I argue that while it would be legitimate and potentially justifiable to coerce people to participate in research as a matter of first-order moral principles, there are good reasons to adopt a general prohibition on coercive participation as a matter of second-order morality.

  10. 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.

  11. The adolescent research participant: strategies for productive and ethical interviewing.

    Science.gov (United States)

    Mack, Rita; Giarelli, Ellen; Bernhardt, Barbara A

    2009-12-01

    Nurse researchers who seek to study the experiences of adolescents have limited resources to assist them with the process. Although some elements of interviewing are standard practice, special approaches are needed for the adolescent participating in research. Interviews are especially challenging. The purpose of this article is to present strategies to assist researchers as they engage this cohort in research. These strategies include evaluating the adolescent's developmental level, designing developmentally appropriate questions, and refining interviewing techniques to optimize the experience for the participants. Strategies presented are useful to clinicians who wish to establish a therapeutic rapport with young patients.

  12. Rethinking Qualitative Research: Research Participants as Central Researchers and Enacting Ethical Practices as Habitus

    Directory of Open Access Journals (Sweden)

    Rowhea Elmesky

    2005-09-01

    Full Text Available This article suggests that qualitative research group dynamics shape university re­searchers' capacities for expertly enacting ethical practices. Specifically, I assert that when research participants become the researchers, both univer­sity-based and community-based members of the research group have opportunities to deeply experi­ence each other's life worlds. By spending time to­gether as researchers, we can then develop ethical expertise that is fluid, unconscious, and implicitly appropriate for the community in which the re­search is being conducted. URN: urn:nbn:de:0114-fqs0503367

  13. Participant Trends in the Geosciences Research Experiences for Undergraduates Program

    Science.gov (United States)

    Walters, C. K.; Patino, L. C.; Rom, E. L.; Adams, A. S.

    2016-12-01

    The National Science Foundation (NSF) supports programs for undergraduate students to gain experience in research. In 2016, there were nearly 60 active Research Experience for Undergraduate (REU) sites across the nation that provided research opportunities in Geosciences (GEO). At these REU sites, students carried out independent research projects and had the chance to present the information at national conferences. The participants often joined research groups that included other undergraduate and graduate students, postdoctoral scholars, and investigators. Between 2009 and 2016, there were over 26,000 applications to GEO REU sites and about 1,953 applicants were selected to participate. Data for GEO REU sites has been collected using two mechanisms, direct queries to the REU site managers (2009-2012, and 2016) and analysis of award progress reports (2014-2015). The information collected since 2009 has provided a temporal description of who is participating in the GEO REU sites (e.g. gender, demographics, academic level). The analysis of the trends in the REU sites has shown an increase of women participating in the research opportunities across all disciplines, to the point that in some sites there is need to increase the participation of men. The number of minority and underrepresented students has also increased. Throughout this period, the academic level of the participants in GEO REU sites has also changed; the number of students who have completed only the first or second year of college has increased. The trends in the data allow NSF to understand who is participating in the REUs and to incentivize the research community to engage students who will benefit from these experiences, but who are not currently participating.

  14. Participation in Information Markets Research: A New Conceptualization and Measurement

    Directory of Open Access Journals (Sweden)

    Khalid N. Alhayyan

    2015-04-01

    Full Text Available Participation is a fundamental concept in information systems research. It has been viewed to be a promising factor for the success of any IT system. However, its complex nature with respect to its conceptualization and measurement reported mix findings to the literature. In this paper, a literature review is conducted across many research disciplines to find a solid ground for proposing definition and new measures for assessing computer-recorded (e.g. online participation. Specifically, this paper redefines traditional views on IS-related participation into a new conceptualization, and proposes methods for its operationalization to appropriately fit within recent technological contexts such as information markets.

  15. Understanding informed consent for participation in international health research.

    Science.gov (United States)

    Jegede, Ayodele S

    2009-08-01

    To participate in health research, there is a need for well-administered informed consent. Understanding of informed consent, especially in international health research, is influenced by the participants' understanding of information and the meaning attached to the information communicated to them regarding the purpose and procedure of the research. Incorrect information and the power differential between researcher and participants may lead to participants becoming victims of harmful research procedures. Meningitis epidemics in Kano in early 1996 led to a response from drug companies, especially Pfizer, as well as humanitarian workers from Médecins Sans Frontiers, which resulted in an unethical trial. Pfizer's drug trial during the epidemics has left a lasting controversy, which has yet to be resolved. This paper examines the key issues surrounding the controversy, discusses the context of informed decision-making, the ethical issues and implications of the incident, and concludes with some recommendations. Relevant texts, journals, Internet materials, newspaper articles and documentary materials on the conduct of the Pfizer's Trovan trial have been consulted. Four types of action (act intuitively, act rationally, act ignorantly, and act contextually - based on information provided) are identified as possible options for decision making. Participants most likely acted in ignorance due to poor understanding of the information contained in the verbal informed consent administered, thereby raising ethical issues. It is concluded that health research ethics committees have an important role to play nationally and locally in overseeing research, and in avoiding future occurrences.

  16. 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.

  17. Family Caregiver Participation in Palliative Care Research: Challenging the Myth.

    Science.gov (United States)

    Aoun, Samar; Slatyer, Susan; Deas, Kathleen; Nekolaichuk, Cheryl

    2017-05-01

    Despite international guidelines emphasizing consumer-directed care and autonomous decisions in research participation, there is a common myth that research can be an additional and unwanted burden on patients and their family members. To examine the experiences and impact of research involvement on family caregivers (FCs) of terminally ill people, focusing within home-based palliative care. Three hundred sixteen of 322 participants (98.1%), who completed an FC support intervention through a stepped-wedge cluster trial (Australia, 2012-2015), participated in a postintervention telephone interview on their study experiences, which included quantitative and qualitative questions. Ninety-seven percent of both the control (n = 89) and intervention (n = 227) groups perceived positive aspects, whereas almost all did not report any negative aspects of being involved in this research; the majority rated their involvement as very/extremely beneficial (control 77%; intervention 83%). The qualitative analysis generated three major themes: "intrapersonal-inward directed"; "connection with others-outward directed"; and "interpersonal-participant-researcher relationship." This study provided quantitative and qualitative evidence challenging the myth. In contrast to health professional concerns, FCs appreciated the opportunity to participate and benefited from their involvement in research. Research protocols need to be specifically tailored to the needs of family caregivers and include debriefing opportunities for all participants at the end of intervention studies, regardless of which group they have been assigned. Strategies that facilitate health professionals' understanding of the research and risk benefits may help reduce gatekeeping and improve the validity of research findings. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

  18. 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

    2017-10-24

    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.

  19. Belief and participation with clinical physiotherapists in research

    Directory of Open Access Journals (Sweden)

    T.K. Hamzat

    2002-02-01

    Full Text Available Research is a major tool in updating professional knowledge and discovering of new techniques.  The relevance ofresearch to Physiotherapy in this era of evidence-based practice cannotbe over-emphasised.  This survey was carried out to investigate: a thelevel of participation of Kuwait based clinical physical therapists (CPTsin research (b their research beliefs and (c factors enhancing or hindering their participation in research.One hundred and five CPTs from seven Ministry of Health (MOHHospitals were surveyed, using a 21 - item structured questionnaire.Ninety-six of the 105 questionnaire forms were returned, 87 (90.6% ofwhich were complete.  The results showed that 71 (81.6% of the participants agreed that CPTs should engage in research and 79 (90.8% believed that research would enhance practice.  While 75 (86.2% claimed that readingPhysiotherapy journals has enhanced their practice, only 34 (39.1% had ever participated in any research since qualifying as a basic physiotherapist. Only 6(6.9% had scientific publications in professional journals and 34(39.1% were regularly subscribing to professional journals.  Five factors were identified as hindrances to research.These were poor library facilities (80.4%, time constraints (86.2%, lack of research funds (74.7%, lack of equip-ment (71.3% and lack of pre-requisite training in research activities (44.8%.From the results obtained in this survey, it can be inferred that the level of participation of Kuwait - based CPTs inresearch is very low.  Thus, implying that clinical observations are not being validated through research.  Acquisitionof new knowledge and updating on existing/methods/techniques through the reading of professional Journals is low.

  20. participation: an under theorised icon in research and curriculum ...

    African Journals Online (AJOL)

    This paper reviews participation as an emerging moral imperative in a democratising South Africa. Historical tensions in environmental education are probed to explvre participatory Lu;·no and a rapid pop- ularising of action research into the late 1980's. Recent cases of participatory research and curriculum development ...

  1. Resource-poor Farmer Participation in Formal Research is Easier ...

    African Journals Online (AJOL)

    This study uses a case study of a livestock research project conducted in Zimbabwe that demonstrates some of the practical difficulties in achieving effective farmer participation. A theoretical model of an ideal resource-poor farmer participatory research approach was used as an overlay on the project to assess the extent of ...

  2. Participation: An under theorised icon in research and curriculum ...

    African Journals Online (AJOL)

    This paper reviews participation as an emerging moral imperative in a democratising South Africa. Historical tensions in environmental education are probed to explore participatory turns and a rapid popularising of action research into the late 1980's. Recent cases of participatory research and curriculum development are ...

  3. 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…

  4. Outdoor Recreation Participation and Environmental Concern: A Research Summary

    Science.gov (United States)

    Berns, Gretchen Newhouse; Simpson, Steven

    2009-01-01

    Many experiential educators assume that participation in outdoor recreation creates an awareness and commitment to the environment through direct experience. This research summary looks to whether the research supports such an assumption. Specifically it reviews the key literature on this topic, examines the various classifications of outdoor…

  5. Integrated Extravehicular Activity Human Research Plan: 2017

    Science.gov (United States)

    Abercromby, Andrew

    2017-01-01

    Multiple organizations within NASA as well as industry and academia fund and participate in research related to extravehicular activity (EVA). In October 2015, representatives of the EVA Office, the Crew and Thermal Systems Division (CTSD), and the Human Research Program (HRP) at NASA Johnson Space Center agreed on a formal framework to improve multi-year coordination and collaboration in EVA research. At the core of the framework is an Integrated EVA Human Research Plan and a process by which it will be annually reviewed and updated. The over-arching objective of the collaborative framework is to conduct multi-disciplinary cost-effective research that will enable humans to perform EVAs safely, effectively, comfortably, and efficiently, as needed to enable and enhance human space exploration missions. Research activities must be defined, prioritized, planned and executed to comprehensively address the right questions, avoid duplication, leverage other complementary activities where possible, and ultimately provide actionable evidence-based results in time to inform subsequent tests, developments and/or research activities. Representation of all appropriate stakeholders in the definition, prioritization, planning and execution of research activities is essential to accomplishing the over-arching objective. A formal review of the Integrated EVA Human Research Plan will be conducted annually. Coordination with stakeholders outside of the EVA Office, CTSD, and HRP is already in effect on a study-by-study basis; closer coordination on multi-year planning with other EVA stakeholders including academia is being actively pursued. Details of the preliminary Integrated EVA Human Research Plan are presented including description of ongoing and planned research activities in the areas of: physiological and performance capabilities; suit design parameters; EVA human health and performance modeling; EVA tasks and concepts of operations; EVA informatics; human-suit sensors; suit

  6. Reasons behind the participation in biomedical research: a brief review

    Directory of Open Access Journals (Sweden)

    Sonia Mansoldo Dainesi

    2014-12-01

    Full Text Available INTRODUCTION: Clinical research is essential for the advancement of Medicine, especially regarding the development of new drugs. Understanding the reasons behind patients' decision of participating in these studies is critical for the recruitment and retention in the research. OBJECTIVES: To examine the decision-making of participants in biomedical research, taking into account different settings and environments where clinical research is performed. Methods: A critical review of the literature was performed through several databases using the keywords: "motivation", "decision", "reason", "biomedical research", "clinical research", "recruitment", "enrollment", "participation", "benefits", "altruism", "decline", "vulnerability" and "ethics", between August and November 2013, in English and in Portuguese. RESULTS: The review pointed out that the reasons can be different according to some characteristics such as the disease being treated, study phase, prognoses and socioeconomic and cultural environment. Access to better health care, personal benefits, financial rewards and altruism are mentioned depending on the circumstances. CONCLUSION: Finding out more about individuals' reasons for taking part in the research will allow clinical investigators to design studies of greater benefit for the community and will probably help to remove undesirable barriers imposed to participation. Improving the information to health care professionals and patients on the benefits and risks of clinical trials is certainly a good start.

  7. Ethical approaches to adolescent participation in sexual health research.

    Science.gov (United States)

    Flicker, Sarah; Guta, Adrian

    2008-01-01

    In this paper we make the case for the importance of adolescent sexual health research, and argue that requiring parental consent for adolescent participation may (a) be unwarranted, (b) be inconsistent with the principles of justice and inclusiveness, (c) be confusing, and (d) serve to silence young people who most need to have a voice in sexual health research. Through a case study of the Toronto Teen Survey, we offer concrete suggestions and alternatives for protecting adolescent health research participants in community-based settings and promoting ethical research approaches. Strategies suggested include: (1) adopting a community-based participatory research approach, (2) careful attention to youth-friendly protocols and consent procedures, (3) proper training of all research staff and peer researchers, (4) partnering with experienced community based youth-serving agencies, (5) paying maximum attention to issues of confidentiality and anonymity, and (6) valuing participation appropriately. Institutional review boards and researchers should be encouraged to adopt localized context-dependent strategies that attend to the unique vulnerabilities of their particular study populations. Attention to flexibility, vulnerability, and community-specific needs is necessary to ensure appropriate ethical research practices that attend to the health and well-being of young people.

  8. 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

  9. 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

    2017-01-01

    Background: 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. Methods: The present authors opted for a responsive approach to evaluation, using a combination of interviews, questionnaires and focus…

  10. The evolution of research participant protections in South Africa

    Directory of Open Access Journals (Sweden)

    Amaboo Dhai

    2017-07-01

    Full Text Available South Africa (SA has played a leading role in health research internationally. Ethical guidelines for the protection of research participants have been published by the Medical Research Council (MRC as early as 1979. Ironically, the guidelines gave substantial prominence to the oppressive laws of the time. In its 4th edition of the guidelines, the MRC placed emphasis on SA needs, and incorporated the principles of the Bill of Rights of the SA Constitution 1996 into its guidelines. The most significant milestone in the history of participant protections in SA was the inclusion of research and experimentation in the Bill of Rights of the Constitution and the statutory legislation of protections in the National Health Act No. 61 of 2003.

  11. 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.

  12. 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

  13. Widening Participation: Challenges Confronting a Research-Intensive University

    Science.gov (United States)

    Cuthill, Michael; Schmidt, Christopher

    2011-01-01

    This article explores the challenges confronting a research-intensive Australian university in responding to the "widening participation" agenda outlined in the recent "Review of Higher Education". The university argued that it is not possible to respond effectively to this agenda without having a clear understanding of the…

  14. 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.

  15. 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...

  16. Research participation and health in persons with MDVI

    NARCIS (Netherlands)

    dr. A. Waninge

    2016-01-01

    Royal Dutch Visio is an expertise centre on visual impairment. In the domain Residence, daily care is provided to persons with multiple (intellectual and motor) disabilities and visual impairment (MDVI). The research Participation and Health was started within this domain in collaboration with the

  17. Broadening Participation in Research Focused, Upper-Division Learning Communities

    Science.gov (United States)

    Hinckley, Robert A.; McGuire, John P.

    2015-01-01

    We address several challenges faced by those who wish to increase the number of faculty participating in upper-division learning communities that feature a student research experience. Using illustrations from our own learning community, we describe three strategies for success that focus on providing low cost incentives and other means to promote…

  18. Can Human Subject Pool Participation Benefit Sociology Students?

    Science.gov (United States)

    Chin, Lynn Gencianeo; Gibbs Stayte, Patricia

    2015-01-01

    Instructors at non-research institutions are less able to expose their students to research firsthand. Utilizing human subject pools (HSPs) in class may be a solution. Given that HSPs tend to be used in introduction to psychology classes at research institutions, we examine a community college HSP to answer three questions: (1) Do community…

  19. [Participation, knowledge production, and evaluative research: participation by different actors in a mental health study].

    Science.gov (United States)

    Furtado, Juarez Pereira; Campos, Rosana Onocko

    2008-11-01

    This article reflects on the interrelations between participation, knowledge production, and public policy evaluation in light of issues from our own experience with evaluative research on a municipal network of Psychosocial Care Centers (CAPS) in Brazil. The article discusses the coordination of the complex process and the potentials and limits of partnerships for conducting qualitative evaluative studies in mental health with participation by different social actors. The authors conclude that qualitative evaluative research aligned with the perspective of including different points of view representing various segments is the best approach for understanding the numerous spin-offs from the implementation of services linked to the Brazilian psychiatric reform movement, given the inherent specificities of the mental health field.

  20. Participation in genetic testing research varies by social group.

    Science.gov (United States)

    Hensley Alford, Sharon; McBride, Colleen M; Reid, Robert J; Larson, Eric B; Baxevanis, Andreas D; Brody, Lawrence C

    2011-01-01

    Advances in technology have made individual access to personal genetic information foreseeable in the near future. Policy makers and the media forecast that the ready availability of personal genetic profiles would benefit both the individual and the health care system by improving outcomes and decreasing cost. However, there is a significant gap between having access to genetic data and either wanting or understanding the information it provides. Our primary aim was to evaluate, using a population-based sample of healthy adults, whether gender, race and education status influences interest and participation in a multiplex genetic susceptibility test. Healthy, insured individuals, 25-40 years of age, were approached via a large, integrated health system in which primary and specialty care is available. Study participants were offered personalized genetic risk information on 8 common chronic health conditions. Social groups historically known not to participate in genetic research (men, African Americans and those from lower education neighborhoods) were oversampled. We describe the recruitment outcomes and testing decisions of these social groups. We found that even among those with access to health care, African Americans were less likely to participate in the multiplex genetic susceptibility test, while those from higher education neighborhoods were more likely to participate. Our results suggest that large social groups will likely be underrepresented in research in personalized genomics even when robust population-based recruitment strategies are employed. Copyright © 2010 S. Karger AG, Basel.

  1. [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.

  2. Participant-Centric Initiatives and Medical Research: Scoping Review Protocol.

    Science.gov (United States)

    Coathup, Victoria; Hamakawa, Nao; Finlay, Teresa; Bell, Jessica; Kaye, Jane; Kato, Kazuto

    2017-12-12

    Significant advances in digital technologies have meant that health care data can be collected, stored, transferred, and analyzed for research purposes more easily than ever before. Participant-centric initiatives (PCI) are defined as "tools, programs, and projects that empower participants to engage in the research process" using digital technologies and have the potential to provide a number of benefits to both participants and researchers, including the promotion of public trust in medical research, improved quality of research, increased recruitment and retention, and improved health care delivery. The main objective of this scoping review is to describe the extent and range of PCIs across the United Kingdom, United States, and Japan that are designed to facilitate medical research. The methodological framework described by Levac et al will be applied to this scoping review. We will search electronic databases (MEDLINE, EMBASE, PsychINFO, Cumulative Index to Nursing, and Allied Health Literature and CiNii), grey literature sources, Internet search engines (Google and Bing), and hand search key journals and reference lists of relevant articles. All digital tools and programs will be eligible for inclusion if there is a description of key features and functions that fall within the parameters of a PCI. Only those that play a role in medical research will be included. Preliminary searches conducted in MEDLINE and EMBASE retrieved 1820 and 2322 results, respectively. The scoping review will be completed by January 2018. The scoping review will be the first to map the extent and range of PCIs currently available across the United Kingdom, United States, and Japan, and will be the first review to contribute to a better understanding of what PCIs patients may benefit from. Researchers and practitioners will be able to use information in this review as a guide for patients and also as a guide for the development of future tools and programs. The results will be

  3. 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

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

    DEFF Research Database (Denmark)

    Nordentoft, Helle Merete; Kappel, Nanna

    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 healthcare 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 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......, 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...

  5. Human Resource Development: A Foundation for Participative Leadership.

    Science.gov (United States)

    Appelbaum, Steven H.

    1979-01-01

    Discusses management theories and reports on a study establishing that, if managers are exposed to modern human resources management theories through a series of training programs, they will adopt a participative leadership style, and that this style will be reflected in their attitudes and the perceptions of their subordinates. (Author/IRT)

  6. Typologies of Altruistic and Financial Motivations for Research Participation.

    Science.gov (United States)

    Chin, Lisa J; Berenson, Jacqueline A; Klitzman, Robert L

    2016-10-01

    Questions arise concerning participants' motives in risky studies, such as HIV vaccine trials (HVTs). We interviewed in-depth 20 gay/bisexual men. Participants described both altruistic and nonaltruistic motives. Altruistic motivations emerged primarily, with nine typologies: (a) cultural, (b) community related, (c) familial, (d) religious, (e) professional, (f) political (e.g., HIV activism), (g) moral (e.g., making up for past wrongs), (h) existential (e.g., providing sense of meaning), and (i) other psychological (e.g., emotional gratification). Views of compensation varied: not a factor (55%), added incentive (25%), main motivator, but in conjunction with altruism (15%), and primary motivator (5%). HVT participants thus often have both altruistic and financial motives, and related typologies emerged. These findings have critical implications for studies on HIV, other conditions, and research ethics.

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

    DEFF Research Database (Denmark)

    Ringer, Agnes

    2013-01-01

    encountered in the fieldwork were indicative of discursive norms within the mental health services. It is argued that the multiple ways the researcher was positioned by participants revealed that the categories “patient” and “staff” were produced as polarized binaries with little leverage for negotiating...... 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...

  8. Social justice and research using human biological material: A ...

    African Journals Online (AJOL)

    Social justice in the context of research using human biological material is an important contemporary legal-ethical issue. A question at the heart of this issue is the following: Is it fair to expect a research participant (a person who participates in such research by, among others, making available biological material from his or ...

  9. Healthcare institutions do not favor care. Meaning of humanized care for people directly participating in it.

    Science.gov (United States)

    Beltrán-Salazar, Oscar Alberto

    2014-01-01

    This study sought to understand the meaning of humanized care for those directly participating in it. This was qualitative research with phenomenological interpretative approach conducted in Medellín, Colombia, during 2013. It included 16 participants among nurses, adult patients, and relatives. To gather the information, in-depth interviews were used; data analysis was performed manually according to the scheme proposed by Cohen, Kahn, and Stevees. According to the participants, institutions do not favor humanized care due to the inaccessibility of services whose possible causes are, among others, excessive procedural red tape, lack of resources, and long waits. Additionally, they state that nurses' work overload keeps them away from the patients and prevents caring for them. For the participants in the study, the humanized care practice of humanized care is affected negatively, on one side, by the service offered by healthcare institutions; and, on the other, by the influence exerted upon nurses, which conditions, in turn, how care is delivered.

  10. Open Science in Practice: Researcher Perspectives and Participation

    Directory of Open Access Journals (Sweden)

    Angus Whyte

    2011-03-01

    Full Text Available We report on an exploratory study consisting of brief case studies in selected disciplines, examining what motivates researchers to work (or want to work in an open manner with regard to their data, results and protocols, and whether advantages are delivered by working in this way. We review the policy background to open science, and literature on the benefits attributed to open data, considering how these relate to curation and to questions of who participates in science. The case studies investigate the perceived benefits to researchers, research institutions and funding bodies of utilising open scientific methods, the disincentives and barriers, and the degree to which there is evidence to support these perceptions. Six case study groups were selected in astronomy, bioinformatics, chemistry, epidemiology, language technology and neuroimaging. The studies identify relevant examples and issues through qualitative analysis of interview transcripts. We provide a typology of degrees of open working across the research lifecycle, and conclude that better support for open working, through guidelines to assist research groups in identifying the value and costs of working more openly, and further research to assess the risks, incentives and shifts in responsibility entailed by opening up the research process are needed.

  11. International Space Station Research Benefits for Humanity

    Science.gov (United States)

    Thumm, Tracy; Robinson, Julie A.; Johnson-Green, Perry; Buckley, Nicole; Karabadzhak, George; Nakamura, Tai; Kamigaichi, Shigeki; Sorokin, Igor V.; Zell, Martin; Fuglesang, Christer; hide

    2012-01-01

    The ISS partnership has seen a substantial increase in research accomplished, crew efforts devoted to research, and results of ongoing research and technology development. The ISS laboratory is providing a unique environment for research and international collaboration that benefits humankind. Benefits come from the engineering development, the international partnership, and from the research results. Benefits can be of three different types: scientific discovery, applications to life on Earth, and applications to future exploration. Working across all ISS partners, we identified key themes where the activities on the ISS improve the lives of people on Earth -- not only within the partner nations, but also in other nations of the world. Three major themes of benefits to life on earth emerged from our review: benefits to human health, education, and Earth observation and disaster response. Other themes are growing as use of the ISS continues. Benefits to human health range from advancements in surgical technology, improved telemedicine, and new treatments for disease. Earth observations from the ISS provide a wide range of observations that include: marine vessel tracking, disaster monitoring and climate change. The ISS participates in a number of educational activities aimed to inspire students of all ages to learn about science, technology, engineering and mathematics. To date over 63 countries have directly participated in some aspect of ISS research or education. In summarizing these benefits and accomplishments, ISS partners are also identifying ways to further extend the benefits to people in developing countries for the benefits of humankind.

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

    DEFF Research Database (Denmark)

    Gunn, Wendy; Buch Løgstrup, Louise

    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 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...

  13. Reimagining Human Research Protections for 21st Century Science.

    Science.gov (United States)

    Bloss, Cinnamon; Nebeker, Camille; Bietz, Matthew; Bae, Deborah; Bigby, Barbara; Devereaux, Mary; Fowler, James; Waldo, Ann; Weibel, Nadir; Patrick, Kevin; Klemmer, Scott; Melichar, Lori

    2016-12-22

    Evolving research practices and new forms of research enabled by technological advances require a redesigned research oversight system that respects and protects human research participants. Our objective was to generate creative ideas for redesigning our current human research oversight system. A total of 11 researchers and institutional review board (IRB) professionals participated in a January 2015 design thinking workshop to develop ideas for redesigning the IRB system. Ideas in 5 major domains were generated. The areas of focus were (1) improving the consent form and process, (2) empowering researchers to protect their participants, (3) creating a system to learn from mistakes, (4) improving IRB efficiency, and (5) facilitating review of research that leverages technological advances. We describe the impetus for and results of a design thinking workshop to reimagine a human research protections system that is responsive to 21st century science.

  14. Do research payments precipitate drug use or coerce participation?

    Science.gov (United States)

    Festinger, David S; Marlowe, Douglas B; Croft, Jason R; Dugosh, Karen L; Mastro, Nicole K; Lee, Patricia A; Dematteo, David S; Patapis, Nicholas S

    2005-06-01

    Providing high-magnitude cash incentives to substance abuse clients to participate in research is frequently viewed as unethical based on the concerns that this might precipitate new drug use or be perceived as coercive. We randomly assigned consenting drug abuse outpatients to receive payments of 10 US dollars, 40 US dollars, or 70 US dollars in either cash or gift certificate for attending a 6-month research follow-up assessment. At the 6-month follow-up, participants received their randomly determined incentive and were then scheduled for a second follow-up appointment 3 days later to detect new instances of drug use. Findings indicated that neither the magnitude nor mode of the incentives had a significant effect on rates of new drug use or perceptions of coercion. Consistent with the contingency management literature, higher payments and cash payments were associated with increased follow-up rates. Finally, the results suggest that higher magnitude payments may be more cost-effective by reducing the need for more intensive follow-up efforts.

  15. What is a meaningful result? Disclosing the results of genomic research in autism to research participants.

    Science.gov (United States)

    Miller, Fiona Alice; Hayeems, Robin Zoe; Bytautas, Jessica Peace

    2010-08-01

    Developments in genomics research have been accompanied by a controversial ethical injunction: that researchers disclose individually relevant research results to research participants. With the explosion of genomic research on complex psychiatric conditions such as autism, researchers must increasingly contend with whether--and which results--to report. We conducted a qualitative study with researchers and participants involved in autism genomics research, including 4 focus groups and 23 interviews with parents of autistic children, and 23 interviews with researchers. Respondents considered genomic research results 'reportable' when results were perceived to explain cause, and answer the question 'why;' that is, respondents set a standard for reporting individually relevant genetic research results to individual participants that is specific to autism, reflecting the metaphysical value that genetic information is seen to offer in this context. In addition to this standard of meaning, respondents required that results be deemed 'true.' Here, respondents referenced standards of validity that were context nonspecific. Yet in practice, what qualified as 'true' depended on evidentiary standards within specific research disciplines as well as fundamental, and contested, theories about how autism is 'genetic.' For research ethics, these finding suggest that uniform and context-free obligations regarding result disclosure cannot readily be specified. For researchers, they suggest that result disclosure to individuals should be justified not only by perceived meaning but also by clarity regarding appropriate evidentiary standards, and attention to the status of epistemological debates regarding the nature and cause of disorders.

  16. Healthcare institutions do not favor care. Meaning of humanized care for people directly participating in it

    OpenAIRE

    Oscar Alberto Beltrán-Salazar

    2014-01-01

    Objective. This study sought to understand the meaning of humanized care for those directly participating in it. Methodology. This was qualitative research with phenomenological interpretative approach conducted in Medellín, Colombia, during 2013. It included 16 participants among nurses, adult patients, and relatives. To gather the information, in-depth interviews were used; data analysis was performed manually according to the scheme proposed by Cohen, Kahn, and Stevees. Results. According ...

  17. Male Participation in Family Planning: Human Behaviour Perspective.

    Science.gov (United States)

    Joshi, L R

    2015-01-01

    Family planning (FP) is one of the major components of reproductive health and its goal is to prevent unwanted pregnancies and regulate wanted pregnancies, thereby ensuring the health of mothers and children. It also aims at regulating the population in order to maintain the vital balance between development and the environment. Ideally, FP depends on the efforts of a couple where the man and woman are equally responsible and accountable. In reality, however, this is not the case. It is in this background that the present study aims at examining the nature and level of male participation in preventing unwanted pregnancies and the factors that influence male participation in FP. The data for the study was derived using mixed methods, drawing from both quantitative and qualitative approaches. The research design was cross-sectional, descriptive and observational. Despite the high level of knowledge and awareness about FP among the respondents, it was found that male participation in FP continues to remain very low. The multidimensional factors influencing their participation include education of the couple (the unadjusted odds ratio of higher education level of respondents is 2.182 and the adjusted OR is 1.972; and the unadjusted OR of higher education level of the spouse is 2.030, and the adjusted OR is 1.570), and economic condition (the unadjusted OR of higher income is 2.272 and the adjusted OR is 2.436) of family. Male participation in FP was found to be higher in rural areas (69.8 %) and among Dalits (72.5%). Other factors include social stigma and religious practice, patriarchal notions, gender roles and individual characteristics. Male participation plays a crucial role in population management, but patriarchal notions, socioculturally defined gender roles, combined with the inefficiency of the current FP programme, and biological factors contribute towards keeping male participation very low.

  18. [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.

  19. Development and oversight of ethical health promotion quality assurance and evaluation activities involving human participants.

    Science.gov (United States)

    Sainsbury, Peter

    2015-12-01

    This paper considers the role of ethics and ethics review processes in the development of health promotion quality assurance and evaluation activities involving human participants. The Australian National Health and Medical Research Council (NHMRC) National Statement on Ethical Conduct in Human Research and associated documents provide the framework for the ethical conduct and independent review of research (including quality assurance and evaluation) involving humans in Australia. Identifying the level of risk to which participants may be exposed by participation in quality assurance and evaluation activities is essential for health promotion workers undertaking such activities. Organisations can establish processes other than review by a Human Research Ethics Committee for negligible and low risk research activities. Health promotion quality assurance and evaluation activities often involve negligible and low risk to participants. Seven triggers that indicate the need for ethics review of quality assurance and evaluation activities and a procedural checklist for developing ethical quality assurance and evaluation activities are provided. Health promotion workers should be familiar with the NHMRC's National Statement on Ethical Conduct in Human Research. When ethical considerations underpin the planning and conduct of all quality assurance and evaluation from the very beginning, the activity is the better for it, independent 'ethics approval' can mostly be secured without much trouble and workers' frustration levels are reduced. So what? Health promotion quality assurance and evaluation activities must be ethically justified. Health promotion workers should be familiar with the NHMRC's National Statement on Ethical Conduct in Human Research and should use it when developing health promotion quality assurance and evaluation activities.

  20. Embracing an "African Ethos" to facilitate African immigrants participation in medical genetics and genomics research.

    Science.gov (United States)

    Buseh, Aaron G; Stevens, Patricia E; Millon-Underwood, Sandra; Kelber, Sheryl T; Townsend, Leolia

    Limited published research exists on perceptions and potentials for black African immigrants' participation in medical genetics and genomics research. This study explores the inclination and disinclination of African immigrants to be involved in genetics and genomics research. In-depth qualitative interviews were employed in which a sample of black African immigrants 18 years and older (n = 34) were interviewed. Barriers included contrary beliefs and customs about disease and the human body that differs from Western conceptions, and lack of genuine connection to the health care system. Facilitators included promotion of an "African ethos," wherein Africans unite with one another in a communal extension of self and robust community involvement across the life span of genetic studies. It is important for researchers and genetic counselors to understand the sociocultural underpinnings of African immigrants about genetics and genomics research as an initial step to encouraging their participation. Copyright © 2016 Elsevier Inc. All rights reserved.

  1. The ambiguity of the concept of participation in measurement instruments : operationalization of participation influences research outcomes

    NARCIS (Netherlands)

    Stallinga, Hillegonda A.; Dijkstra, Pieter U.; Bos, Isaac; Heerkens, Yvonne F.; Roodbol, Petrie F.

    2014-01-01

    Objective: This study explores, based on the International Classification of Functioning, Disability and Health, the consequences of different operationalizations of participation in regression models predicting participation in one sample of patients. Design: Cross-sectional, comparative study.

  2. Usability: Human Research Program - Space Human Factors and Habitability

    Science.gov (United States)

    Sandor, Aniko; Holden, Kritina L.

    2009-01-01

    The Usability project addresses the need for research in the area of metrics and methodologies used in hardware and software usability testing in order to define quantifiable and verifiable usability requirements. A usability test is a human-in-the-loop evaluation where a participant works through a realistic set of representative tasks using the hardware/software under investigation. The purpose of this research is to define metrics and methodologies for measuring and verifying usability in the aerospace domain in accordance with FY09 focus on errors, consistency, and mobility/maneuverability. Usability metrics must be predictive of success with the interfaces, must be easy to obtain and/or calculate, and must meet the intent of current Human Systems Integration Requirements (HSIR). Methodologies must work within the constraints of the aerospace domain, be cost and time efficient, and be able to be applied without extensive specialized training.

  3. Defining Research: The Effect of Linguistic Choices on the Intentions to Participate in Clinical Research.

    Science.gov (United States)

    Strekalova, Yulia A

    2017-06-01

    Significant barriers to participant recruitment for clinical research (CR) are related to effective communication, and nurse coordinators are entrusted with being knowledge brokers between investigators and prospective participants. This prospective cohort study sought to identify linguistic choices that could inform and facilitate recruitment efforts. Healthy adults ( N = 204) were invited to join an online survey to assess the likelihood of participation in CR based on short and extended definitions of CR. Five short definitions included clinical trial, clinical study, health-related research study, community participatory study, and quality improvement study. The likelihood of participation in CR was the lowest for clinical trial and the highest for health-related research study. However, when only an extended definition was provided, those differences were not observed. A linguistic change from trial to study could lead to positive attitude toward CR and improvements in recruitment. However, ethical implications of linguistic choices should be considered.

  4. A proposal and prototype for a Research Risk Repository to improve the protection of research participants.

    Science.gov (United States)

    Rid, Annette; Wendler, David

    2011-12-01

    Accurate and consistent risk assessment is vital for the protection of research participants. Yet, current evaluation of the risks of research interventions often does not take into account the relevant empirical data. This approach raises concern that current practice may not be protecting research participants adequately, or that it may be thwarting acceptable research. To propose and evaluate the possibility of creating and maintaining a Research Risk Repository which would make empirical data on the risks of research interventions available to institutional review boards, investigators, funders, and others. Analysis of the usefulness of a Research Risk Repository and evaluation of whether currently available empirical data are sufficient to establish such a repository. Creation of a Research Risk Repository would provide a vital resource for systematically and accurately evaluating the risks of biomedical research. Realizing this goal requires data that have at least 4 characteristics: (1) trustworthy: to ensure credibility to all stakeholders; (2) robust: to support confident risk determinations; (3) inclusive: to cover all potential harms of the interventions under review; and (4) comprehensive: to determine which factors influence the risks of the interventions under review. Evaluation of existing data reveals that they satisfy these requirements for only a few research interventions and, even in those cases, only to a limited extent. Gaps in the currently available evidence highlight the need for systematic collection and maintenance of data on the risks posed by research interventions. Creation and maintenance of a Research Risk Repository would be costly and require regular updating as new data are collected, and new practices and interventions emerge. A Research Risk Repository has the potential to significantly improve the consistency and accuracy of the evaluation of research risks. However, currently available data are generally insufficient for this

  5. Re-Examining the Nature of Researcher-Participant Relationships in Qualitative Research.

    Science.gov (United States)

    Busier, Holly-Lynn; Pigeon, Yvette

    A qualitative research conversation needs to include a critical examination of a study's relational dimension. Excerpts are presented from two doctoral dissertations that discuss the nature of the researcher-participant relationships formed through the studies. The first dissertation, "Beyond the Yellow Brick Road: Educational Portraits of…

  6. Human Hallucinogen Research: Guidelines for Safety

    Science.gov (United States)

    Johnson, Matthew W.; Richards, William A.; Griffiths, Roland R.

    2010-01-01

    There has recently been a renewal of human research with classical hallucinogens (psychedelics). This paper first briefly discusses the unique history of human hallucinogen research, and then reviews the risks of hallucinogen administration and safeguards for minimizing these risks. Although hallucinogens are relatively safe physiologically and are not considered drugs of dependence, their administration involves unique psychological risks. The most likely risk is overwhelming distress during drug action (“bad trip”), which could lead to potentially dangerous behavior such as leaving the study site. Less common are prolonged psychoses triggered by hallucinogens. Safeguards against these risks include the exclusion of volunteers with personal or family history of psychotic disorders or other severe psychiatric disorders, establishing trust and rapport between session monitors and volunteer before the session, careful volunteer preparation, a safe physical session environment, and interpersonal support from at least two study monitors during the session. Investigators should probe for the relatively rare hallucinogen persisting perception disorder in follow up contact. Persisting adverse reactions are rare when research is conducted along these guidelines. Incautious research may jeopardize participant safety and future research. However, carefully conducted research may inform the treatment of psychiatric disorders, and may lead to advances in basic science. PMID:18593734

  7. 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…

  8. 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.

  9. 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.

  10. 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.

  11. Participation and Governance for More Human Smart Cities

    Directory of Open Access Journals (Sweden)

    Gabriella Pultrone

    2014-07-01

    Full Text Available The smartness seems to be the decisive factor that can enable the contemporary city to face a period of deep economic and social crisis, greater awareness of the scarcity of environmental resources and the increasing demand for security, health, education, technological progress. The so called ‘new urban question’  is structured around issues which are difficult to separate such as social inequalities, climate change, the right to accessibility, with respect to which the smart perspective is an opportunity that must be used by  territories and cities for the construction of development strategies based on the fundamental and inseparable dimensions of sustainability (environmental, economic, social and on a more complex transdisciplinary approach with real effects on quality of life. The same concept of smart city - initially with a pure energetic and technologic valence - has taken on a wider and more varied meaning, aimed at understanding the satisfaction of real and emerging needs, and contemplate the active involvement of the various urban actors, transforming the public institution from "provider" to "enabler", i.e. facilitator and promoter of development. Participation and governance are therefore the keywords on which to focus for a city conscious of its rich human and social capital, in which people are the real drivers of innovation and co-designers responsible for a smart city more humane and inclusive. The ongoing experiments in this direction at the European level provide interesting insights to envision desirable future scenarios not too far away

  12. 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

    2016-03-01

    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 and with child disaster survivors, specifically about research that includes children providing trauma recollections. 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 1 year after exposure. These 50 children also rated 3 emotions at 3 time points and rated their perceptions (e.g., benefit and regret) of research post-participation. Children (N = 28) also participated in phone surveys 3 months later to assess persistent participation-related emotions and perceptions. Child reported that emotions worsened from pre- to during participation; however, reports of emotions returned to preparticipation 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 postparticipation, as did 89.3% at the 3-month follow-up. Four percent of children reported some participation regret (no benefit) postparticipation, and 0% 3 months later. No children requested to stop participating, and none required postresearch connection with crisis services. Posttraumatic stress symptom severity, tornado exposure, and age were largely unrelated to child-reported emotions and perceptions of research. Results indicate that carefully planned and executed disaster-related research that includes children providing recollections can be conducted with preadolescents with little risk and some benefit. (c) 2016 APA, all rights reserved).

  13. 5. Factors Associated with non-participation in a Research

    African Journals Online (AJOL)

    Esem

    Both have been associated with sampling bias, delays in completion ... participants' blood. Many respondents feared that their blood would be used for other purposes other than testing for HIV. Most of the study participants had fears of. “Satanism”. Fear of ... blood but using magic they can take more and sell….I can't trust a ...

  14. 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.

  15. [Participant research in reference to historical and dialectical materialism: a contribution to nursing research].

    Science.gov (United States)

    Oliveira, M A

    1991-07-01

    Based upon the studies of Castellanos e Salum (1988) and Egry et al (1991), the author makes a theoretical approach of the participant research as an strategy related to the dialectical and historical materialism, emphasizing its in two main lines: - the dialectical method of exposition and the process of becoming aware.

  16. Becoming Researchers: The Participation of Undergraduate and Graduate Students in Scientific Research Groups

    Science.gov (United States)

    Feldman, Allan; Divoll, Kent A.; Rogan-Klyve, Allyson

    2013-01-01

    This study sought to understand how graduate and undergraduate students learn to do science by participating in research groups. A phenomenological approach was used to illuminate the experiences of the students. The results provide evidence that the students were in the role of apprentices, although this was not made explicit. As apprentices they…

  17. Restoring balance: a consensus statement on the protection of vulnerable research participants.

    Science.gov (United States)

    DuBois, James M; Beskow, Laura; Campbell, Jean; Dugosh, Karen; Festinger, David; Hartz, Sarah; James, Rosalina; Lidz, Charles

    2012-12-01

    A diverse panel convened in June 2011 to explore a dilemma in human research: some traits may make individuals or communities particularly vulnerable to a variety of harms in research; however, well-intended efforts to protect these vulnerable individuals and communities from harm may actually generate a series of new harms. We have presented a consensus statement forged by the panel through discussion during a 2-day meeting and the article-writing process. We have identified practical problems that sometimes arise in connection with providing additional safeguards for groups labeled as vulnerable and offered recommendations on how we might better balance concerns for protection with concerns for justice and participant autonomy.

  18. Ethical Considerations in Human Movement Research.

    Science.gov (United States)

    Olivier, Steve

    1995-01-01

    Highlights ethical issues for human subject research, identifying principles that form the construct of a code of research ethics and evaluating against this construct past human experimentation and current research in human movement studies. The efficacy of legislation and self-regulation is examined. Particular attention is given to the context…

  19. Interventions to improve research participants' understanding in informed consent for research: a systematic review.

    Science.gov (United States)

    Flory, James; Emanuel, Ezekiel

    2004-10-06

    Available data suggest that prospective research participants may frequently not understand information disclosed to them in the informed consent process. Little is known about how understanding can be improved. To review research on interventions to improve research participants' understanding of information disclosed in the informed consent process. A search of MEDLINE was performed using the terms informed consent and clinical research and informed consent and (comprehension or understanding) from 1966 to March 2004 , which included randomized controlled trials, longitudinal trials, and controlled trials with nonrandom allocation that compared the understanding of research participants who had undergone only a standard informed consent process to that of participants who had received an intervention to improve their understanding. A comprehensive bibliography of empirical research on informed consent published in January 1999 was also reviewed, as were personal files and all issues of the journals IRB and Controlled Clinical Trials. Study design, quality criteria, population characteristics, interventions, and outcomes for each trial were extracted. The statistical significance of the interventions' effects on understanding were noted, as were mean scores for understanding for each group of each trial. For those trials that measured the secondary outcomes of satisfaction and willingness to enroll, results were also summarized. Thirty studies described 42 trials that met inclusion criteria. Of 12 trials of multimedia interventions, 3 showed significant improvement in understanding. Of 15 trials of enhanced consent forms, 6 showed significant improvement in understanding (all Pcasting doubt on their practical relevance. Of 5 trials of extended discussion, 3 showed significant improvement in understanding (all P<.001) and 2 showed trends toward improvement (P=.054 and P=.08). Of 5 trials of test/feedback, all showed significant improvement in understanding (all P

  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'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

  2. Researcher participation in development projects - how and why ?

    DEFF Research Database (Denmark)

    Forman, Marianne; Jørgensen, Michael Søgaard

    1999-01-01

    The need for researcher reflection on their role and their impact in development projects is discussed.......The need for researcher reflection on their role and their impact in development projects is discussed....

  3. Resisting Participation: Critiquing Participatory Research Methodologies with Young People

    Science.gov (United States)

    Fox, Rachael

    2013-01-01

    Participatory methodologies are increasingly employed in research with young people. These practices stem from a desire to reduce problematic distributions of power in research and to construct knowledge with young people rather than for them. This paper examines research conducted with a small group of young people experiencing exclusion from…

  4. Engaging Children: Research Issues around Participation and Environmental Learning

    Science.gov (United States)

    Hacking, Elisabeth Barratt; Barratt, Robert; Scott, William

    2007-01-01

    In this article we explore a number of issues arising from the papers in this special issue of "Environmental Education Research." The papers focus on current examples of childhood environment research in the UK together with research reviews from the UK, the US and Australia. In order to provide a framework for considering and…

  5. Healthcare institutions do not favor care. Meaning of humanized care for people directly participating in it

    Directory of Open Access Journals (Sweden)

    Oscar Alberto Beltrán-Salazar

    2014-07-01

    Full Text Available Objective. This study sought to understand the meaning of humanized care for those directly participating in it. Methodology. This was qualitative research with phenomenological interpretative approach conducted in Medellín, Colombia, during 2013. It included 16 participants among nurses, adult patients, and relatives. To gather the information, in-depth interviews were used; data analysis was performed manually according to the scheme proposed by Cohen, Kahn, and Stevees. Results. According to the participants, institutions do not favor humanized care due to the inaccessibility of services whose possible causes are, among others, excessive procedural red tape, lack of resources, and long waits. Additionally, they state that nurses' work overload keeps them away from the patients and prevents caring for them. Conclusion. For the participants in the study, the humanized care practice of humanized care is affected negatively, on one side, by the service offered by healthcare institutions; and, on the other, by the influence exerted upon nurses, which conditions, in turn, how care is delivered.

  6. Asking the right questions: views on genetic variation research among black and white research participants.

    Science.gov (United States)

    Bussey-Jones, Jada; Henderson, Gail; Garrett, Joanne; Moloney, Mairead; Blumenthal, Connie; Corbie-Smith, Giselle

    2009-03-01

    Genetic variation research (GVR) may raise concerns about misuse of information and discrimination. Seemingly contradictory positive views about GVR have also been reported. To dissect this inconsistency, our objectives were to: (1) explore open-ended views of GVR and (2) quantify views of and willingness to participate in GVR by race. Cross-sectional study. 801 African-American and white prior participants in a case-control genetic epidemiology study of colon cancer risks (NCCCS). Qualitative measures evaluated responses to questions about good and bad things about GVR. Quantitative measures evaluated positive and negative perceptions, perceptions of discrimination, and likelihood of future participation by race. Open-ended queries about GVR resulted in few "negative" responses. In closed-ended questions, however, African Americans were more likely to feel that such research would: result in higher insurance (41% vs. 30%, p = 0.008), not benefit minorities (29% vs. 14%, p=pigs (27% vs. 6%, p adjustment for potential confounding factors, African-American race remained inversely associated with feeling "very positive" about GVR (46% vs. 57%, p = 0.035). In contrast, African Americans were as likely as whites to express willingness to participate in future GVR studies (46%). Open-ended questions about GVR were unlikely to spontaneously generate "negative" responses. In contrast, when presented specific examples of potentially negative implications, more respondents agreed, and minorities were more likely to express concerns. This suggests that while participants appear generally positive about GVR, their inability to articulate views regarding these complex concepts may require that researchers engage lay audiences, ensure accurate understanding, and provide them with language to express concerns.

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

    African Journals Online (AJOL)

    Re-organising the cognitive structure, values and behaviour of Life Orientation teachers. According to Kurt Lewin (1942), the life space is the physical environment in ..... The participants reached consensus on what was expected from them as Life. Orientation teachers. The majority of the teachers verbalised that they must ...

  8. Mapping Frontier Research in the Humanities

    DEFF Research Database (Denmark)

    Knowledge production in academia today is burgeoning and increasingly interdisciplinary in nature. Research within the humanities is no exception: it is distributed across a variety of methodic styles of research and increasingly involves interactions with fields outside the narrow confines...... of the university. As a result, the notion of liberal arts and humanities within Western universities is undergoing profound transformations. In Mapping Frontier Research in the Humanities, the contributors explore this transformative process. What are the implications, both for the modes of research...

  9. 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…

  10. Conducting Research with Minimally Verbal Participants with Autism Spectrum Disorder

    Science.gov (United States)

    Tager-Flusberg, Helen; Plesa Skwerer, Daniela; Joseph, Robert M.; Brukilacchio, Brianna; Decker, Jessica; Eggleston, Brady; Meyer, Steven; Yoder, Anne

    2017-01-01

    A growing number of research groups are now including older minimally verbal individuals with autism spectrum disorder in their studies to encompass the full range of heterogeneity in the population. There are numerous barriers that prevent researchers from collecting high-quality data from these individuals, in part because of the challenging…

  11. The Sports Participation: From Research to Sports Policy

    OpenAIRE

    Puig Núria

    2016-01-01

    The aims of this paper are the following: 1. To provide an overview of the fundamental aspects to be taken into account when carrying out and interpreting sports participation surveys; 2. To put forward an explanation of sports behavior; and 3. To suggest how these results may be used in intervention programs. Having gone over the literature in this field, I shall go on to address the following points: the definition of sports; trend analysis or the illusion of transparency; analysis of inequ...

  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. Taking your participants home: Self care within the research process

    OpenAIRE

    McGourty, A.; Farrants, J.; Pratt, R.; Cankovic, M

    2010-01-01

    Background: On the long and often stressful road to qualifying as a Counselling Psychologist the issue of self care is addressed early within the training. Yet this idea of self care relates to therapeutic practice, with little consideration of self care during the research process. With the training route now at Doctoral level, all practitioners will undertake a significant research project as part of the qualifying portfolio. \\ud \\ud Aims and Scope: This paper explores the process issues en...

  14. 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.

  15. The Sports Participation: From Research to Sports Policy

    Directory of Open Access Journals (Sweden)

    Puig Núria

    2016-06-01

    Full Text Available The aims of this paper are the following: 1. To provide an overview of the fundamental aspects to be taken into account when carrying out and interpreting sports participation surveys; 2. To put forward an explanation of sports behavior; and 3. To suggest how these results may be used in intervention programs. Having gone over the literature in this field, I shall go on to address the following points: the definition of sports; trend analysis or the illusion of transparency; analysis of inequalities; identifying difference and individualization; and examining typologies to better understand each social group. I shall conclude with suggestions for sports policies.

  16. Older adults’ attitudes toward noncompetent subjects participating in Alzheimers research

    Science.gov (United States)

    Karlawish, Jason; Rubright, Jonathan; Casarett, David; Cary, Mark; TenHave, Thomas; Sankar, Pamela

    2008-01-01

    Objective Since research that enrolls noncompetent patients with Alzheimers disease and does not present potential benefit to subjects is the source of substantial ethical controversy, we assessed willingness to have a proxy for research decision making, and, for each of two Alzheimers disease biomarker studies (minimal risk blood draw and a greater than minimal risk blood draw and lumbar puncture), willingness to grant an advance consent, and willingness to grant a proxy leeway over advance consent. Methods Face to face survey of 538 persons 65 and over who resided in the Southeastern Pennsylvania region Results The majority 83% (445/538) granted advance consent to a blood draw study and nearly half to a blood draw plus lumbar puncture 259 (48%). Most persons (96%) were willing to identify a proxy for research decision making and most were willing to grant their proxy leeway over their advance consent: blood draw 434 (81%), and 375 (70%) blood draw plus lumbar puncture. Combining the preferences for advance consent and leeway, the proportion who would permit being enrolled in the blood draw and spinal fluid sample studies were, respectively, 92% (497/538) and 75% (404/538). Multi-variate models showed that willingness to be enrolled in research was most strongly associated with a favorable attitude about biomedical research. Conclusions Older adults generally support enrolling noncompetent persons with Alzheimers disease into research that does not present a benefit to subjects. Willingness to grant their proxy leeway over advance consent and a favorable attitude about biomedical research substantially explain this willingness. PMID:18923066

  17. Participant dropout as a function of survey length in internet-mediated university studies: implications for study design and voluntary participation in psychological research.

    Science.gov (United States)

    Hoerger, Michael

    2010-12-01

    Internet-mediated research has offered substantial advantages over traditional laboratory-based research in terms of efficiently and affordably allowing for the recruitment of large samples of participants for psychology studies. Core technical, ethical, and methodological issues have been addressed in recent years, but the important issue of participant dropout has received surprisingly little attention. Specifically, web-based psychology studies often involve undergraduates completing lengthy and time-consuming batteries of online personality questionnaires, but no known published studies to date have closely examined the natural course of participant dropout during attempted completion of these studies. The present investigation examined participant dropout among 1,963 undergraduates completing one of six web-based survey studies relatively representative of those conducted in university settings. Results indicated that 10% of participants could be expected to drop out of these studies nearly instantaneously, with an additional 2% dropping out per 100 survey items included in the study. For individual project investigators, these findings hold ramifications for study design considerations, such as conducting a priori power analyses. The present results also have broader ethical implications for understanding and improving voluntary participation in research involving human subjects. Nonetheless, the generalizability of these conclusions may be limited to studies involving similar design or survey content.

  18. 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.

  19. From patient to participant: enhancing the validity and ethics of cancer research through participatory research.

    Science.gov (United States)

    Chiu, Connie G; Mitchell, Terry L; Fitch, Margaret I

    2013-06-01

    Participatory health research involves a wide spectrum of participation from the population of study. We describe the participatory research processes of a large mixed method study on the psychosocial impact of dragon boating in individuals with breast cancer. In particular, we discuss the involvement of a Community Advisory Group (consisting of five breast cancer patients/survivors) in the development of the research study, data collection and analysis, and dissemination of the study results. We also outline the elements of a research workshop, in which 13 breast cancer patients/survivors were involved in the development of a provincial survey for the study. The purpose of this article is to share our experience of engaging cancer patients/survivors in a participatory research study. We discuss the value-based elements of participatory research (power sharing, voice and respect, reciprocity, and mutual benefit), and provide a case-based example of how these participatory elements were employed to potentially increase the validity of the survey instrument, to enhance the ethics of working with a cancer population, and ultimately contributed to a high survey response rate.

  20. 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

  1. 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…

  2. Mapping Frontier Research in the Humanities

    DEFF Research Database (Denmark)

    Knowledge production in academia today is burgeoning and increasingly interdisciplinary in nature. Research within the humanities is no exception: it is distributed across a variety of methodic styles of research and increasingly involves interactions with fields outside the narrow confines...... of the university. As a result, the notion of liberal arts and humanities within Western universities is undergoing profound transformations. In Mapping Frontier Research in the Humanities, the contributors explore this transformative process. What are the implications, both for the modes of research...... and for the organisation of the humanities and higher education?...

  3. 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.

  4. Bionic Vision, Social Work, and Community Development: A Research Participant's Reflections.

    Science.gov (United States)

    Ashworth, Dianne

    2017-11-28

    This article discusses bionic vision through the author's experiences as Australia's first research participant in an early prototype bionic eye trial. During her two-year participation, she drew on various theoretical perspectives, including critical and community development approaches that not only influence her professional social work perspective, but extend to her personal worldview. In a rapidly emerging biotechnological age, this article contributes a holistic perspective, bringing into focus theory and practice; issues of human experience, human rights, and oppressive relationships; tensions between agency and structure (particularly relating to disability from a social model of disability and the medical model); and practical applications of artificial vision. Beyond its practical applications, illuminated is the relevance of community development values and principles such as a sense of connectedness, participation, and empowerment, which are understood in terms of an antioppressive perspective. The article concludes by recognizing the potential benefit of bionic vision for vision-impaired and blind people in their everyday lives. © 2017 National Association of Social Workers.

  5. Participation of nurses in the execution of clinical research protocol about technological innovation

    Directory of Open Access Journals (Sweden)

    Luciane Patrícia Andreani Cabral

    2015-10-01

    Full Text Available AbstractOBJECTIVETo report the nurse's experience of inclusion in interdisciplinary clinical study about technological innovation, involving people with spinal cord injury.METHODDescriptive experience report. The empirical support was based on notes about perspectives and practice of clinical research, with a multi-professional nursing, physical education, physiotherapy and engineering staff.RESULTThe qualification includes the elaboration of the document for the Ethics Committee, familiarization among the members of staff and with the studied topic, and also an immersion into English. The nurse's knowledge gave support to the uptake of participants and time adequacy for data collection, preparation and assistance of the participants during the intervention and after collection. Nursing theories and processes have contributed to reveal risky diagnoses and the plan of care. It was the nurse's role to monitor the risk of overlapping methodological strictness to the human aspect. The skills for the clinical research must be the object of learning, including students in multidisciplinary researches.CONCLUSIONTo qualify the nurse for clinical research and to potentialize its caregiver essence, some changes are needed in the educational system, professional behavior, attitude and educational assistance.

  6. [Participation of nurses in the execution of clinical research protocol about technological innovation].

    Science.gov (United States)

    Cabral, Luciane Patrícia Andreani; Scheeren, Eduardo Mendonça; Cubas, Marcia Regina

    2015-10-01

    To report the nurse's experience of inclusion in interdisciplinary clinical study about technological innovation, involving people with spinal cord injury. Descriptive experience report. The empirical support was based on notes about perspectives and practice of clinical research, with a multi-professional nursing, physical education, physiotherapy and engineering staff. The qualification includes the elaboration of the document for the Ethics Committee, familiarization among the members of staff and with the studied topic, and also an immersion into English. The nurse's knowledge gave support to the uptake of participants and time adequacy for data collection, preparation and assistance of the participants during the intervention and after collection. Nursing theories and processes have contributed to reveal risky diagnoses and the plan of care. It was the nurse's role to monitor the risk of overlapping methodological strictness to the human aspect. The skills for the clinical research must be the object of learning, including students in multidisciplinary researches. To qualify the nurse for clinical research and to potentialize its caregiver essence, some changes are needed in the educational system, professional behavior, attitude and educational assistance.

  7. The Effect of Participating in Suicide Research: Does Participating in a Research Protocol on Suicide and Psychiatric Symptoms Increase Suicide Ideation and Attempts?

    Science.gov (United States)

    Smith, Phillip; Poindexter, Erin; Cukrowicz, Kelly

    2010-01-01

    The effect of engaging in an intensive research protocol that inquired extensively about psychiatric and suicide symptoms and exposed participants to a number of images, including suicide-related content was explored. Individuals experiencing a major depressive episode were called at 1 and 3 months after the initial protocol. Participants were…

  8. Family Experience in a Regional Participant Contact Registry for Research on Intellectual Disability

    Science.gov (United States)

    Conners, Frances A.; Phillips, B. Allyson; Rhodes, Jennifer D.; Hamilton, James C.

    2014-01-01

    Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather than recruiting through multiple schools or service agencies. The authors describe the development of…

  9. HUMAN CAPITAL, INEQUALITIES AND LABOUR MARKET PARTICIPATION IN ROMANIA

    Directory of Open Access Journals (Sweden)

    Ana-Maria ZAMFIR

    2016-05-01

    Full Text Available This paper aims to analyse characteristics of the labour market participation in Romania in order to highlight the existing inequalities in employment opportunities. Official statistics are analysed for providing an in-depth overview of the recent evolutions of the Romanian labour market. Special attention will be given to gender, rural-urban and age inequalities. The results show significant gaps in labour market participation for specific groups such as people living in rural areas, women and youth and high level of regional heterogeneity regarding the existing employment opportunities. The findings of the article are useful for policy makers and institutions with responsibilities in labour market and education fields.

  10. A quantitative study of attitudes toward the research participation of adults with intellectual disability: Do stakeholders agree?

    Science.gov (United States)

    McDonald, Katherine E; Conroy, Nicole E; Olick, Robert S

    2017-12-13

    Attitudes toward the research participation of adults with intellectual disability inform research policy and practice, impact interest in and support for research participation, and promote or discourage the generation of new knowledge to promote health among adults with intellectual disability. Yet we know little about these beliefs among the public and the scientific community. We quantitatively studied attitudes among adults with intellectual disability, family and friends, disability service providers, researchers, and Institutional Review Board (IRB) members. We predicted that adults with intellectual disability, and researchers would espouse views most consistent with disability rights, whereas IRB members, and to a lesser degree family, friends, and service providers, would espouse more protective views. We surveyed five hundred and twelve members of the five participant stakeholder groups on their attitudes toward the research participation of adults with intellectual disability. We found broad support for research about people with intellectual disability, though slightly more tempered support for their direct participation therein. In general, IRB members and to some extent adults with intellectual disability endorsed direct participation less than others. We also found that adults with intellectual disability strongly believed in their consent capacity. Resources should be directed toward health-related research with adults with intellectual disability, and interventions should be pursued to address ethical challenges and promote beliefs consistent with human rights. Copyright © 2017 Elsevier Inc. All rights reserved.

  11. Application of Humanized Mice in Immunological Research.

    Science.gov (United States)

    Tu, Wenwei; Zheng, Jian

    2016-01-01

    During the past decade, the development of humanized mouse models and their general applications in biomedical research greatly accelerated the translation of outcomes obtained from basic research into potential diagnostic and therapeutic strategies in clinic. In this chapter, we firstly present an overview on the history and current progress of diverse humanized mouse models and then focus on those equipped with reconstituted human immune system. The update advancement in the establishment of humanized immune system mice and their applications in the studies of the development of human immune system and the pathogenesis of multiple human immune-related diseases are intensively reviewed here, while the shortcoming and perspective of these potent tools are discussed as well. As a valuable bridge across the gap between bench work and clinical trial, progressive humanized mouse models will undoubtedly continue to play an indispensable role in the wide area of biomedical research.

  12. Mapping Frontier Research in the Humanities

    DEFF Research Database (Denmark)

    of liberal arts and humanities within Western research universities is undergoing profound transformations. This book addresses the signatures of the transformative process in the humanities and the organisation of disciplinary knowledge. Based on multidimensional methodologies for mapping knowledge...... of impact and styles of reasoning, both in classical and interdisciplinary fields of the humanities. From this perspective, a more composite picture of human culture, language and history can emerge from humanities research. It goes beyond the picture of rational agents, and situates human interaction...... in more complex landscapes of collective identities, networks, and constraints that open for new forms of intellectual leadership in the 21st century. Link: http://www.bloomsbury.com/uk/mapping-frontier-research-in-the-humanities-9781472597687/...

  13. 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.

  14. Cancer fear and fatalism: how African American participants construct the role of research subject in relation to clinical cancer research.

    Science.gov (United States)

    Somayaji, Darryl; Cloyes, Kristin Gates

    2015-01-01

    Lack of African American participation in cancer clinical trials has been identified as a critical problem. Historical interactions related to race, identity, and power may contribute to continued inequity in healthcare and research participation. The aim of this study was to explore the perceptions of African Americans regarding cancer and research and how these perceptions shape their beliefs about participating as cancer research subjects. Three African American focus groups were conducted including people who had never participated in cancer research, those who had, and those who were asked but refused (n = 16). Discussion focused on their perceptions of cancer research and actual or potential participation as research subjects. Data were coded using both structured and inductive coding methods. Fear and fatalism emerged in relation to research, race, power, and identity and were related to larger historical and social issues rather than only individual thoughts or feelings. Participants described fears of the unknown, death, mistrust, conspiracy, and discrimination together with positive/negative tensions between self, family, and community responsibilities. Complex identities linked perceptions of cancer and cancer research with broader historical and cultural issues. Fear, fatalism, and current and historical relationships influence how people perceive themselves as research subjects and may influence their decisions to participate in cancer research. Acknowledging how complex factors including race and racism contribute to health disparities may give nurses and other healthcare providers a better appreciation of how historical, social, and cultural dynamics at individual, community, and organizational levels influence access to and participation in cancer research.

  15. Community participation in research from resource-constrained countries: a scoping review.

    Science.gov (United States)

    Brear, Michelle; Hammarberg, Karin; Fisher, Jane

    2017-03-18

    Participatory health research (PHR) involves equitable community participation in all aspects of the research process. It is a potentially beneficial approach to research in resource-constrained countries. Measuring participation in specific activities and aspects is necessary for understanding the community and research-related benefits of PHR. The aims of this scoping review were to: develop a measure of lay-community participation in aspects and activities of PHR in resource-constrained countries; and use the measure to assess the nature and extent of reported participation. Directed content analysis was used to identify aspects and activities reported in peer-reviewed articles identified through a systematic search, develop the Comprehensive Community Participation in Research Framework (CCPRF) and use it to measure participation. Total and aspect participation scores, which considered both the nature and extent of participation, were calculated for articles reporting extensive participation. Eighty-five articles detailing 66 studies were included. Nine aspects and 49 activities of research were included in the CCPRF. Community participation was reported in a median of 5/9 (range 1-9) aspects and 8/49 (range 1-35) activities. The review provided diverse examples, and enabled development of a more comprehensive measure, of participation. It highlighted limited lay-community participation is reported in research labelled participatory from resource-constrained countries. As participation in all aspects of PHR is rarely achieved, strategic planning of more limited participation is imperative. More detailed and systematic planning, assessment and reporting of participation, guided by a comprehensive measure like the CCPRF, is required to develop evidence regarding the benefits of participation in various research activities. © The Author 2017. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

  16. Beneficence as a principle in human research.

    Science.gov (United States)

    Pieper, Ian; Thomson, Colin J H

    2016-06-01

    Beneficence is one of the four principles that form the basis of the Australian National Statement. The aim of this paper is to explore the philosophical development of this principle and to clarify the role that beneficence plays in contemporary discussions about human research ethics. By examining the way that guidance documents, particularly the National Statement, treats beneficence we offer guidance to researchers and human research ethics committee members on the practical application of what can be a conceptually difficult principle.

  17. Motivation, Participation, and Engagement in Human Work Interaction Design Literature

    DEFF Research Database (Denmark)

    Clemmensen, Torkil; Campos, Pedro; Abdelnour-Nocera, José

    2016-01-01

    This position paper is aimed at presenting as discussion material at the CoPDA 2016 Workshop the preliminary results of a short review of the literature published by the HWID community in the last 10 years in four books. Specifically, the attention is posed on understanding the importance of moti...... of motivation, participation, and engagement in Interaction Design projects for smart and pervasive workplaces...

  18. Gender Representation and Participation in Dutch Human Geography Departments. Symposium

    Science.gov (United States)

    Fortuijn, Joos Droogleever

    2004-01-01

    Since the beginning of the 1970s the under-representation of women in geography has been questioned in several publications. Most articles refer to the situation in English-speaking countries. This paper examines the vertical and horizontal gender segregation in human geography departments in Dutch universities. In spite of several policy measures…

  19. US Military Service Members’ Reasons for Deciding to Participate in Health Research

    Science.gov (United States)

    Cook, Wendy A.; Melvin, Kristal C.; Doorenbos, Ardith Z.

    2017-01-01

    Researchers have reported challenges in recruiting US military service members as research participants. We explored their reasons for participating. Eighteen US military service members who had participated in at least one health-related research study within the previous 3 years completed semi-structured individual interviews in person or by telephone, focused on the service members’ past decisions regarding research participation. Service members described participation decisions for 34 individual research experiences in 27 separate studies. Service members’ reasons for participation in research clustered in three themes: others-, self-, and fit-focused. Each decision included reasons characterized by at least two themes. Reasons from all three themes were apparent in two-thirds of individual participation decisions. Reasons described by at least half of the service members included a desire to make things better for others, to improve an organization, to help researchers, and to improve one’s health; understanding how they fit in studies; and convenience of participation. Findings may help researchers, study sponsors, ethicists, military leaders, and military decision-makers better understand service members’ reasons for participating in research and improve future recruitment of service members in health research. PMID:28185285

  20. US Military Service Members' Reasons for Deciding to Participate in Health Research.

    Science.gov (United States)

    Cook, Wendy A; Melvin, Kristal C; Doorenbos, Ardith Z

    2017-06-01

    Researchers have reported challenges in recruiting US military service members as research participants. We explored their reasons for participating. Eighteen US military service members who had participated in at least one health-related research study within the previous 3 years completed semi-structured individual interviews in person or by telephone, focused on the service members' past decisions regarding research participation. Service members described participation decisions for 34 individual research experiences in 27 separate studies. Service members' reasons for participation in research clustered in three themes: others-, self-, and fit-focused. Each decision included reasons characterized by at least two themes. Reasons from all three themes were apparent in two-thirds of individual participation decisions. Reasons described by at least half of the service members included a desire to make things better for others, to improve an organization, to help researchers, and to improve one's health; understanding how they fit in studies; and convenience of participation. Findings may help researchers, study sponsors, ethicists, military leaders, and military decision-makers better understand service members' reasons for participating in research and improve future recruitment of service members in health research. © 2017 Wiley Periodicals, Inc. © 2017 Wiley Periodicals, Inc.

  1. Human Immunodeficiency Virus Research Program

    Science.gov (United States)

    1993-11-30

    assessment of periodontal changes relative to Walter Reed Staging and CD4/CD8 counts, as well as other co-factors, such as smoking . Assessment of soft...Some commonly held concepts that have greatly influenced the course of HIV-1 vaccine research in the past and that are pertinent to this program are...criteria for reduced severity of disease and transmission potential using an integrated immunologic, virologic, and structural analysis of lymphoid tissues

  2. Exploring willingness of elder Chinese in Houston to participate in clinical research

    Directory of Open Access Journals (Sweden)

    Logan R. Thornton

    2016-12-01

    Conclusions: The barriers and facilitators to research participation confirmed previous research among Asians. Our participant TIMRS scores were consistent with decreased levels of trust observed in the original TIMRS study for African Americans as compared and lower than Whites. Employing strategies that utilize language concordant staff who build trust with participants may aid in recruiting elder Chinese, especially if the research is personally relevant to those being recruited.

  3. Research Award: Ecosystems and Human Health (Ecohealth ...

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

    Jean-Claude Dumais

    Research Award: Ecosystems and Human Health (Ecohealth). Deadline: 12 September 2012. Please note that all applications must be sent electronically. IDRC's Research Awards are a unique opportunity for master's and doctoral-level students, as well as recent graduates to enhance their research skills and gain a fresh ...

  4. Unfolding Participation

    DEFF Research Database (Denmark)

    Saad-Sulonen, Joanna; Halskov, Kim; Eriksson, Eva

    2015-01-01

    The aim of the Unfolding Participation workshop is to outline an agenda for the next 10 years of participatory design (PD) and participatory human computer interaction (HCI) research. We will do that through a double strategy: 1) by critically interrogating the concept of participation (unfolding...... the concept itself), while at the same time, 2) reflecting on the way that participation unfolds across different participatory configurations. We invite researchers and practitioners from PD and HCI and fields in which information technology mediated participation is embedded (e.g. in political studies......, urban planning, participatory arts, business, science and technology studies) to bring a plurality of perspectives and expertise related to participation....

  5. Poetry and Participation: Scripting a Meaningful Research Text With Rape Crisis Workers

    National Research Council Canada - National Science Library

    Rath, Jean

    2012-01-01

    .... In moving between context and methods, research generated poetry, participants' responses and preferences, and discussion of textual presences, the layered text format invites the reader to develop...

  6. CIRTification: Training in Human Research Protections for Community-Engaged Research Partners.

    Science.gov (United States)

    Anderson, Emily E

    2015-01-01

    Human research ethics training should provide relevant, meaningful information and build skills. Compliance should not be the only goal; training should also enhance knowledge, skills, and capacity. However, most currently available human research ethics training programs are geared toward learners who already have some research experience and working knowledge of research methods (e.g., graduate students, junior researchers); many community partners, however, have little or no prior exposure to research. More important, standard training programs do not adequately address the unique context of community-engaged research (CEnR). This article describes the development process, final curricular materials, and suggestions for successful implementation of CIRTification, a human research ethics training program designed specifically for community research partners who will be working on the "frontlines" of research. Development of CIRTification involved an extensive literature review, consultation with stakeholders including community partners, academic researchers, and human research protection program personnel. The curriculum, as well as information and materials to help potential users promote acceptance of the curriculum by their local institutional review boards (IRBs), are freely available online at www.go.uic.edu/CIRT. Ideally, community research partners who complete CIRTification will not only learn about the importance of protecting research participants but also be empowered to substantially contribute to the ethical practices of their respective research collaborations.

  7. Appealing to altruism is not enough: motivators for participating in health services research.

    Science.gov (United States)

    Hunter, Jennifer; Corcoran, Katherine; Leeder, Stephen; Phelps, Kerryn

    2012-07-01

    This pilot study sought to identify motivators and barriers to participating in a longitudinal survey; we interviewed patients and practitioners at a multidisciplinary primary care clinic where the proposed project would be based. While altruism motivates participation in medical research, we found that for many potential participants, the opportunity to benefit directly was the primary, and sometimes the only motive to participate or encourage participation in the research project. Patients often wanted direct feedback from their individual results, and they expected to provide consent before the results were forwarded to other parties such as their practitioners. Similarly, some practitioners were more likely to support the project if participation benefited patients directly. Other factors were also identified that influenced the acceptability and perceived risks and benefits of participating. More work is needed to understand these motivators and how patients might benefit directly from participating in health services research, especially when direct medical benefit is not possible.

  8. Developing Changes in Our Reading of the World: A Pedagogical Proposal from Participative Action Research

    Directory of Open Access Journals (Sweden)

    Simona Trovato-Apollaro

    2017-04-01

    Full Text Available This paper presents the results of a research conducted with the group Women of Theater from Alajuelita. The research intended to answer the question of how to develop changes in our reading of the world. The goal of our study was the co-researchers’ raising awareness process leading them, from themselves, and by means of the abovementioned group, to read, interpret and reconstruct the environment in order to yield transformations in their lives and community. Through reflection, the process was investigated on the basis of the pedagogical practices of Augusto Boal´s Theater of Oppressed (Boal, 1980, as they were applied at the theater workshop together with the group of Women of Theather, at the library of the Educative Center Los Pinos in Alajuelita. The main elements of the implemented methodology respond to the Participative Action Research (PAR, where the dialectical participative relationship and the collective discussion make it possible the creation of learning. We used audio recordings as data collection tools, which were later systematized for their analysis. The paradigmatic position assumed was inspired by an approach related to the concept of complexity. This concept proposes a holistic view of reality, life, and, so, of pedagogy. According to such a view, we all are one, and the multiplicity is interconnected with each one of its parts, in continuous entropy. Under this approach, where the world is a system of systems interconnected among themselves, the main finding was to perceive pedagogy as an instrument for humanization, a magical object capable of valuing diversity and transforming our thoughts, life styles and values, and, in consequence, our reading of the world. We considered that such an important finding might help to develop changes in human beings and might inspire us to assume an ecological perspective towards relationships. Such a perspective might give rise to deep transformations in our social, political and

  9. Leaving the Nest: The Evolution of CHRPP (the Course of Human Participant Protection) | Quitter le nid : l’évolution du cours d’éthique sur la protection des participants humains

    National Research Council Canada - National Science Library

    Stockley, Denise; Balkwill, Laura-Lee; Hoessler, Carolyn

    2016-01-01

    Four years ago [Institution Name] University launched an online tutorial called CHRPP, the Course in Human Research Participant Protection, and published a paper based about its purpose, design, and usability in (Authors, 2009...

  10. Creating Knowledge: Breaking the Monopoly; Research Methods, Participation, and Development. Working Paper No. 1.

    Science.gov (United States)

    Hall, Budd L.

    Combining community participation in decision making with methods of social investigation, participatory research focuses on involvement of the subjects of the research in the research process. Adult educators are exploring this research method which, unlike quantitative research, serves the needs of individuals and not those of policy makers who…

  11. Is Informed Consent Necessary for Research on Stored Human Samples?

    Directory of Open Access Journals (Sweden)

    Lawrence Fred Sembajwe

    2016-06-01

    Full Text Available Informed consent is always required before patients can be treated in health centers as well as participating in any kind of research. This requirement often poses a serious challenge to researchers in situations where existing guidelines are not clear about the ownership of donated or discarded human biological samples in hospital archives. The current regulations demand that when doing research, the major bioethical principles of autonomy, beneficence, non-maleficence and justice should always be respected and adhered to. There is increased value of stored biomaterials due to advancement in biotechnology which has also contributed to increased debate on whether researchers should seek informed consent from the individual donors before such materials can be used for research. In enforcing these bioethical principles, most guidelines focus on research involving direct contact with human beings, and no much attention is given to stored or discarded body parts and biomaterials that end up being used for research in later years. There are some hypotheses that can be tested by doing research on the stored biological samples, especially by students or scientists attached to various University hospitals, research-centers and laboratories. We attempt to provide some scenarios and reviewed guidelines that can help provide a consensus as to whether it is strictly necessary to have informed consent for research on stored or discarded human body parts and who should claim ownership of collected human biomaterials for research or potential commercial purposes. [Archives Medical Review Journal 2016; 25(2.000: 119-128

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

    Directory of Open Access Journals (Sweden)

    Armour C

    2007-06-01

    Full Text Available In order for community pharmacy practice to continue to evolve, pharmacy practice research on potential new services is essential. This requires the active participation of community pharmacists. At present the level of involvement of community pharmacists in pharmacy practice research is minimal. Objectives: To ascertain the attitudes of a group of research-experienced community pharmacists towards participating in research; to investigate the barriers and facilitators to participation; to identify potential strategies to increase the involvement of community pharmacists in research. Methods: A focus group was conducted with a purposive sample of 11 research-experienced community pharmacists. A pharmacist academic moderated the focus group using a semi-structured interview guide. The participants were asked about their attitudes towards research, previous involvement in research, barriers to their involvement and strategies to overcome these barriers. The session was audio-taped and notes were taken by an observer. Thematic analysis of the notes and audio-tape transcripts was conducted.Results: Three themes emerged around pharmacists’ attitudes towards research: pharmacists’ perception of the purpose of research, pharmacists’ motivation for involvement in research, and pharmacists’ desired role in research. Barriers to research participation were grouped into four themes: pharmacists’ mindset, communication, infrastructure (time, money and staff, and skills/knowledge. Strategies to address each of these barriers were suggested.Conclusions: Participants recognised the importance of research towards advancing their profession and this was a motivating factor for involvement in research. They perceived their role in research primarily as data collection. A series of practical strategies to overcome the barriers to participation were offered that researchers may wish to consider when promoting research outcomes and designing research

  13. Research Article (Human Resources for Health) Postoperative ...

    African Journals Online (AJOL)

    :17. Research Article (Human Resources for Health). Postoperative outcome of caesarean sections and other major emergency obstetric surgery by clinical officers and medical officers in Malawi. Garvey Chilopora1, Caetano Pereira2,3, ...

  14. Fruit Flies Help Human Sleep Research

    Science.gov (United States)

    Skip Navigation Bar Home Current Issue Past Issues Fruit Flies Help Human Sleep Research Past Issues / Summer ... courtesy of NIGMS Neuroscientist Chiara Cirelli uses experimental fruit flies to study sleep. Although it may be ...

  15. Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials.

    Science.gov (United States)

    Braunstein, Joel B; Sherber, Noëlle S; Schulman, Steven P; Ding, Eric L; Powe, Neil R

    2008-01-01

    Minority underrepresentation exists in medical research including cardiovascular clinical trials, but the hypothesis that this relates to distrust in medical researchers is unproven. Therefore, we examined whether African American persons differ from white persons in perceptions of the risks/benefits of trial participation and distrust toward medical researchers, and whether these factors influence willingness to participate (WTP) in a clinical drug trial. Participants were self-administered a survey regarding WTP in a cardiovascular drug trial given to 1440 randomly selected patients from 13 Maryland outpatient cardiology and general medicine clinics. Patients reported their WTP, rated their perceived chances of experiencing health benefit and harm, and rated their distrust toward researchers. Of eligible participants, 70% responded, and 717 individuals were included: 36% African American and 64% white. African American participants possessed lower WTP than white participants (27% vs. 39%, p = 0.001) and had higher mean distrust scores than whites (p pigs without their consent (72% vs. 49%, p adjustment for potential mediating factors of racial differences in medical researcher distrust and perceived risk of harm (explanatory model OR, 0.84; 95% CI 0.54-1.30). In summary, African American participants expressed markedly greater concerns about experiencing harm from participation in clinical trials and distrust toward medical researchers than white participants. These factors, in turn, appear to explain much of the resistance among African American persons to participate in clinical trials compared to white persons.

  16. Development of the Good Health Research Practice course: ensuring quality across all health research in humans.

    Science.gov (United States)

    Henley, Patricia; Elango, Varalakshmi; Horstick, Olaf; Ahmad, Riris Andono; Maure, Christine; Launois, Pascal; Merle, Corinne; Nabieva, Jamila; Mahendradhata, Yodi

    2017-03-31

    Quality and ethics need to be embedded into all areas of research with human participants. Good Clinical Practice (GCP) guidelines are international ethical and scientific quality standards for designing, conducting, recording and reporting trials involving human participants. Compliance with GCP is expected to provide public assurance that the rights, safety and wellbeing of participants are protected and that the clinical research data are credible. However, whilst GCP guidelines, particularly their principles, are recommended across all research types, it is difficult for non-clinical trial research to fit in with the exacting requirements of GCP. There is therefore a need for guidance that allows health researchers to adhere to the principles of GCP, which will improve the quality and ethical conduct of all research involving human participants. These concerns have led to the development of the Good Health Research Practice (GHRP) course. Its goal is to ensure that research is conducted to the highest possible standards, similar to the conduct of trials to GCP. The GHRP course provides training and guidance to ensure quality and ethical conduct across all health-related research. The GHRP course has been run so far on eight occasions. Feedback from delegates has been overwhelmingly positive, with most delegates stating that the course was useful in developing their research protocols and documents. Whilst most training in research starts with a guideline, GHRP has started with a course and the experience gained over running the courses will be used to write a standardised guideline for the conduct of health-related research outside the realm of clinical trials, so that researchers, funders and ethics committees do not try to fit non-trials into clinical trials standards.

  17. Educational Research: The Importance of the Humanities

    Science.gov (United States)

    Smith, Richard

    2015-01-01

    It is one sign of the lack of understanding of the value of the humanities, to educational research and inquiry as well as to our world more widely, that such justifications of them as are offered frequently take a crudely instrumental form. The humanities (which in this essay are not distinguished from the arts) are welcomed insofar as they are…

  18. Research Award: Ecosystems and Human Health (Ecohealth)

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

    Corey Piccioni

    2013-08-07

    Aug 7, 2013 ... IDRC's Ecosystems and Human Health (Ecohealth) program explores the links between human health and well‐being and producve and sustainable ecosystems. Read more about past and current projects funded by the Ecohealth program. As a transdiciplinary and applied research approach, ecohealth ...

  19. Governing the postmortem procurement of human body material for research.

    Science.gov (United States)

    Van Assche, Kristof; Capitaine, Laura; Pennings, Guido; Sterckx, Sigrid

    2015-03-01

    Human body material removed post mortem is a particularly valuable resource for research. Considering the efforts that are currently being made to study the biochemical processes and possible genetic causes that underlie cancer and cardiovascular and neurodegenerative diseases, it is likely that this type of research will continue to gain in importance. However, post mortem procurement of human body material for research raises specific ethical concerns, more in particular with regard to the consent of the research participant. In this paper, we attempt to determine which consent regime should govern the post mortem procurement of body material for research. In order to do so, we assess the various arguments that could be put forward in support of a duty to make body material available for research purposes after death. We argue that this duty does in practice not support conscription but is sufficiently strong to defend a policy of presumed rather than explicit consent.

  20. Research on disaster prevention by human factor

    Energy Technology Data Exchange (ETDEWEB)

    Kim, Bok Youn; Kang, Chang Hee; Kang, Sun Duck; Jo, Young Do [Korea Institute of Geology Mining and Materials, Taejon (Korea)

    1998-12-01

    Mining, by its very nature, requires workers and technology to function in an unpredictable environment that can not easily be engineered to accommodate human factors. Miners' physical and cognitive capabilities are sometimes stretched to the point that 'human error' in performance result. Mine safety researchers estimate that 50-85% of all mining injuries are due, in large part, to human error. Further research suggests that the primary causes of these errors in performance lie outside the individual and can be minimized by improvements in equipment design, work environments, work procedures and training. The human factors research is providing the science needed to determine which aspects of the mining environment can be made more worker-friendly and how miners can work more safely in environments that can not be improved. Underground mines have long been recognized as an innately hazardous and physically demanding work environment. Recently, mining is becoming a more complicated process as more sophisticated technologies are introduced. The more complicated or difficult the tasks to be performed, the more critical it is to have a systematic understanding of the humans, the technology, the environments, and how they interact. Human factors is a key component in solving most of today's mine safety and health problems. Human factors research primarily centered around solving problems in the following four areas: 1) How mining methods and equipment affect safety, 2) Evaluating the fit between miner's physical capabilities and the demands of their job, 3) Improving miner's ability to perceive and react to hazards, 4) Understanding how organizational and managerial variables influence safety. Human factor research was begun during the World war II. National Coal Board (British Coal) of Great Britain commenced ergonomics in 1969, and Bureau of Mine of United States started human factor researches in same year. Japan has very short history

  1. Participation in Undergraduate Research and the Development of Political Science Students.

    Science.gov (United States)

    Ishiyama, John

    Despite interest in the impact of undergraduate research on student development in higher education literature, there has not been much work done on the relationship between participation in undergraduate research and the development of political science students. This paper assesses the relationship between student participation in collaborative…

  2. Females and Males as Participants in School Psychology Research: Data from Four Journals over 15 Years.

    Science.gov (United States)

    Holverstott, Katherine M.; Ehrhardt, Kristal E.; Parish, Trisha; Ervin, Ruth; Jennings, Lanai; Poling, Alan

    2002-01-01

    The failure of many school psychology research articles to specify the sex of participants is a potentially serious problem. Without this information, one cannot ascertain to whom results should generalize or whether the sex of participants affects the variable under investigation. It is recommended that researchers routinely specify how many of…

  3. Action Research to Encourage Pupils' Active Participation in the Sustainable School

    Science.gov (United States)

    Katsenou, Christina; Flogaitis, Evgenia; Liarakou, Georgia

    2015-01-01

    This article aims to explore the contribution of action research to the development of active participation of pupils in the context of the sustainable school. Action research is looked at not simply as a methodological tool for the exploration of participation, but as a key element of the educational actions that promote the active participation…

  4. How do French GPs consider participating in primary care research: the DRIM study.

    Science.gov (United States)

    Supper, Irène; Ecochard, René; Bois, Christophe; Paumier, Françoise; Bez, Nicole; Letrilliart, Laurent

    2011-04-01

    Recruiting GPs is an issue faced by most research teams in primary care. To assess GPs' willingness and expectations with regard to research in French primary care and to identify factors that may increase their participation in research projects. Cross-sectional study conducted with a representative sample of 452 GPs from the Rhone-Alpes region in France. Among 284 GPs (63%) who participated, 85 [29.9%, 95% confidence interval (CI) = 26.4-35.3%] were willing to participate in research as investigators and 83 (29.2%, 95% CI: 23.9-34.5%) had already participated in research projects. Multivariate analysis showed that an earlier participation in research projects [odds ratio (OR) = 3.3], a training practice (OR = 2.3), membership in a research network (OR = 2.1) and younger age (OR = 1.9 for 10 years less) were associated with the willingness to participate in future research projects. Whereas 55% of practitioners who already had an experience in research had participated in a therapeutic trial, those willing to participate in the future preferred to participate in descriptive (26%) or etiologic (22%) studies. Preventive, diagnostic and therapeutic procedures and quality of care were the domains, which interested GPs most. The most expected clinical themes concerned cardiovascular, metabolic, musculoskeletal and respiratory problems. To meet the expectations of French GPs willing to participate in primary care research, it is advisable to diversify studies with respect to their types, domains and themes. Linkage to universities and research networks should also be encouraged.

  5. 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.

  6. Human ASPM participates in spindle organisation, spindle orientation and cytokinesis.

    Science.gov (United States)

    Higgins, Julie; Midgley, Carol; Bergh, Anna-Maria; Bell, Sandra M; Askham, Jonathan M; Roberts, Emma; Binns, Ruth K; Sharif, Saghira M; Bennett, Christopher; Glover, David M; Woods, C Geoffrey; Morrison, Ewan E; Bond, Jacquelyn

    2010-11-02

    Mutations in the Abnormal Spindle Microcephaly related gene (ASPM) are the commonest cause of autosomal recessive primary microcephaly (MCPH) a disorder characterised by a small brain and associated mental retardation. ASPM encodes a mitotic spindle pole associated protein. It is suggested that the MCPH phenotype arises from proliferation defects in neural progenitor cells (NPC). We show that ASPM is a microtubule minus end-associated protein that is recruited in a microtubule-dependent manner to the pericentriolar matrix (PCM) at the spindle poles during mitosis. ASPM siRNA reduces ASPM protein at the spindle poles in cultured U2OS cells and severely perturbs a number of aspects of mitosis, including the orientation of the mitotic spindle, the main determinant of developmental asymmetrical cell division. The majority of ASPM depleted mitotic cells fail to complete cytokinesis. In MCPH patient fibroblasts we show that a pathogenic ASPM splice site mutation results in the expression of a novel variant protein lacking a tripeptide motif, a minimal alteration that correlates with a dramatic decrease in ASPM spindle pole localisation. Moreover, expression of dominant-negative ASPM C-terminal fragments cause severe spindle assembly defects and cytokinesis failure in cultured cells. These observations indicate that ASPM participates in spindle organisation, spindle positioning and cytokinesis in all dividing cells and that the extreme C-terminus of the protein is required for ASPM localisation and function. Our data supports the hypothesis that the MCPH phenotype caused by ASPM mutation is a consequence of mitotic aberrations during neurogenesis. We propose the effects of ASPM mutation are tolerated in somatic cells but have profound consequences for the symmetrical division of NPCs, due to the unusual morphology of these cells. This antagonises the early expansion of the progenitor pool that underpins cortical neurogenesis, causing the MCPH phenotype.

  7. Human ASPM participates in spindle organisation, spindle orientation and cytokinesis

    Directory of Open Access Journals (Sweden)

    Woods C Geoffrey

    2010-11-01

    Full Text Available Abstract Background Mutations in the Abnormal Spindle Microcephaly related gene (ASPM are the commonest cause of autosomal recessive primary microcephaly (MCPH a disorder characterised by a small brain and associated mental retardation. ASPM encodes a mitotic spindle pole associated protein. It is suggested that the MCPH phenotype arises from proliferation defects in neural progenitor cells (NPC. Results We show that ASPM is a microtubule minus end-associated protein that is recruited in a microtubule-dependent manner to the pericentriolar matrix (PCM at the spindle poles during mitosis. ASPM siRNA reduces ASPM protein at the spindle poles in cultured U2OS cells and severely perturbs a number of aspects of mitosis, including the orientation of the mitotic spindle, the main determinant of developmental asymmetrical cell division. The majority of ASPM depleted mitotic cells fail to complete cytokinesis. In MCPH patient fibroblasts we show that a pathogenic ASPM splice site mutation results in the expression of a novel variant protein lacking a tripeptide motif, a minimal alteration that correlates with a dramatic decrease in ASPM spindle pole localisation. Moreover, expression of dominant-negative ASPM C-terminal fragments cause severe spindle assembly defects and cytokinesis failure in cultured cells. Conclusions These observations indicate that ASPM participates in spindle organisation, spindle positioning and cytokinesis in all dividing cells and that the extreme C-terminus of the protein is required for ASPM localisation and function. Our data supports the hypothesis that the MCPH phenotype caused by ASPM mutation is a consequence of mitotic aberrations during neurogenesis. We propose the effects of ASPM mutation are tolerated in somatic cells but have profound consequences for the symmetrical division of NPCs, due to the unusual morphology of these cells. This antagonises the early expansion of the progenitor pool that underpins cortical

  8. Pathology as the enabler of human research.

    Science.gov (United States)

    Crawford, James M; Tykocinski, Mark L

    2005-09-01

    Academic Pathology is a key player in human molecular science and in the powerful initiatives of the National Institutes of Health. Pathologists generate data crucial to virtually every molecular study of human tissue, and have the necessary skills and authority to oversee processing of human tissues for research analysis. We advocate that Academic Pathology is optimally positioned to drive the molecular revolution in study of human disease, through human tissue collection, analysis, and databasing. This can be achieved through playing a major role in human tissue procurement and management; establishing high-quality 'Pathology Resource Laboratories'; providing the scientific expertise for pathology data sharing; and recruiting and training physician scientists. Pathology should position itself to be the local institutional driver of technology implementation and development, by operating the resource laboratories, providing the expertise for technical and conceptual design of research projects, maintaining the databases that link molecular and morphological information on human tissues with the requisite clinical databases, providing education and mentorship of technology users, and nurturing new research through the development of preliminary data. We also consider that outstanding pathology journals are available for the publication of research emanating from such studies, to the benefit of the pathology profession as an academic enterprise. It is our earnest hope that Academic Pathology can play a leading role in the remarkable advances to be made as the 21st century unfolds.

  9. Human Experimentation: Impact on Health Education Research.

    Science.gov (United States)

    Vacalis, T. Demetri; Griffis, Kathleen

    1980-01-01

    The problems of the use of humans as subjects of medical research and the protection of their rights are discussed. Issues include the use of informed consent, the evaluation of risks and benefits, and the review of research plans by a committee. (JD)

  10. Mapping Frontier Research in the Humanities

    DEFF Research Database (Denmark)

    Knowledge production in academia today is burgeoning and increasingly interdisciplinary in nature. Research within the humanities is no exception: it is distributed across a variety of methodic styles of research and increasingly involves interactions with fields outside the narrow confines of th...

  11. Privacy Impact Assessment for the Medical and Research Study Records of Human Volunteers

    Science.gov (United States)

    The Medical & Research Study Records of Human Volunteers System collects demographic and medical information on subjects who participate in research. Learn how this data is collected, used, access to the data, and the purpose of data collection.

  12. 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.

  13. Sharing the Knowledge: Sharing Aggregate Genomic Findings with Research Participants in Developing Countries.

    Science.gov (United States)

    Kerasidou, Angeliki

    2015-12-01

    Returning research results to participants is recognised as an obligation that researchers should always try to fulfil. But can we ascribe the same obligation to researchers who conduct genomics research producing only aggregated findings? And what about genomics research conducted in developing countries? This paper considers Beskow's et al. argument that aggregated findings should also be returned to research participants. This recommendation is examined in the context of genomics research conducted in developing countries. The risks and benefits of attempting such an exercise are identified, and suggestions on ways to avoid some of the challenges are proposed. I argue that disseminating the findings of genomic research to participating communities should be seen as sharing knowledge rather than returning results. Calling the dissemination of aggregate, population level information returning results can be confusing and misleading as participants might expect to receive individual level information. Talking about sharing knowledge is a more appropriate way of expressing and communicating the outcome of population genomic research. Considering the knowledge produced by genomics research a worthwhile output that should be shared with the participants and approaching the exercise as a 'sharing of knowledge', could help mitigate the risks of unrealistic expectations and misunderstanding of findings, whilst promoting trusting and long lasting relationships with the participating communities. © 2014 The Authors. Developing World Bioethics published by John Wiley & Sons Ltd.

  14. Let's Get Healthy! Health awareness through public participation in an education and research exhibit.

    Science.gov (United States)

    Marriott, Lisa K; Cameron, William E; Purnell, Jonathan Q; Cetola, Stephano; Ito, Matthew K; Williams, Craig D; Newcomb, Kenneth C; Randall, Joan A; Messenger, Wyatt B; Lipus, Adam C; Shannon, Jackilen

    2012-01-01

    Health information technology (HIT) offers a resource for public empowerment through tailored information. Use interactive community health events to improve awareness of chronic disease risk factors while collecting data to improve health. Let's Get Healthy! is an education and research program in which participants visit interactive research stations to learn about their own health (diet, body composition, blood chemistry). HIT enables computerized data collection that presents participants with immediate results and tailored educational feedback. An anonymous wristband number links collected data in a population database. RESULTS AND LESSONS LEARNED: Communities tailor events to meet community health needs with volunteers trained to conduct research. Participants experience being a research participant and contribute to an anonymous population database for both traditional research purposes and open-source community use. By integrating HIT with community involvement, health fairs become an interactive method for engaging communities in research and raising health awareness.

  15. 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.

  16. Research report on human media; Human media no chosa kenkyu hokokusho

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1996-03-01

    The human multimedia technology corresponding to users` subjective characteristics was researched to realize information environment producing a sense of unity with human. The human media technology realizes a human sensitive information processing model and a common database easily acceptable sensitively by various users. This technology also should be able to fairly accept and transmit individual`s information and knowledge as multimedia information, and in addition it is required to supply a virtual space with presence. In fiscal 1995, the research committee studied the concrete developmental issue for integrating these advanced fundamental technologies, and as practical images planned the prototype systems such as human media interactive plant operation, supply of environment supporting personal intelligent activities, and virtual medical center. The research committee also discussed development of space mobile media to secure energy-saving and safety of automobiles, and an environment simulation system with participation of many people. 34 figs., 2 tabs.

  17. Is sport participation an investment in human capital or a consumption of leasure time?

    OpenAIRE

    Smrčková, Hana Marie

    2012-01-01

    Students who participated in athletics are estimated to receive 20% better grades than their non-athletes colleagues. These findings suggest that athletic participation may enhance the development of motivation, competitive spirit, confidence, discipline and team spirit. Sport participation seems to be a form of human capital investments. We can see stronger effect of individual than collective sport participation. Based on these findings we can assume that wage premium for athletes, as previ...

  18. 10th IAEA Technical Meeting on Control, Data Acquisition and Remote Participation for Fusion Research

    Energy Technology Data Exchange (ETDEWEB)

    Winter, Axel, E-mail: axel.winter@iter.org

    2016-11-15

    The 10th Technical Meeting on Control, Data Acquisition, and Remote Participation for Fusion Research was held April 20–24, 2015. It was hosted this year by the Institute of Plasma Research, in Ahmedabad, India. This biennial conference has been a venue for sharing ideas and results since 1997. This year's conference focused on new developments and perspectives in the areas of control, data acquisition, and remote participation for nuclear fusion research around the world.

  19. Community-based research decision-making: Experiences and factors affecting participation

    Directory of Open Access Journals (Sweden)

    Vivien Runnels

    2013-09-01

    Full Text Available From the post World War II period through to the present, scientific research and policy has increasingly reflected acceptance and implementation of a view that public interests are better served through public participation. Built on principles of democratic participation, community-based research (CBR can produce new knowledge through the integration of knowledge of community members’ lived experience with the scientific and technical knowledge of academics. Although community-based research has experienced considerable recent attention as an approach to knowledge production, a specific focus on the participation of community members in decision-making or governance of CBR is sparse. To assist in understanding governance of CBR in Canada and the nature and extent of public participation, we conducted an interview-based qualitative study with 54 respondents. Arnstein’s (1969 theory of participation was used as the theoretical orientation. Respondents’ experiences showed their participation in governance was generally organised through four groups of factors that modified participation: pre-existing conditions, arrangements of governance, actions of academic actors, and actions of community actors. Although community members’ participation in governance was largely contingent on the arrangements, structures and actions controlled or formulated by academics, and despite their relatively limited access to and engagement with real decision-making power, in general community members’ participation was satisfactory to them. However, the highest level of participation that Arnstein envisaged was rarely attained. Awareness of theory and practice of participation in research decision-making can help research decision-makers put in place the conditions and means for realising democratic goals and knowledge co-production. Keywords: governance, decision-making, community-based research, public participation, Arnstein

  20. Reasons for and reservations about research participation in acutely injured adults.

    Science.gov (United States)

    Irani, Elliane; Richmond, Therese S

    2015-03-01

    The purpose of this study was to explore the reasons adult patients seeking emergency department care for minor injuries agree to participate in clinical research and to identify their reservations about participating in a research study. This is a secondary analysis of data from a longitudinal cohort study of 275 adults who sought emergency department care for physical injury and were followed over 12 months. At the final interview, participants were asked open-ended short-answer questions about their perception of participating in the study. Free text responses were analyzed using conventional content analysis. The final sample of 214 participants was composed equally of males and females, predominantly Black (54%) and White (42%), with a mean age of 41 years. Six themes about reasons for participation emerged from free text responses: being asked, altruism, potential for personal benefit, financial gain, curiosity, and valuing or knowledge of research. Most did not report reservations. Those reservations identified included time constraints, confidentiality, and whether patients felt well suited to fulfill the study requirements. Although injured patients are identified by the research community as vulnerable, they are willing to participate in research studies for diverse reasons, and their participation is commonly associated with positive experiences. Understanding perceptions of participants' experiences of being in a research study after acute injury can guide researchers to improve future study protocols and recruitment strategies in order to optimize participants' experiences. Recruitment and retention into clinical research studies is essential to build nursing science to enhance the recovery of injured individuals. © 2015 Sigma Theta Tau International.

  1. [Research on humans suffering from dementia].

    Science.gov (United States)

    Helmchen, H

    2015-09-01

    The urgent necessity for dementia research is justified by the prevalence and increase in dementia associated with the demographic changes, for which no causal treatment is available; however, during the progressive course dementia destroys the capacity for self-determination of persons affected and thereby an essential prerequisite for participation in research, i.e. a valid consent to a research intervention. Accordingly, not only sufficient information about all issues which are relevant for decision making by potential participants but also a flawless assessment of the capacity to consent are important; however, currently this is not satisfactorily possible. This article attempts to answer questions associated with these problems, such as how consent can be established, including that of a surrogate for consent of potential research participants by whom consent is no longer possible. In a second section the benefit-risk evaluation, which is also underdeveloped, will be dealt with using two concrete research examples, a diagnostic and a therapeutic research intervention for patients with dementia.

  2. 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.”

  3. 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.

  4. 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.

  5. Humanized mice for HIV and AIDS research.

    Science.gov (United States)

    Victor Garcia, J

    2016-08-01

    HIV has a very limited species tropism that prevents the use of most conventional small animal models for AIDS research. The in vivo analysis of HIV/AIDS has benefited extensively from novel chimeric animal models that accurately recapitulate key aspects of the human condition. Specifically, immunodeficient mice that are systemically repopulated with human hematolymphoid cells offer a viable alternative for the study of a multitude of highly relevant aspects of HIV replication, pathogenesis, therapy, transmission, prevention, and eradication. This article summarizes some of the multiple contributions that humanized mouse models of HIV infection have made to the field of AIDS research. These models have proven to be highly informative and hold great potential for accelerating multiple aspects of HIV research in the future. Copyright © 2016 Elsevier B.V. All rights reserved.

  6. 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.

  7. Research participants' perceptions and views on consent for biobank research: a review of empirical data and ethical analysis.

    Science.gov (United States)

    D'Abramo, Flavio; Schildmann, Jan; Vollmann, Jochen

    2015-09-09

    Appropriate information and consent has been one of the most intensely discussed topics within the context of biobank research. In parallel to the normative debate, many socio-empirical studies have been conducted to gather experiences, preferences and views of patients, healthy research participants and further stakeholders. However, there is scarcity of literature which connects the normative debate about justifications for different consent models with findings gained in empirical research. In this paper we discuss findings of a limited review of socio-empirical research on patients' and healthy research participants' experiences and views regarding consent to biobank research in light of ethical principles for appropriate information and consent. Review question: Which empirical data are available on research participants' perceptions and views regarding information and elicitation of consent for biobank research? Search of articles published till March 1st 2014 in Pubmed. Review of abstracts and potentially relevant full text articles by two authors independently. As categories for content analysis we defined (i) understanding or recall of information, (ii) preferences regarding information or consent, and (iii) research participants' concerns. The search in Pubmed yielded 337 abstracts of which 10 articles were included in this study. Approaches to information and consent varied considerably across the selected studies. The majority of research participants opted for some version of limited consent when being informed about such possibility. Among the factors influencing the type of preferred consent were information about sponsoring of biobank research by pharmaceutical industry and participants' trade-off between privacy and perceived utility. Studies investigating research participants' understanding and recall regarding the consent procedure indicated considerable lack of both aspects. Research participants' perceptions of benefits and harms differ across

  8. 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

  9. Community and research staff collaboration for development of materials to inform microbicide study participants in Africa.

    Science.gov (United States)

    Woodsong, Cynthia; Mutsambi, John Michael; Ntshele, Smangalisa; Modikoe, Peggy

    2014-01-01

    Clinical trials of new vaginal products require careful communication with participants about trial requirements. Most microbicide trials have been multi-site studies conducted among women in sub-Saharan Africa, where literacy levels and understanding of scientific methods differ from those designing and conducting the trials. Microbicide trials require women to insert objects in their vagina and ensure they are present in the vagina during sex. For many women, this is a novel behaviour. These behaviours take place within the context of clinical trial participation, which is an additional novelty. Research teams must develop informational materials to help participants understand the clinical trial and input from local research staff and community members can improve the content and format of these materials. This paper discusses the development of illustrated materials developed for microbicide trial participants, presenting examples from two studies. In both studies, research staff and community advisory groups collaborated to review and revise materials. Collaborative efforts revealed insights about how to convey information about clinical trial participation and microbicide use. These insights highlighted realities of the local context, details that might be misunderstood, illustrations of a sensitive nature and concerns about blood testing. In particular, information about blood testing and product use instructions required careful consideration. Although the research team anticipated needing advice on how best to convey information on these topics to participants, some aspects of potential participant concerns about these topics were also new to the research team. Community advisors and local research staff suggested better ways to convey this information, and provided guidance on how to use the materials. The collaboration served to develop informational materials for microbicide trial participants. Furthermore, staff gained a better understanding of issues

  10. Collaborative Research in the Digital Humanities

    CERN Document Server

    Deegan, Marilyn

    2012-01-01

    Collaboration within digital humanities is both a pertinent and a pressing topic as the traditional mode of the humanist, working alone in his or her study, is supplemented by explicitly co-operative, interdependent and collaborative research. This is particularly true where computational methods are employed in large-scale digital humanities projects. This book, which celebrates the contributions of Harold Short to this field, presents fourteen essays by leading authors in the digital humanities. It addresses several issues of collaboration, from the multiple perspectives of institutions, pro

  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...... and libraries in particular. From a cultural policy perspective research in this area is therefore of great importance. Taking our point of departure in respectively the public library and the local cultural history museum in the city of Roskilde we introduce to the current relevance of the subject...... 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...

  12. 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) (pvaluation persisted when children were categorised into groups 'aged 12+' and 'below 12'. Those undergoing a blood test on the day placed a higher valuation on participation in the second scenario (£10.43, £21.67, p=0.044). These children aged 8-16 demonstrated the capacity to discern a fair 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.

  13. Learning from Latino voices: Focus Groups' Insights on Participation in Genetic Research.

    Science.gov (United States)

    Martinez, Priscilla; Cummings, Cory; Karriker-Jaffe, Katherine J; Chartier, Karen G

    2017-08-01

    There is a paucity of genetics research examining alcohol use among Latinos. The purpose of this study is to examine Latino perceptions of participation in alcohol studies that collect biological samples, an important precursor to increasing their participation in genetics research. A synthesis of the literature addressing participation of racial/ethnic minorities in alcohol genetics research was undertaken. We developed a framework of themes related to barriers and facilitators for participation, which we then used to analyze two focus groups held with 18 Latino participants. From the literature review, we identified nine themes related to facilitators of and barriers to participation. They are, on continua: curiosity to disinterest; trust to mistrust; understanding to confusion; safety to danger; inclusion to exclusion; sense of connection to disconnection; hope to despair; ease to hassle; and benefit to cost. Another theme emerged from the focus groups: previous experience to no previous experience with health research. Applying the themes from the literature review to Latino perspectives on providing biological samples for alcohol research helps expand their definition and applicability. Consideration of these themes when designing recruitment/retention materials and strategies may encourage Latino participation in alcohol genetics research. An understanding of these themes and their significance for Latinos is offered in the form of "guiding questions" for researchers to consider as we strive for more inclusive research. Focus group participants were Mexican American; future research should further explore perspectives of this heterogeneous demographic group by studying other Latino subgroups. (Am J Addict 2017;26:477-485). © 2017 American Academy of Addiction Psychiatry.

  14. The effects of cancer research participation on patient experience: a mixed-methods analysis.

    Science.gov (United States)

    McGrath-Lone, L; Ward, H; Schoenborn, C; Day, S

    2016-11-01

    Patient-reported benefits of research participation have been described by study participants; however, many studies have small sample sizes or are limited to patient groups with poor prognoses. The purpose of this study was to explore the effects of research participation on patient experience using survey responses from a large, national sample of cancer patients (N = 66 462) and interviews with breast cancer patients attending a London trust. Multivariate logistic regression was used to investigate associations between taking part in research and positive patient experience. Based on our analysis, patients who participated in research were more likely to rate their overall care and treatment as 'very good/excellent' (ORadj :1.64, 95%CI: 1.53-1.76, P experiences, such as better access to non-standard care, better interactions with staff and being treated as an individual. However, findings from our interviews indicated that there was no common understanding of what constitutes cancer research and no clear delineation between research participation and standard care, from the patient perspective. Further work to explore how participation positively influences patient experience would be useful to develop strategies to improve care and treatment for all patients regardless of whether or not they choose, or have the opportunity, to take part in research. © 2015 The Authors. European Journal of Cancer Care Published by John Wiley & Sons Ltd.

  15. Altruism and participation in longitudinal health research? Insights from the Whitehall II Study.

    Science.gov (United States)

    Mein, Gill; Seale, Clive; Rice, Helen; Johal, Suneeta; Ashcroft, Richard E; Ellison, George; Tinker, Anthea

    2012-12-01

    Research that follows people over a period of time (longitudinal or panel studies) is important in understanding the ageing process and changes over time in the lives of older people. Older people may choose to leave studies due to frailty, or illness and this may diminish the value of the study. However, people also drop out of studies for other reasons and understanding the motivation behind participation or drop out may prevent further loss of valuable longitudinal information and assist the continuation of longitudinal studies. This paper examines qualitative data from interviews and focus groups in 2003/2008 with participants of the Whitehall II Study (based at UCL), and investigates reasons participants give for participating in longitudinal health studies, and recommendations they give for encouraging continued participation as they grow older. A total of 28 participants and 14 staff were interviewed, and 17 participants took part in focus groups. Our findings are discussed in the light of the debate between of altruism and reciprocity. Rather than being wholly motivated by altruism, as research staff had assumed, participants were motivated by the benefits they perceived, particularly the information and care received during the medical examinations and the sense of loyalty and membership associated with being part of the study. Our findings support the view that far from being primarily motivated by altruism, research participation in studies such as this may also involve a degree of implicit and explicit reciprocity. However, participants disliked the obligation to complete the study questionnaires--which may have influenced the expectation of payment or reciprocation, as participation was not wholly pleasing. To try and maintain participation in longitudinal health studies this project recommended gathering information from exit interviews as a way of preventing further withdrawals and closer involvement of participants through a user panel. Copyright

  16. A New Voice in Science : Patient participation in decision-making on biomedical research

    NARCIS (Netherlands)

    Caron-Flinterman, J.F.

    2005-01-01

    End-users are increasingly involved in decision-making concerning science and technology. This dissertation focuses on a specific kind of end-user participation: patient participation in decision-making on bio-medical research. Since patients can be considered relevant experts and stakeholders

  17. Research on Social Participation Level of Religious Culture and Ethics Teacher Candidates in Turkey

    National Research Council Canada - National Science Library

    Abdulkadir Cekin

    2016-01-01

    .... The aim of the research is to examine the social participation level of religious culture and ethics teacher candidates and to determine whether this level changes or not related to gender and high school graduation...

  18. Use of Participant-Generated Photography in a Research Contribution Course

    National Research Council Canada - National Science Library

    Thompson, MaryEllen

    2013-01-01

    .... A comparison of using time-use diaries vs. participant-generated photography is presented to explicate the research process and demonstrate the advantages of using photography, including ease of data collection and data sharing...

  19. 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.

  20. The Experience of Participation in Suicide Research From the Perspective of Individuals With Bipolar Disorder.

    Science.gov (United States)

    Owen, Rebecca; Gooding, Patricia; Dempsey, Robert; Jones, Steven

    2016-11-01

    Reasons underlying the elevated prevalence of suicide in bipolar disorder remain underresearched and poorly understood. Participation in suicide-focused research may pose a risk to vulnerable groups, such as those with bipolar disorder. Participants were asked to provide feedback about their experience of participating in a suicide-focused qualitative research interview. The data set was analyzed using inductive thematic analysis. Qualitative themes were (1) talking about suicide was not distressing, (2) negative interview expectations, (3) personal benefits, (4) value of suicide research, (5) interview advice, and (6) talking about suicide was difficult. Suicide-focused research can be conducted with minimal participant distress. Sufficient procedures must be in place, both to identify those at risk of experiencing distress and to efficiently deal with any distress that might occur.

  1. Community-based research decision-making: Experiences and factors affecting participation

    OpenAIRE

    Vivien Runnels; Caroline Andrew

    2013-01-01

    From the post World War II period through to the present, scientific research and policy has increasingly reflected acceptance and implementation of a view that public interests are better served through public participation. Built on principles of democratic participation, community-based research (CBR) can produce new knowledge through the integration of knowledge of community members’ lived experience with the scientific and technical knowledge of academics. Although community-based resear...

  2. 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

  3. Consent and assent to participate in research from people with dementia.

    Science.gov (United States)

    Slaughter, Susan; Cole, Dixie; Jennings, Eileen; Reimer, Marlene A

    2007-01-01

    Conducting research with vulnerable populations involves careful attention to the interests of individuals. Although it is generally understood that informed consent is a necessary prerequisite to research participation, it is less clear how to proceed when potential research participants lack the capacity to provide this informed consent. The rationale for assessing the assent or dissent of vulnerable individuals and obtaining informed consent by authorized representatives is discussed. Practical guidelines for recruitment of and data collection from people in the middle or late stage of dementia are proposed. These guidelines were used by research assistants in a minimal risk study.

  4. Males’ Reactions to Participating in Research on Dating Violence Victimization and Childhood Abuse

    Science.gov (United States)

    Shorey, Ryan C.; Zucosky, Heather; Febres, Jeniimarie; Brasfield, Hope; Stuart, Gregory L.

    2012-01-01

    Childhood abuse and dating violence victimization are prevalent and devastating problems. While there has been an abundance of research on these topics in recent years, researchers and Institutional Review Boards (IRBs) often struggle with determining whether asking respondents questions on previous violence will result in increased emotional distress or other negative research outcomes. Empirical data is therefore needed that examines the research reactions of individuals who participate in research on childhood abuse and dating violence. The current study examined this topic among a sample of male college students (N = 193). Results showed that victims of childhood sexual abuse had more negative emotional reactions and victims of physical dating violence had more negative perceived drawbacks to research participation than non-victims. However, victims and non-victims did not differ on positive research reactions. These findings suggest that there are few differences between victims and non-victims on research reactions. PMID:23741174

  5. Males' Reactions to Participating in Research on Dating Violence Victimization and Childhood Abuse.

    Science.gov (United States)

    Shorey, Ryan C; Zucosky, Heather; Febres, Jeniimarie; Brasfield, Hope; Stuart, Gregory L

    2013-04-29

    Childhood abuse and dating violence victimization are prevalent and devastating problems. While there has been an abundance of research on these topics in recent years, researchers and Institutional Review Boards (IRBs) often struggle with determining whether asking respondents questions on previous violence will result in increased emotional distress or other negative research outcomes. Empirical data is therefore needed that examines the research reactions of individuals who participate in research on childhood abuse and dating violence. The current study examined this topic among a sample of male college students (N = 193). Results showed that victims of childhood sexual abuse had more negative emotional reactions and victims of physical dating violence had more negative perceived drawbacks to research participation than non-victims. However, victims and non-victims did not differ on positive research reactions. These findings suggest that there are few differences between victims and non-victims on research reactions.

  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. Reporting and referring research participants: ethical challenges for investigators studying children and youth.

    Science.gov (United States)

    Fisher, Celia B

    1994-01-01

    Researchers studying at-risk and socially disenfranchised child and adolescent populations are facing ethical dilemmas not previously encountered in the laboratory or the clinic. One such set of ethical challenges involves whether to: (a) share with guardians research-derived information regarding participant risk, (b) provide participants with service referrals, or (c) report to local authorities problems uncovered during the course of investigation. The articles assembled for this special section address the complex issues of deciding if, when, and how to report or provide referrals for research participants who are minors (referred to hereafter as minor research participants). This paper focuses on two factors underlying these decisions: the validity of risk estimates and meta-ethical positions on scientific responsiblity. It is suggested that, before sharing information about minor research participants investigators should do the following: critically examine the diagnostic validity of developmental measures, include the scope and limitations of information sharing in informed consent procedures, and become familiar with state reporting laws. I discuss the impact of the traditionally accepted act utilitarian meta-ethical position on the investigator-participant relationship, and I recommend consideration of alternative positions as a step toward developing a research ethic of scientific responsibility and care.

  9. Research Article ( Human Resources for Health ) Postoperative ...

    African Journals Online (AJOL)

    Research Article ( Human Resources for Health ) Postoperative outcome of caesarean sections and other major emergency obstetric surgery by clinical officers ... 24 hours postoperatively – and regarding occurrence of pyrexia, wound infection, wound dehiscence, need for re-operation, neonatal outcome or maternal death.

  10. The Human Communication Research Centre Dialogue Database.

    Science.gov (United States)

    Anderson, Anne H.; And Others

    1992-01-01

    Describes the Human Communication Research Centre Dialogue Database. The database consists of over 700 transcribed and coded dialogues from pairs of speakers aged from 7-14. The speakers are recorded over 2 years while tackling cooperative problem-solving tasks, and the same pairs of speakers are recorded over 2 years tackling 10 different…

  11. Facilitating the participation of people with aphasia in research: a description of strategies

    OpenAIRE

    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 with mild, moderate as well as severe aphasia. Aim: To suggest strategies and techniques for research in people with aphasia based upon experiences in conducting research in this group of people. ...

  12. Integrating spaceflight human system risk research

    Science.gov (United States)

    Mindock, Jennifer; Lumpkins, Sarah; Anton, Wilma; Havenhill, Maria; Shelhamer, Mark; Canga, Michael

    2017-10-01

    NASA is working to increase the likelihood of exploration mission success and to maintain crew health, both during exploration missions and long term after return to Earth. To manage the risks in achieving these goals, a system modelled after a Continuous Risk Management framework is in place. ;Human System Risks; (Risks) have been identified, and 32 are currently being actively addressed by NASA's Human Research Program (HRP). Research plans for each of HRP's Risks have been developed and are being executed. Inter-disciplinary ties between the research efforts supporting each Risk have been identified; however, efforts to identify and benefit from these connections have been mostly ad hoc. There is growing recognition that solutions developed to address the full set of Risks covering medical, physiological, behavioural, vehicle, and organizational aspects of exploration missions must be integrated across Risks and disciplines. This paper discusses how a framework of factors influencing human health and performance in space is being applied as the backbone for bringing together sometimes disparate information relevant to the individual Risks. The resulting interrelated information enables identification and visualization of connections between Risks and research efforts in a systematic and standardized manner. This paper also discusses the applications of the visualizations and insights into research planning, solicitation, and decision-making processes.

  13. Maintaining Participation and Momentum in Longitudinal Research Involving High-Risk Families

    Science.gov (United States)

    Graziotti, Ann L.; Hammond, Jane; Messinger, Daniel S.; Bann, Carla M.; Miller-Loncar, Cynthia; Twomey, Jean E.; Bursi, Charlotte; Woldt, Eunice; Nelson, Jay Ann; Fleischmann, Debra; Alexander, Barbara

    2012-01-01

    Purpose The purpose of the current study was to identify and describe strategies available to optimize retention of a high-risk research cohort and assist in the recovery of study participants following participant dropout. Design and Methods The Maternal Lifestyle Study (MLS), which investigated the effects of prenatal substance exposure (cocaine or opiates) on child outcome, is a prospective longitudinal follow-up study that extended from birth through 15 years of age. Retention strategies to maximize participation and factors that might negatively impact compliance were examined over the course of five follow-up phases. Findings At the conclusion of the 15-year visits, MLS had successfully maintained compliance at 76%. Retention rates did not differ by exposure group. Conclusions Maintaining ongoing participation of enrolled study subjects is a critical element of any successful longitudinal study. Strategies that can be used to reengage and maintain participants in longitudinal research include persistence, flexibility with scheduling, home visits, long-distance trips, increased incentives, and development of a computerized tracking system. Establishing rapport with families and ensuring confidentiality contributed to overall participant retention. The use of multiple tracking techniques is essential. Clinical Relevance Researchers are challenged to maintain participants in longitudinal studies to ensure the integrity of their research. PMID:22458928

  14. Research Participation for Bereaved Family Members: Experience and Insights From a Qualitative Study.

    Science.gov (United States)

    Kentish-Barnes, Nancy; McAdam, Jennifer L; Kouki, Sonia; Cohen-Solal, Zoé; Chaize, Marine; Galon, Marion; Souppart, Virginie; Puntillo, Kathleen A; Azoulay, Elie

    2015-09-01

    Research has highlighted potential negative health outcomes for bereaved family members after loss of a loved one in the ICU and has helped identify areas for intervention. The findings exist because these family members agreed to participate in research studies; but little is known about their experience of research participation. To understand why family members participate in bereavement research and the benefits of participating in such research. Qualitative study using interviews with bereaved family members as well as letters written by bereaved family members. Forty-one ICUs in France. Family members who lost a loved one in the ICU. Thematic analysis was used and was based on 54 narratives, 52 letters, and written annotations on 150 questionnaires. Regarding reasons to participate and benefits of research participation, 6 themes emerged: 1) to say thank you to the ICU team, 2) to help other bereaved family members, 3) to express myself from a distance, 4) to not feel abandoned, 5) to share difficult emotions and to help make meaning of the death, and 6) to receive support and care. Bereavement research is possible after loss of a loved one in the ICU and may even be beneficial for family members. Exploring families' experiences of research participation helps define specific family needs in this setting. After the loss of a loved one in the ICU, bereaved families need opportunities to voice their feelings about their experience in the ICU and to give meaning to the end-of-life process; families also need to feel that they are still cared for. Support for the family may need to be developed after loss of a loved one in the ICU in the form of condolence letters, phone calls, or postintensive care meetings.

  15. Strategies for promoting research participation among nurses employed as academics in the university sector.

    Science.gov (United States)

    Gething, L; Leelarthaepin, B

    2000-02-01

    This article documents the process of developing a research culture and enhancing research participation among nurses employed within the Faculty of Nursing at the University of Sydney. It outlines strategies and lessons learned by the researchers in order to provide information useful for others wishing to enhance research productivity. When the Institute of Nursing Studies at the Sydney College of Advanced Education amalgamated with the University of Sydney, the university sector added new dimensions to the job responsibilities of nurse academics. In particular, active research participation became an integral part of academic duties. Previously, relatively few members of academic staff were actively involved in research. This article reports the strategies implemented to promote research. The first step was conduct of an academic staff research needs analysis. Results from this project were used to design a research promotion strategy. A follow-up survey was conducted 2 years later in order to determine level of research skills and participation within faculty staff. Results indicate a substantial change in perceived research skills and confidence.

  16. Culturally appropriate education intervention on biospecimen research participation among Chinese Americans.

    Science.gov (United States)

    Gao, Wanzhen; Ma, Grace X; Tan, Yin; Fang, Carolyn; Weaver, Joellen; Jin, Ming; Lai, Philip; Godwin, Andrew K

    2014-03-01

    Chinese Americans are at increased risk for hepatitis B virus (HBV) infection. To reduce or eliminate disparities in HBV-related infection rates, participation in scientific investigations of HBV risk and treatment, including biospecimen sampling, is important. However, Asian Americans have low rates of participation in biospecimen research, and little is known about how educational interventions affect knowledge and participation in HBV-related biospecimen research. Eight Chinese community-based organizations participated in a quasi-experimental, two-group design with education assessments at pre- and postworkshop and a 3-month follow-up. Four sites were randomly assigned to receive the intervention (n = 175) and four sites to receive general health education (control; n = 240). Participant knowledge about biospecimen research increased from pre- to posteducation in the intervention but not in the control condition. Of intervention participants, 83.4% (146/175) donated one tube of blood for future HBV biospecimen research, and 50.9% (89/175) donated another tube of blood for HBV testing. In contrast, only 1.1% of participants in the control condition reported donating a blood sample at follow-up assessment. The intervention program significantly increased knowledge of and participation in HBV biospecimen research among Chinese Americans. Community-based participatory research (CBPR) methods featured active support by community leaders, a culturally specific curriculum, and convenient, immediate access to blood sampling, which resulted in high donation rates. HBV-related morbidity and mortality is an urgent problem faced by Chinese Americans. CBPR provides a model for engaging communities in early detection, vaccination, and treatment that can reduce this health threat. ©2014 AACR.

  17. Researching Youth Political Participation in Australia: Arguments for an Expanded Focus

    Science.gov (United States)

    Fyfe, Ian

    2009-01-01

    The distinct political lives and lifestyles of young people provide a rich arena for social research. This paper traces the origins of contemporary definitions of political participation, which are often at odds with the real experiences and aspirations of young citizens. Despite a growing body of empirical evidence in this field, researchers are…

  18. Determinants of Research Follow-up Participation in an Alcohol Treatment Outcome Trial.

    Science.gov (United States)

    Stout, Robert L.; And Others

    1996-01-01

    Examined factors associated with research attrition in a long-term follow-up study (48 months). Researchers attempted to contact all randomized participants, not just those who completed treatment. The analyses deal primarily with refusal, the main reason for attrition. Short-term outcome did not predict refusal. The findings, if generalizable,…

  19. A New Approach to Researching School Effects on Higher Education Participation

    Science.gov (United States)

    Donnelly, Michael

    2015-01-01

    A new approach to researching school effects on higher education participation is proposed here, which combines insights from the school effectiveness field of research with sociological theories and concepts of schooling. In doing so, it draws attention to some of the problems with the dominant approach often taken in this area and attempts to…

  20. Black African immigrant community leaders' views on participation in genomics research and DNA biobanking.

    Science.gov (United States)

    Buseh, Aaron G; Underwood, Sandra M; Stevens, Patricia E; Townsend, Leolia; Kelber, Sheryl T

    2013-01-01

    The emergence of DNA biobanks and the power they lend to genomics research promise substantial advances in disease prevention and treatment. Greater participation of racial/ethnic minority populations is necessary to assure a future of personalized medicine for all. The purpose of this study was to explore perspectives on genomics research and DNA biobanking among black African immigrants, an often overlooked US subpopulation. As part of a larger staged study using community-based participatory research (CBPR) methods, we conducted four focus groups with 27 leaders in the black African immigrant community, exploring perceptions about genomics, barriers, and facilitators to participation in DNA biobanks and ethical ways to engage communities. Prominent in their views on genomics research was the legacy of colonial mistreatment and exploitation by Western researchers in their home countries in sub-Saharan Africa. The central dilemma for participants was balancing responsibilities to protect their people from harm and to find solutions for African generations to come. They insisted that nothing short of a transformation of research practice would elicit the full and sustained participation of African immigrants in the genomics enterprise. To better align practice and policy in the field of genomics research and DNA biobanking with values expressed by African immigrant leaders, it is recommended that the field adopt a CBPR model for research and a benefit-sharing model for policy. Copyright © 2013 Elsevier Inc. All rights reserved.

  1. 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.

  2. 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

  3. 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…

  4. 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.

  5. Twelve tips to guide effective participant recruitment for interprofessional education research.

    Science.gov (United States)

    Kaba, Alyshah; Beran, Tanya

    2014-07-01

    The success of research in interprofessional education is largely due to the participation of students. Their recruitment is, however, perhaps the most challenging part of any study, and, yet, is a key determinant of the results. The aim of this article is to provide a "how to guide" for medical education researchers to facilitate the recruitment of students across health professions. The 12 tips are (1) establish clear expectations with your research team from the start; (2) do your homework: invest time and energy in pre-recruitment preparation; (3) develop a plan: be realistic about your resources; (4) create a "Buzz" about your interprofessional research; (5) prepare multiple communication methods - can't just rely on one! (6) engage volunteers across professions to participate; (7) address the participant's willingness to take part in the research; (8) demonstrate good interpersonal skills; (9) be diligent in tracking participants; (10) show appreciation and share results; (11) consider participant incentives: are they really important? (12) maintain tenacity - no one said interprofessional recruitment was easy! Interprofessional studies offer numerous logistical, administrative and scheduling challenges; the 12 tips are provided to help medical education researchers develop and manage the successful recruitment of students across the health professions.

  6. Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review.

    Science.gov (United States)

    Shabani, Mahsa; Bezuidenhout, Louise; Borry, Pascal

    2014-11-01

    Introducing data sharing practices into the genomic research arena has challenged the current mechanisms established to protect rights of individuals and triggered policy considerations. To inform such policy deliberations, soliciting public and research participants' attitudes with respect to genomic data sharing is a necessity. The main electronic databases were searched in order to retrieve empirical studies, investigating the attitudes of research participants and the public towards genomic data sharing through public databases. In the 15 included studies, participants' attitudes towards genomic data sharing revealed the influence of a constellation of interrelated factors, including the personal perceptions of controllability and sensitivity of data, potential risks and benefits of data sharing at individual and social level and also governance level considerations. This analysis indicates that future policy responses and recruitment practices should be attentive to a wide variety of concerns in order to promote both responsible and progressive research.

  7. [Brazilian experiences in the participation of users and family members in mental health research].

    Science.gov (United States)

    Presotto, Rodrigo Fernando; Silveira, Marília; Delgado, Pedro Gabriel Godinho; Vasconcelos, Eduardo Mourão

    2013-10-01

    In this paper the authors describe and contextualize the participation of users and family members in mental health research in Brazil, addressing the recent tradition of the experiences of recovery and empowerment to define the analysis of some Brazilian experiences of evaluative research and intervention projects, which count on these social actors to act as researchers. The experiences of Self-Help Groups and the Guide to Autonomous Medication Management are described briefly, in order to analyze the limits and possibilities of participation of users and their family members in research, which is still incipient and sporadic in the Brazilian reality. The authors also recommend the creation of an agenda in public health policy that encourages this participation.

  8. Air Force Research Laboratory Warfighter Readiness Research Division Participation in the 2008 IITSEC

    Science.gov (United States)

    2008-12-15

    engagement zones. Alternatively, the TAWS program could be stripped to a modular weather service and act as a “TAWS on demand.” CGF software would request...methods for the present study. Figure 1. Noldus observed behavior chart. The Present Study During the spring 2008 semester at ASU , 17...research possible and for their continued support of the AFRL/ ASU research partnership. The authors would also like to thank Mr. Harry K. Pedersen for

  9. Is it the duty of every citizen to participate in clinical research?

    Directory of Open Access Journals (Sweden)

    Fermín Roland Schramm

    2012-06-01

    Full Text Available The complex phenomenon of globalization, considered by many as the main feature of contemporary societies, is not without contradictions and questions of type analítico-conceptual, as well as ethics and policies. At least three kinds of interpretations of the phenomenon can be distinguished in this sense: as a continuity, understood as development and radicalization of the contents of modernity; as a break in relation to it; or as a hybridization between rupture and continuity. It is in this dialectical context in a globalized world, which must become the question of whether or not there is the moral duty of every citizen to participate in a research involving human beings. But to answer argumentativamente satisfactorily, the meaning of these possible new duties of the citizen, required by the world system in rapidly changing and ever should be discussed. This system is at the same time more integrated and more differentiated - and indicated by the polysemic words globalization and citizenship-, considering that this type of duties involve, in principle, the improvement of the State of health and well-being of individuals and populations, but that they can also involve ethically and politically questionable effects, these duties shall be considered as being only duties prima facie.

  10. Considering the Benefits and Risks of Research Participants' Access to Sequence Data.

    Science.gov (United States)

    Haga, Susanne B; Friedman, Bethany; Richard, Gabriele

    2017-12-01

    The use of sequencing technologies has greatly expanded in both research and clinical settings. The generation of voluminous datasets has raised several issues regarding data sharing and access. Current regulations require clinical laboratories and some research laboratories to provide access to test data, including sequencing data, directly to patients upon request. There is some controversy over whether this access right may be somewhat broader, encompassing research data as well-a question beyond the scope of this article. It is clear that in the research setting, deposition of sequencing data into public or private databases often occurs, although little information exists about the return of data files to research participants (in contrast to the extensive deliberations regarding return of results). Thus, further consideration of the issue of access to data files is warranted as well as more effort to understand both patients' and research participants' use of the data.

  11. Programmatic Approach to Increasing Osteopathic Medical Student Participation in Research: The TCOM Experience.

    Science.gov (United States)

    Smith-Barbaro, Peggy; O-Yurvati, Albert H

    2016-11-01

    Providing medical students with a meaningful research-based educational experience will help them become exemplary physicians and informed consumers of medical research outcomes in the practice of evidence-based medicine. By participating in research projects during medical school, students have the opportunity to study specific fields that interest them in greater depth and develop their written and oral presentation skills. Studies indicate that students who have participated in research and scholarly activities during medical school are at an advantage when matching to their preferred residency. In this article, the authors outline programs and projects that provide opportunities for osteopathic medical students at the University of North Texas Health Science Center Texas College of Osteopathic Medicine to research concepts and conduct hypothesis-driven, hands-on research projects.

  12. 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

  13. Where are all the female participants in Sports and Exercise Medicine research?

    Science.gov (United States)

    Costello, Joseph T; Bieuzen, Francois; Bleakley, Chris M

    2014-01-01

    The aim of this study is to estimate the ratio of male and female participants in Sports and Exercise Medicine research. Original research articles published in three major Sports and Exercise Medicine journals (Medicine and Science in Sports and Exercise, British Journal of Sports Medicine and American Journal of Sports Medicine) over a three-year period were examined. Each article was screened to determine the following: total number of participants, the number of female participants and the number of male participants. The percentage of females and males per article in each of the journals was also calculated. Cross tabulations and Chi-square analysis were used to compare the gender representation of participants within each of the journals. Data were extracted from 1382 articles involving a total of 6,076,580 participants. A total of 2,366,968 (39%) participants were female and 3,709,612 (61%) were male. The average percentage of female participants per article across the journals ranged from 35% to 37%. Females were significantly under-represented across all of the journals (χ(2) = 23,566, df = 2, p Sports and Exercise Medicine practitioners should be cognisant of sexual dimorphism and gender disparity in the current literature.

  14. 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.

  15. Strategies for Meaningful Engagement between Community-Based Health Researchers and First Nations Participants

    Directory of Open Access Journals (Sweden)

    Jaime Cidro

    2017-06-01

    Full Text Available The Baby Teeth Talk Study (BTT is a partnership-based research project looking at interventions to prevent early childhood caries (ECC in First Nations populations in Canada. Community-based researchers (CBRs conducted preventive and behavioral interventions that targeted expectant mothers and their newborns, over a 3-year period. The work of the CBRs requires a great deal of training and skills to administer the interventions. It also requires a broad set of strategies to meaningfully engage participants to make health-promoting changes in their behavior to prevent ECC in their children. After implementing the intervention, BTT CBRs participated in interviews to explore the strategies they employed to engage participants in the prevention of ECC. CBRs perceived two key strategies as essential for meaningful engagement with BTT participants. First, CBRs indicated that their shared experiences through motherhood, First Nations identity, age, and childhood experience provided a positive foundation for dialog with participants that lead to build trust and rapport. Second, supportive interpersonal and culturally based communication skills of the CBR provided further foundation to engage with participants from a strength-based approach. For example, the CBRs knew how to effectively communicate in ways such as being gentle, non-intrusive, and avoiding any perception of judgment when discussing oral health behavior. In First Nations health research, CBRs can provide an essential link in engaging participants and the community for improvements in health. Researchers should carefully consider characteristics such as shared experience and ability to understand cultural communication styles when hiring CBRs in order to build a solid foundation of trust with research participants.

  16. 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.

  17. 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.

  18. Future directions in human-environment research.

    Science.gov (United States)

    Moran, Emilio F; Lopez, Maria Claudia

    2016-01-01

    Human-environment research in the 21st century will need to change in major ways. It will need to integrate the natural and the social sciences; it will need to engage stakeholders and citizens in the design of research and in the delivery of science for the benefit of society; it will need to address ethical and democratic goals; and it will need to address a myriad of important theoretical and methodological challenges that continue to impede progress in the advance of sustainability science. Copyright © 2015 Elsevier Inc. All rights reserved.

  19. RESEARCH ON HUMAN RESOURCES MOTIVATION AND SATISFACTION

    Directory of Open Access Journals (Sweden)

    Zoltan-Bela FARKAS

    2014-06-01

    Full Text Available Many research studies on the human resources performance of the educational system have proved that pupils/students’ educational success depends, to a high degree, on the level of human resource motivation, as well as on their degree of professional satisfaction. Teachers’ who show a high level of motivation, both intrinsic and extrinsic, invest more into their activity, are more creative and more efficient in problem solving. The paper debates the results of an empirical study regarding the influence of pre-university teachers’ motivation and satisfaction regarding the general work conditions on their work performance by measuring the present motivation and satisfaction level. Furthermore, the determinant factors of their satisfaction with the work place are determined and analyzed. Finally, based on the statistical data process we will conclude and debate on the research hypothesis validation and the empirical model related to motivation – satisfaction – performance interdependences.

  20. 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...

  1. Mapping Frontier Research in the Humanities

    DEFF Research Database (Denmark)

    -academic fields and supplemented by new transdisciplinary methods focusing on solving grand societal challenges, such as globalisation, multiculturalism, equality, democracy, security and health. Given the nature of these challenges and the ways in which university leadership has been organised, the very notion...... in more complex landscapes of collective identities, networks, and constraints that open for new forms of intellectual leadership in the 21st century. Link: http://www.bloomsbury.com/uk/mapping-frontier-research-in-the-humanities-9781472597687/...

  2. Research in Humans: Current Perspectives in Brazil

    OpenAIRE

    Célia Alcantara Cunha Lima

    2016-01-01

    This work addressed the norms of ethics for human experimentation in Brazil, operationalized by the National Research Ethics Commission (CONEP) of the National Health Council (CNS). It analyzed international principles of bioethics as a theoretical framework for the Brazilian regulation. National and international publications were reviewed, by Capes periodicals, relating to historical ethical infractions, such as reflection to the current day. It analyzed the law (PL) 200/2015 of the Senate,...

  3. 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.

  4. How important is 'accuracy' of surrogate decision-making for research participation?

    Directory of Open Access Journals (Sweden)

    Scott Y H Kim

    Full Text Available There is a longstanding concern about the accuracy of surrogate consent in representing the health care and research preferences of those who lose their ability to decide for themselves. We sought informed, deliberative views of the older general public (≥50 years old regarding their willingness to participate in dementia research and to grant leeway to future surrogates to choose an option contrary to their stated wishes.503 persons aged 50+ recruited by random digit dialing were randomly assigned to one of three groups: deliberation, education, or control. The deliberation group attended an all-day education/peer deliberation session; the education group received written information only. Participants were surveyed at baseline, after the deliberation session (or equivalent time, and one month after the session, regarding their willingness to participate in dementia research and to give leeway to surrogates, regarding studies of varying risk-benefit profiles (a lumbar puncture study, a drug randomized controlled trial, a vaccine randomized controlled trial, and an early phase gene transfer trial. At baseline, 48% (gene transfer scenario to 92% (drug RCT were willing to participate in future dementia research. A majority of respondents (57-71% depending on scenario were willing to give leeway to future surrogate decision-makers. Democratic deliberation increased willingness to participate in all scenarios, to grant leeway in 3 of 4 scenarios (lumbar puncture, vaccine, and gene transfer, and to enroll loved ones in research in all scenarios. On average, respondents were more willing to volunteer themselves for research than to enroll their loved ones.Most people were willing to grant leeway to their surrogates, and this willingness was either sustained or increased after democratic deliberation, suggesting that the attitude toward leeway is a reliable opinion. Eliciting a person's current preferences about future research participation should

  5. Human rights education: transformative learning through student participation in extracurricular activities at school

    OpenAIRE

    Hall, Genevieve

    2017-01-01

    This research involved a comparative case study analysis of the informal extracurricular human rights education programs in a school in Australia and a school in Asia. The research questions explored how and why schools implement teaching and learning about human rights; the impact that learning about human rights through informal extracurricular activities has on the development of student skills, attitudes, knowledge and understanding as cosmopolitan citizens; and the extent to which learn...

  6. 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.

  7. The role of effective human resource factors in participative management: A comparative Study between Indian and Iranian employees

    Directory of Open Access Journals (Sweden)

    Nader Boroumand

    2013-01-01

    Full Text Available There is an overwhelming need to focus on the human capital and the role of this important resource on organizations’ systems. In addition, there is a need for study on human resource development and participative management system. This would not be an interesting topic for study, if it were not a comparative study in the field of human capital and participative management system. Two important sectors were selected for the study i.e., Gas and Car parts companies. Gas Indian Ltd in Delhi (GAIL and the National Gas Company of Isfahan, Iran; and also, two manufacturers of car parts in India and Iran, named Sona Group Company (in India and Atlas Pump Sepahan (in Iran were selected. The objectives of the study were associated with the role of some important human resource factors in participative management system. Objectives of the study are as follows: The role of communication, employees compassion, employees sentiment, reward system and training in participative management system, also if there were any significant difference on the impact of mentioned variables in Indian and Iranian organizations from the perspective of employees. The questionnaires were distributed among randomly selected employees and the researcher collected responses through the questionnaires of employees. Analysis of data was based on the SPSS (Statistical Package for the Social Sciences. Three levels of analyses were computed: 1.Descriptive analyses 2. T-Test 3. Correlation analyses. The general observations associated with attitudes of Indian and Iranian employees about hypotheses are presented in this paper.

  8. 3 CFR - Guidelines for Human Stem Cell Research

    Science.gov (United States)

    2010-01-01

    ... 3 The President 1 2010-01-01 2010-01-01 false Guidelines for Human Stem Cell Research Presidential Documents Other Presidential Documents Memorandum of July 30, 2009 Guidelines for Human Stem Cell Research..., scientifically worthy human stem cell research, including human embryonic stem cell research, to the extent...

  9. 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.

  10. Bringing humanity into view: action research with Qatar's ambulance service.

    Science.gov (United States)

    Coleman, Gill; Wiggins, Liz

    2017-08-21

    Purpose The purpose of this paper is to argue for the widening of attention in healthcare improvement efforts, to include an awareness of the humanity of people who work in the sector and an appreciation of the part human connection plays in engagement around good quality work. Theoretical frameworks and research approaches which draw on action-based, interpretive and systemic thinking are proposed, as a complement to current practices. Design/methodology/approach The paper describes the early stages of an action research (AR) project, which used the appreciative inquiry "4D" framework to conduct participative inquiry in Hamad Medical Corporation's ambulance service in Qatar, in which staff became co-researchers. Findings The co-researchers were highly motivated to work with improvement goals as a result of their participation in the AR. They, and their managers, saw each other and the work in new ways and discovered that they had much to offer. Research limitations/implications This was a small-scale pilot project, from which findings must be considered tentative. The challenges of establishing good collaboration across language, culture and organisational divides are considerable. Practical implications Appreciative and action-oriented inquiry methods can serve not only to find things out, but also to highlight and give value to aspects of humanity in the workplace that are routinely left invisible in formal processes. This, in turn, can help with quality improvement. Originality/value This paper is a challenge to the orthodox way of viewing healthcare organisations, and improvement processes within them, as reliant on control rather than empowerment. An alternative is to actively include the agency, sense-making capacity and humanity of those involved.

  11. 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.

  12. Clinical Trials: A Crucial Key to Human Health Research

    Science.gov (United States)

    Skip Navigation Bar Home Current Issue Past Issues Clinical Trials: A Crucial Key to Human Health Research Past ... the forefront of human health research today are clinical trials—studies that use human volunteers to help medical ...

  13. Increasing participation in cancer research: insights from Native Hawaiian women in medically underserved communities.

    Science.gov (United States)

    Ka'opua, Lana Sue; Mitschke, Diane; Lono, Joelene

    2004-09-01

    The cancer burden falls heavily on Native Hawaiian women, and of particular concern are those living in medically underserved communities where participation in potentially helpful clinical studies may be limited. Difficulty in accrual of Native Hawaiian women to a culturally-grounded intervention led researchers to conduct focus groups aimed at exploring attitudes towards research, use of a traditional Hawaiian practice for family discussion, and study promotion. Social marketing theory guided the development of discussion questions and a survey. Through purposive sampling, 30 women from medically underserved communities were recruited. Content analysis was used to identify major discussion themes. Findings indicate that lack of informational access may be a major barrier to participation. Study information disseminated through community channels with targeted outreach to social and religious organizations, promotion through face-to-face contact with researchers, and culturally tailored messages directed to families were preferred. Community oriented strategies based on linkages with organizational networks may increase participation.

  14. [Action-research as a strategy to develop pregnant women group: the participants' perception].

    Science.gov (United States)

    Hoga, Luiza Akiko Komura; Reberte, Luciana Magnoni

    2007-12-01

    The aim of this study was to verify the perception of participants regarding the use of the action-research methodology in the development of a group of pregnant women. The group was sponsored by the University of São Paulo's Hospital Universitário. Individual interviews were conducted in order to obtain data from the group's 12 participants. The action-research strategy brought benefits to the development of the group, stimulated participation, promoted the mutual identification of the group members, and responded to specific necessities. Some limitations imposed by the use of the strategy were mentioned and suggestions for improvement were cited. Based on the group members' positive evaluation, the use of the action-research strategy is encouraged.

  15. Am I a control?: Genotype-driven research recruitment and self-understandings of study participants.

    Science.gov (United States)

    Michie, Marsha; Cadigan, R Jean; Henderson, Gail; Beskow, Laura M

    2012-12-01

    Genotype-driven research recruitment complicates traditional study roles and may leave those recruited worried about unwelcome surprises from their DNA. This study investigated the ways that individuals experience genotype-driven recruitment, and conceptualize their roles as research participants. Individual interviews were conducted with the participants of a genotype-driven study on cystic fibrosis. The eligibility criteria included the presence of one of two genetic variants. We interviewed 24 of these participants: 9 had cystic fibrosis and 15 had been selected from a biobank as "healthy volunteers." Participants with cystic fibrosis expressed no concerns about the eligibility criteria and saw themselves as part of a close-knit research community. However, biobank participants were unsure about why they had been selected and how they should think about themselves relative to the study. They sometimes reacted with anxiety to genetic information that they perceived to connect them with cystic fibrosis. Being recruited for a study on the basis of one's genotype may raise uncertainties about the meaning and implications of the genotypic information. People without the disease under study may require especially clear and detailed explanations of what researchers already know about their genetic makeup, in terms of future risk for themselves or their children.

  16. 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.

  17. 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

  18. 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.

  19. Decision-making capacity and informed consent to participate in research by cognitively impaired individuals.

    Science.gov (United States)

    Simpson, Cherie

    2010-11-01

    Obtaining informed consent is a fundamental part of conducting research that balances the need for participant autonomy and calls on the principal investigator to exercise beneficence. This is especially true in research involving persons with dementia and mild cognitive impairment where the ability to understand and reason may be compromised. Performing an assessment of decision-making capacity to consent to research should be the first step in helping the researcher decide who signs the consent. This article reviews the current literature available on instrumentation and procedures for capacity assessment, and in the absence of universal guidelines offers implications and suggestions for practice. Copyright © 2010 Elsevier Inc. All rights reserved.

  20. Engaging Students with Autism Spectrum Disorder in Research through Participant-Driven Photo-Elicitation Research Technique

    Science.gov (United States)

    Danker, Joanne; Strnadová, Iva; Cumming, Therese M.

    2017-01-01

    Participant-driven photo-elicitation, a visual research technique, is commonly used with marginalised and vulnerable groups of individuals. Reflections on the use of this technique are illustrated through a study examining the conceptualisation of student wellbeing from the perspectives of teachers, parents, and students with autism spectrum…

  1. Preliminary thoughts on research in medical humanities.

    Science.gov (United States)

    Yun, Xiaojing; Guo, Jiawei; Qian, Haihong

    2017-05-23

    Medical humanities (MH) is an interdisciplinary field of medicine which includes the humanities (literature, philosophy, ethics, history, and religion), social sciences (anthropology, cultural studies, psychology, sociology, and health geography), and the arts (literature, theater, film, and visual arts) and their application to medical education and practice. Studies of MH should not be limited to theoretical discussions. Research results must be translated into use of methodologies to formulate medical policies, guide clinical practices, and help resolve physical or mental problems. MH has a critical role in addressing medicine-related issues, such as human cloning legislation and the treatment of Ebola virus infection. Recently, MH has also been included in the "Healthy China 2030" project, indicating that MH has garnered more attention in China. Medical colleges, research institutes, and non-profit organizations are focusing on MH studies. Over the past few years, financial support for MH studies has also increased. Although the development of MH currently lags behind medicine and health sciences, MH has promise.

  2. 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

  3. Participant retention practices in longitudinal clinical research studies with high retention rates

    Directory of Open Access Journals (Sweden)

    Martha Abshire

    2017-02-01

    Full Text Available Abstract Background There is a need for improving cohort retention in longitudinal studies. Our objective was to identify cohort retention strategies and implementation approaches used in studies with high retention rates. Methods Longitudinal studies with ≥200 participants, ≥80% retention rates over ≥1 year of follow-up were queried from an Institutional Review Board database at a large research-intensive U.S. university; additional studies were identified through networking. Nineteen (86% of 22 eligible studies agreed to participate. Through in-depth semi-structured interviews, participants provided retention strategies based on themes identified from previous literature reviews. Synthesis of data was completed by a multidisciplinary team. Results The most commonly used retention strategies were: study reminders, study visit characteristics, emphasizing study benefits, and contact/scheduling strategies. The research teams were well-functioning, organized, and persistent. Additionally, teams tailored their strategies to their participants, often adapting and innovating their approaches. Conclusions These studies included specialized and persistent teams and utilized tailored strategies specific to their cohort and individual participants. Studies’ written protocols and published manuscripts often did not reflect the varied strategies employed and adapted through the duration of study. Appropriate retention strategy use requires cultural sensitivity and more research is needed to identify how strategy use varies globally.

  4. Bioinformatics Approaches for Human Gut Microbiome Research

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    Zhijun Zheng

    2016-07-01

    Full Text Available The human microbiome has received much attention because many studies have reported that the human gut microbiome is associated with several diseases. The very large datasets that are produced by these kinds of studies means that bioinformatics approaches are crucial for their analysis. Here, we systematically reviewed bioinformatics tools that are commonly used in microbiome research, including a typical pipeline and software for sequence alignment, abundance profiling, enterotype determination, taxonomic diversity, identifying differentially abundant species/genes, gene cataloging, and functional analyses. We also summarized the algorithms and methods used to define metagenomic species and co-abundance gene groups to expand our understanding of unclassified and poorly understood gut microbes that are undocumented in the current genome databases. Additionally, we examined the methods used to identify metagenomic biomarkers based on the gut microbiome, which might help to expand the knowledge and approaches for disease detection and monitoring.

  5. 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

  6. The Vulnerability of Study Participants in the Context of Transnational Biomedical Research: From Conceptual Considerations to Practical Implications.

    Science.gov (United States)

    Orth, Helen Grete; Schicktanz, Silke

    2017-08-01

    Outsourcing clinical trials sponsored by pharmaceutical companies from industrialized countries to low- (middle)-income countries - summarized as transnational biomedical research (TBR) - has lead to many concerns about ethical standards. Whether study participants are particularly vulnerable is one of those concerns. However, the concept of vulnerability is still vague and varies in its definition. Despite the fact that important international ethical guidelines such as the Declaration of Helsinki by the World Medical Association or the Ethical Guidelines for Biomedical Research Involving Human Subjects by the Council of International Organizations of Medical Sciences refer to vulnerability as ethical principle, each of their approaches are different. To overcome these shortcomings, we analyze and unite different approaches of vulnerability and develop practical criteria in order to operationalize the concept especially for the context of TBR. These criteria refer to the context of a study as well as the characteristics and the current living situation of study participants. Based on a case study of an HIV-vaccine-trial conducted in India we demonstrate how those criteria can be applied in a retrospective way to identify potential ethical conflicts. The criteria can also indicate a prospective function for ethical pre-assessment. For this, we provide an outlook for three major topics: 1. Vulnerability as a normative concept: Different ways of protection; 2. The relevance of transparency and 3. Vulnerability as an instrument to increase decision participation of human subjects. © 2016 John Wiley & Sons Ltd.

  7. Experiences of staff members participating in primary care research activities: a qualitative study

    Directory of Open Access Journals (Sweden)

    Hange D

    2015-04-01

    Full Text Available Dominique Hange,1 Cecilia Björkelund,1 Irene Svenningsson,2 Marie Kivi,3 Maria C Eriksson,1 Eva-Lisa Petersson,1,21Department of Primary Health Care/Public Health and Community Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, 2Närhälsan Research and Development Primary Health Care, Region Västra Götaland, 3Department of Psychology, University of Gothenburg, Gothenburg, Sweden Background: The aim of this paper was to study primary care staff members' experiences and perceptions of participating in a randomized controlled trial concerning Internet therapy. Methods: Data were collected via five focus groups, each containing four to eight nurses or general practitioners. The systematic text condensation method described by Malterud was used for thematic analysis of meaning and content of data across cases. Results: The informants believed it was important to conduct research within the primary care setting, but it was difficult to combine clinical work and research. They stressed also that there was a need for continuous information and communication between primary care centers and researchers as well as internally at each primary care center. Conclusion: Staff members’ experiences of participating in a research study were positive, although associated with various difficulties. It is important to include staff members when designing clinical studies; information should be given continuously during the study and communication facilitated between different occupational groups working at the primary care center. Keywords: primary care, research, staff participation, Sweden

  8. [Relevance of the World Report on Disability by WHO and World Bank for participation research].

    Science.gov (United States)

    Meyer, T; Gutenbrunner, C

    2012-12-01

    The World Report on Disability has been presented to the public in 2011 jointly by WHO and World Bank. This paper aims to highlight the importance of the World Report for participation and rehabilitation research. In a first step we provide an overview of the World Report. It includes an introduction of the understanding of disability and its epidemiology, an analysis of different care sectors and further important life domains as well as recommendations for the improvement of the living situation of persons with disability. Then, the importance of context factors for participation is earmarked. We summarize pivotal messages of the World Report, including the estimation of 15% of the world population that experiences some kind of disability. We report on the consequences drawn for the participation and rehabilitation research. Our recommendations complete the present paper. © Georg Thieme Verlag KG Stuttgart · New York.

  9. 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…

  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. Random responding from participants is a threat to the validity of social science research results

    Directory of Open Access Journals (Sweden)

    Jason W Osborne

    2011-01-01

    Full Text Available Research in the social sciences often relies upon the motivation and goodwill of research participants (e.g., teachers, students, minimally-compensated volunteers to do their best on low stakes assessments of the effects of interventions. Research participants who are unmotivated to perform well can engage in random responding on outcome measures, which can cause substantial mis-estimation of results, biasing results toward the null hypothesis. Data from a recent educational intervention study served as a clear example of this problem: participants identified as random responders showed substantially lower scores than other participants on tests during the study, and failed to show growth in scores from pre- to posttest, while those not engaging in random responding showed much higher scores and significant growth over time. This served to mask the hypothesized group differences across instructional method when random responders were retained in the sample (anticipated group differences were significant when these random responders were removed. We remind researchers to screen their data for random responding (and other response biases in their critical outcome measures in order to improve the odds of detecting effects of their interventions.

  12. Effect of child health status on parents’ allowing children to participate in pediatric research

    Directory of Open Access Journals (Sweden)

    Vanhelst Jérémy

    2013-02-01

    Full Text Available Abstract Background To identify motivational factors linked to child health status that affected the likelihood of parents’ allowing their child to participate in pediatric research. Methods Parents were invited to return their completed questionnaires anonymously to assess motivational factors and factors that might improve participation in pediatric research. Results Of 573 eligible parents, 261 returned the completed questionnaires. Of these, 126 were parents of healthy children (group 1, whereas 135 were parents of sick children who were divided into two groups according to the severity of their pathology, i.e., 99 ambulatory children (group 2 and 36 nonambulatory children (group 3. The main factor motivating participation in a pediatric clinical research study was “direct benefits for their child” (87.7%, 100%, and 100% for groups 1, 2, and 3, respectively. The other factors differed significantly between the three groups, depending on the child’s health status (all p 2 test, all p ≤ 0.04, depending on the child’s health status. The main factor was “a better understanding of the study and its regulation” for the healthy children and ambulatory sick children groups (31.2% and 82.1%, respectively, whereas this was the third factor for the nonambulatory sick children group (50%. Conclusions Innovative strategies should be developed based on a child’s health status to improve information provision when seeking a child’s participation in pediatric research. Parents would like to spend more time in discussions with investigators.

  13. Participation in dementia research: rates and correlates of capacity to give informed consent.

    Science.gov (United States)

    Warner, J; McCarney, R; Griffin, M; Hill, K; Fisher, P

    2008-03-01

    Many people participating in dementia research may lack capacity to give informed consent and the relationship between cognitive function and capacity remains unclear. Recent changes in the law reinforce the need for robust and reproducible methods of assessing capacity when recruiting people for research. To identify numbers of capacitous participants in a pragmatic randomised trial of dementia treatment; to assess characteristics associated with capacity; to describe a legally acceptable consent process for research. As part of a pragmatic randomised controlled trial of Ginkgo biloba for mild-moderate dementia, we used a consenting algorithm that met the requirements of existing case law and the exigencies of the new Mental Capacity Act. We decided who had capacity to give informed consent for participation in the trial using this algorithm and sought predictors of capacity. Most participants (76%) with mild-moderate dementia in this trial were unable to give informed consent according to the legal criteria. When adjusted for confounding, the Mini Mental State examination did not predict the presence of capacity. Cognitive testing alone is insufficient to assess the presence of capacity. Researchers and clinicians need to be aware of the challenging processes regarding capacity assessment. We outline a procedure which we believe meets the ethical and legal requirements.

  14. Research in Humans: Current Perspectives in Brazil

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    Célia Alcantara Cunha Lima

    2016-10-01

    Full Text Available This work addressed the norms of ethics for human experimentation in Brazil, operationalized by the National Research Ethics Commission (CONEP of the National Health Council (CNS. It analyzed international principles of bioethics as a theoretical framework for the Brazilian regulation. National and international publications were reviewed, by Capes periodicals, relating to historical ethical infractions, such as reflection to the current day. It analyzed the law (PL 200/2015 of the Senate, which proposes flexibilities in Brazilian legislation and concluded that the requested changes should be discussed in depth by bioethicists, scientists and Brazilian lawyers with extended discussion to society.

  15. Challenges of Research and Human Capital Development in Nigeria

    Science.gov (United States)

    Chikwe, Christian K.; Ogidi, Reuben C.; Nwachukwu, K.

    2015-01-01

    The paper discussed the challenges of research and human capital development in Nigeria. Research and human capital development are critical to the development of any nation. Research facilitates human capital development. A high rating in human capital development indices places a country among the leading countries of the world. The paper…

  16. Older adults' attitudes toward enrollment of non-competent subjects participating in Alzheimer's research.

    Science.gov (United States)

    Karlawish, Jason; Rubright, Jonathan; Casarett, David; Cary, Mark; Ten Have, Thomas; Sankar, Pamela

    2009-02-01

    Research that seeks to enroll noncompetent patients with Alzheimer's disease without presenting any potential benefit to participants is the source of substantial ethical controversy. The authors used hypothetical Alzheimer's disease studies that included either a blood draw or a blood draw and lumbar puncture to explore older persons' attitudes on this question. Face-to-face interviews were conducted with 538 persons age 65 and older. Questions explored participants' understanding of research concepts, their views on enrolling persons with Alzheimer's disease in research, and their preferences regarding having a proxy decision maker, granting advance consent, and granting their proxy leeway to override the participant's decision. Additional questions assessed altruism, trust, value for research, and perceptions of Alzheimer's disease. The majority (83%) were willing to grant advance consent to a blood draw study, and nearly half (48%) to a blood draw plus lumbar puncture study. Most (96%) were willing to identify a proxy for research decision making, and most were willing to grant their proxy leeway over their advance consent: 81% for the blood draw study and 70% for the blood draw plus lumbar puncture study. Combining the preferences for advance consent and leeway, the proportion who would permit being enrolled in the blood draw and lumbar puncture studies, respectively, were 92% and 75%. Multivariate models showed that willingness to be enrolled in research was most strongly associated with a favorable attitude toward biomedical research. Older adults generally support enrolling noncompetent persons with Alzheimer's disease into research that does not present a benefit to subjects. Willingness to grant their proxy leeway over advance consent and a favorable attitude about biomedical research substantially explain this willingness.

  17. Gamifying quantum research: harnessing human intuition

    Science.gov (United States)

    Sherson, Jacob

    In the emerging field of citizen science ordinary citizens have already contributed to research in as diverse fields as astronomy, protein and RNA folding, and neuron mapping by playing online games. In the www.scienceathome.org project, we have extended this democratized research to the realm of quantum physics by gamifying a class of challenges related to optimization of gate operations in a quantum computer. The games have been played by more than 150,000 players and perhaps surprisingly we observe that a large fraction of the players outperform state-of-the-art optimization algorithms. With a palette of additional games within cognitive science, behavioral economics, and corporate innovation we investigate the general features of individual and collaborative problem solving to shed additional light on the process of human intuition and innovation and potentially develop novel models of artificial intelligence. We have also developed and tested in classrooms educational games within classical and quantum physics and mathematics at high-school and university level. The games provide individualized learning and enhance motivation for the core curriculum by actively creating links to modern research challenges, see eg. Finally, we have recently launched our new democratic lab: an easily accessible remote interface for our ultra-cold atoms experiment allowing amateur scientists, students, and research institutions world-wide to perform state-of-the-art quantum experimentation. In first tests, nearly a thousand players helped optimize the production of our BEC and discovered novel efficient strategies.

  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. Correlates of Individual Versus Joint Participation in Online Survey Research with Same-Sex Male Couples.

    Science.gov (United States)

    Starks, Tyrel J; Millar, Brett M; Parsons, Jeffrey T

    2015-06-01

    Internet-based surveys are commonly utilized as a cost-effective mechanism for data collection in social and health psychology research. Little is known about the differences between partnered gay men who participate alone compared to those with partners who also agree to participate. A sample of 260 partnered gay/bisexual men from New York City completed an online survey covering demographic characteristics, sexual behavior, substance use, and relationship satisfaction. Upon completion, they had the option to send the study link to their partner. In total, 104 (40 %) participants successfully recruited their partners, 90 (34.6 %) were unsuccessful, and 66 (25.4 %) declined the option to refer their partners. Men who did not refer their partners were significantly older, in relationships longer, and reported higher personal income. Participants who successfully recruited partners reported significantly higher relationship satisfaction. While generalizability is limited given the diversity of methodological factors that influence research participation, these data provide an initial insight into the effects on sample composition imposed by the implementation of dyadic (vs. unpaired) designs in online studies.

  20. Participation in pediatric oncology research protocols: Racial/ethnic, language and age-based disparities.

    Science.gov (United States)

    Aristizabal, Paula; Singer, Jenelle; Cooper, Renee; Wells, Kristen J; Nodora, Jesse; Milburn, Mehrzad; Gahagan, Sheila; Schiff, Deborah E; Martinez, Maria E

    2015-08-01

    Survival rates in pediatric oncology have improved dramatically, in part due to high patient participation in clinical trials. Although racial/ethnic inequalities in clinical trial participation have been reported in adults, pediatric data and studies comparing participation rates by socio-demographic characteristics are scarce. The goal of this study was to assess differences in research protocol participation for childhood cancer by age, sex, race/ethnicity, parental language, cancer type, and insurance status. Data on enrollment in any protocol, biospecimen, or therapeutic protocols were collected and analyzed for newly diagnosed pediatric patients with cancer from 2008-2012 at Rady Children's Hospital. Among the 353 patients included in the analysis, 304 (86.1%) were enrolled in any protocol. Enrollment in biospecimen and therapeutic protocols was 84.2% (261/310) and 81.1% (206/254), respectively. Logistic regression analyzes revealed significant enrollment underrepresentation in any protocol for Hispanics compared to Non-Hispanic whites (81% vs. 91%; Odds Ratio [OR], 0.43; 95% Confidence Interval [CI], 0.21-0.90; P = 0.021) and among children of Spanish-speaking vs. English-speaking parents (78% vs. 89%; OR, 0.45; 95%CI, 0.23-0.87; P = 0.016). Compared to patients aged 0-4 years, significant underrepresentation was also found among patients 15-21 years old (92% vs.72%; OR, 0.21; 95% CI, 0.09-0.48; P < 0.001). Similar trends were observed when analyzing enrollment in biospecimen and therapeutic protocols separately. There was significant underrepresentation in protocol participation for Hispanics, children of Spanish-speaking parents, and patients ages 15-21. Research is needed to understand barriers to research participation among these groups underrepresented in pediatric oncology clinical trials. © 2015 Wiley Periodicals, Inc.

  1. Battling the GPA Bias: Selecting NSF-REU Participants for Transformative Research Experiences

    Science.gov (United States)

    Smith, M.; Kim, C. S.; Osborn, J.

    2014-12-01

    Student grade point average (GPA) is one of the most common metrics used to select REU participants, with >85% of NSF-funded research participants nationally having an average GPA at or above 3.0 (Russell, 2004). Yet, as efforts are made to expand and diversify the pool of undergraduates participating in research experiences, privileging candidates with GPAs above 3.0 may exclude promising STEM students who can most benefit from a research experience, including community college students and recent transfer students from community colleges. Myriad factors that impinge on student GPAs are salient in the literature, including (1) early academic failure related to pre-college under-preparation (Feldman, 1993); (2) transfer shock (Molinaro, 2014; Diaz, 1992); (3) employment (DeSimone, 2008); (4) limited social support for academic pursuits (Cheng, Ickes, & Verhofstadt, 2012); (5) food insecurity (Maroto, 2013); and inadequate advising (Pascarella & Terenzini, 2005). A discussion of these factors with examples from student transcripts and an overview of a scoring rubric that minimizes GPA bias and can assist PIs with an alternate approach to participant selection will be included in this session.

  2. CIHR canadian HIV trials network HIV workshop: ethical research through community participation and strengthening scientific validity.

    Science.gov (United States)

    Mbuagbaw, Lawrence; Slogrove, Amy; Sas, Jacqueline; Kunda, John; Morfaw, Frederick; Mukonzo, Jackson; Thabane, Lehana

    2014-01-01

    The CIHR canadian HIV trials network mandate includes strengthening capacity to conduct and apply clinical research through training and mentoring initiatives of HIV researchers by building strong networks and partnerships on the African continent. At the17th International Conference on AIDS and Sexually Transmitted Infections in Africa (ICASA), the CTN facilitated a two-day workshop to address ethical issues in the conduct of HIV research, and career enhancing strategies for young African HIV researchers. Conference attendees were allowed to attend whichever session was of interest to them. We report on the topics covered, readings shared and participants' evaluation of the workshop. The scientific aspects of ethical research in HIV and career enhancement strategies are relevant issues to conference attendees.

  3. Human factors in maintenance: Development and research in Swedish nuclear power plants

    Energy Technology Data Exchange (ETDEWEB)

    Salo, I. [Lund Univ. (Sweden). Dept. of Psychology; Svensson, Ola [Stockholm Univ. (Sweden). Dept. of Psychology

    2001-11-01

    The present report investigated previously completed, ongoing, and planned research and development projects focusing human factors and maintenance work carried out at Swedish nuclear power plants and SKI. In addition, needs for future research and development works were also investigated. Participants from all nuclear power plants and SKI were included in the study. Participants responded to a set of questions in an interview. The interviews also generated a list of future research and development projects.

  4. Recruitment challenges in clinical research: Survey of potential participants in a diagnostic study of ovarian cancer.

    Science.gov (United States)

    Sun, Zhuoyu; Gilbert, Lucy; Ciampi, Antonio; Basso, Olga

    2017-09-01

    Recruiting participants in clinical research is challenging. Certain groups, such as older adults, rural residents, and individuals with lower socio-economic status, are typically underrepresented. Here, we explore perceived motivators and barriers among potential participants in a diagnostic study of ovarian cancer. Women aged 50 and older who answered a mail survey in Montreal, Canada, were asked to assess their eligibility to participate in the ongoing Diagnosing Ovarian cancer Early (DOvE) Study. If 'eligible', they were asked whether they planned to participate in DOvE. Using modified Poisson regression, we examined responders' self-assessment of eligibility, intention to participate, and reasons for why or why not, as a function of socio-demographic and health indicators. Of 826 responders, 33.1% misclassified themselves with respect to eligibility. Among 532 self-assessed eligible women, 56.4% planned to participate in the study. The majority of women not planning to participate preferred to be assessed by their physicians (a reason more commonly reported by those with lower education or income) or believed they were not at risk of ovarian cancer (despite having no fewer risk factors). "Inconvenience" was also a commonly reported reason, especially among rural residents. Women who planned to participate often perceived a benefit (e.g. to rule out ovarian cancer, or to receive a quick check-up). Recruitment, particularly of underrepresented groups, in clinical studies may be enhanced by involving primary care providers, facilitating access to study sites, and providing clear information about the disease under study (including risk factors) and eligibility criteria. Copyright © 2017 Elsevier Inc. All rights reserved.

  5. 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

  6. 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.

  7. Human subjects protection issues in QUERI implementation research: QUERI Series

    Directory of Open Access Journals (Sweden)

    Ritchie Mona

    2008-02-01

    Full Text Available Abstract Background Human Subjects protections approaches, specifically those relating to research review board oversight, vary throughout the world. While all are designed to protect participants involved in research, the structure and specifics of these institutional review boards (IRBs can and do differ. This variation affects all types of research, particularly implementation research. Methods In 2001, we began a series of inter-related studies on implementing evidence-based collaborative care for depression in Veterans Health Administration primary care. We have submitted more than 100 IRB applications, amendments, and renewals, and in doing so, we have interacted with 13 VA and University IRBs across the United States (U.S.. We present four overarching IRB-related themes encountered throughout the implementation of our projects, and within each theme, identify key challenges and suggest approaches that have proved useful. Where applicable, we showcase process aids developed to assist in resolving a particular IRB challenge. Results There are issues unique to implementation research, as this type of research may not fit within the traditional Human Subjects paradigm used to assess clinical trials. Risks in implementation research are generally related to breaches of confidentiality, rather than health risks associated with traditional clinical trials. The implementation-specific challenges discussed are: external validity considerations, Plan-Do-Study-Act cycles, risk-benefit issues, the multiple roles of researchers and subjects, and system-level unit of analysis. Discussion Specific aspects of implementation research interact with variations in knowledge, procedures, and regulatory interpretations across IRBs to affect the implementation and study of best methods to increase evidence-based practice. Through lack of unambiguous guidelines and local liability concerns, IRBs are often at risk of applying both variable and inappropriate or

  8. Facilitating the participation of people with aphasia in research: a description of strategies.

    Science.gov (United States)

    Dalemans, Ruth; Wade, Derick T; van den Heuvel, Wim J A; de Witte, Luc P

    2009-10-01

    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 with mild, moderate as well as severe aphasia. To suggest strategies and techniques for research in people with aphasia based upon experiences in conducting research in this group of people. We conducted a qualitative study and a quantitative study in people with aphasia concerning their social participation. In these studies different strategies were developed based upon the literature, conversations with people with aphasia and speech and language therapists, to facilitate the inclusion of people with aphasia, even those with severe communication problems. Several strategies were evaluated. The strategies used and our experiences are outlined in this report. It is possible to conduct research in this group. Several strategies were helpful to make this mission possible: the use of pre-structured diaries, the use of in-depth interviews with attention to non-verbal communication, the use of existing measurements, adjusted for people with aphasia by: using pictograms, placing one question per page, bolding the key concepts in the question, using large font, visualizing the answering possibilities in words and in pictures, reducing the question length, and excluding negatives in the question. Research in people with aphasia is possible when using strategies adjusted to the communicative impairment.

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

    Science.gov (United States)

    Roberts, Laura Weiss; Kim, Jane Paik

    2014-09-01

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

  10. Concept for linking de-identified biomedical research data using a study participant management system.

    Science.gov (United States)

    Stahmann, Alexander; Bauer, Christian R K D; Schwanke, Jens

    2014-01-01

    Biomedical research projects show an increasing demand of large numbers of participants from different recruiting centers to achieve statistically significant results. The collected types of data are stored in distributed databases and are linked to the participant by different non-resolvable identifiers (layered pseudonyms) for de-identification. To ensure the quality of the gathered data, regular quality assurance analyses are required at each local center. Because of the distributed databases and layered pseudonyms the analyses can only be achieved manually. Therefore, the process is error-prone and laborious. The objective of this paper is to propose a solution concept to automate the manual process by using a local study participant management system. It orchestrates the process and enables the quality assurance analyses within a clinical data warehouse.

  11. Improving the Surgeon's participation in research: is It a problem of training or priority?

    Science.gov (United States)

    Ko, C Y; Whang, E E; Longmire, W P; McFadden, D W

    2000-06-01

    Although numerous important contributions have originated from basic science research performed by surgeons, it seems that such dedicated work is becoming increasingly difficult to accomplish. What are the reasons for this change and what improvements can be made? This study aims to characterize the basic research training and careers of senior academic surgeons to assess and devise strategies for sustaining productive and quality surgical research. A 25-item survey was sent to 850 senior-level members of academic societies, including the Association of Academic Surgeons, Society of University Surgeons, and American Surgical Association. It addressed each surgeon's clinical and research training and career, as well as opinions concerning surgical research. Three hundred seventy-seven (44%) surveys were received. Mean age was 64 years, and 73% were full professors. Seventy-two percent of respondents performed basic science research during training, and for 71% of this group, research was a significant reason for choosing a clinical specialty. Ninety-one percent performed research in the same specialty area during and after training. Of those who performed research during training, a full 99% continued to perform research on completion of training. However, 38% stopped performing basic research by age 39. Seventeen and twenty-three percent stopped basic research between 40 and 49 and between 50 and 59 years of age, respectively. The most common factors causing them to stop were increased clinical load (40%) and increased administrative duties (38%). For respondents who had stopped research prior to age 40, 73% cited increased clinical load as the primary reason. Eighty-five percent felt a dedicated research period should be included in surgery training. Most respondents had participated in basic research during training, and continued similar research after training. However, an overwhelming clinical practice at the junior faculty level seemed to hinder research. We

  12. Ethical considerations and challenges in first-in-human research.

    Science.gov (United States)

    Koonrungsesomboon, Nut; Laothavorn, Junjira; Karbwang, Juntra

    2016-11-01

    First-in-human (FIH) research is a translational process to move a new potential therapy from bench to bedside. Major ethical challenges of an FIH trial arise because of the indeterminate nature of the risks involved and the controversial risk-benefit justification. Severe adverse events and death of subjects who participated in FIH research in the past have led to an increased attention on ethical considerations in the design and conduct of such research. Furthermore, novel therapies in the current decade, such as molecular-targeted, gene transfer, and pluripotent stem cells therapies, have led to numerous emerging ethical challenges or different ethical assessment and justification frameworks for FIH research. This article presents, discusses, and interlinks ethical considerations and challenges in FIH research through a review of related ethical principles and their application to each ethical issue with given examples. Possible solutions to address each ethical challenge are presented. The scope of this article focuses on 4 major ethical issues in FIH research: risk-benefit assessment and justification for the conduct of research, selection of a suitable target population, informed consent, and conflict of interest. Copyright © 2016 Elsevier Inc. All rights reserved.

  13. Human-Robot Interaction Directed Research Project

    Science.gov (United States)

    Sandor, Aniko; Cross, Ernest V., II; Chang, Mai Lee

    2014-01-01

    Human-robot interaction (HRI) is a discipline investigating the factors affecting the interactions between humans and robots. It is important to evaluate how the design of interfaces and command modalities affect the human's ability to perform tasks accurately, efficiently, and effectively when working with a robot. By understanding the effects of interface design on human performance, workload, and situation awareness, interfaces can be developed to appropriately support the human in performing tasks with minimal errors and with appropriate interaction time and effort. Thus, the results of research on human-robot interfaces have direct implications for the design of robotic systems. This DRP concentrates on three areas associated with interfaces and command modalities in HRI which are applicable to NASA robot systems: 1) Video Overlays, 2) Camera Views, and 3) Command Modalities. The first study focused on video overlays that investigated how Augmented Reality (AR) symbology can be added to the human-robot interface to improve teleoperation performance. Three types of AR symbology were explored in this study, command guidance (CG), situation guidance (SG), and both (SCG). CG symbology gives operators explicit instructions on what commands to input, whereas SG symbology gives operators implicit cues so that operators can infer the input commands. The combination of CG and SG provided operators with explicit and implicit cues allowing the operator to choose which symbology to utilize. The objective of the study was to understand how AR symbology affects the human operator's ability to align a robot arm to a target using a flight stick and the ability to allocate attention between the symbology and external views of the world. The study evaluated the effects type of symbology (CG and SG) has on operator tasks performance and attention allocation during teleoperation of a robot arm. The second study expanded on the first study by evaluating the effects of the type of

  14. Substance use disorder genetic research: investigators and participants grapple with the ethical issues.

    Science.gov (United States)

    Coors, Marilyn E; Raymond, Kristen M

    2009-04-01

    This qualitative research examined the ethical concerns regarding the psychosocial issues, research design and implementation, and application of psychiatric genetic research on substance use disorders (SUD) from multiple perspectives. A literature review of the bioethics literature related to psychiatric genetics and focus groups explored the ethical implications of SUD genetic research. Twenty-six National Institute on Drug Abuse funded principal investigators in the field of psychiatric genetic research, nine adolescent patients in residential SUD treatment, and 10 relatives of patients participated in focus groups (held separately). The focus groups were recorded, transcribed, and the content was analyzed. The themes that emerged from the literature and the focus group transcripts were organized by using NVIVO7, a software package designed to manage, analyze, and compare narrative data. Investigators and the literature expressed similar concerns regarding the ethical concerns associated with psychiatric genetic research including violation of privacy, misunderstanding about psychiatric genetics, stigmatization, commercialization, discrimination, eugenics, consequences of research on illegal behavior, unforeseen consequences, altered notion of individual responsibility, and others. Patients and their relatives showed little familiarity with the ethical issues as identified by professionals and little concern regarding most of the potential risks. The exception was apprehension associated with potential criminal justice uses of stored genetic information, in particular enforced therapy and stigmatization, which elicited some concern from all perspectives. The challenge for further research is to identify risks and benefits of SUD research that are germane in a behaviorally disinhibited population and devise effective tools to communicate information to participants through an improved informed consent process.

  15. Substance Use Disorder Genetic Research: Investigators and Participants Grapple with the Ethical Issues

    Science.gov (United States)

    Raymond, Kristen M.

    2009-01-01

    Objective This qualitative research examined the ethical concerns regarding the psychosocial issues, research design and implementation, and application of psychiatric genetic research on substance use disorders (SUD) from multiple perspectives. Method A literature review of the bioethics literature related to psychiatric genetics and focus groups explored the ethical implications of SUD genetic research. Twenty-six National Institute on Drug Abuse (NIDA) funded principal investigators in the field of psychiatric genetic research, 9 adolescent patients in residential SUD treatment, and 10 relatives of patients participated in focus groups (held separately). The focus groups were recorded, transcribed, and the content was analyzed. The themes that emerged from the literature and the focus group transcripts were organized using NVIVO7, a software package designed to manage, analyze and compare narrative data. Results Investigators and the literature expressed similar concerns regarding the ethical concerns associated with psychiatric genetic research including violation of privacy, misunderstanding about psychiatric genetics, stigmatization, commercialization, discrimination, eugenics, consequences of research on illegal behavior, unforeseen consequences, altered notion of individual responsibility, and others. Patients and their relatives demonstrated little familiarity with the ethical issues as identified by professionals and little concern regarding most of the potential risks. The exception was apprehension associated with potential criminal justice uses of stored genetic information and enforced therapy, which elicited some concern from all perspectives. Conclusions The challenge for further research is to identify risks and benefits of SUD research that are germane in a behaviorally disinhibited population and devise effective tools to communicate information to participants through an improved informed consent process. PMID:19668113

  16. A "Child's Rights Perspective": The "Right" of Children and Young People to Participate in Health Care Research.

    Science.gov (United States)

    Clarke, Sonya

    2015-01-01

    As all human beings are consumers of health care provision across the life span and in receipt of care delivered by accountable health care professionals, all should have the right to be involved in shaping the future of their own health care. Rights-based participation, when applied successfully, has the potential to inform and influence the delivery of child health care, the child's experience of health care, plus children's nursing education (Coyne & Gallagher, 2011). The "right" of every child and young person to participate in research that relates to their own health care is also sustained by the author's lead position as a Senior Lecturer in Higher Education for pre-registration children's nursing in Northern Ireland and the appreciation of their voice when practicing as a registered children's nurse and ward sister. The report provides an insight into seminal work on human and child rights; the historical context of children in Western society, and the evolution of children's nursing amid the child's right to participate in shaping their own health care.

  17. 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)

  18. 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.

  19. Human Embryonic Stem Cell Research Debates: A Confucian Argument

    National Research Council Canada - National Science Library

    D. F.-C. Tsai

    2005-01-01

    Human embryonic stem cell research can bring about major biomedical breakthroughs and thus contribute enormously to human welfare, yet it raises serious moral problems because it involves using human...

  20. Mapping Frontier Research in the Humanities

    DEFF Research Database (Denmark)

    Whereas the classical sciences were organized around academic disciplines, knowledge production today is increasingly interdisciplinary and distributed across a variety of societal sectors. Classical disciplines have not only specialized and multiplied; they are increasingly interacting with extr...... in more complex landscapes of collective identities, networks, and constraints that open for new forms of intellectual leadership in the 21st century. Link: http://www.bloomsbury.com/uk/mapping-frontier-research-in-the-humanities-9781472597687/......-academic fields and supplemented by new transdisciplinary methods focusing on solving grand societal challenges, such as globalisation, multiculturalism, equality, democracy, security and health. Given the nature of these challenges and the ways in which university leadership has been organised, the very notion...

  1. Characteristics of nurse practitioners interested in participating in a practice-based research network.

    Science.gov (United States)

    Weyer, Sharon M; Werner, James J

    2010-03-01

    Practice-based Research Networks (PBRNs) have emerged as key laboratories for generating new knowledge that reflects community-based practice; however, the representativeness of nurse practitioners (NPs) interested in PBRN participation is not known. This study describes characteristics of NP members interested in participating in a regional PBRN in comparison with state and national data. All 1016 NPs in northeast (NE) Ohio were surveyed by mail and Internet. The survey captured NP demographics, practice characteristics, and gauged interest in participating in future PBRN studies. Survey respondent's data were compared with Ohio and national data obtained from the 2004 AANP National Nurse Practitioner Sample Survey. NE Ohio NPs were similar to an Ohio and national sample of NPs. Northeast Ohio NPs practicing in ambulatory settings who were interested in participating in subsequent PBRN studies were not significantly different from non-interested NPs. NPs interested in participation in a PBRN appear to be representative of the NE Ohio population of ambulatory practice NPs and are similar demographically to a national sample of NPs. Findings from studies conducted in the NE Ohio PBRN may generalize to other NPs practicing in the region and across the country.

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

    OpenAIRE

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

    2009-01-01

    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 clinica...

  3. From beliefs to patterns of participation – shifting the research perspective on teachers

    DEFF Research Database (Denmark)

    Skott, Jeppe; Larsen, Dorte Moeskær; Østergaard, Camilla Hellsten

    2011-01-01

    Belief research was introduced to mathematics education in the early 1980s. It challenged the primarily cognitive and mathematical agenda of the time by investigating the character and significance of mental meta-constructs called beliefs. Particular attention has ever since been paid to teachers......’ beliefs and their role in instruction. Belief research has been troubled by conceptual and methodological problems since its early beginnings, and most of these are still unresolved. This indicates that it may be time to adopt a different perspective, if we are to understand the role of the teacher...... for the practices of the mathematics classroom. Elsewhere we have discussed the problems of belief research at some length and suggested an alternative that we call patterns-of-participation research (e.g. Skott, 2009, 2010). In the present article we briefly recapitulate some of the arguments underlying...

  4. Cultural "Insiders" and the Issue of Positionality in Qualitative Migration Research: Moving "Across" and Moving "Along" Researcher-Participant Divides

    Directory of Open Access Journals (Sweden)

    Deianira Ganga

    2006-05-01

    Full Text Available Positionality has, to-date, been conceptualised by social scientists as a central component in the process of qualitative (and to an extent quantitative data collection. This paper intends to build upon this conceptualisation by reflecting upon the influence that class and generation can have on qualitative migration research. Specifically, the authors argue that being insiders in the social interview is much more complex and multi-faceted than usually recognised. They also claim that, to a large extent, interviewing within one's own "cultural" community—as an insider—affords the researcher a degree of social proximity that, paradoxically, increases awareness amongst both researcher and participant of the social divisions that exist between them. The authors will use the case of an Italian researcher interviewing Italian migrants in Nottingham (UK and a British researcher interviewing British migrants in Paris (France to illustrate this. In doing so they will first highlight the way in which researchers may "move-up" socio-economically when interviewing, but will also stress that whilst such movement is possible—through strategies of constructing rapport—a certain power imbalance is inevitable. Second, the authors will highlight, through reference to notions of the adopted insider and impartial observer, the way in which interviewers can (at least partially "move across" generational divides within the migrant community. This methodological reflection is designed to aid and improve future research conducted from "inside" the migrant community. URN: urn:nbn:de:0114-fqs060379

  5. 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.

  6. Extending the invitation: Supporting learners from gateway experiences to participating in astronomical research

    Science.gov (United States)

    Laurence, Wendi; Gibbs, J.; Marshall, R.; Murphy, M.; Orr, L.; Rebull, L. M.; Whitworth, C.

    2014-01-01

    NITARP provides a forum in which educators conduct authentic astronomical research with guidance from practicing astrophysicists within an interactive professional learning community. As educators learn to conduct astronomical research, they are simultaneously creating educational outreach programs that connect other educators and secondary students to the research process. This means that, at any given time, participants may be learning astronomical content knowledge, field-specific research methodology, computer programs or devising teaching curricula and methods to extend the research experience to others. To support future endeavors, education research methodologies were employed to document the critical junctures where learning might be thwarted (Laurence, Kelley, Becker, Day & Marshall, 2006). These findings benefit the field in general as conducting authentic research is a key initiative in science education. NITARP also fills a unique critical juncture in the astronomical field. While astronomy is often called a gateway science there remains a precipitous drop-off in the number of students or educators who choose to extend their learning beyond planetarium experiences and introductory courses. To provide an invitation into research, and effective support along the way, we asked the question: What supports and cognitive frameworks learners would need to move from observation to research? Our poster will highlight three necessary skill sets: 1) Visualization constructed from multiple sets of data and images to create data driven conclusions; 2) Team research engagement practices, focused on grappling with data that does not have THE answer but rather a series of patterns or comparisons; 3) The use of multiple software programs, trouble shooting and compatibility. Our poster will discuss the teaching challenges and supports we developed to bring students through the research process and widen the gateway to STEM learning. This project was made possible through

  7. Community participation in primary care in Ireland: the need for implementation research.

    LENUS (Irish Health Repository)

    McEvoy, Rachel

    2012-04-30

    There are now several decades of history of community participation in health, with significant international evidence to suggest that there is much to be gained by primary health services and disadvantaged communities working in partnership.In this paper we provide an overview of community participation in primary care, establishing the policy context in which a recent \\'Joint Initiative on Community Participation in Primary Health Care\\' was developed in Ireland. This Initiative was designed to support the involvement of disadvantaged communities and groups in the development of primary health care services at local level.An independent formative evaluation of the Joint Initiative took place between September 2009 and April 2010. We present a summary of key findings from this evaluation. We pay particular attention to the issue of sustaining community participation in newly developed Primary Care Teams (PCTs) in the current and changing economic climate, an issue considered crucial if the documented positive impacts of the Joint Initiative are to be maintained and the potential for health gains in the longer term are to be realised.We then argue that the Joint Initiative referred to in this paper clearly provides a strong prototype for community participation in PCTs in Ireland. We also ask whether it can be replicated across all PCTs in the country and embedded as a core part of thinking and everyday health care. We highlight the need for research to build knowledge about the ways in which innovations such as this can be embedded into ongoing, routine healthcare practice. This research agenda will have relevance for policy makers, practitioners and evaluators in Ireland and other healthcare jurisdictions.

  8. Balanced performance measurement in research hospitals: the participative case study of a haematology department.

    Science.gov (United States)

    Catuogno, Simona; Arena, Claudia; Saggese, Sara; Sarto, Fabrizia

    2017-08-03

    The paper aims to review, design and implement a multidimensional performance measurement system for a public research hospital in order to address the complexity of its multifaceted stakeholder requirements and its double institutional aim of care and research. The methodology relies on a participative case study performed by external researchers in close collaboration with the staff of an Italian research hospital. The paper develops and applies a customized version of balanced scorecard based on a new set of performance measures. Our findings suggest that it can be considered an effective framework for measuring the research hospital performance, thanks to a combination of generalizable and context-specific factors. By showing how the balanced scorecard framework can be customized to research hospitals, the paper is especially of interest for complex healthcare organizations that are implementing management accounting practices. The paper contributes to the body of literature on the application of the balanced scorecard in healthcare through an examination of the challenges in designing and implementing this multidimensional performance tool. This is one of the first papers that show how the balanced scorecard model can be adapted to fit the specific requirements of public research hospitals.

  9. African American women's perceptions and attitudes regarding participation in medical research: the Mayo Clinic/The Links, Incorporated partnership.

    Science.gov (United States)

    Brewer, LaPrincess C; Hayes, Sharonne N; Parker, Monica W; Balls-Berry, Joyce E; Halyard, Michele Y; Pinn, Vivian W; Radecki Breitkopf, Carmen

    2014-08-01

    To examine perceptions and attitudes toward health-related research participation among professional African American women. Participants were members of an African American women's service organization, The Links, Incorporated. Data were collected via self-administered questionnaires at The Links, Incorporated 2012 National Assembly. Sociodemographics, prior research experience, intention to participate (ITP), willingness to participate (WTP) in a variety of research studies and attitudes about research participation were measured. A total of 381 surveys were analyzed. A majority of respondents were married (66%), employed (69%), and college educated (96%). Median age was 59; 38% reported prior research participation. Overall, 78% agreed with the statement, "Participation in research will mean better care," 24% agreed "Participation in research is risky" and 3% agreed "Scientists cannot be trusted." Fifty-two percent agreed with the statement, "Research conducted in the U.S. is ethical." Mean ITP in research was 4.9±1.7 on a rating scale of 1 ("definitely no") to 7 ("definitely yes"). WTP was highest for an interview study and providing a blood sample, and lowest for clinical trial and medical record review. Attitudes toward research participation were generally favorable among professional African American women; many expressed WTP in a variety of research study types.

  10. Enhancing Hispanic participation in mental health clinical research: development of a Spanish-speaking depression research site.

    Science.gov (United States)

    Aponte-Rivera, Vivianne; Dunlop, Boadie W; Ramirez, Cynthia; Kelley, Mary E; Schneider, Rebecca; Blastos, Beatriz; Larson, Jacqueline; Mercado, Flavia; Mayberg, Helen; Craighead, W Edward

    2014-03-01

    Hispanics, particularly those with limited English proficiency, are underrepresented in psychiatric clinical research studies. We developed a bilingual and bicultural research clinic dedicated to the recruitment and treatment of Spanish-speaking subjects in the Predictors of Remission in Depression to Individual and Combined Treatments (PReDICT) study, a large clinical trial of treatment-naïve subjects with major depressive disorder (MDD). Demographic and clinical data derived from screening evaluations of the first 1,174 subjects presenting for participation were compared between the Spanish-speaking site (N = 275) and the primary English-speaking site (N = 899). Reasons for ineligibility (N = 888) for the PReDICT study were tallied for each site. Compared to English speakers, Spanish speakers had a lower level of education and were more likely to be female, uninsured, and have uncontrolled medical conditions. Clinically, Spanish speakers demonstrated greater depression severity, with higher mean symptom severity scores, and a greater number of previous suicide attempts. Among the subjects who were not randomized into the PReDICT study, Spanish-speaking subjects were more likely to have an uncontrolled medical condition or refuse participation, whereas English-speaking subjects were more likely to have bipolar disorder or a non-MDD depressive disorder. Recruitment of Hispanic subjects with MDD is feasible and may enhance efforts at signal detection, given the higher severity of depression among Spanish-speaking participants presenting for clinical trials. Specific approaches for the recruitment and retention of Spanish-speaking participants are required. © 2013 Wiley Periodicals, Inc.

  11. Games as a Platform for Student Participation in Authentic Scientific Research

    CERN Document Server

    Magnussen, Rikke; Planke, Tilo; Sherson, Jacob Friis

    2015-01-01

    This paper presents results from the design and testing of an educational version of Quantum Moves, a Scientific Discovery Game that allows players to help solve authentic scientific challenges in the effort to develop a quantum computer. The primary aim of developing a game-based platform for student-research collaboration is to investigate if and how this type of game concept can strengthen authentic experimental practice and the creation of new knowledge in science education. Researchers and game developers tested the game in three separate high school classes. The tests were documented using video observations of students playing the game, qualitative interviews, and qualitative and quantitative questionnaires. The focus of the tests has been to study players motivation and their experience of learning through participation in authentic scientific inquiry. In questionnaires conducted in the two first test classes students found that the aspects of doing real scientific research and solving physics problem...

  12. Disclosure of individual genetic data to research participants: the debate reconsidered.

    Science.gov (United States)

    Bredenoord, Annelien L; Kroes, Hester Y; Cuppen, Edwin; Parker, Michael; van Delden, Johannes J M

    2011-02-01

    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 urgent. In this debate two positions can be broadly discerned: a restrictive disclosure policy ('no feedback except life-saving data') and an intermediate policy of qualified disclosure ('feedback if the results meet certain conditions'). We explain both positions and present the principal underlying arguments. We suggest that the debate should no longer address whether genetic research results should be returned, but instead how best to make an appropriate selection and how to strike a balance between the possible benefits of disclosure and the harms of unduly hindering biomedical research. Copyright © 2010 Elsevier Ltd. All rights reserved.

  13. The use of participant-observation protocol in an industrial engineering research.

    Science.gov (United States)

    Silveira e Silva, Renato da; Sznelwar, Laerte Idal; D'Afonseca e Silva, Victor

    2012-01-01

    Based on literature, this article aims to present the "participant-observation' research protocol, and its practical application in the industrial engineering field, more specifically within the area of design development, and in the case shown by this article, of interiors' design. The main target is to identify the concept of the method, i.e., from its characteristics to structure a general sense about the subject, so that the protocol can be used in different areas of knowledge, especially those ones which are committed with the scientific research involving the expertise from researchers, and subjective feelings and opinions of the users of an engineering product, and how this knowledge can be benefic for product design, contributing since the earliest stage of design.

  14. 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...... the parents of children with lung or skin symptoms and those of healthy children. CONCLUSIONS: It is possible to design and accomplish invasive clinical research on infants and young children in a manner that parents find ethically sound....... 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...

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

    Science.gov (United States)

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

    2016-11-10

    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 social effects of disclosure are. This systematic review therefore examines the psychological, behavioral and social effects of disclosing genetic and nongenetic AD-related biomarkers to cognitively healthy research participants. We performed a systematic literature search in eight scientific databases. Three independent reviewers screened the identified records and selected relevant articles. Results extracted from the included articles were aggregated and presented per effect group. Fourteen studies met the inclusion criteria and were included in the data synthesis. None of the identified studies examined the effects of disclosing nongenetic biomarkers. All studies but one concerned the disclosure of APOE genotype and were conducted in the USA. Study populations consisted largely of cognitively healthy first-degree relatives of AD patients. In this group, disclosure of an increased risk was not associated with anxiety, depression or changes in perceived risk in relation to family history. Disclosure of an increased risk did lead to an increase in specific test-related distress levels, health-related behavior changes and long-term care insurance uptake and possibly diminished memory functioning. In cognitively healthy research participants with a first-degree relative with AD, disclosure of APOE ε4-positivity does not lead to elevated anxiety and depression levels, but does increase test-related distress and results in behavior changes concerning insurance and health. We did not find studies reporting the effects of disclosing nongenetic biomarkers and only one study included people without a family history of AD. Empirical studies on the effects of disclosing nongenetic biomarkers

  16. Pharmacy students' participation in a research experience culminating in journal publication.

    Science.gov (United States)

    Nykamp, Diane; Murphy, John E; Marshall, Leisa L; Bell, Allison

    2010-04-12

    To examine factors that influenced doctor of pharmacy (PharmD) students to collaborate with faculty members, preceptors, or others on scholarly activities that resulted in publication of an article in a pharmacy journal, and whether this experience influenced their consideration of a career in academic pharmacy. A 17-question survey instrument was e-mailed to student authors of papers published between 2004 and 2008 in 6 pharmacy journals. Responses were analyzed to determine factors influencing student participation in research and whether the experience led them to consider a career in academic pharmacy. Factors about their participation in the scholarly activity that respondents found valuable included personal fulfillment and making a contribution to the literature. Respondents indicated they were more interested in a career in academic pharmacy after their participation in the scholarly experience (p Participation in scholarly activities and student authorship of a peer-reviewed journal manuscript during pharmacy school may lead to increased interest in a career in academic pharmacy.

  17. [Participative action research; self-care education for the mature adult, a dialogic and empowered process].

    Science.gov (United States)

    Sanchez Gomez, Sheila; Medina Moya, José Luis; Mendoza Pérez de Mendiguren, Beatriz; Ugarte Arena, Ana Isabel; Martínez de Albéniz Arriaran, Mercedes

    2015-11-01

    Explore and transform dialogic-reflexive learning processes oriented to self-care, capacitation, empowerment and health promotion for "mature-adult" collective. Participative action research on a qualitative and sociocritic approach. Data generation methods are SITE: Field work focuses on the development of the educational program "Care is in your hands" that takes place in two villages (Primary Care. Comarca Araba). Through a theoretical sampling involved people who are in a "mature-adult" life stage and three nurses with extensive experience in development health education programs. Participant observation where health education sessions are recorded in video and group reflection on action. To triangulate the data, have been made in-depth interviews with 4 participants. Carried out a content and discourse analysis. Participant and nurses' Previous Frameworks, and these last ones' discourses as well, reveal a current technical rationality (unidirectional, informative,.) yet in practice that perpetuates the role of passive recipient of care. Educational keys constructed from a viewpoint of Dialogic Learning emerge as elements that facilitate overcoming these previous frames limitations. Finally, Reflective Learning launched, has provided advance in professional knowledge and improve health education. Dialogical learning emerges as key to the training and empowerment, where we have seen how practical-reflexive, and not technical, rationality is meanly useful confronting ambiguous and complex situations of self-care practice and education. Copyright © 2014 Elsevier España, S.L.U. All rights reserved.

  18. Researcher-driven Campaigns Engage Nature's Notebook Participants in Scientific Data Collection

    Science.gov (United States)

    Crimmins, Theresa M.; Elmore, Andrew J.; Huete, Alfredo; Keller, Stephen; Levetin, Estelle; Luvall, Jeffrey; Meyers, Orrin; Stylinski, Cathlyn D.; Van De Water, Peter K.; Vukovic, Ana

    2013-01-01

    One of the many benefits of citizen science projects is the capacity they hold for facilitating data collection on a grand scale and thereby enabling scientists to answer questions they would otherwise not been able to address. Nature's Notebook, the plant and animal phenology observing program of the USA National Phenology Network (USA-NPN) suitable for scientists and non-scientists alike, offers scientifically-vetted data collection protocols and infrastructure and mechanisms to quickly reach out to hundreds to thousands of potential contributors. The USA-NPN has recently partnered with several research teams to engage participants in contributing to specific studies. In one example, a team of scientists from NASA, the New Mexico Department of Health, and universities in Arizona, New Mexico, Oklahoma, and California are using juniper phenology observations submitted by Nature's Notebookparticipants to improve predictions of pollen release and inform asthma and allergy alerts. In a second effort, researchers from the University of Maryland Center for Environmental Science are engaging Nature's Notebookparticipants in tracking leafing phenophases of poplars across the U.S. These observations will be compared to information acquired via satellite imagery and used to determine geographic areas where the tree species are most and least adapted to predicted climate change. Researchers in these partnerships receive benefits primarily in the form of ground observations. Launched in 2010, the juniper pollen effort has engaged participants in several western states and has yielded thousands of observations that can play a role in model ground validation. Periodic evaluation of these observations has prompted the team to improve and enhance the materials that participants receive, in an effort to boost data quality. The poplar project is formally launching in spring of 2013 and will run for three years; preliminary findings from 2013 will be presented. Participants in these

  19. [Action-oriented participant research as a strategy for training and evaluation in health education].

    Science.gov (United States)

    Perdomo, G

    1994-09-01

    In this article we present the results of a study on educational practices at the "Escuela de Malariología y Saneamiento Ambiental 'Dr. Arnoldo Gabaldón'" (EMSA), a pioneering institution in training health personnel, pertaining to the Ministry of Health and Social Assistance in Venezuela. This study was developed as an experiment in action-oriented participant research, i. e. authorities, teachers, and students were committed to an evaluation of the educational practices in which they were involved. The main results of this cooperative inquiry were: a theoretical reconstruction of the models of health education employed by EMSA; a critical analysis of those models; and the design and testing of an alternative model centered on community participation.

  20. Human Factors Research for Space Exploration: Measurement, Modeling, and Mitigation

    Science.gov (United States)

    Kaiser, Mary K.; Allen, Christopher S.; Barshi, Immanuel; Billman, Dorrit; Holden, Kritina L.

    2010-01-01

    As part of NASA's Human Research Program, the Space Human Factors Engineering Project serves as the bridge between Human Factors research and Human Spaceflight applications. Our goal is to be responsive to the operational community while addressing issues at a sufficient level of abstraction to ensure that our tools and solutions generalize beyond the point design. In this panel, representatives from four of our research domains will discuss the challenges they face in solving current problems while also enabling future capabilities.

  1. From question-behaviour effects in trials to the social psychology of research participation.

    Science.gov (United States)

    McCambridge, Jim

    2015-01-01

    The 'question-behaviour effect' (QBE) has attracted much recent attention within health psychology, where it has also been referred to as the 'mere measurement' effect. There are other conceptualisations of similar phenomena in related disciplines. This paper explores the implications of the QBE for the safety of inferences about intervention effectiveness within the context of randomised controlled trials evaluating health behaviour change interventions. It draws attention to poorly understood mechanisms by which bias is introduced with conventional thinking about trial design and analysis. The threat to valid inference on intervention effectiveness posed by the QBE applies even when its effects are small and regardless of the specific content of the QBE. The nature of the resulting bias does not fit well within existing bias classification schemes, such as that proposed by the Cochrane Collaboration. The QBE is one possible consequence of research participation and it is suggested that the social psychology of research participation is very much underdeveloped. Possible future directions for health psychology research in this area are considered.

  2. Consistency of Practical and Formal Epistemologies of Science Held by Participants of a Research Apprenticeship

    Science.gov (United States)

    Burgin, Stephen R.; Sadler, Troy D.

    2013-12-01

    The purpose of this research was to examine the consistency between students' practical and formal understandings of scientific epistemologies (also known as nature of science (NOS) understandings) in the context of a research apprenticeship program. Six high school student participants of a residential summer research apprenticeship program at a major university in the southeastern USA were interviewed twice during their experience to elicit their perspectives regarding their practical epistemologies. A phenomenological approach was used to analyze these interviews. The students held practical epistemological understandings of scientific knowledge that were described as being developmental, valuable, formulaic, and authoritative. A survey administered at the end of the program was used to reveal students' formal epistemologies of science. These practical and formal epistemologies were described in terms of Sandoval's (Science Education 89:634-656, 2005) epistemological themes and then compared for all participants. Findings revealed that, for most students, at least some level of consistency was present between their formal and practical epistemological understandings of each theme. In fact, for only one student with one theme, no consistency was evident. These results hold implications for the teaching, learning, and assessment of NOS understandings in these contexts as well as for the design of apprenticeship learning experiences in science.

  3. Identification of facilitators and barriers to participation in weight gain prevention research by African American girls.

    Science.gov (United States)

    Stockton, Michelle B; McClanahan, Barbara S; Lanctot, Jennifer Q; Klesges, Robert C; Beech, Bettina M

    2012-01-01

    The purpose of the current study is to describe the development, implementation, and success of recruitment and adherence strategies of 303 African American preadolescent girls and their primary caregiver in the Girls health Enrichment Multi-site Studies (GEMS) program. A socio-ecologic model was used to guide selection and implementation of recruitment and retention strategies which were continuously monitored and revised in response. Strategy mode and frequency associated with program enrollment, engagement, and retention were analyzed. Successful recruitment approaches included radio messages (23.1%), school fliers (20.1%), and friend referral (15%). Initially 463 potential participants responded, 320 girls were screened, and 303 enrolled. Significant increases in participant accrual were observed between Wave 4 (n=28) and Wave 5 (n=91) after using a team recruitment approach. Implementing case management strategies and providing make-up sessions also served to keep participants current and engaged in the program. In year 2, community field trips replaced the more structured sessions providing participants with experiential learning opportunities. Overall intervention attendance rates ranged from 79.7% to 90.5% among waves. Further, 75.9% and 80.2%, respectively, of participants attended 1-year and 2-year follow-ups. Multiple recruitment strategies and flexible, responsive approaches to recruitment and retention guided by the socio-ecologic model facilitated optimal implementation of an intervention for preadolescent girls. Through the application of the socio-ecologic model researchers and program leaders will be able to identify strategies to enhance the probability of successful outcomes. Copyright © 2011 Elsevier Inc. All rights reserved.

  4. A multimedia consent tool for research participants in the Gambia: a randomized controlled trial.

    Science.gov (United States)

    Afolabi, Muhammed Olanrewaju; McGrath, Nuala; D'Alessandro, Umberto; Kampmann, Beate; Imoukhuede, Egeruan B; Ravinetto, Raffaella M; Alexander, Neal; Larson, Heidi J; Chandramohan, Daniel; Bojang, Kalifa

    2015-05-01

    To assess the effectiveness of a multimedia informed consent tool for adults participating in a clinical trial in the Gambia. Adults eligible for inclusion in a malaria treatment trial (n = 311) were randomized to receive information needed for informed consent using either a multimedia tool (intervention arm) or a standard procedure (control arm). A computerized, audio questionnaire was used to assess participants' comprehension of informed consent. This was done immediately after consent had been obtained (at day 0) and at subsequent follow-up visits (days 7, 14, 21 and 28). The acceptability and ease of use of the multimedia tool were assessed in focus groups. On day 0, the median comprehension score in the intervention arm was 64% compared with 40% in the control arm (P = 0.042). The difference remained significant at all follow-up visits. Poorer comprehension was independently associated with female sex (odds ratio, OR: 0.29; 95% confidence interval, CI: 0.12-0.70) and residing in Jahaly rather than Basse province (OR: 0.33; 95% CI: 0.13-0.82). There was no significant independent association with educational level. The risk that a participant's comprehension score would drop to half of the initial value was lower in the intervention arm (hazard ratio 0.22, 95% CI: 0.16-0.31). Overall, 70% (42/60) of focus group participants from the intervention arm found the multimedia tool clear and easy to understand. A multimedia informed consent tool significantly improved comprehension and retention of consent information by research participants with low levels of literacy.

  5. Dadirri: Using a Philosophical Approach to Research to Build Trust between a Non-Indigenous Researcher and Indigenous Participants

    Directory of Open Access Journals (Sweden)

    Megan Marie Stronach

    2014-09-01

    Full Text Available Abstract: This article focuses on a philosophical approach employed in a PhD research project that set out to investigate sport career transition (SCT experiences of elite Indigenous Australian sportsmen. The research was necessary as little is known about the transition of this cohort to a life after sport, or their experiences of retirement. A key problem within the SCT paradigm is a presumption that an end to elite sport requires a process of adjustment that is common to all sportspeople—a rather narrow perspective that fails to acknowledge the situational complexity and socio-cultural diversity of elite athletes. With such a range of personal circumstances, it is reasonable to suppose that athletes from different cultural groups will have different individual SCT needs. The researcher is non-Indigenous and mature aged: she encountered a number of challenges in her efforts to understand Indigenous culture and its important sensitivities, and to build trust with the Indigenous male participants she interviewed. An Indigenous philosophy known as Dadirri, which emphasises deep and respectful listening, guided the development of the research design and methodology. Consistent with previous studies conducted by non-Indigenous researchers, an open-ended and conversational approach to interviewing Indigenous respondents was developed. The objective was for the voices of the athletes to be heard, allowing the collection of rich data based on the participants’ perspectives about SCT. An overview of the findings is presented, illustrating that Indigenous athletes experience SCT in complex and distinctive ways. The article provides a model for non-Indigenous researchers to conduct qualitative research with Indigenous people.

  6. Research Professionals' Perspectives, Barriers, and Recommendations Regarding Minority Participation in Clinical Trials.

    Science.gov (United States)

    Kurt, Anita; Semler, Lauren; Meyers, Matthew; Porter, Bernadette G; Jacoby, Jeanne L; Stello, Brian

    2017-12-01

    This study aims to investigate research professionals' perspectives regarding minority participation in clinical trials. A web-based survey of research professionals at US institutions receiving NIH and/or AHRQ funding to conduct clinical research in 2013. Descriptive statistics, mean, standard deviation (SD), and the Wilcoxon rank-sum test were utilized for analysis. Distributed were 13,041 surveys with 967 (7.4%) responses. Overall and race-stratified analyses included 633 and 521 surveys, respectively. A majority agreed that patients' race (mean, 3.4; SD = 1.0) and primary language (mean, 4.0; SD = 0.9) have an effect on enrollment. They had more success in enrolling those whose primary language was the same as their own (mean, 3.8; SD = 1.0), and that a language barrier and time spent arranging for interpreters had prevented them from offering a study to potential candidates (mean, 3.2; SD = 1.2). Non-Caucasian respondents were more likely to agree that "fear of unknown side effects" was a deterrent for minorities (p < 0.01), "minorities are more likely to be unavailable for follow-up phone calls" (p = 0.07), and "the unavailability of translated material discourages non-English speakers from participation" (p = 0.08). They also were more likely to be neutral or agree with being discouraged from enrolling minorities because of the possibility of their withdrawal or being less likely to be available for phone follow-ups and follow-up visits (all p < 0.01). Despite a few subtle racial differences in research professionals' perspectives, a majority expressed no hesitation in enrolling minorities. Patients' race and primary language appeared to influence enrollment. A language barrier appeared to be the strongest barrier for research professionals.

  7. Human Performance Research at the Army Research Laboratory

    Science.gov (United States)

    2010-09-22

    Of The AN/PSS-14 Auditory Display Displays for Effective Multisensory Integration Ergonomic Encumbered Human Figure Models Human-Figure...improve survivability, sustainment, efficiency, and effectiveness ergonomics t til biodynamics visual auditory ac e speech 12 of 22UNCLASSIFIED I2

  8. Spirituality and humanization according to nursing undergraduates: an action research.

    Science.gov (United States)

    Coscrato, Gisele; Villela Bueno, Sonia Maria

    2015-01-01

    To know the conceptions of undergraduates from the Teaching Diploma Program with Bachelor degree in Nursing at a public state-owned higher education institution in an interior city in the State of São Paulo about spirituality and humanization, as well as to propose educative action in that sense. Methodoly. A qualitative study was undertaken, using the action research method. The data were collected in the second semester of 2012 through participant observation, registered in a field diary, and interviews with the help of questionnaires. For the interpretative data analysis, categorization was used. The implicit predominance of the technical-procedure care discourse was observed, to the detriment of the educational care discourse, as complementary constructs, according to the participant' statements. Nevertheless, the educational action permitted constructivism and the problematization of knowledge. Although the results may not reflect the reality at the investigated institution, it is concluded that the academic education of nurse educators is a moment of possibilities to include spirituality and humanization, regarding the development of competences that grant individual support to patients and families, in health promotion and coping with disease situations.

  9. Spirituality and humanization according to nursing undergraduates: an action research

    Directory of Open Access Journals (Sweden)

    Gisele Coscrato

    2015-04-01

    Full Text Available Objective. To know the conceptions of undergraduates from the Teaching Diploma Program with Bachelor degree in Nursing at a public state-owned higher education institution in an interior city in the State of São Paulo about spirituality and humanization, as well as to propose educative action in that sense. Methodoly. A qualitative study was undertaken, using the action research method. The data were collected in the second semester of 2012 through participant observation, registered in a field diary, and interviews with the help of questionnaires. For the interpretative data analysis, categorization was used. Results. The implicit predominance of the technical-procedure care discourse was observed, to the detriment of the educational care discourse, as complementary constructs, according to the participant' statements. Nevertheless, the educational action permitted constructivism and the problematization of knowledge. Conclusion. Although the results may not reflect the reality at the investigated institution, it is concluded that the academic education of nurse educators is a moment of possibilities to include spirituality and humanization, regarding the development of competences that grant individual support to patients and families, in health promotion and coping with disease situations.

  10. Striving to provide opportunities for farm worker community participation in research.

    Science.gov (United States)

    Crowe, J L; Keifer, M C; Salazar, M K

    2008-04-01

    Hispanic farm workers and their families in the U.S. face a number of environmental and occupational health risks, yet they are rarely given the opportunity to choose the focus of the research and interventions that take place in their communities. Community-based participatory research (CBPR) can be one effective approach to changing this situation. CBPR is an approach to research that makes community members partners in research rather than subjects of research. This article describes the experience of El Proyecto Bienestar (The Well-Being Project), a CBPR project in the Yakima Valley, Washington, with the aim of facilitating the Hispanic community's involvement in the identification and prioritization of occupational and environmental health issues among farm workers. The project utilized three forms of data collection (key informant interviews, community surveys, and a town hall meeting) to create a list of environmental and occupational health issues of concern. Investigators strove to provide opportunities for community participation in the various stages of research: study concept and design, data collection, data analysis and interpretation, conclusions, and dissemination of results. This article describes the involvement that community members had at each stage of the three forms of data collection and outlines the basic findings that led the Community Advisory Board to prioritize four areas for future work. In addition, it describes the challenges the project faced from the researcher perspective. Using examples from this experience, we conclude that this model may be an effective way for farm workers and their families to have a voice in prioritizing health and safety issues for research and action in their communities.

  11. The Use of Facebook in Recruiting Participants for Health Research Purposes: A Systematic Review.

    Science.gov (United States)

    Whitaker, Christopher; Stevelink, Sharon; Fear, Nicola

    2017-08-28

    Social media is a popular online tool that allows users to communicate and exchange information. It allows digital content such as pictures, videos and websites to be shared, discussed, republished and endorsed by its users, their friends and businesses. 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 research recruitment relies on flyers, newspaper adverts, radio and television broadcasts, letters, emails, website listings, and word of mouth. These methods are potentially poor at recruiting hard to reach demographics, can be slow and expensive. Recruitment via social media, in particular Facebook, may be faster and cheaper. The aim of this study was to systematically review the literature regarding the current use and success of Facebook to recruit participants for health research purposes. A literature review was completed in March 2017 in the English language using MEDLINE, EMBASE, Web of Science, PubMed, PsycInfo, Google Scholar, and a hand search of article references. Papers from the past 12 years were included and number of participants, recruitment period, number of impressions, cost per click or participant, and conversion rate extracted. A total of 35 studies were identified from the United States (n=22), Australia (n=9), Canada (n=2), Japan (n=1), and Germany (n=1) and appraised using the Critical Appraisal Skills Programme (CASP) checklist. All focused on the feasibility of recruitment via Facebook, with some (n=10) also testing interventions, such as smoking cessation and depression reduction. Most recruited young age groups (16-24 years), with the remaining targeting specific demographics, for example, military veterans. Information from the 35 studies was analyzed with median values being 264 recruited participants, a 3-month recruitment period, 3.3 million impressions, cost

  12. How Social and Human Capital Predict Participation in Lifelong Learning: A Longitudinal Data Analysis

    Science.gov (United States)

    Knipprath, Heidi; De Rick, Katleen

    2015-01-01

    Policy makers and researchers are increasingly showing interest in lifelong learning due to a rising unemployment rate in recent years. Much attention has been paid to determinants and benefits of lifelong learning but not to the impact of social capital on lifelong learning so far. In this article, we study how social and human capital can…

  13. Recruitment and communication process for participation in the 2005 AEM Consensus Conference on the Ethical Conduct of Resuscitation Research: methodology, challenges, lessons learned.

    Science.gov (United States)

    Baren, Jill M; Nathanson, Pam G

    2005-11-01

    The 2005 Academic Emergency Medicine Consensus Conference, "Ethical Conduct of Resuscitation Research," was designed with the goal of developing consensus on important issues for human subjects and researchers surrounding the 1996 federal regulations jointly published by the Department of Health and Human Services and the Food and Drug Administration and known as the Final Rule. These regulations, which guide the conduct of research using the emergency exception from informed consent or waiver of informed consent, have been the subject of much debate in the resuscitation research community. Therefore, the editorial board of Academic Emergency Medicine chose this topic as the subject of their annual consensus conference. This report outlines the methods by which individuals and organizations were recruited to participate, how the conference was advertised, and the way in which participants and nonparticipants were encouraged to communicate before and after the conference. The limitations and potential biases of these methods and activities are also presented.

  14. Information Presentation: Human Research Program - Space Human Factors and Habitability, Space Human Factors Engineering Project

    Science.gov (United States)

    Holden, Kristina L.; Sandor, Aniko; Thompson, Shelby G.; Kaiser, Mary K.; McCann, Robert S.; Begault, D. R.; Adelstein, B. D.; Beutter, B. R.; Wenzel, E. M.; Godfroy, M.; hide

    2010-01-01

    The goal of the Information Presentation Directed Research Project (DRP) is to address design questions related to the presentation of information to the crew. The major areas of work, or subtasks, within this DRP are: 1) Displays, 2) Controls, 3) Electronic Procedures and Fault Management, and 4) Human Performance Modeling. This DRP is a collaborative effort between researchers atJohnson Space Center and Ames Research Center. T

  15. Is Hunting Still Healthy? Understanding the Interrelationships between Indigenous Participation in Land-Based Practices and Human-Environmental Health

    Directory of Open Access Journals (Sweden)

    Ursula King

    2014-05-01

    Full Text Available Indigenous participation in land-based practices such as hunting, fishing, ceremony, and land care has a long history. In recent years, researchers and policy makers have advocated the benefits of these practices for both Indigenous people and the places they live. However, there have also been documented risks associated with participation in these activities. Environmental change brought about by shifts in land use, climate changes, and the accumulation of contaminants in the food chain sit alongside equally rapid shifts in social, economic and cultural circumstances, preferences and practices. To date, the literature has not offered a wide-ranging review of the available cross-disciplinary or cross-ecozone evidence for these intersecting benefits and risks, for both human and environmental health and wellbeing. By utilising hunting as a case study, this paper seeks to fill part of that gap through a transdisciplinary meta-analysis of the international literature exploring the ways in which Indigenous participation in land-based practices and human-environmental health have been studied, where the current gaps are, and how these findings could be used to inform research and policy. The result is an intriguing summary of disparate research that highlights the patchwork of contradictory understandings, and uneven regional emphasis, that have been documented. A new model was subsequently developed that facilitates a more in-depth consideration of these complex issues within local-global scale considerations. These findings challenge the bounded disciplinary and geographic spaces in which much of this work has occurred to date, and opens a dialogue to consider the importance of approaching these issues holistically.

  16. Women's experiences of participating in a prospective, longitudinal postpartum depression study: insights for perinatal mental health researchers.

    Science.gov (United States)

    Andrighetti, Heather J; Semaka, Alicia; Austin, Jehannine C

    2017-08-01

    Barriers to recruitment for research on mental illness include participant distrust of researchers and social stigma. Though these issues may be acutely important in perinatal mental health research, they remain unexplored in this context. In order to inform strategies to more fully engage women in perinatal mental health research, we explored the motivations and experiences of women with a history of major depressive disorder who participated in a prospective longitudinal research study on postpartum depression (PPD). Sixteen women with a history of depression who had either completed or recently made a decision about participation in a longitudinal research study about PPD were interviewed by telephone. Qualitative, semi-structured interviews explored participants' decision-making about, and experiences of, participation. Interviews were audio-recorded, transcribed, and qualitatively analyzed using elements of grounded theory methodology. Follow-up interviews were conducted with four participants to refine and clarify preliminary results. Foundational elements necessary for women to consider participating in PPD research included personal acceptance of illness and trust in the research team/institution. Other main motivators included perceived personal relevance, anticipated benefits (including access to support/resources, learning opportunities, and improved self-worth), altruism, and accessible study procedures. Our data suggest that participating in perinatal mental health research may help women make meaning of their mental illness experience and is perceived as providing support. The findings-particularly around the importance of participant-researcher rapport and accessibility of study design-may inform strategies that improve participation rates, decrease attrition, and maximize participant benefits in perinatal mental health research.

  17. Videotaped recording as a method of participant observation in psychiatric nursing research.

    Science.gov (United States)

    Latvala, E; Vuokila-Oikkonen, P; Janhonen, S

    2000-05-01

    This paper describes videotaped recording as a data collection method when conducting participant observation in a psychiatric nursing study. The videotaped episodes were part of the daily life of psychiatric nursing in a hospital environment. The advantages and limitations of using videotaped recording in nursing research will be discussed. This paper is based on two studies. The data consisted of 21 videotaped episodes of nursing report sessions or interdisciplinary team meetings in the psychiatric clinic of a university hospital. The participants consisted of patients, their significant others, nurses, doctors, social workers and physiotherapists. All videotaped material was transcribed verbatim. An essential advantage of videotaping is that most potentially useful interaction and behaviour can be captured. The advantage in terms of the credibility of videotaping was that the investigator was able to review the same videotaped situations again and again. Videotaped material is rich and provides several possibilities for analysing the data. In these studies data and source triangulation enabled the researchers to reduce personal influence on the results. The investigator must also be aware of the limitations concerning this method. The most essential limitations are mechanical problems and the influence of videotaping on behaviour. Careful ethical considerations are important concerning personal privacy, informed consent and respect for the self-determination of psychiatric patients.

  18. Predictors of providing informed consent or assent for research participation in assisted living residents.

    Science.gov (United States)

    Black, Betty S; Brandt, Jason; Rabins, Peter V; Samus, Quincy M; Steele, Cynthia D; Lyketsos, Constantine G; Rosenblatt, Adam

    2008-01-01

    This study's goal was to identify factors associated with providing either informed consent or assent for research in individuals at high risk for cognitive impairment. Cross-sectional baseline data were used to identify predictors of consent or assent status. The study was conducted at 22 assisted living facilities in Maryland. A stratified random sample of 198 assisted living residents participated in the study. Residents' consent or assent status was documented as providing informed consent, written assent, or verbal assent/no objection. Potential predictors included residents' demographic characteristics, measures of physical and mental health status, and neuropsychological test performance. Most participants provided written assent (32.8%) or verbal assent/no objection (30.3%) rather than informed consent (36.9%). Although many resident characteristics correlated with consent or assent status based on bivariate analyses, few variables distinguished those who provided written assent from those in the verbal assent/no objection group. On the basis of multiple discriminant analysis, the best predictors of consent or assent status were Mini-Mental State Exam scores, impairments in instrumental activities of daily living, and dementia diagnosis, which together classified correctly 63.6% of residents. The relatively small proportion of participants who could provide informed consent highlights the importance of assessing decisional capacity for research in a high-risk population and identifying an appropriate surrogate decision maker to provide proxy consent if needed. Consensus on how to define assent is lacking, and specific measures of assent capabilities are needed to better characterize the assent capacity continuum.

  19. What Affects People's Willingness to Participate in Qualitative Research? An Experimental Comparison of Five Incentives

    Science.gov (United States)

    Kelly, Bridget; Margolis, Marjorie; McCormack, Lauren; LeBaron, Patricia A.; Chowdhury, Dhuly

    2017-01-01

    The literature on factors that influence participation in qualitative research is lacking. We conducted an experiment with a nationally representative sample to test the impact of different incentive types and amounts on willingness to participate in a hypothetical qualitative interview. We randomized participants from an online panel to one of…

  20. Broadening Participation in Biology Education Research: Engaging Community College Students and Faculty

    Science.gov (United States)

    Schinske, Jeffrey N.; Balke, Virginia L.; Bangera, M. Gita; Bonney, Kevin M.; Brownell, Sara E.; Carter, Robert S.; Curran-Everett, Douglas; Dolan, Erin L.; Elliott, Samantha L.; Fletcher, Linnea; Gonzalez, Beatriz; Gorga, Joseph J.; Hewlett, James A.; Kiser, Stacey L.; McFarland, Jenny L.; Misra, Anjali; Nenortas, Apryl; Ngeve, Smith M.; Pape-Lindstrom, Pamela A.; Seidel, Shannon B.; Tuthill, Matthew C.; Yin, Yue; Corwin, Lisa A.

    2017-01-01

    Nearly half of all undergraduates are enrolled at community colleges (CCs), including the majority of U.S. students who represent groups underserved in the sciences. Yet only a small minority of studies published in discipline-based education research journals address CC biology students, faculty, courses, or authors. This marked underrepresentation of CC biology education research (BER) limits the availability of evidence that could be used to increase CC student success in biology programs. To address this issue, a diverse group of stakeholders convened at the Building Capacity for Biology Education Research at Community Colleges meeting to discuss how to increase the prevalence of CC BER and foster participation of CC faculty as BER collaborators and authors. The group identified characteristics of CCs that make them excellent environments for studying biology teaching and learning, including student diversity and institutional cultures that prioritize teaching, learning, and assessment. The group also identified constraints likely to impede BER at CCs: limited time, resources, support, and incentives, as well as misalignment between doing research and CC faculty identities as teachers. The meeting culminated with proposing strategies for faculty, administrators, journal editors, scientific societies, and funding agencies to better support CC BER. PMID:28450448

  1. Procedures of recruiting, obtaining informed consent, and compensating research participants in Qatar: findings from a qualitative investigation.

    Science.gov (United States)

    Killawi, Amal; Khidir, Amal; Elnashar, Maha; Abdelrahim, Huda; Hammoud, Maya; Elliott, Heather; Thurston, Michelle; Asad, Humna; Al-Khal, Abdul Latif; Fetters, Michael D

    2014-02-04

    Very few researchers have reported on procedures of recruiting, obtaining informed consent, and compensating participants in health research in the Arabian Gulf Region. Empirical research can inform the debate about whether to adjust these procedures for culturally diverse settings. Our objective was to delineate procedures related to recruiting, obtaining informed consent, and compensating health research participants in the extremely high-density multicultural setting of Qatar. During a multistage mixed methods project, field observations and qualitative interviews were conducted in a general medicine clinic of a major medical center in Qatar. Participants were chosen based on gender, age, literacy, and preferred language, i.e., Arabic, English, Hindi and Urdu. Qualitative analysis identified themes about recruitment, informed consent, compensation, and other research procedures. A total of 153 individuals were approached and 84 enrolled; the latter showed a diverse age range (18 to 75 years); varied language representation: Arabic (n = 24), English (n = 20), Hindi (n = 20), and Urdu (n = 20); and balanced gender distribution: women (n = 43) and men (n = 41). Primary reasons for 30 declinations included concern about interview length and recording. The study achieved a 74% participation rate. Qualitative analytics revealed key themes about hesitation to participate, decisions about participation with family members as well as discussions with them as "incidental research participants", the informed consent process, privacy and gender rules of the interview environment, reactions to member checking and compensation, and motivation for participating. Vulnerability emerged as a recurring issue throughout the process among a minority of participants. This study from Qatar is the first to provide empirical data on recruitment, informed consent, compensation and other research procedures in a general adult population in the Middle East and Arabian Gulf. This

  2. Expectations of pregnant women and partners concerning their participation in humanized births.

    Science.gov (United States)

    Basso, Joéli Fernanda; Monticelli, Marisa

    2010-01-01

    Through the theoretical-methodological support of the Liberation Pedagogy, this convergent-care study identified the expectations of pregnant women and their respective partners concerning their participation in humanized birth. Five categories emerged during an educational intervention carried out with groups: choosing the type of delivery; selecting the type of obstetrical care; acknowledging oneself as a critical subject of ones own reality; negotiating with the health team; and acquiring knowledge concerning the delivery process. The study reveals that even though power relations permeate the interactions experienced within healthcare facilities, liberating educational practices can strengthen individuals so they are able to overcome the status quo and transform their obstetrical situation.

  3. Human-Computer Interaction and Information Management Research Needs

    Data.gov (United States)

    Networking and Information Technology Research and Development, Executive Office of the President — In a visionary future, Human-Computer Interaction HCI and Information Management IM have the potential to enable humans to better manage their lives through the use...

  4. Trends in research with U.S. military service member participants: A population-specific ClinicalTrials.gov review

    Directory of Open Access Journals (Sweden)

    Wendy A. Cook

    2016-08-01

    Conclusions: U.S. military service members participate in biomedical research. To address the health needs of U.S. service members, it is important to ensure there is not a prolonged decline in research among this population. The search strategy may be adapted to ClinicalTrials.gov reviews of specific participant populations for which straightforward searches are not possible.

  5. Changes in gay men's participation in gay community life: implications for HIV surveillance and research.

    Science.gov (United States)

    Zablotska, Iryna B; Holt, Martin; Prestage, Garrett

    2012-04-01

    Successful antiretroviral treatments, achievements in gay acceptance and human rights, and internet use have prompted changes in gay socialising which create potential challenges for engaging with gay men for HIV surveillance and research. We used data from the Australian behavioural surveillance and explored (i) the relationship between community engagement and HIV related practices, and (ii) time trends in gay men's engagement with the gay community. Analyses were conducted using log-binomial regression and chi-square test for trend. The proportion of men who socialized mainly with gay men declined and the Internet use to connect with sex partners increased over time. Gay social engagement was associated with HIV positive serostatus, unprotected anal intercourse with regular partners and a high frequency of HIV/STI testing. Our findings indicate a shift in how gay men socialise and find partners. We discuss the challenges for ongoing engagement with gay men for behavioural surveillance and HIV research.

  6. Advanced Research Training in Human Geography: The Scottish Experience

    Science.gov (United States)

    Gwanzura-Ottemoeller, Fungisai; Hopkins, Peter; Lorimer, Hayden; Philip, Lorna J.

    2005-01-01

    Formal research training is integral to research degrees in human geography completed in UK higher education institutions today. The Economic and Social Research Council (ESRC) has been the driving force behind the formalization of research training. Arguably less well known among the ESRC research training recommendations is the stipulation that…

  7. Human subject research for engineers a practical guide

    CERN Document Server

    de Winter, Joost C F

    2017-01-01

    This Brief introduces engineers to the main principles in ethics, research design, statistics, and publishing of human subject research. In recent years, engineering has become strongly connected to disciplines such as biology, medicine, and psychology. Often, engineers (and engineering students) are expected to perform human subject research. Typical human subject research topics conducted by engineers include human-computer interaction (e.g., evaluating the usability of software), exoskeletons, virtual reality, teleoperation, modelling of human behaviour and decision making (often within the framework of ‘big data’ research), product evaluation, biometrics, behavioural tracking (e.g., of work and travel patterns, or mobile phone use), transport and planning (e.g., an analysis of flows or safety issues), etc. Thus, it can be said that knowledge on how to do human subject research is indispensable for a substantial portion of engineers. Engineers are generally well trained in calculus and mechanics, but m...

  8. Trends in Research with U.S. Military Service Member Participants: A Population-Specific ClinicalTrials.gov Review

    Science.gov (United States)

    Cook, Wendy A.; Doorenbos, Ardith Z.; Bridges, Elizabeth J.

    2016-01-01

    Background ClinicalTrials.gov reviews have evaluated research trends for specific conditions and age groups but not for specific populations of research participants. No ClinicalTrials.gov reviews have evaluated research with military service member participants. Purpose Study objectives were (a) to use ClinicalTrials.gov to identify trends in biomedical research from 2005 to 2014 in which U.S. military service members actively participated as research participants and (b) to describe a search strategy for adaptation in future ClinicalTrials.gov reviews of specific participant populations. Methods A systematic review of ClinicalTrials.gov was performed to identify studies that included U.S. service members as participants, either exclusively or with other groups of participants. Results U.S. service members were identified as participants in 512 studies. Service members participated together with other groups in 392 studies, while 120 studies included only service members. The top five conditions of interest were post-traumatic stress disorder, traumatic brain injury, amputations, burns, and ocular injuries/disorders. The number of studies started each year peaked in 2011 and declined from 2012 to 2014. Twenty-five percent of studies exclusive to service members aimed to enroll 500 or more participants. Research exclusive to Guard and Reserve service members during this period was limited. Conclusions U.S. military service members participate in biomedical research. To address the health needs of U.S. service members, it is important to ensure there is not a prolonged decline in research among this population. The search strategy may be adapted to ClinicalTrials.gov reviews of specific participant populations for which straightforward searches are not possible. PMID:27822569

  9. Implementing community-based provider participation in research: an empirical study

    Directory of Open Access Journals (Sweden)

    Teal Randall

    2012-05-01

    Full Text Available Abstract Background Since 2003, the United States National Institutes of Health (NIH has sought to restructure the clinical research enterprise in the United States by promoting collaborative research partnerships between academically-based investigators and community-based physicians. By increasing community-based provider participation in research (CBPPR, the NIH seeks to advance the science of discovery by conducting research in clinical settings where most people get their care, and accelerate the translation of research results into everyday clinical practice. Although CBPPR is seen as a promising strategy for promoting the use of evidence-based clinical services in community practice settings, few empirical studies have examined the organizational factors that facilitate or hinder the implementation of CBPPR. The purpose of this study is to explore the organizational start-up and early implementation of CBPPR in community-based practice. Methods We used longitudinal, case study research methods and an organizational model of innovation implementation to theoretically guide our study. Our sample consisted of three community practice settings that recently joined the National Cancer Institute’s (NCI Community Clinical Oncology Program (CCOP in the United States. Data were gathered through site visits, telephone interviews, and archival documents from January 2008 to May 2011. Results The organizational model for innovation implementation was useful in identifying and investigating the organizational factors influencing start-up and early implementation of CBPPR in CCOP organizations. In general, the three CCOP organizations varied in the extent to which they achieved consistency in CBPPR over time and across physicians. All three CCOP organizations demonstrated mixed levels of organizational readiness for change. Hospital management support and resource availability were limited across CCOP organizations early on, although they improved in

  10. Implementing community-based provider participation in research: an empirical study

    Science.gov (United States)

    2012-01-01

    Background Since 2003, the United States National Institutes of Health (NIH) has sought to restructure the clinical research enterprise in the United States by promoting collaborative research partnerships between academically-based investigators and community-based physicians. By increasing community-based provider participation in research (CBPPR), the NIH seeks to advance the science of discovery by conducting research in clinical settings where most people get their care, and accelerate the translation of research results into everyday clinical practice. Although CBPPR is seen as a promising strategy for promoting the use of evidence-based clinical services in community practice settings, few empirical studies have examined the organizational factors that facilitate or hinder the implementation of CBPPR. The purpose of this study is to explore the organizational start-up and early implementation of CBPPR in community-based practice. Methods We used longitudinal, case study research methods and an organizational model of innovation implementation to theoretically guide our study. Our sample consisted of three community practice settings that recently joined the National Cancer Institute’s (NCI) Community Clinical Oncology Program (CCOP) in the United States. Data were gathered through site visits, telephone interviews, and archival documents from January 2008 to May 2011. Results The organizational model for innovation implementation was useful in identifying and investigating the organizational factors influencing start-up and early implementation of CBPPR in CCOP organizations. In general, the three CCOP organizations varied in the extent to which they achieved consistency in CBPPR over time and across physicians. All three CCOP organizations demonstrated mixed levels of organizational readiness for change. Hospital management support and resource availability were limited across CCOP organizations early on, although they improved in one CCOP organization

  11. Computer science security research and human subjects: emerging considerations for research ethics boards.

    Science.gov (United States)

    Buchanan, Elizabeth; Aycock, John; Dexter, Scott; Dittrich, David; Hvizdak, Erin

    2011-06-01

    This paper explores the growing concerns with computer science research, and in particular, computer security research and its relationship with the committees that review human subjects research. It offers cases that review boards are likely to confront, and provides a context for appropriate consideration of such research, as issues of bots, clouds, and worms enter the discourse of human subjects review.

  12. Human Research Program Science Management: Overview of Research and Development Activities

    Science.gov (United States)

    Charles, John B.

    2007-01-01

    An overview of research and development activities of NASA's Human Research Science Management Program is presented. The topics include: 1) Human Research Program Goals; 2) Elements and Projects within HRP; 3) Development and Maintenance of Priorities; 4) Acquisition and Evaluation of Research and Technology Proposals; and 5) Annual Reviews

  13. Strengthening the educational value of undergraduate participation in research as part of a psychology department subject pool.

    Science.gov (United States)

    Moyer, Anne; Franklin, Nancy

    2011-03-01

    Participating in research must be an educational experience for students in order to ethically justify its inclusion as a requirement in college courses. Introductory Psychology students (N = 280) completed a written class assignment describing their research participation as a means to enhance this educational mission. Approximately half of students spontaneously mentioned something positive about the significance of the research or what they learned, with the remainder providing neutral, mixed, or negative comments. Students could articulate clearly and knowledgeably about the research in which they had participated. Such an assignment is an effective means to foster an understanding of the science of psychology.

  14. A multimedia consent tool for research participants in the Gambia: a randomized controlled trial

    Science.gov (United States)

    McGrath, Nuala; D’Alessandro, Umberto; Kampmann, Beate; Imoukhuede, Egeruan B; Ravinetto, Raffaella M; Alexander, Neal; Larson, Heidi J; Chandramohan, Daniel; Bojang, Kalifa

    2015-01-01

    Abstract Objective To assess the effectiveness of a multimedia informed consent tool for adults participating in a clinical trial in the Gambia. Methods Adults eligible for inclusion in a malaria treatment trial (n = 311) were randomized to receive information needed for informed consent using either a multimedia tool (intervention arm) or a standard procedure (control arm). A computerized, audio questionnaire was used to assess participants’ comprehension of informed consent. This was done immediately after consent had been obtained (at day 0) and at subsequent follow-up visits (days 7, 14, 21 and 28). The acceptability and ease of use of the multimedia tool were assessed in focus groups. Findings On day 0, the median comprehension score in the intervention arm was 64% compared with 40% in the control arm (P = 0.042). The difference remained significant at all follow-up visits. Poorer comprehension was independently associated with female sex (odds ratio, OR: 0.29; 95% confidence interval, CI: 0.12–0.70) and residing in Jahaly rather than Basse province (OR: 0.33; 95% CI: 0.13–0.82). There was no significant independent association with educational level. The risk that a participant’s comprehension score would drop to half of the initial value was lower in the intervention arm (hazard ratio 0.22, 95% CI: 0.16–0.31). Overall, 70% (42/60) of focus group participants from the intervention arm found the multimedia tool clear and easy to understand. Conclusion A multimedia informed consent tool significantly improved comprehension and retention of consent information by research participants with low levels of literacy. PMID:26229203

  15. Resource implications of preparing individual participant data from a clinical trial to share with external researchers.

    Science.gov (United States)

    Tudur Smith, Catrin; Nevitt, Sarah; Appelbe, Duncan; Appleton, Richard; Dixon, Pete; Harrison, Janet; Marson, Anthony; Williamson, Paula; Tremain, Elizabeth

    2017-07-17

    Demands are increasingly being made for clinical trialists to actively share individual participant data (IPD) collected from clinical trials using responsible methods that protect the confidentiality and privacy of clinical trial participants. Clinical trialists, particularly those receiving public funding, are often concerned about the additional time and money that data-sharing activities will require, but few published empirical data are available to help inform these decisions. We sought to evaluate the activity and resources required to prepare anonymised IPD from a clinical trial in anticipation of a future data-sharing request. Data from two UK publicly funded clinical trials were used for this exercise: 2437 participants with epilepsy recruited from 90 hospital outpatient clinics in the SANAD trial and 146 children with neuro-developmental problems recruited from 18 hospitals in the MENDS trial. We calculated the time and resources required to prepare each anonymised dataset and assemble a data pack ready for sharing. The older SANAD trial (published 2007) required 50 hours of staff time with a total estimated associated cost of £3185 whilst the more recently completed MENDS trial (published 2012) required 39.5 hours of staff time with total estimated associated cost of £2540. Clinical trial researchers, funders and sponsors should consider appropriate resourcing and allow reasonable time for preparing IPD ready for subsequent sharing. This process would be most efficient if prospectively built into the standard operational design and conduct of a clinical trial. Further empirical examples exploring the resource requirements in other settings is recommended. SANAD: International Standard Randomised Controlled Trials Registry: ISRCTN38354748 . Registered on 25 April 2003. EU Clinical Trials Register Eudract 2006-004025-28 . Registered on 16 May 2007. International Standard Randomised Controlled Trials Registry: ISRCTN05534585 /MREC 07/MRE08

  16. Research on electricity market operation mechanism and its benefit of demand side participation

    Science.gov (United States)

    Han, Shuai; Yan, Xu; Qin, Li-juan; Lin, Xi-qiao; Zeng, Bo

    2017-08-01

    Demand response plays an important role in maintaining the economic stability of the system, and has the characteristics of high efficiency, low cost, fast response, good environmental benefits and so on. Demand side resource is an important part of electricity market. The research of demand side resources in our country is still in the initial stage, but the opening of the electricity sales side provides a broad prospect for the development of electricity market. This paper summarizes the main types of demand side resources in our country, analyzes the economic principle of demand response from the micro perspective, puts forward some suggestions on the operation mechanism of China’s demand side resources participating in the electricity market under the condition of electricity sales side opening, analyzes the current situation of pricing in the electricity wholesale market and sets up the pricing strategy of the centralized wholesale market with the demand side power supply participating in quotation, which makes the social and economic benefits reach the maximum.

  17. Evaluation of electronic money system for remuneration of research participants in epidemiological study.

    Science.gov (United States)

    Katoh, Takahiko; Matsuo, Kana; Kuroda, Shouichiro; Lu, Xi; Oda, Masako; Ohba, Takashi

    2014-01-01

    In a long-term large cohort study, we introduced an electronic money system for remuneration of research participants. In comparison with the delivery of cash vouchers, the operation and mailing cost, and the processing time were significantly reduced. The workers were also able to save the time and effort they spent on the inventory management of cash vouchers. In addition, risk management was improved, as demonstrated by the reduction of complaints and associated problems such as nonarrival or content differences of cash vouchers. This is because only card points as additional money need to be added once the electronic money card has been distributed to the recipients. Furthermore, the psychological stress of workers associated with inventory management and ensuring cash voucher enclosure was also reduced.

  18. Theoretical and Methodological Groundings of the Research of Households as Participants of Logistic Systems

    Directory of Open Access Journals (Sweden)

    Zdrenyk Vasyl S.

    2017-05-01

    Full Text Available The article is aimed at determining the nature of households, their role and place in the logistic systems and substantiation of the necessity to use logistic approaches to stimulate the development of households. The article summarizes current approaches to the definition of the concept "household". The essence, role and place of households in logistic systems is characterized. Logistic determinants in ensuring the effective functioning of households are defined and the importance of logistic management in order to encourage their development is proved. Prospects for further research in this direction is scientific search for effective tools to manage development of households, adapted to modern conditions, that will ensure the competitiveness and steady development of all participants of logistic systems, among them households, which should undoubtedly be considered to be their main link.

  19. The most plausible pro-coercion view: requiring informed agreement while penalizing non-participation in research

    Science.gov (United States)

    Barnhill, Anne

    2015-01-01

    In ‘(Why) should we require consent to research?’ Alan Wertheimer probes whether it is legitimate for the government to ‘coerce’ people into participating in biomedical research, including interventional biomedical research. In debating the rules that ought to govern participation in interventional biomedical research, we should distinguish two separate moral claims. First, interventional research should proceed only when the subject has given her informed agreement. Second, it is legitimate for the state to set a requirement that people participate in interventional biomedical research, and to penalize or punish those who refuse to participate. The most plausible ‘pro-coercion’ view accepts both of these claims. Though I stop short of endorsing this view, it captures important ‘pro-coercion’ and ‘anti-coercion’ intuitions. PMID:27774188

  20. User participation in the development of the human/computer interface for control centers

    Science.gov (United States)

    Broome, Richard; Quick-Campbell, Marlene; Creegan, James; Dutilly, Robert

    1996-01-01

    Technological advances coupled with the requirements to reduce operations staffing costs led to the demand for efficient, technologically-sophisticated mission operations control centers. The control center under development for the earth observing system (EOS) is considered. The users are involved in the development of a control center in order to ensure that it is cost-efficient and flexible. A number of measures were implemented in the EOS program in order to encourage user involvement in the area of human-computer interface development. The following user participation exercises carried out in relation to the system analysis and design are described: the shadow participation of the programmers during a day of operations; the flight operations personnel interviews; and the analysis of the flight operations team tasks. The user participation in the interface prototype development, the prototype evaluation, and the system implementation are reported on. The involvement of the users early in the development process enables the requirements to be better understood and the cost to be reduced.

  1. Participants' Role Expectations in Genetics Research and Re-consent: Revising the Theory and Methods of Mental Models Research Relating to Roles.

    Science.gov (United States)

    Condit, Celeste M; Shen, Lijiang; Edwards, Karen L; Bowen, Deborah J; Korngiebel, Diane M; Johnson, Catherine O

    2016-01-01

    The rise of large cohort-based health research that includes genetic components has increased the communication challenges for researchers. Controversies have been amplified over requirements for re-consent, return of results, and privacy protections, among other issues. This study extended research on the impact that the perceived role of "research participant" might have on communication expectations to illuminate research participants' preferences for re-consent. The study employed an online survey of participants in a long-standing cancer genetics registry. Results confirmed previous exploratory findings that research participants endorse multiple mental models of participant roles in research (doctor-patient, collaborator, donor, legal contract, etc.). Regression analyses indicated that high and low salience of different models of the role of research participant are related to different communication expectations. However, the pattern of relationships among roles is relevant. The results of the regression analysis also indicated that preference for mandatory re-consent and its relationship to mental models of roles are related to attitudes of trust, benefits, and informational risks. The discussion identifies implications as including the use of explicit approaches to address role relationships in communication with research participants. It also points to implications for methodological approaches in mental model research.

  2. MOLECULAR ANALYSIS OF HUMAN SPERMATOZOA: POTENTIAL FOR INFERTILITY RESEARCH

    Science.gov (United States)

    Gordon Research Conference: Mammalian Gametogenesis and Embryogenesis New London, CT, July 1-6, 2000Molecular Analysis of Human Spermatozoa: Potential for Infertility ResearchDavid Miller 1, David Dix2, Robert Reid 3, Stephen A Krawetz 3 1Reproductive ...

  3. Deliberate Microbial Infection Research Reveals Limitations to Current Safety Protections of Healthy Human Subjects.

    Science.gov (United States)

    Evers, David L; Fowler, Carol B; Mason, Jeffrey T; Mimnall, Rebecca K

    2015-08-01

    Here we identify approximately 40,000 healthy human volunteers who were intentionally exposed to infectious pathogens in clinical research studies dating from late World War II to the early 2000s. Microbial challenge experiments continue today under contemporary human subject research requirements. In fact, we estimated 4,000 additional volunteers who were experimentally infected between 2010 and the present day. We examine the risks and benefits of these experiments and present areas for improvement in protections of participants with respect to safety. These are the absence of maximum limits to risk and the potential for institutional review boards to include questionable benefits to subjects and society when weighing the risks and benefits of research protocols. The lack of a duty of medical care by physician-investigators to research subjects is likewise of concern. The transparency of microbial challenge experiments and the safety concerns raised in this work may stimulate further dialogue on the risks to participants of human experimentation.

  4. NAS Human Factors Safety Research Laboratory

    Data.gov (United States)

    Federal Laboratory Consortium — This laboratory conducts an integrated program of research on the relationship of factors concerning individuals, work groups, and organizations as employees perform...

  5. A framework for human microbiome research

    Science.gov (United States)

    Methé, Barbara A.; Nelson, Karen E.; Pop, Mihai; Creasy, Heather H.; Giglio, Michelle G.; Huttenhower, Curtis; Gevers, Dirk; Petrosino, Joseph F.; Abubucker, Sahar; Badger, Jonathan H.; Chinwalla, Asif T.; Earl, Ashlee M.; FitzGerald, Michael G.; Fulton, Robert S.; Hallsworth-Pepin, Kymberlie; Lobos, Elizabeth A.; Madupu, Ramana; Magrini, Vincent; Martin, John C.; Mitreva, Makedonka; Muzny, Donna M.; Sodergren, Erica J.; Versalovic, James; Wollam, Aye M.; Worley, Kim C.; Wortman, Jennifer R.; Young, Sarah K.; Zeng, Qiandong; Aagaard, Kjersti M.; Abolude, Olukemi O.; Allen-Vercoe, Emma; Alm, Eric J.; Alvarado, Lucia; Andersen, Gary L.; Anderson, Scott; Appelbaum, Elizabeth; Arachchi, Harindra M.; Armitage, Gary; Arze, Cesar A.; Ayvaz, Tulin; Baker, Carl C.; Begg, Lisa; Belachew, Tsegahiwot; Bhonagiri, Veena; Bihan, Monika; Blaser, Martin J.; Bloom, Toby; Vivien Bonazzi, J.; Brooks, Paul; Buck, Gregory A.; Buhay, Christian J.; Busam, Dana A.; Campbell, Joseph L.; Canon, Shane R.; Cantarel, Brandi L.; Chain, Patrick S.; Chen, I-Min A.; Chen, Lei; Chhibba, Shaila; Chu, Ken; Ciulla, Dawn M.; Clemente, Jose C.; Clifton, Sandra W.; Conlan, Sean; Crabtree, Jonathan; Cutting, Mary A.; Davidovics, Noam J.; Davis, Catherine C.; DeSantis, Todd Z.; Deal, Carolyn; Delehaunty, Kimberley D.; Dewhirst, Floyd E.; Deych, Elena; Ding, Yan; Dooling, David J.; Dugan, Shannon P.; Dunne, Wm. Michael; Durkin, A. Scott; Edgar, Robert C.; Erlich, Rachel L.; Farmer, Candace N.; Farrell, Ruth M.; Faust, Karoline; Feldgarden, Michael; Felix, Victor M.; Fisher, Sheila; Fodor, Anthony A.; Forney, Larry; Foster, Leslie; Di Francesco, Valentina; Friedman, Jonathan; Friedrich, Dennis C.; Fronick, Catrina C.; Fulton, Lucinda L.; Gao, Hongyu; Garcia, Nathalia; Giannoukos, Georgia; Giblin, Christina; Giovanni, Maria Y.; Goldberg, Jonathan M.; Goll, Johannes; Gonzalez, Antonio; Griggs, Allison; Gujja, Sharvari; Haas, Brian J.; Hamilton, Holli A.; Harris, Emily L.; Hepburn, Theresa A.; Herter, Brandi; Hoffmann, Diane E.; Holder, Michael E.; Howarth, Clinton; Huang, Katherine H.; Huse, Susan M.; Izard, Jacques; Jansson, Janet K.; Jiang, Huaiyang; Jordan, Catherine; Joshi, Vandita; Katancik, James A.; Keitel, Wendy A.; Kelley, Scott T.; Kells, Cristyn; Kinder-Haake, Susan; King, Nicholas B.; Knight, Rob; Knights, Dan; Kong, Heidi H.; Koren, Omry; Koren, Sergey; Kota, Karthik C.; Kovar, Christie L.; Kyrpides, Nikos C.; La Rosa, Patricio S.; Lee, Sandra L.; Lemon, Katherine P.; Lennon, Niall; Lewis, Cecil M.; Lewis, Lora; Ley, Ruth E.; Li, Kelvin; Liolios, Konstantinos; Liu, Bo; Liu, Yue; Lo, Chien-Chi; Lozupone, Catherine A.; Lunsford, R. Dwayne; Madden, Tessa; Mahurkar, Anup A.; Mannon, Peter J.; Mardis, Elaine R.; Markowitz, Victor M.; Mavrommatis, Konstantinos; McCorrison, Jamison M.; McDonald, Daniel; McEwen, Jean; McGuire, Amy L.; McInnes, Pamela; Mehta, Teena; Mihindukulasuriya, Kathie A.; Miller, Jason R.; Minx, Patrick J.; Newsham, Irene; Nusbaum, Chad; O’Laughlin, Michelle; Orvis, Joshua; Pagani, Ioanna; Palaniappan, Krishna; Patel, Shital M.; Pearson, Matthew; Peterson, Jane; Podar, Mircea; Pohl, Craig; Pollard, Katherine S.; Priest, Margaret E.; Proctor, Lita M.; Qin, Xiang; Raes, Jeroen; Ravel, Jacques; Reid, Jeffrey G.; Rho, Mina; Rhodes, Rosamond; Riehle, Kevin P.; Rivera, Maria C.; Rodriguez-Mueller, Beltran; Rogers, Yu-Hui; Ross, Matthew C.; Russ, Carsten; Sanka, Ravi K.; Pamela Sankar, J.; Sathirapongsasuti, Fah; Schloss, Jeffery A.; Schloss, Patrick D.; Schmidt, Thomas M.; Scholz, Matthew; Schriml, Lynn; Schubert, Alyxandria M.; Segata, Nicola; Segre, Julia A.; Shannon, William D.; Sharp, Richard R.; Sharpton, Thomas J.; Shenoy, Narmada; Sheth, Nihar U.; Simone, Gina A.; Singh, Indresh; Smillie, Chris S.; Sobel, Jack D.; Sommer, Daniel D.; Spicer, Paul; Sutton, Granger G.; Sykes, Sean M.; Tabbaa, Diana G.; Thiagarajan, Mathangi; Tomlinson, Chad M.; Torralba, Manolito; Treangen, Todd J.; Truty, Rebecca M.; Vishnivetskaya, Tatiana A.; Walker, Jason; Wang, Lu; Wang, Zhengyuan; Ward, Doyle V.; Warren, Wesley; Watson, Mark A.; Wellington, Christopher; Wetterstrand, Kris A.; White, James R.; Wilczek-Boney, Katarzyna; Wu, Yuan Qing; Wylie, Kristine M.; Wylie, Todd; Yandava, Chandri; Ye, Liang; Ye, Yuzhen; Yooseph, Shibu; Youmans, Bonnie P.; Zhang, Lan; Zhou, Yanjiao; Zhu, Yiming; Zoloth, Laurie; Zucker, Jeremy D.; Birren, Bruce W.; Gibbs, Richard A.; Highlander, Sarah K.; Weinstock, George M.; Wilson, Richard K.; White, Owen

    2012-01-01

    A variety of microbial communities and their genes (microbiome) exist throughout the human body, playing fundamental roles in human health and disease. The NIH funded Human Microbiome Project (HMP) Consortium has established a population-scale framework which catalyzed significant development of metagenomic protocols resulting in a broad range of quality-controlled resources and data including standardized methods for creating, processing and interpreting distinct types of high-throughput metagenomic data available to the scientific community. Here we present resources from a population of 242 healthy adults sampled at 15 to 18 body sites up to three times, which to date, have generated 5,177 microbial taxonomic profiles from 16S rRNA genes and over 3.5 Tb of metagenomic sequence. In parallel, approximately 800 human-associated reference genomes have been sequenced. Collectively, these data represent the largest resource to date describing the abundance and variety of the human microbiome, while providing a platform for current and future studies. PMID:22699610

  6. Designing oversight for nanomedicine research in human subjects: systematic analysis of exceptional oversight for emerging technologies

    Science.gov (United States)

    Wolf, Susan M.; Jones, Cortney M.

    2011-04-01

    The basic procedures and rules for oversight of U.S. human subjects research have been in place since 1981. Certain types of human subjects research, however, have provoked creation of additional mechanisms and rules beyond the Department of Health & Human Services (DHHS) Common Rule and Food and Drug Administration (FDA) equivalent. Now another emerging domain of human subjects research—nanomedicine—is prompting calls for extra oversight. However, in 30 years of overseeing research on human beings, we have yet to specify what makes a domain of scientific research warrant extra oversight. This failure to systematically evaluate the need for extra measures, the type of extra measures appropriate for different challenges, and the usefulness of those measures hampers efforts to respond appropriately to emerging science such as nanomedicine. This article evaluates the history of extra oversight, extracting lessons for oversight of nanomedicine research in human beings. We argue that a confluence of factors supports the need for extra oversight, including heightened uncertainty regarding risks, fast-evolving science yielding complex and increasingly active materials, likelihood of research on vulnerable participants including cancer patients, and potential risks to others beyond the research participant. We suggest the essential elements of the extra oversight needed.

  7. Designing Oversight for Nanomedicine Research in Human Subjects: Systematic Analysis of Exceptional Oversight for Emerging Technologies

    Science.gov (United States)

    Wolf, Susan M.; Jones, Cortney

    2012-01-01

    The basic procedures and rules for oversight of U.S. human subjects research have been in place since 1981. Certain types of human subjects research, however, have provoked creation of additional mechanisms and rules beyond the Department of Health & Human Services (DHHS) Common Rule and Food and Drug Administration (FDA) equivalent. Now another emerging domain of human subjects research—nanomedicine—is prompting calls for extra oversight. However, in 30 years of overseeing research on human beings, we have yet to specify what makes a domain of scientific research warrant extra oversight. This failure to systematically evaluate the need for extra measures, the type of extra measures appropriate for different challenges, and the usefulness of those measures hampers efforts to respond appropriately to emerging science such as nanomedicine. This article evaluates the history of extra oversight, extracting lessons for oversight of nanomedicine research in human beings. We argue that a confluence of factors supports the need for extra oversight, including heightened uncertainty regarding risks, fast-evolving science yielding complex and increasingly active materials, likelihood of research on vulnerable participants including cancer patients, and potential risks to others beyond the research participant. We suggest the essential elements of the extra oversight needed. PMID:23226969

  8. Investigators' perspectives on translating human microbiome research into clinical practice.

    Science.gov (United States)

    Slashinski, M J; Whitney, S N; Achenbaum, L S; Keitel, W A; McCurdy, S A; McGuire, A L

    2013-01-01

    Human microbiome research has the potential to transform the practice of medicine, fundamentally shifting the ways in which we think not only about human health, illness and disease, but also about clinical practice and public health interventions. Drawing from a larger qualitative study on ethical, legal and social dimensions of human microbiome research, in this article, we document perspectives related to the translation of human microbiome research into clinical practice, focusing particularly on implications for health, illness and disease. We conducted 60 in-depth, semi-structured interviews (2009-2010) with 63 researchers and National Institutes of Health project leaders ('investigators') involved with human microbiome research. The interviews explored a range of ethical, legal and social implications of human microbiome research, including investigators' perspectives on potential strategies for translating findings to clinical practice. Using thematic content analysis, we identified and analyzed emergent themes and patterns. We identified 3 themes: (1) investigators' general perspectives on the clinical utility of human microbiome research, (2) investigators' perspectives on antibiotic use, overuse and misuse, and (3) investigators' perspectives concerning future challenges of translating data to clinical practice. The issues discussed by investigators concerning the clinical significance of human microbiome research, including embracing a new paradigm of health and disease, the importance of microbial communities, and clinical utility, will be of critical importance as this research moves forward. Copyright © 2013 S. Karger AG, Basel.

  9. Systematic review of the Hawthorne effect: New concepts are needed to study research participation effects☆

    Science.gov (United States)

    McCambridge, Jim; Witton, John; Elbourne, Diana R.

    2014-01-01

    Objectives This study aims to (1) elucidate whether the Hawthorne effect exists, (2) explore under what conditions, and (3) estimate the size of any such effect. Study Design and Setting This systematic review summarizes and evaluates the strength of available evidence on the Hawthorne effect. An inclusive definition of any form of research artifact on behavior using this label, and without cointerventions, was adopted. Results Nineteen purposively designed studies were included, providing quantitative data on the size of the effect in eight randomized controlled trials, five quasiexperimental studies, and six observational evaluations of reporting on one's behavior by answering questions or being directly observed and being aware of being studied. Although all but one study was undertaken within health sciences, study methods, contexts, and findings were highly heterogeneous. Most studies reported some evidence of an effect, although significant biases are judged likely because of the complexity of the evaluation object. Conclusion Consequences of research participation for behaviors being investigated do exist, although little can be securely known about the conditions under which they operate, their mechanisms of effects, or their magnitudes. New concepts are needed to guide empirical studies. PMID:24275499

  10. Systematic review of the Hawthorne effect: new concepts are needed to study research participation effects.

    Science.gov (United States)

    McCambridge, Jim; Witton, John; Elbourne, Diana R

    2014-03-01

    This study aims to (1) elucidate whether the Hawthorne effect exists, (2) explore under what conditions, and (3) estimate the size of any such effect. This systematic review summarizes and evaluates the strength of available evidence on the Hawthorne effect. An inclusive definition of any form of research artifact on behavior using this label, and without cointerventions, was adopted. Nineteen purposively designed studies were included, providing quantitative data on the size of the effect in eight randomized controlled trials, five quasiexperimental studies, and six observational evaluations of reporting on one's behavior by answering questions or being directly observed and being aware of being studied. Although all but one study was undertaken within health sciences, study methods, contexts, and findings were highly heterogeneous. Most studies reported some evidence of an effect, although significant biases are judged likely because of the complexity of the evaluation object. Consequences of research participation for behaviors being investigated do exist, although little can be securely known about the conditions under which they operate, their mechanisms of effects, or their magnitudes. New concepts are needed to guide empirical studies. Copyright © 2014 The Authors. Published by Elsevier Inc. All rights reserved.

  11. Learning styles in old age: an aged between research participants of a university opened for seniors

    Directory of Open Access Journals (Sweden)

    Ana Luiza Andrade

    2013-05-01

    Full Text Available It is known that learning refers to how beings acquire new knowledge, develop skills and change behavior. Thus, knowing the learning styles of individuals is important, both for those who learn how to teach. In this sense, this research project aimed to describe the sociodemographic characteristics of the sample, identify the predominant learning styles of these individuals and see if there is a correlation between learning styles with sociodemographic variables. The sample consisted of 248 elderly participants in the study "Continuing Education - Benefits of the Open University of the Third Age EACH USP", funded by the National Institute for Educational Studies and Research Teixeira (INEP| Ministry of Education. We used a protocol that included sociodemographic questionnaire and the Learning Style Inventory (Learning Style Inventory - LSI by David A. Kolb. Descriptive analysis and inferential analysis. The dominant learning style was the assimilator and identified the association between learning styles of older people and sex (p = 0.0372, age (p = 0.0450, schooling for males (p = 0.0155 and sex for seniors with even the elementary school level (p = 0.0166. The results of this study are in line with theoretical perspectives and findings in the literature with regard to sample characteristics and learning styles identified. Future studies should be conducted in order to investigate more about the topic of learning in the elderly.

  12. Partnership with an African American sorority to enhance participation in cancer genetics research.

    Science.gov (United States)

    Olsen, Sharon J; Malvern, Kathryn T; May, Betty J; Jenkins, Issie L; Griffin, Constance A

    2008-01-01

    Reduced minority participation in clinical research challenges researchers to consider novel recruitment modalities. This study describes a formal partnership between the National Educational Foundation of the Zeta Phi Beta Sorority and the Mid-Atlantic Cancer Genetics Network. The goal was to enhance awareness about inherited breast cancer and to increase enrollment in the national Cancer Genetics Network. In this descriptive, pilot study, two recruitment strategies across four states were undertaken: an onsite educational session at four Annual State Leadership Conferences and a 2-tiered direct mail campaign to the sorority membership. Recruitment methods targeted over 1,200 well-educated African American women. Of the 279 attendees at the state conference educational sessions, only 3 women meeting the high risk eligibility requirement enrolled. Direct mail recruitment elicited 24 eligible women. Lessons learned are described. Despite low accrual, the partnership laid a foundation for broader collaboration with the Zeta Phi Beta Sorority. In the future, collaboration with minority sororities and fraternities as part of standard registry recruitment should be explored. Copyright 2008 S. Karger AG, Basel.

  13. Research Steps Towards Human Sequence Evaluation

    Science.gov (United States)

    Gonzàlez, Jordi; Roca, F. Xavier; Villanueva, Juan J.

    Human Sequence Evaluation (HSE) concentrates on how to extract descriptions of human behaviour from videos in a restricted discourse domain, such as (i) pedestrians crossing inner-city roads where pedestrians appear approaching or waiting at stops of busses or trams, and (ii) humans in indoor worlds like an airport hall, a train station, or a lobby. These discourse domains allow exploring a coherent evaluation of human movements and facial expressions across a wide variation of scale. This general approach lends itself to various cognitive surveillance scenarios at varying degrees of resolution: from wide-field-of-view multiple-agent scenes, through to more specific inferences of emotional state that could be elicited from high resolution imagery of faces. The true challenge of HSE will consist of the development of a system facility which starts with basic knowledge about pedestrian behaviour in the chosen discourse domain, but could cluster evaluation results into semantically meaningful subsets of behaviours. The envisaged system will comprise an internal logic-based representation which enables it to comment each individual subset, giving natural language explanations of why the system has created the subset in question.

  14. Research Professorship on International Human Rights | IDRC ...

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

    Toward a Regional Security Architecture for the Horn of Africa - Phase II. The Horn of Africa region has endured decades of destruction and human suffering due to long and interrelated wars. View moreToward a Regional Security Architecture for the Horn of Africa - Phase II ...

  15. Development, implementation and critique of a bioethics framework for pharmaceutical sponsors of human biomedical research.

    Science.gov (United States)

    Van Campen, Luann E; Therasse, Donald G; Klopfenstein, Mitchell; Levine, Robert J

    2015-11-01

    Pharmaceutical human biomedical research is a multi-dimensional endeavor that requires collaboration among many parties, including those who sponsor, conduct, participate in, or stand to benefit from the research. Human subjects' protections have been promulgated to ensure that the benefits of such research are accomplished with respect for and minimal risk to individual research participants, and with an overall sense of fairness. Although these protections are foundational to clinical research, most ethics guidance primarily highlights the responsibilities of investigators and ethics review boards. Currently, there is no published resource that comprehensively addresses bioethical responsibilities of industry sponsors; including their responsibilities to parties who are not research participants, but are, nevertheless key stakeholders in the endeavor. To fill this void, in 2010 Eli Lilly and Company instituted a Bioethics Framework for Human Biomedical Research. This paper describes how the framework was developed and implemented and provides a critique based on four years of experience. A companion article provides the actual document used by Eli Lilly and Company to guide ethical decisions regarding all phases of human clinical trials. While many of the concepts presented in this framework are not novel, compiling them in a manner that articulates the ethical responsibilities of a sponsor is novel. By utilizing this type of bioethics framework, we have been able to develop bioethics positions on various topics, provide research ethics consultations, and integrate bioethics into the daily operations of our human biomedical research. We hope that by sharing these companion papers we will stimulate discussion within and outside the biopharmaceutical industry for the benefit of the multiple parties involved in pharmaceutical human biomedical research.

  16. The research trends of Arts, Humanities and Social Sciences ...

    African Journals Online (AJOL)

    The Arts, Humanities and Social Sciences departments play a fundamental role in university education and in promoting the vision and mission of the University of Zululand. This paper explores definitions of Humanities and the Social Sciences, and the terms 'research' and 'research output', and examines the status and ...

  17. Subjective Reactions to International Research Participation: An Illustration of Ethical Considerations With Women Heading Households in Sri Lanka.

    Science.gov (United States)

    Lambert, Jessica E; Banford Witting, Alyssa; Ponnamperuma, Lakmal; Wickrama, Thulitha

    2017-06-19

    here are unique ethical considerations in conducting international research with war and disaster-affected populations that are important for ensuring adequate protection of participants. Of particular importance is the distress that participants may experience as a result of being asked about traumatic stressors, psychological symptoms, and life problems. In this study, trauma-affected Tamil women in Eastern Sri Lanka were asked to report on their research-participation experience after taking part in a larger study on risk and resiliency. Results indicated that most participants experienced emotional upset as a result of taking part in the study. However, the degree of distress was generally not more than they anticipated, and most participants reported they would have participated had they known in advance how they would feel. Most participants perceived some benefit as a result of participating and agreed that items were personally relevant. Emotional distress from participation positively correlated with culturally specific symptoms of anxiety and depression. Contextual stressors and social support were not associated with participation-related distress. We discuss these findings as well as general issues that might arise in international research with trauma-affected populations. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

  18. Four years of REU in South Texas: Fostering the Participation of Hispanic Students in Marine Science Research

    Science.gov (United States)

    Buskey, E. J.; Erdner, D.

    2011-12-01

    Our REU site is a ten-week summer program that is currently in its fourth year and has served 37 undergraduate students in that time. The range of environments present in south Texas, including barrier islands, estuaries and hypersaline lagoons, and the inherent climatic variability of the region make it an excellent natural laboratory for studying the effects of both natural and human-driven change. REU projects to date have focused on many of the pressing environmental concerns in the region, including the impacts of land use and freshwater demand on the transport of water and waterborne constituents to coastal waters, harmful algal blooms, effects of nutrient loads on coastal ecosystems, and hypoxia. The program begins with a 2 day research cruise that serves as an immediate introduction to local biota and methods in marine science, and it brings the students and mentors together as a group in a more informal setting. The students then carry out independent research projects under the mentorship of a faculty member, and attend workshops on responsible research, graduate school, and science careers. Our program also benefits from a close interaction with the Mission-Aransas National Estuarine Research Reserve, exposing the students to applied research of relevance to coastal management issues. One of the primary goals of our program is to foster the retention of underrepresented groups, particularly Hispanics, in Science, Technology, Engineering, and Mathematics (STEM) fields by increasing their participation in undergraduate research experiences. We have targeted Hispanic students because our institute is located in a state where 37% of the population is Hispanic, and in a region where the proportion of Hispanic students is even higher. Our recruiting efforts have included advertising the program via in-person presentations at minority serving institutions (UT El Paso, UT San Antonio), and on list-serves for professional societies and sites at minority serving

  19. The development of a research human milk bank.

    Science.gov (United States)

    Geraghty, Sheela R; Davidson, Barbara S; Warner, Barbara B; Sapsford, Amy L; Ballard, Jeanne L; List, Betsy A; Akers, Rachel; Morrow, Ardythe L

    2005-02-01

    Although there are well-established clinical human milk banks in the United States, there are no milk banks specifically intended to foster research on human milk. The authors' goal was to establish a milk bank with a core data set to support exploratory and hypothesis-driven studies on human milk. Donations to the Cincinnati Children's Research Human Milk Bank are accepted within the context of ongoing, hypothesis-driven research or on an ad hoc basis. Donors must give informed consent, and scientists wishing to use the samples must have Institutional review board approval for their use. Development of more research human milk banks can potentially provide resources for multidisciplinary collaboration and advance the study of human milk and lactation.

  20. The gap between research and practice: a replication study on the HR professionals' beliefs about effective human resource practices

    NARCIS (Netherlands)

    Sanders, Karin; van Riemsdijk, Maarten; Groen, B.A.C.

    2008-01-01

    In 2002 Rynes, Colbert and Brown asked human resource (HR) professionals to what extent they agreed with various HR research findings. Responses from 959 American participants showed that there are large discrepancies between research findings and practitioners' beliefs about effective human

  1. Research on Normal Human Plantar Pressure Test

    Directory of Open Access Journals (Sweden)

    Liu Xi Yang

    2016-01-01

    Full Text Available FSR400 pressure sensor, nRF905 wireless transceiver and MSP40 SCM are used to design the insole pressure collection system, LabVIEW is used to make HMI of data acquisition, collecting a certain amount of normal human foot pressure data, statistical analysis of pressure distribution relations about five stages of swing phase during walking, using the grid closeness degree to identify plantar pressure distribution pattern recognition, and the algorithm simulation, experimental results demonstrated this method feasible.

  2. Animal Models and Bone Histomorphometry: Translational Research for the Human Research Program

    Science.gov (United States)

    Sibonga, Jean D.

    2010-01-01

    This slide presentation reviews the use of animal models to research and inform bone morphology, in particular relating to human research in bone loss as a result of low gravity environments. Reasons for use of animal models as tools for human research programs include: time-efficient, cost-effective, invasive measures, and predictability as some model are predictive for drug effects.

  3. Avoiding piecemeal research on participation in cervical cancer screening: the advantages of a social identity framework

    National Research Council Canada - National Science Library

    Tribe, Candice; Webb, Janine

    2014-01-01

    ...  The aim of this study is to show how consideration of a broader definition of participation and better integration of the theoretical conceptualization of participation in cervical cancer screening...

  4. Toward Multimodal Human-Robot Interaction to Enhance Active Participation of Users in Gait Rehabilitation.

    Science.gov (United States)

    Gui, Kai; Liu, Honghai; Zhang, Dingguo

    2017-11-01

    Robotic exoskeletons for physical rehabilitation have been utilized for retraining patients suffering from paraplegia and enhancing motor recovery in recent years. However, users are not voluntarily involved in most systems. This paper aims to develop a locomotion trainer with multiple gait patterns, which can be controlled by the active motion intention of users. A multimodal human-robot interaction (HRI) system is established to enhance subject's active participation during gait rehabilitation, which includes cognitive HRI (cHRI) and physical HRI (pHRI). The cHRI adopts brain-computer interface based on steady-state visual evoked potential. The pHRI is realized via admittance control based on electromyography. A central pattern generator is utilized to produce rhythmic and continuous lower joint trajectories, and its state variables are regulated by cHRI and pHRI. A custom-made leg exoskeleton prototype with the proposed multimodal HRI is tested on healthy subjects and stroke patients. The results show that voluntary and active participation can be effectively involved to achieve various assistive gait patterns.

  5. “Makes you proud to be black eh?”: Reflections on meaningful Indigenous research participation

    Directory of Open Access Journals (Sweden)

    Kelly Jenny

    2012-08-01

    Full Text Available Abstract Introduction This article outlines the meaningful participation of eight Aboriginal and Torres Strait Islander community members employed as community researchers investigating the impact of pandemic influenza in rural and remote Indigenous communities in Australia. Aboriginal and Torres Strait Islander participation is now a requirement of health research involving Aboriginal and Torres Strait Islander communities. There is a growing literature on the different approaches to such involvement. Fundamental to this literature is an acknowledgement that Indigenous communities are no longer prepared to be research objects for external, mostly non-Indigenous researchers, and demand a role in decisions about what is researched and how it will be researched. In this paper, we describe the protracted process for site identification and recruitment and training of community researchers. We focus on the backgrounds of the Indigenous researchers and their motivations for involvement, and the strengths and challenges posed by Indigenous people researching in their own communities. Throughout the paper our concern is to document how genuine participation and the building of research capacity can occur. Discussion A key feature of the research was the employment, training and strengthening the capacity of local Aboriginal and Torres Strait Islander community members in the role of community researchers. A series of training workshops were conducted in northern Australia and focussed on qualitative research methods, including data collection, data analysis and writing. The Indigenous researchers collected the community-based data, and worked in partnership with experienced academic researchers in the analysis and compilation of community reports. Parts of those community reports, as well as additional information supplied by the community researchers, forms the basis of this article. As the demand increases for involvement of Indigenous community

  6. Confidentiality, Privacy, and Respect: Experiences of Female Sex Workers Participating in HIV Research in Andhra Pradesh, India

    Science.gov (United States)

    Reed, Elizabeth; Khoshnood, Kaveh; Blankenship, Kim M.; Fisher, Celia B.

    2014-01-01

    Female sex workers (FSW) from Andhra Pradesh, India who had participated in HIV research were interviewed to examine participant perspectives on research ethics. Content analysis indicated that aspects of the consent process, staff gender and demeanor, study environment, survey content, time requirements for study participation, and perceived FSW community support for research were key factors influencing whether FSW perceived their confidentiality and privacy had been maintained, and whether they felt the study was conducted respectfully. Findings suggest that partnership with community-based organizations and investigation of participant’s experiences in HIV prevention research can provide critical information to best inform research ethics protocols, a particular priority among research studies with highly stigmatized populations, such as FSW. PMID:24572080

  7. Stem Cells: A Renaissance in Human Biology Research.

    Science.gov (United States)

    Wu, Jun; Izpisua Belmonte, Juan Carlos

    2016-06-16

    The understanding of human biology and how it relates to that of other species represents an ancient quest. Limited access to human material, particularly during early development, has restricted researchers to only scratching the surface of this inherently challenging subject. Recent technological innovations, such as single cell "omics" and human stem cell derivation, have now greatly accelerated our ability to gain insights into uniquely human biology. The opportunities afforded to delve molecularly into scarce material and to model human embryogenesis and pathophysiological processes are leading to new insights of human development and are changing our understanding of disease and choice of therapy options. Copyright © 2016 Elsevier Inc. All rights reserved.

  8. Human Research Program Integrated Research Plan: December 20, 2007, Interim Baseline

    Science.gov (United States)

    2008-01-01

    The Human Research Program (HRP) delivers human health and performance countermeasures, knowledge, technologies, and tools to enable safe, reliable, and productive human space exploration. This Integrated Research Plan (IRP) describes the program s research activities that are intended to address the needs of human space exploration and serve HRP customers. The timescale of human space exploration is envisioned to take many decades. The IRP illustrates the program s research plan through the timescale of early lunar missions of extended duration. The document serves several purposes for the Human Research Program: The IRP provides a means to assure that the most significant risks to human space explorers are being adequately mitigated and/or addressed, The IRP shows the relationship of research activities to expected outcomes and need dates, The IRP shows the interrelationships among research activities that may interact to produce products that are integrative or cross defined research disciplines, The IRP illustrates the non-deterministic nature of research and technology activities by showing expected decision points and potential follow-on activities, The IRP shows the assignments of responsibility within the program organization and, as practical, the intended solicitation approach, The IRP shows the intended use of research platforms such as the International Space Station, NASA Space Radiation Laboratory, and various space flight analogs. The IRP does not show all budgeted activities of the Human research program, as some of these are enabling functions, such as management, facilities and infrastructure

  9. An Analysis of Female Lecturers' Participation in Civil Engineering Research and Development Activities at One Polytechnic in Zimbabwe

    Science.gov (United States)

    Chikuvadze, Pinias; Matswetu, Vimbai Sharon; Mugijima, Samuel

    2015-01-01

    This study sought to explore female lecturers' participation in civil engineering research and development activities at one polytechnic in Zimbabwe. Case study design was chosen for this study to make predictions, narration of events, comparisons and drawing of conclusions. The female lecturers were purposively sampled to participate in the…

  10. Factors Associated with Research Anxiety of University Human Resource Education Faculty

    Science.gov (United States)

    Higgins, Chadwick C.; Kotrlik, Joe W.

    2006-01-01

    Factors associated with research anxiety of university faculty members in human resource educations fields were examined. Most of the participating faculty members were male and half were full professors. The mean age was 52 and all but one held a doctorate. Relationships between selected demographic characteristics and The Higgins-Kotrlik…

  11. 76 FR 28056 - National Human Genome Research Institute; Notice of Closed Meetings

    Science.gov (United States)

    2011-05-13

    ... HUMAN SERVICES National Institutes of Health National Human Genome Research Institute; Notice of Closed... of Committee: National Human Genome Research Institute Initial Review Group, Genome Research Review... Scientific Review, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD...

  12. Human Endothelial Cell Models in Biomaterial Research.

    Science.gov (United States)

    Hauser, Sandra; Jung, Friedrich; Pietzsch, Jens

    2017-03-01

    Endothelial cell (EC) models have evolved as important tools in biomaterial research due to ubiquitously occurring interactions between implanted materials and the endothelium. However, screening the available literature has revealed a gap between material scientists and physiologists in terms of their understanding of these biomaterial-endothelium interactions and their relative importance. Consequently, EC models are often applied in nonphysiological experimental setups, or too extensive conclusions are drawn from their results. The question arises whether this might be one reason why, among the many potential biomaterials, only a few have found their way into the clinic. In this review, we provide an overview of established EC models and possible selection criteria to enable researchers to determine the most reliable and relevant EC model to use. Copyright © 2016 Elsevier Ltd. All rights reserved.

  13. The ethics of cloning and human embryo research.

    Science.gov (United States)

    Saran, Madeleine

    2002-01-01

    The successful cloning experiments that led to Dolly in 1997 have raised many ethical and policy questions. This paper will focus on cloning research in human embryonic cells. The possible gains of the research will be judged against the moral issues of doing research on a person. This paper concludes that while the embryo has some moral status, its moral status is outweighed by the multitude of benefits that embryonic stem cell research will bring to humanity. Policy suggestions are given for dealing with this new and developing field of stem cell research.

  14. Differences Between Treatment-Seeking and Nontreatment-Seeking Alcohol-Dependent Research Participants: An Exploratory Analysis.

    Science.gov (United States)

    Rohn, Matthew C H; Lee, Mary R; Kleuter, Samuel B; Schwandt, Melanie L; Falk, Daniel E; Leggio, Lorenzo

    2017-02-01

    Alcoholism is a chronic relapsing disorder with complex behavioral and functional heterogeneity. To date, attempts to characterize subgroups of alcohol-dependent (AD) individuals have largely been focused on categorical distinctions based on behaviors such as ability to abstain, age of onset, and drinking motives, but these have failed to yield predictors of treatment response and disease course. The distinction between AD individuals who are or are not interested in treatment holds significant implications for interpreting results of human laboratory studies with nontreatment seekers and clinical trials with treatment-seeking AD patients. However, despite their crucial role in alcohol-related research, these 2 groups are poorly defined. In this exploratory analysis, we attempt to better define the phenotypic differences between these 2 experimentally relevant populations. We analyzed data from AD individuals who participated in screening protocols to evaluate their suitability for participation in either treatment or nontreatment research studies at NIAAA. Scores on individual measures from a battery of behavioral, neuropsychological, and blood laboratory measures were compared between those who presented seeking treatment for AD and those who were not seeking treatment. Differences in each measure were assessed between the 2 groups. In addition, we explored whether significant differences were apparent when drinking behavior was used as a covariate. Treatment seekers manifested more impairment compared to nontreatment seekers on a wide variety of measures in the following categories: alcohol drinking, personality, impulsivity, trauma/stress, cognition, aggression, mood, and liver enzyme tests. Treatment seekers endorsed a greater number of AD criteria. Several measures including elevations in liver enzyme tests remained significantly different between the 2 groups when average daily alcohol consumption per drinking day was used as a covariate. Treatment

  15. Human Genome Program Report. Part 2, 1996 Research Abstracts

    Science.gov (United States)

    1997-11-01

    This report contains Part 2 of a two-part report to reflect research and progress in the US Department of Energy Human Genome Program from 1994 through 1996, with specified updates made just before publication. Part 2 consists of 1996 research abstracts. Attention is focused on the following: sequencing; mapping; informatics; ethical, legal, and social issues; infrastructure; and small business innovation research.

  16. Human genome program report. Part 2, 1996 research abstracts

    Energy Technology Data Exchange (ETDEWEB)

    NONE

    1997-11-01

    This report contains Part 2 of a two-part report to reflect research and progress in the US Department of Energy Human Genome Program from 1994 through 1996, with specified updates made just before publication. Part 2 consists of 1996 research abstracts. Attention is focused on the following: sequencing; mapping; informatics; ethical, legal, and social issues; infrastructure; and small business innovation research.

  17. Ethics of Research Involving Human Subjects in Criminal Justice

    Science.gov (United States)

    Bloomberg, Seth Allan; Wilkins, Leslie T.

    1977-01-01

    Research in criminal justice involving human subjects has increased greatly, yet we have no code of ethics to guide such research. This paper argues that the primary purpose of a code should be protection of these research subjects, who are especially susceptible to mistreatment because of their prisoner status. (Author)

  18. Ethical Issues in the Use of Humans for Research.

    Science.gov (United States)

    Bashaw, W. L.

    The APA Ethical Principles, the University of Georgia policy, standard research texts, and research literature on specific methodologies, all in relation to ethical issues in human research, are discussed. The 10 APA principles state, in essence, that the investigator is responsible for what happens, that confidentiality and the protection of the…

  19. Process error rates in general research applications to the Human ...

    African Journals Online (AJOL)

    Objective. To examine process error rates in applications for ethics clearance of health research. Methods. Minutes of 586 general research applications made to a human health research ethics committee (HREC) from April 2008 to March 2009 were examined. Rates of approval were calculated and reasons for requiring ...

  20. Measuring coercion to participate in research within a doubly vulnerable population: initial development of the coercion assessment scale.

    Science.gov (United States)

    Dugosh, Karen Leggett; Festinger, David S; Croft, Jason R; Marlowe, Douglas B

    2010-03-01

    Despite many efforts aimed to ensure that research participation is autonomous and not coerced, there exists no reliable and valid measure of perceived coercion for the doubly vulnerable population of substance-abusing offenders. The current study describes the development and initial validation of an instrument measuring perceived coercion to participate in research among substance-abusing offenders. The results indicated that a substantial number of individuals report feeling coerced to participate in the study. In addition, the instrument has adequate levels of internal consistency, a one-dimensional factor structure, and evidence of discriminative validity. This study provides initial support for the instrument's validity and clinical utility.

  1. The communication of pharmacogenetic research results: participants weigh in on their informational needs in a pilot study.

    Science.gov (United States)

    Madadi, Parvaz; Joly, Yann; Avard, Denise; Chitayat, David C; Smith, M Anne; D Ross, Colin J; Carleton, Bruce C; Hayden, Michael R; Koren, Gideon

    2011-01-01

    In this brief investigation, the informational needs of research participants [n = 62; mothers who had breastfed, taken codeine, and participated in a pharmacogenetic study] were probed during a counselling session in which they received their CYP2D6 pharmacogenetic research results and overall study results. In addition to the standard information, developed by a multidisciplinary team and provided to the participants, 38% of individuals had further questions related to potential adverse effects in babies, future codeine or medication use, heredity, and consequences for policies and programmes. The diversity and complexity of the questions raised support the need to communicate the results in the context of personalized genetic counselling information sessions.

  2. Factors influencing community participation in control and related operational research for urogenital schistosomiasis and soil-transmitted helminths in rural villages of Kwale County, coastal Kenya

    Science.gov (United States)

    Macharia, Jacinta Wairimu; Ng'ang'a, Zipporah W; Njenga, Sammy Michugu

    2016-01-01

    Introduction helminthic infections caused by soil-transmitted helminths (STH) and schistosomes are among the most prevalent afflictions of humans who live in areas of poverty. An operational research was undertaken in 5 villages of Kwale County during a pilot control programme which included both the adults and school going children. Willingness of community members to participate in the treatment as well as in the research is critical. A cross sectional study sought to determine factors influencing community participation in control and related operational research and assess the treatment coverage for urogenital schistosomiasis and hookworms in rural villages of Kwale County. Methods cross-sectional survey utilized quantitative and qualitative methods of data collection. A total of 220 households were recruited and household heads interviewed. Bivariate analysis was used to test association between different independent and dependent factors. Multivariate analysis was done using binary logistic regression to control for confounders and effect modification. Qualitative data was transcribed, coded and analyzed thematically. Results religion and levels of income were significantly (P =0.04 and P = 0.026 respectively) associated with participation in the research and control programme, history of ever suffering from schistosomiasis and intestinal worms was found to be significantly (P = 0.008) associated with participation in the research. The study established that 82% (178) of the respondents received treatment for urogenital schistosomiasis and hookworms and 67% (146) of the respondents had participated in the research. Conclusion this information will be useful in promoting health, enhancing learning and behaviour changes which will lead to increased community participation in similar disease control. PMID:27642474

  3. Undergraduate students' development of social, cultural, and human capital in a networked research experience

    Science.gov (United States)

    Thompson, Jennifer Jo; Conaway, Evan; Dolan, Erin L.

    2016-12-01

    Recent calls for reform in undergraduate biology education have emphasized integrating research experiences into the learning experiences of all undergraduates. Contemporary science research increasingly demands collaboration across disciplines and institutions to investigate complex research questions, providing new contexts and models for involving undergraduates in research. In this study, we examined the experiences of undergraduates participating in a multi-institution and interdisciplinary biology research network. Unlike the traditional apprenticeship model of research, in which a student participates in research under the guidance of a single faculty member, students participating in networked research have the opportunity to develop relationships with additional faculty and students working in other areas of the project, at their own and at other institutions. We examined how students in this network develop social ties and to what extent a networked research experience affords opportunities for students to develop social, cultural, and human capital. Most studies of undergraduate involvement in science research have focused on documenting student outcomes rather than elucidating how students gain access to research experiences or how elements of research participation lead to desired student outcomes. By taking a qualitative approach framed by capital theories, we have identified ways that undergraduates utilize and further develop various forms of capital important for success in science research. In our study of the first 16 months of a biology research network, we found that undergraduates drew upon a combination of human, cultural, and social capital to gain access to the network. Within their immediate research groups, students built multidimensional social ties with faculty, peers, and others, yielding social capital that can be drawn upon for information, resources, and support. They reported developing cultural capital in the form of learning to

  4. Developing a Collaborative Agenda for Humanities and Social Scientific Research on Laboratory Animal Science and Welfare

    Science.gov (United States)

    Davies, Gail F.; Greenhough, Beth J; Hobson-West, Pru; Kirk, Robert G. W.; Applebee, Ken; Bellingan, Laura C.; Berdoy, Manuel; Buller, Henry; Cassaday, Helen J.; Davies, Keith; Diefenbacher, Daniela; Druglitrø, Tone; Escobar, Maria Paula; Friese, Carrie; Herrmann, Kathrin; Hinterberger, Amy; Jarrett, Wendy J.; Jayne, Kimberley; Johnson, Adam M.; Johnson, Elizabeth R.; Konold, Timm; Leach, Matthew C.; Leonelli, Sabina; Lewis, David I.; Lilley, Elliot J.; Longridge, Emma R.; McLeod, Carmen M.; Miele, Mara; Nelson, Nicole C.; Ormandy, Elisabeth H.; Pallett, Helen; Poort, Lonneke; Pound, Pandora; Ramsden, Edmund; Roe, Emma; Scalway, Helen; Schrader, Astrid; Scotton, Chris J.; Scudamore, Cheryl L.; Smith, Jane A.; Whitfield, Lucy; Wolfensohn, Sarah

    2016-01-01

    Improving laboratory animal science and welfare requires both new scientific research and insights from research in the humanities and social sciences. Whilst scientific research provides evidence to replace, reduce and refine procedures involving laboratory animals (the ‘3Rs’), work in the humanities and social sciences can help understand the social, economic and cultural processes that enhance or impede humane ways of knowing and working with laboratory animals. However, communication across these disciplinary perspectives is currently limited, and they design research programmes, generate results, engage users, and seek to influence policy in different ways. To facilitate dialogue and future research at this interface, we convened an interdisciplinary group of 45 life scientists, social scientists, humanities scholars, non-governmental organisations and policy-makers to generate a collaborative research agenda. This drew on methods employed by other agenda-setting exercises in science policy, using a collaborative and deliberative approach for the identification of research priorities. Participants were recruited from across the community, invited to submit research questions and vote on their priorities. They then met at an interactive workshop in the UK, discussed all 136 questions submitted, and collectively defined the 30 most important issues for the group. The output is a collaborative future agenda for research in the humanities and social sciences on laboratory animal science and welfare. The questions indicate a demand for new research in the humanities and social sciences to inform emerging discussions and priorities on the governance and practice of laboratory animal research, including on issues around: international harmonisation, openness and public engagement, ‘cultures of care’, harm-benefit analysis and the future of the 3Rs. The process outlined below underlines the value of interdisciplinary exchange for improving communication across

  5. Developing a Collaborative Agenda for Humanities and Social Scientific Research on Laboratory Animal Science and Welfare.

    Directory of Open Access Journals (Sweden)

    Gail F Davies

    Full Text Available Improving laboratory animal science and welfare requires both new scientific research and insights from research in the humanities and social sciences. Whilst scientific research provides evidence to replace, reduce and refine procedures involving laboratory animals (the '3Rs', work in the humanities and social sciences can help understand the social, economic and cultural processes that enhance or impede humane ways of knowing and working with laboratory animals. However, communication across these disciplinary perspectives is currently limited, and they design research programmes, generate results, engage users, and seek to influence policy in different ways. To facilitate dialogue and future research at this interface, we convened an interdisciplinary group of 45 life scientists, social scientists, humanities scholars, non-governmental organisations and policy-makers to generate a collaborative research agenda. This drew on methods employed by other agenda-setting exercises in science policy, using a collaborative and deliberative approach for the identification of research priorities. Participants were recruited from across the community, invited to submit research questions and vote on their priorities. They then met at an interactive workshop in the UK, discussed all 136 questions submitted, and collectively defined the 30 most important issues for the group. The output is a collaborative future agenda for research in the humanities and social sciences on laboratory animal science and welfare. The questions indicate a demand for new research in the humanities and social sciences to inform emerging discussions and priorities on the governance and practice of laboratory animal research, including on issues around: international harmonisation, openness and public engagement, 'cultures of care', harm-benefit analysis and the future of the 3Rs. The process outlined below underlines the value of interdisciplinary exchange for improving

  6. Developing a Collaborative Agenda for Humanities and Social Scientific Research on Laboratory Animal Science and Welfare.

    Science.gov (United States)

    Davies, Gail F; Greenhough, Beth J; Hobson-West, Pru; Kirk, Robert G W; Applebee, Ken; Bellingan, Laura C; Berdoy, Manuel; Buller, Henry; Cassaday, Helen J; Davies, Keith; Diefenbacher, Daniela; Druglitrø, Tone; Escobar, Maria Paula; Friese, Carrie; Herrmann, Kathrin; Hinterberger, Amy; Jarrett, Wendy J; Jayne, Kimberley; Johnson, Adam M; Johnson, Elizabeth R; Konold, Timm; Leach, Matthew C; Leonelli, Sabina; Lewis, David I; Lilley, Elliot J; Longridge, Emma R; McLeod, Carmen M; Miele, Mara; Nelson, Nicole C; Ormandy, Elisabeth H; Pallett, Helen; Poort, Lonneke; Pound, Pandora; Ramsden, Edmund; Roe, Emma; Scalway, Helen; Schrader, Astrid; Scotton, Chris J; Scudamore, Cheryl L; Smith, Jane A; Whitfield, Lucy; Wolfensohn, Sarah

    2016-01-01

    Improving laboratory animal science and welfare requires both new scientific research and insights from research in the humanities and social sciences. Whilst scientific research provides evidence to replace, reduce and refine procedures involving laboratory animals (the '3Rs'), work in the humanities and social sciences can help understand the social, economic and cultural processes that enhance or impede humane ways of knowing and working with laboratory animals. However, communication across these disciplinary perspectives is currently limited, and they design research programmes, generate results, engage users, and seek to influence policy in different ways. To facilitate dialogue and future research at this interface, we convened an interdisciplinary group of 45 life scientists, social scientists, humanities scholars, non-governmental organisations and policy-makers to generate a collaborative research agenda. This drew on methods employed by other agenda-setting exercises in science policy, using a collaborative and deliberative approach for the identification of research priorities. Participants were recruited from across the community, invited to submit research questions and vote on their priorities. They then met at an interactive workshop in the UK, discussed all 136 questions submitted, and collectively defined the 30 most important issues for the group. The output is a collaborative future agenda for research in the humanities and social sciences on laboratory animal science and welfare. The questions indicate a demand for new research in the humanities and social sciences to inform emerging discussions and priorities on the governance and practice of laboratory animal research, including on issues around: international harmonisation, openness and public engagement, 'cultures of care', harm-benefit analysis and the future of the 3Rs. The process outlined below underlines the value of interdisciplinary exchange for improving communication across

  7. Applied human factors research at the NASA Johnson Space Center Human-Computer Interaction Laboratory

    Science.gov (United States)

    Rudisill, Marianne; Mckay, Timothy D.

    1990-01-01

    The applied human factors research program performed at the NASA Johnson Space Center's Human-Computer Interaction Laboratory is discussed. Research is conducted to advance knowledge in human interaction with computer systems during space crew tasks. In addition, the Laboratory is directly involved in the specification of the human-computer interface (HCI) for space systems in development (e.g., Space Station Freedom) and is providing guidelines and support for HCI design to current and future space missions.

  8. An evaluation of orthopaedic nurses’ participation in an educational intervention promoting research utilization – A triangulation convergence model

    DEFF Research Database (Denmark)

    Berthelsen, Connie Bøttcher; Hølge-Hazelton, Bibi

    2016-01-01

    Aims and objectives To describe the orthopaedic nurses' experiences regarding the relevance of an educational intervention and their personal and contextual barriers to participation in the intervention. Background One of the largest barriers against nurses' research usage in clinical practice...... is the lack of participation. A previous survey identified 32 orthopaedic nurses as interested in participating in nursing research. An educational intervention was conducted to increase the orthopaedic nurses' research knowledge and competencies. However, only an average of six nurses participated. Design...... A triangulation convergence model was applied through a mixed methods design to combine quantitative results and qualitative findings for evaluation. Methods Data were collected from 2013–2014 from 32 orthopaedic nurses in a Danish regional hospital through a newly developed 21-item questionnaire and two focus...

  9. An evaluation of orthopaedic nurses’ participation in an educational intervention promoting research usage – a triangulation convergence model

    DEFF Research Database (Denmark)

    Berthelsen, Connie; Hølge-Hazelton, Bibi

    2016-01-01

    is the lack of participation. A previous survey identified 32 orthopaedic nurses as interested in participating in nursing research. An educational intervention was conducted to increase the orthopaedic nurses' research knowledge and competencies. However, only an average of six nurses participated. Design...... A triangulation convergence model was applied through a mixed methods design to combine quantitative results and qualitative findings for evaluation. Methods Data were collected from 2013–2014 from 32 orthopaedic nurses in a Danish regional hospital through a newly developed 21-item questionnaire and two focus......Aims and objectives To describe the orthopaedic nurses' experiences regarding the relevance of an educational intervention and their personal and contextual barriers to participation in the intervention. Background One of the largest barriers against nurses' research usage in clinical practice...

  10. Promoting translational research in human and veterinary medical virology.

    Science.gov (United States)

    Tang, Yi-Wei

    2013-07-26

    Translational research serves as a bench-to-field "translation" of basic scientific research into practical diagnostic procedures and therapies useful in human and veterinary clinical services. The productivity of translational research involving infectious diseases relevant to both human and animal health (e.g., influenza diagnosis and epidemiology using emerging molecular detection and identification methods) can be maximized when both human and veterinary medical virology disciplines are integrated. Influenza viruses are continually evolving through site-specific mutation and segment reassortment, and these processes occur in all potential carrier species - including birds, humans, and many agriculturally important animals. This evolutionary plasticity occasionally allows "novel" influenzas to move from animal hosts to humans, potentially causing destructive pandemics; therefore, a rapid laboratory technique that can detect and identify "novel" influenza viruses is clinically and epidemiologically desirable. A technique-focused translational research approach is pursued to enhance detection and characterization of emerging influenza viruses circulating in both humans and other animal hosts. The PLEX-ID System, which incorporates multi-locus PCR and electrospray ionization/mass spectrometry, uses deliberately nonspecific primers that amplify all known variants (all H/N subtypes) of influenza virus, including human, other mammalian, and avian influenzas, and is therefore likely to generate analyzable amplicons from any novel influenza that might emerge in any host. Novel technology development and implementation such as the PLEX-ID System forms a key component of human and veterinary medical virology translational research. Copyright © 2013 Elsevier B.V. All rights reserved.

  11. Teachers participate in the School of Rock research experience on board the JOIDES Resolution

    Science.gov (United States)

    Peart, L.; Cooper, S. K.; Collins, J.

    2009-12-01

    The School of Rock is the flagship professional development workshop of Deep Earth Academy, the education arm of the scientific ocean drilling program. During this unique event -a combination teacher research experience and professional development workshop - teachers and informal educators have the opportunity to sail aboard the JOIDES Resolution scientific ocean drilling vessel and/or spend time at the core repository in College Station, Texas. During both of these experiences, teachers are introduced to the operations of the vessel, the process of finding and processing core samples, the kinds of scientific analyses performed with them, what information we gain from these samples, and big-picture science stories into which this information feeds. During true inquiry-based exercises, they are exposed to broad background on geology and climate change, learn how to perform laboratory analyses on cores, and meet scientists and colleagues from around the country and the world. While on School of Rock, participants also consider the implications of this pre-historical data for predictions of Earth’s future and create and modify earth science curricula for use with their students and for posting on Deep Earth Academy’s interactive web site. They create blogs and answer questions from their students on the ship’s web portal: joidesresolution.org. In this session, presenters will share lessons learned from more than four years of School of Rock, how alumni are using what they gained from their experiences in their classrooms and informal science settings, show examples of outcomes that have resulted from the program and share plans for its future.

  12. [Progress of research on human tolerance to impact acceleration].

    Science.gov (United States)

    Liu, Bingkun; Ma, Honglei; Jiang, Shizhong

    2010-04-01

    Impact acceleration is one of the factors to which human body is exposed in aerospace exploring. When the impact level is greater than human tolerance, it usually results in human injuries which may be fatal. Therefore, in order to reduce or avert the risk of serious injury from crash impact, human tolerance to impact acceleration is a crucial consideration in aircraft since the beginning of aviation. The study on human tolerance to impact acceleration has become a cynosure in the realm of modern biomechanics. So this paper reviews the progress of the researches.

  13. From theory to practice: how to apply van Deth’s conceptual map in empirical political participation research

    DEFF Research Database (Denmark)

    Ohme, Jakob; de Vreese, Claes Holger; Albæk, Erik

    2017-01-01

    In a time when digitally networked and unconventional activities challenge our understanding of political participation, van Deth (Acta Polit 49(3):349–367, 2014) has developed a map to consolidate previous attempts at conceptualizing political participation. He suggests a framework operating...... with four distinct types of political participation that apply across time and context and therefore potentially may lead to higher comparability of results in participation research. However, his map faced criticism for not accounting for digital and other recent participatory activities, and so far...... of participation. We use 27 participatory activities from a national survey conducted in Denmark (N = 9125) to test van Deth’s framework. A confirmatory factor analysis demonstrates the existence of four distinct types of political participation, based on the sphere, the target, and the intention of activities...

  14. Understandings of genomic research in developing countries: a qualitative study of the views of MalariaGEN participants in Mali.

    Science.gov (United States)

    Traore, Karim; Bull, Susan; Niare, Alassane; Konate, Salimata; Thera, Mahamadou A; Kwiatkowski, Dominic; Parker, Michael; Doumbo, Ogobara K

    2015-06-16

    Obtaining informed consent for participation in genomic research in low-income settings presents specific ethical issues requiring attention. These include the challenges that arise when providing information about unfamiliar and technical research methods, the implications of complicated infrastructure and data sharing requirements, and the potential consequences of future research with samples and data. This study investigated researchers' and participants' parents' experiences of a consent process and understandings of a genome-wide association study of malaria involving children aged five and under in Mali. It aimed to inform best practices in recruiting participants into genomic research. A qualitative rapid ethical assessment was undertaken. Fifty-five semi-structured interviews were conducted with the parents of research participants. An additional nine semi-structured interviews were conducted with senior research scientists, research assistants and with a member of an ethics committee. A focus group with five parents of research participants and direct observations of four consent processes were also conducted. French and translated English transcripts were descriptively and thematically coded using OpenCode software. Participants' parents in the MalariaGEN study had differing understandings of the causes of malaria, the rationale for collecting blood samples, the purposes of the study and the kinds of information the study would generate. Genomic aspects of the research, including the gene/environment interaction underlying susceptibility or resistance to severe malaria, proved particularly challenging to explain and understand. This study identifies a number of areas to be addressed in the design of consent processes for genomic research, some of which require careful ethical analysis. These include determining how much information should be provided about differing aspects of the research and how best to promote understandings of genomic research. We

  15. Turning On and Tuning In: Media Participation in the Arts. Research Division Report #33.

    Science.gov (United States)

    Gray, Charles M.

    Data gleaned from the 1982, 1985, and 1992 Surveys of Public Participation in the Arts (SPPAs) were used in this analysis of participation in the arts via television, radio, and sound recordings. The arts examined were jazz, classical music, opera, musicals and operettas, plays, dance, and the visual arts. Selected findings are as follows: (1)…

  16. Public participation in genomics research in the Netherlands: Validating a measurement scale

    NARCIS (Netherlands)

    Dijkstra, Anne M.; Gutteling, Jan M.; Swart, Jac A.A.; Wieringa, Nicolien F.; Van der Windt, Henny J.; Seydel, E.R.

    2012-01-01

    Nowadays, new technologies, like genomics, cannot be developed without the support of the public. However, although interested, the public does not always actively participate in science issues when offered the opportunity via public participation activities. In a study aimed at validating a

  17. Visualising community: using participant-driven photo-elicitation for research and application

    Science.gov (United States)

    Paul M. Van Auken; Svein J. Frisvoll; Susan I. Stewart

    2010-01-01

    Despite a contemporary socio-culture revolving around cultural consumption of imagery, metaphors, representations and "gaze", photo-elicitation is a rarely used method for social scientists and planners to acquire knowledge. In this paper, we discuss participant-driven photo-elicitation, a process in which participant photos are paired with in-depth...

  18. Humans as a model species for sexual selection research

    Science.gov (United States)

    Miller, Carrie M.; Crouse, Kristin N.

    2017-01-01

    Ever since Darwin, questions about humans have driven sexual selection research. While studies of other organisms are often justified as useful for improving understanding of humans, humans themselves can be useful models. Although humans present some drawbacks as model organisms (complicated societies, slow reproduction and strong ethical constraints on experimental options), humans nonetheless offer many advantages (being abundant, accessible and having detailed historical records for some populations). As an additional challenge, humans exhibit a rather puzzling combination of traits. Some traits (pair-bonding, biparental care and modest sexual dimorphism in body size) suggest selection for monogamous mating, while other traits (including sexual dimorphism in body composition and appearance) suggest selection for polygyny. Such puzzles have motivated research on other species, resulting in a rich set of comparative data that provides insights into humans and other species. Recent studies of visual trait dimorphism suggest that human appearance reflects adaptation for multi-level societies, rather than high levels of polygyny. In addition to biological traits, human cultural traits have undergone rapid evolution. Changes in subsistence strategies profoundly affect opportunities for sexual selection. The enormous variability of human behaviour and ecology provides abundant opportunities to test key hypotheses, and poses challenging puzzles for future research. PMID:29118131

  19. An evaluation of orthopaedic nurses' participation in an educational intervention promoting research usage--a triangulation convergence model.

    Science.gov (United States)

    Berthelsen, Connie Bøttcher; Hølge-Hazelton, Bibi

    2016-03-01

    To describe the orthopaedic nurses' experiences regarding the relevance of an educational intervention and their personal and contextual barriers to participation in the intervention. One of the largest barriers against nurses' research usage in clinical practice is the lack of participation. A previous survey identified 32 orthopaedic nurses as interested in participating in nursing research. An educational intervention was conducted to increase the orthopaedic nurses' research knowledge and competencies. However, only an average of six nurses participated. A triangulation convergence model was applied through a mixed methods design to combine quantitative results and qualitative findings for evaluation. Data were collected from 2013-2014 from 32 orthopaedic nurses in a Danish regional hospital through a newly developed 21-item questionnaire and two focus group sessions. Data were first analysed using descriptive statistics (stata 12.0) and qualitative manifest content analysis. Second, the results were compared, contrasted and interpreted using international literature. The nurses experienced the intervention as a new way to focus on nursing research in practice. However, some nurses were not able to see the relevance of research usage in clinical practice. Nursing research was not a top priority for the nurses and their personal barriers for research usage during their working day were prioritising patients' and colleagues' well-being. Their colleagues' and head section nurses' lack of acceptance regarding participation in the teaching session was a contextual barrier for the nurses. The nurses were interested in participating in the intervention. However, some felt restricted by the research-practice gap and by diverse personal and contextual barriers. The knowledge derived from this study has high clinical and practical relevance and is currently used to facilitate the nurses' research usage in the orthopaedic department setting, by working around the

  20. Enhancing the Participation of African Americans in Health-Related Genetic Research: Findings of a Collaborative Academic and Community-Based Research Study

    Directory of Open Access Journals (Sweden)

    Sandra Millon Underwood

    2013-01-01

    Full Text Available The involvement of African Americans in research has long been expressed as a concern by the scientific community. While efforts have been undertaken to identify factors inhibiting the participation of African Americans in health-related research, few efforts have been undertaken to have highlight factors associated with their engagement of health-related research. An exploratory study of factors presumed to be associated with participation in health-related research was conducted among a nonprobability sample of African Americans (n=212 from a large urban community in the Midwest. The study was guided by a framework that hypothesized the influence of knowledge, beliefs, and perceptions about genetics and the involvement of providers in decision-making on willingness to participate in health-related genetic research. The results revealed that knowledge, beliefs, and perceptions about genetics and the involvement of providers were associated with willingness to engage in health-related genetic research (P<.05. The most interesting, however, was that 88.7% of the participants who had not previously been involved in a health-related study who expressed a willingness to participate reported that they “had never been asked.” Study findings suggest the need for research that further examines factors associated with the involvement of African Americans in health-related genetic research.

  1. Confidentiality, informed consent, and children's participation in research involving stored tissue samples: interviews with medical professionals from the Middle East.

    Science.gov (United States)

    Alahmad, Ghiath; Al Jumah, Mohammed; Dierickx, Kris

    2015-01-01

    Ethical issues regarding research biobanks continue to be a topic of intense debate, especially issues of confidentiality, informed consent, and child participation. Although considerable empirical literature concerning research biobank ethics exists, very little information is available regarding the opinions of medical professionals doing genetics research from the Middle East, especially Arabic speaking countries. Ethical guidelines for research biobanks are critically needed as some countries in the Middle East are starting to establish national research biobanks. Islam is the dominant religion in these countries, and it affects people's behavior and influences their positions. Moreover, communities in these countries enjoy a set of customs, traditions and social norms, and have social and familial structures that must be taken into account when developing research policies. We interviewed 12 medical professionals from the Middle East currently working with stored tissue samples to document their opinions. We found general agreement. Participants' primary concerns were similar to the views of researchers internationally. Since children tend to represent a high percentage of Middle Eastern populations, and because children's bodies are not just small adult bodies, the interviewed professionals strongly believed that it is imperative to include children in biobank research. Participants generally believed that protecting confidentiality is socially very important and that informed consent/assent must be obtained from both adult and child participants. This study provides a starting point for additional studies.

  2. What Makes Small-Scale Farmers Participate in Financing Agricultural Research and Extension? Analysis of Three Case Studies from Benin

    Science.gov (United States)

    Moumouni, Ismail M.; Vodouhe, Simplice D.; Streiffeler, Friedhelm

    2009-01-01

    This paper analyses the organizational, financial and technological incentives that service organizations used to motivate farmers to finance agricultural research and extension in Benin. Understanding the foundations and implications of these motivation systems is important for improving farmer financial participation in agricultural research and…

  3. Public Interest in Medical Research Participation: Does It Matter if Patients or Community Members Have Helped Design the Study?

    Science.gov (United States)

    Cobb, Enesha M; Gebremariam, Achamyeleh; Singer, Dianne; Davis, Matthew M

    2015-10-01

    We determined national levels of public participation in medical research study design. We compared public interest in medical research participation (MRP) in studies overall, versus studies explicitly designed with public involvement. Cross-sectional household survey of US population in June 2013. Descriptive statistics estimated participation in medical research study design. Chi-square test compared levels of interest in MRP if respondent knew patients or community members helped design the study. Of 2,048 respondents (participation rate 60%), 5% knew someone who had helped design a medical research study. There was no association between having known someone or personal participation in study design and willingness to engage in MRP. Although the overall proportion of respondents who would consider MRP initially (51%) was similar to the proportion who would consider MRP with community member involvement in study design (49%), the changes in respondents' views across the different scenarios were significantly greater than what would have been expected by chance. We found similar levels of interest in MRP whether or not the public is involved in medical research study design. This finding may indicate that public involvement in study design, like community-based participatory research, may not affect overall rates of MRP. © 2015 Wiley Periodicals, Inc.

  4. The Experience of Surrogate Decision Makers on Being Approached for Consent for Patient Participation in Research. A Multicenter Study.

    Science.gov (United States)

    Burns, Karen E A; Prats, Clara Juando; Maione, Maria; Lanceta, Mary; Zubrinich, Celia; Jeffs, Lianne; Smith, Orla M

    2017-02-01

    Recruitment in critical care research differs from other contexts in important ways: patients lack decision-making capacity, uncertainty exists regarding patient prognosis, and critical illnesses are often associated with appreciable morbidity and mortality. We aimed to describe the experiences of surrogate decision makers (SDMs) in being approached for consent for critically ill patients to participate in research. A multicenter, qualitative study involving semistructured interviews with 26 SDMs, who provided or declined surrogate consent for research participation, at 5 Canadian centers nested within a multicenter observational study of research recruitment practices. Transcripts were reviewed by three qualitative researchers, and data were analyzed using grounded theory and a narrative critical analysis. SDMs were guided by an overarching desire for the patient to live. Surrogate research decision-making involved three sequential stages: (1) being approached; (2) reflecting on participation; and (3) making a decision. In stage 1, SDMs identified factors (their expectations, how they were approached, the attributes of the person approaching, and study risks and benefits) that characterized their consent encounter and affirmed a preference to be approached in person. If SDMs perceived the risk of participation to be too high or felt patients may not benefit from participation, they did not contemplate further. In stage 2, SDMs who knew the patient's wishes or had a deeper understanding of research prioritized the patient's wishes and the perceived benefits of participation. Without this information, SDMs prioritized obtaining more and better care for the patient, considered what was in their mutual best interests, and valued healthcare professional's knowledge. Trust in healthcare professionals was essential to proceeding further. In stage 3, SDMs considered six factors in rendering decisions. SDMs engaged in three sequential stages and considered six factors in

  5. Inhibition of PARP-1 participates in the mechanisms of propofol-induced amnesia in mice and human.

    Science.gov (United States)

    Jia, Lijie; Wang, Wenyuan; Luo, Yan; Zhang, Fujun; Lu, Han; Xue, Qingsheng; Yu, Buwei

    2016-04-15

    Poly(ADP-ribose) polymerase 1 (PARP-1) has emerged as an important regulator in learning and memory. Propofol leads to amnesia, however, the mechanism remains unclear. The present study was designed to examine whether and how PARP-1 plays a role in propofol-induced amnesia. Mice were injected intraperitoneally with propofol before acquisition training. Cognitive function was evaluated by object recognition test. PARP-1 and PAR expression was determined through Western blot. The protein and mRNA levels of Arc and c-Fos were detected by Western blot and real-time PCR. Thirty volunteers were assigned to three groups according to codon 762 variation of PARP-1 gene (rs1136410). They learned word lists awake and during propofol sedation. Their cognitive traits were evaluated through fMRI. Rodent data demonstrated that propofol inhibited acquisition-induced increase in PARP-1 and PAR, thereby suppressing Arc and c-Fos, which impaired object recognition 24h after learning. Consistent with this, carriers of a low-catalyzing function PARP-1 variant (Val762Ala) exhibited decreased retrieval-induced hippocampal reactivity 24h after learning under propofol-sedative condition. These findings suggested that inhibition of PARP-1 might participate in the mechanism of propofol-induced amnesia in mice and human. More generally, our approach illustrated a potential translational research bridging animal models and human studies. Copyright © 2016 Elsevier B.V. All rights reserved.

  6. Targeted Facebook Advertising is a Novel and Effective Method of Recruiting Participants into a Human Papillomavirus Vaccine Effectiveness Study.

    Science.gov (United States)

    Subasinghe, Asvini K; Nguyen, Margaret; Wark, John D; Tabrizi, Sepehr N; Garland, Suzanne M

    2016-07-22

    Targeted advertising using social networking sites (SNS) as a recruitment strategy in health research is in its infancy. The aim of this study was to determine the feasibility of targeted Facebook advertisements to increase recruitment of unvaccinated women into a human papillomavirus (HPV) vaccine effectiveness study. Between September 2011 and November 2013, females aged 18 to 25 years, residing in Victoria, Australia, were recruited through Facebook advertisements relating to general women's health. From November 2013 to June 2015, targeted advertising campaigns were implemented to specifically recruit women who had not received the HPV vaccine. Consenting participants were invited to complete an online questionnaire and those who had ever had sexual intercourse were asked to provide a self-collected vaginal swab. The HPV vaccination status of participants was confirmed from the National HPV Vaccination Program Register (NHVPR). The campaign comprised 10 advertisements shown between September 2011 and June 2015 which generated 55,381,637 impressions, yielding 23,714 clicks, at an overall cost of AUD $22,078.85. A total of 919 participants were recruited. A greater proportion of unvaccinated women (50.4%, 131/260) were recruited into the study following targeted advertising, compared with those recruited (19.3%, 127/659) prior to showing the modified advertisement (P<.001). A greater proportion of the total sample completed tertiary education and resided in inner regional Victoria, compared with National population census data (P<.001), but was otherwise representative of the general population. Targeted Facebook advertising is a rapid and cost-effective way of recruiting young unvaccinated women into a HPV vaccine effectiveness study.

  7. Assessment by human research ethics committees of potential conflicts of interest arising from pharmaceutical sponsorship of clinical research.

    Science.gov (United States)

    Newcombe, J P; Kerridge, I H

    2007-01-01

    Conflicts of interest arising from pharmaceutical industry sponsorship of clinical research have the potential to bias research outcomes and ultimately prejudice patient care. It is unknown how Australian Human Research Ethics Committees (HREC) assess and manage such conflicts of interest. We aimed to gain an understanding of how HREC approach the problem of potential conflicts of interest arising from pharmaceutical sponsorship of clinical research. We conducted a survey of HREC chairpersons in New South Wales. HREC vary widely in their approaches to conflicts of interest, including in their use of National Health and Medical Research Council guidelines, which were often misinterpreted or overlooked. Many committees rely primarily on researchers disclosing potential conflicts of interest, whereas a majority of HREC use disclosure to research participants as the primary tool for preventing and managing conflicts of interest. Almost no HREC place limitations on researcher relationships with pharmaceutical companies. These findings suggest reluctance on the part of HREC to regulate many potential conflicts of interest between researchers and pharmaceutical sponsors, which may arise from uncertainty regarding the meaning or significance of conflicts of interest in research, from ambiguity surrounding the role of HREC in assessing and managing conflicts of interest in research or from misinterpretation or ignorance of current National Health and Medical Research Council guidelines. Further review of policies and practices in this important area may prove beneficial in safeguarding clinical research and patient care while promoting continuing constructive engagement with the pharmaceutical industry.

  8. Patterns of targeting and encouraging participation of elder consumers in human services marketing.

    Science.gov (United States)

    Kaye, L W

    1996-01-01

    Competition within the older adult services sector is fueling the widespread adoption of an organizational marketing mentality. Yet little is known of the degree of variation in marketing technology and commitment to elder consumer subgroups in different health and social service settings or the extent to which elders are involved actively in the marketing process. This paper addresses these issues drawing on study data collected from 274 elder service programs in six major U.S. metropolitan areas. Findings confirm that providers frequently co-market their services with other organizations and target multiple constituencies, but do not distinguish as well among specialized segments of the elder population varying in terms of gender, physical and mental capacity, age, financial status, or race. Significant predictors (p<.05) of increased levels of elder participation in the agency marketing pro cess include length of time marketing, specialized training in marketing, and nonsectarian auspice (R2=.22). Results lead to recommendations for mounting more cohort-sensitive marketing initiatives in human service agencies serving older adults.

  9. Breaking Fresh Ground in Human-Media Interaction Research

    NARCIS (Netherlands)

    Nijholt, Antinus

    2014-01-01

    Human-Media Interaction research is devoted to methods and situations where humans individually or collectively interact with digital media, systems, devices and environments. Novel forms of interaction paradigms have been enabled by new sensor and actuator technology in the last decades, combining

  10. Is Innovation a Useful Concept for Arts and Humanities Research?

    Science.gov (United States)

    Gulbrandsen, Magnus; Aanstad, Siri

    2015-01-01

    This article argues that innovation may constitute a useful perspective on the link between society and arts and humanities research. Innovation is here seen as "something new put into practical use", and there are two reasons why it can be relevant for humanities. First, there has been an expansion of what innovation refers to; it is…

  11. Core Curriculum for Human Services. Career Options Research and Development.

    Science.gov (United States)

    Soong, Robert K.; And Others

    Developed through the Career Options Research and Development (CORD) Project, this report presents, in outline form, a core curriculum for the human services area. Specific objectives of the CORD project were the: (1) application of job analysis to positions in the social and human services, (2) organization of tasks and skills into career…

  12. Humane Education: The Status of Current Research and Knowledge.

    Science.gov (United States)

    Vockell, Edward L.; Hodal, Frank

    1984-01-01

    Reviews research on: (1) measuring humane attitudes; (2) American attitudes toward animal life; (3) strategies of humane education; and (4) attitude improvement. Indicates there is reliable evidence that attitudes of Americans toward animal life are strongly negative and that this negativeness increases as children grow older. (JN)

  13. Human tissue models in cancer research: looking beyond the mouse

    Directory of Open Access Journals (Sweden)

    Samuel J. Jackson

    2017-08-01

    Full Text Available Mouse models, including patient-derived xenograft mice, are widely used to address questions in cancer research. However, there are documented flaws in these models that can result in the misrepresentation of human tumour biology and limit the suitability of the model for translational research. A coordinated effort to promote the more widespread development and use of ‘non-animal human tissue’ models could provide a clinically relevant platform for many cancer studies, maximising the opportunities presented by human tissue resources such as biobanks. A number of key factors limit the wide adoption of non-animal human tissue models in cancer research, including deficiencies in the infrastructure and the technical tools required to collect, transport, store and maintain human tissue for lab use. Another obstacle is the long-standing cultural reliance on animal models, which can make researchers resistant to change, often because of concerns about historical data compatibility and losing ground in a competitive environment while new approaches are embedded in lab practice. There are a wide range of initiatives that aim to address these issues by facilitating data sharing and promoting collaborations between organisations and researchers who work with human tissue. The importance of coordinating biobanks and introducing quality standards is gaining momentum. There is an exciting opportunity to transform cancer drug discovery by optimising the use of human tissue and reducing the reliance on potentially less predictive animal models.

  14. Using Facebook to Supplement Participant Pools for Class Research Projects: Should We Like It?

    Science.gov (United States)

    Sciutto, Mark J.

    2015-01-01

    In-class research projects are a valuable way of providing research experience for undergraduate students in psychology. This article evaluates the use of online social networks to supplement sample recruitment for in-class research projects. Specifically, this article presents a systematic analysis of seven student research projects that…

  15. Multidisciplinary "Boot Camp" Training in Cellular Bioengineering to Accelerate Research Immersion for REU Participants

    Science.gov (United States)

    Shreiber, David I.; Moghe, Prabhas V.; Roth, Charles M.

    2015-01-01

    Research Experiences for Undergraduates (REU) sites widely serve as the first major research gateway for undergraduates seeking a structured research experience. Given their lack of prior research skills, and the highly compressed duration of the REU programs, these students frequently encounter barriers to a seamless transition into a new…

  16. Scientific Merit Review of Directed Research Tasks Within the NASA Human Research Program

    Science.gov (United States)

    Charles, John B.

    2010-01-01

    The Human Research Program is instrumental in developing and delivering research findings, health countermeasures, and human systems technologies for spacecraft. :HRP is subdivided into 6 research entities, or Elements. Each Element is charged with providing the Program with knowledge and capabilities to conduct research to address the human health and performance risks as well as advance the readiness levels of technology and countermeasures. Project: An Element may be further subdivided into Projects, which are defined as an integrated set of tasks undertaken to deliver a product or set of products

  17. Inclusive research as a site for lifelong learning: participation in learning communities

    OpenAIRE

    Nind, Melanie

    2015-01-01

    This paper explores the learning that goes on when adults with learning disabilities are involved in inclusive (participatory or emancipatory) research. Applying thematic and narrative re-analysis of data from a series of focus groups involving inclusive researchers talking about their research work indicates inclusive research is a rich site for learning. The nature of the new knowledge (know-what and know-how) about the process and products of inclusive research, as well as more transferrab...

  18. Enhancing Junior Faculty Research Productivity through Multiinstitution Collaboration: Participants' Impressions of the School Psychology Research Collaboration Conference

    Science.gov (United States)

    Rush, S. Craig; Wheeler, Joanna

    2011-01-01

    In addition to teaching and service responsibilities, junior faculty members are required to be productive researchers. Despite the demand on junior faculty to produce published research, studies suggest that they often do not receive adequate assistance with their research endeavors. Mentoring is an effective form of support for junior faculty…

  19. Indicators for Research Performance in the Humanities? The Scholars’ View on Research Quality and Indicators

    Energy Technology Data Exchange (ETDEWEB)

    Ochsner, M.; Hug, S.E.

    2016-07-01

    In this paper, we present indicators for research quality in the humanities collected in our previous work (Ochsner, Hug, & Daniel, 2012). We focus on how these indicators are accepted by humanities scholars. We also investigate differences between different subgroups of the humanities scholars we surveyed with regard to their preferences for such indicators. We address the theme of the conference (‘peripheries frontiers and beyond’) regarding two notions of (scientometric) periphery: First, we investigate indicators for research quality in the humanities, a field where there is a lack on knowledge on how to assess or even measure research quality, in fact, there is a quite broad consensus that (evaluative) bibliometrics cannot be readily applied in the humanities (Hicks, 2004; Nederhof, 2006). Second, we fully cover three humanities disciplines at Swiss universities and member universities of the League of European Research Universities (LERU). Scholars are a neglected stakeholder when it comes to the design of research assessment procedures or the selection of research indicators. However, they are directly affected, they know best what research quality in their field is and what impact the use of certain indicators could have on their research practices. The paper is structured as follows: first, we present the background for selecting indicators for research quality. This is followed by a description of our analysis methods and the presentation of the results. We finally discuss the results with regard to their use in research evaluation. (Author)

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

    Science.gov (United States)

    Skene, Loane

    2008-03-01

    Committees appointed by governments to inquire into specific policy issues often have no further role when the Committee's report is delivered to government, but that is not always so. This paper describes the activities of members of the Australian Committee on human cloning and embryo research (the Lockhart Committee) to inform Parliament and the community about the Committee's recommendations after its report was tabled in Parliament. It explains their participation in the political process as their recommendations were debated and amending legislation was passed by Parliament. It illustrates a method of communication about scientific and policy issues that explores people's concerns and what they 'need to know' to make a judgment; and then responds to questions they raise, with the aim of facilitating discussion, not arguing for one view. The paper considers whether this type of engagement and communication is appropriate and could be used in other policy discussions.

  1. 78 FR 14806 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2013-03-07

    ... HUMAN SERVICES National Institutes of Health National Human Genome Research Institute; Notice of Closed... of Committee: National Human Genome Research Institute Special Emphasis Panel: Clinically Relevant... grant applications. Place: National Human Genome Research Institute, 4th Floor Conference Room, 5635...

  2. 75 FR 8374 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2010-02-24

    ... HUMAN SERVICES National Institutes of Health National Human Genome Research Institute; Notice of Closed... of Committee: National Human Genome Research Institute Special Emphasis Panel, Revolutionary..., National Human Genome Research Institute, National Institutes of Health, 5635 Fishers Lane, Suite 4076, MSC...

  3. 76 FR 35223 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2011-06-16

    ... HUMAN SERVICES National Institutes of Health National Human Genome Research Institute; Notice of Closed... of Committee: National Human Genome Research Institute Special Emphasis Panel, Sequencing Centers...D, Scientific Review Officer, Scientific Review Branch, National Human Genome Research Institute...

  4. 77 FR 60706 - National Human Genome Research Institute; Notice of Closed Meeting

    Science.gov (United States)

    2012-10-04

    ... HUMAN SERVICES National Institutes of Health National Human Genome Research Institute; Notice of Closed.... Name of Committee: National Human Genome Research Institute Special Emphasis Panel; Special Emphasis... Officer, Scientific Review Branch, National Human Genome Research Institute, National Institutes of Health...

  5. Researching Human Experience: video intervention/prevention assessment (VIA

    Directory of Open Access Journals (Sweden)

    Jennifer Patashnick

    2005-05-01

    Full Text Available Human experience is a critical subject for research. By discussing Video Intervention/Prevention Assessment (VIA, a patient-centered health research method where patients teach their clinicians about living with a chronic condition through the creation of visual illness narratives, this paper examines the value of qualitative inquiry and why human experience rarely is investigated directly. An analysis of a sample VIA data is presented to demonstrate how, by utilizing grounded theory and qualitative analysis, one can derive rich and unique information from human experience.

  6. Towards a Creative Synthesis of Participant Observation and Participatory Research: Reflections on Doing Research "with" and "on" Young Bhutanese Refugees in Nepal

    Science.gov (United States)

    Evans, Rosalind

    2013-01-01

    This article responds to Wright and Nelson's (1995) call for a "creative synthesis" of participant observation and participatory research, which may allow the limitations of both methods to be addressed. It does so by reflecting on the experience of doing long-term research both with and on young Bhutanese refugees in Nepal. Although…

  7. One Million Bones: Measuring the Effect of Human Rights Participation in the Social Work Classroom

    Science.gov (United States)

    McPherson, Jane; Cheatham, Leah P.

    2015-01-01

    This article describes the integration of human rights content and a national arts-activism initiative--One Million Bones--into a bachelor's-level macro practice class as a human rights teaching strategy. Two previously validated scales, the Human Rights Exposure (HRX) in Social Work and the Human Rights Engagement (HRE) in Social Work (McPherson…

  8. Implications of participation and equality in the research process for health promotion practice: domestic violence as an example.

    Science.gov (United States)

    Fisher, Colleen

    2011-08-01

    Contemporary health promotion is underpinned by a philosophy of participation and working with communities to build strength and capacity. This article adds to literature, describing how this is operationalised in health promotion research. The operationalisation of participation and equality in a participatory action research (PAR) project examining domestic violence in five communities from an African refugee background, post settlement in Perth (Ethiopia, Liberia, Sierra Leone, Somalia and Sudan) is described. The qualitative research undertaken included 78 participants: 54 from the five communities and 24 from health and support agency staff who provide services to them and utilised in-depth interviews and focus groups. Ongoing participation by community members and equality within stakeholder relationships was facilitated by the project being community-initiated, the crystallisation of strong stakeholder relationships, data collection by trained bicultural, bilingual interviewers from the five communities, and ongoing involvement of the communities through data analysis and report-writing phases. All stakeholders are able to learn from the perspectives and knowledge of others. Equality can supplant a subject-object relationship typical of much research and evident in some practice, with a subject-subject relationship. It can also transpose community members from the margins to the centre of research and practice. How community strength and capacity can be built through research is instructive for health promotion practice.

  9. Effective stakeholder participation in setting research priorities using a Global Evidence Mapping approach.

    Science.gov (United States)

    Clavisi, Ornella; Bragge, Peter; Tavender, Emma; Turner, Tari; Gruen, Russell L

    2013-05-01

    We present a multistep process for identifying priority research areas in rehabilitation and long-term care of traumatic brain-injured (TBI) patients. In particular, we aimed to (1) identify which stakeholders should be involved; (2) identify what methods are appropriate; (3) examine different criteria for the generation of research priority areas; and (4) test the feasibility of linkage and exchange among researchers, decision makers, and other potential users of the research. Potential research questions were identified and developed using an initial scoping meeting and preliminary literature search, followed by a facilitated mapping workshop and an online survey. Identified research questions were then prioritized against specific criteria (clinical importance, novelty, and controversy). Existing evidence was then mapped to the high-priority questions using usual processes for search, screening, and selection. A broad range of stakeholders were then brought together at a forum to identify priority research themes for future research investment. Using clinical and research leaders, smaller targeted planning workshops prioritized specific research projects for each of the identified themes. Twenty-six specific questions about TBI rehabilitation were generated, 14 of which were high priority. No one method identified all high-priority questions. Methods that relied solely on the views of clinicians and researchers identified fewer high-priority questions compared with methods that used broader stakeholder engagement. Evidence maps of these high-priority questions yielded a number of evidence gaps. Priority questions and evidence maps were then used to inform a research forum, which identified 12 priority themes for future research. Our research demonstrates the value of a multistep and multimethod process involving many different types of stakeholders for prioritizing research to improve the rehabilitation outcomes of people who have suffered TBI. Enhancing

  10. Crowds for Clouds : Recent Trends in Humanities Research Infrastructures

    NARCIS (Netherlands)

    Kristel, Conny; Blanke, Tobias; Romary, Laurent; Benardou, Agiati; Champion, Erik; Dallas, Costis; Hughes, Lorna

    2016-01-01

    Humanities have convincingly argued that they need transnational research opportunities and through the digital transformation of their disciplines also have the means to proceed with it on an up to now unknown scale. The digital transformation of research and its resources means that many of the

  11. Crowds for Clouds : Recent Trends in Humanities Research Infrastructures

    NARCIS (Netherlands)

    Kristel, Conny; Blanke, Tobias; Romary, Laurent; Benardou, Agiati; Champion, Erik; Dallas, Costis; Hughes, Lorna

    2017-01-01

    Humanities have convincingly argued that they need transnational research opportunities and through the digital transformation of their disciplines also have the means to proceed with it on an up to now unknown scale. The digital transformation of research and its resources means that many of the

  12. Teaching and Learning Children's Human Rights: A Research Synthesis

    Science.gov (United States)

    Brantefors, Lotta; Quennerstedt, Ann

    2016-01-01

    The study presented in this paper is a research synthesis examining how issues relating to the teaching and learning of children's human rights have been approached in educational research. Drawing theoretically on the European Didaktik tradition, the purpose of the paper is to map and synthesise the educational interest in children's rights…

  13. The Impact and Future of Arts and Humanities Research

    NARCIS (Netherlands)

    Benneworth, Paul Stephen; Gulbrandsen, Magnus; Hazelkorn, Ellen

    2016-01-01

    Drawing on original international research by a cross-European social science team, this book makes an important contribution to the discussion about the future of arts and humanities research. It explores the responses of these fields to the growing range of questions being asked about the value,

  14. Themes and situations that cause embarrassment among participants in research in which questionnaires or interviews are used

    Directory of Open Access Journals (Sweden)

    Juliana Dias Reis Pessalacia

    2013-03-01

    Full Text Available Objective. To recognize the themes and situations that could make research participants feel embarrassed when questionnaires or interviews are used. Methodology. Quantitative and descriptive study, developed in 2008, involving a stratified sample of 1,1149 subjects who qualified the degree of shame in view of potentially embarrassing themes and situations. Results. For the research participants, it is embarrassing to answer questions related to the following themes: betrayal (50%, physical violence (42%, sexual harassment (42%, psychological violence (40% and death of loved ones (38%. The situations that most frequently causes embarrassment were: start of the survey or interview without requesting informed consent (83%; lack of information about the type of questions that would be addressed (79%, lack of guaranteed anonymity (78%, or use of images (66% or a recorder (58%. Conclusion. Themes and situations were identified that caused embarrassment among participants in research in which questionnaires or interviews were used, which should be considered in the ethical evaluation of studies.

  15. Role of Clinical Trial Participation in Cancer Research: Barriers, Evidence, and Strategies

    Science.gov (United States)

    Unger, Joseph M.; Cook, Elise; Tai, Eric; Bleyer, Archie

    2017-01-01

    OVERVIEW Fewer than 1 in 20 adult cancer patients enroll in cancer clinical trials. But although barriers to trial participation have been the subject of frequent study, the rate of trial participation has not changed substantially over time. Barriers to trial participation are structural, clinical, and attitudinal, and differ according to demographic and socioeconomic factors. In this paper, we characterize the nature of cancer clinical trial barriers, and we consider global and local strategies for reducing barriers. We also consider the specific case of adolescents with cancer, and show that the low rate of trial enrollment in this age group strongly correlates with limited improvements in cancer population outcomes compared to other age groups. Our analysis suggests that a clinical trial system that enrolls patients at higher rates produces treatment advances at a faster rate and corresponding improvements in cancer population outcomes. Viewed in this light, the issue of clinical trial enrollment is foundational, lying at the heart of the cancer clinical trial endeavor. Fewer barriers to trial participation would allow trials to be completed more quickly and would improve the generalizability of trial results. Moreover, increased accrual to trials is important to patients, since trials provide patients the opportunity to receive the newest treatments. In an era of increasing emphasis on a treatment decision-making process that incorporates the patient perspective, the opportunity for patients to choose trial participation for their care is vital. PMID:27249699

  16. Dermal uptake of phthalates from clothing: Comparison of model to human participant results.

    Science.gov (United States)

    Morrison, G C; Weschler, C J; Bekö, G

    2017-05-01

    In this research, we extend a model of transdermal uptake of phthalates to include a layer of clothing. When compared with experimental results, this model better estimates dermal uptake of diethylphthalate and di-n-butylphthalate (DnBP) than a previous model. The model predictions are consistent with the observation that previously exposed clothing can increase dermal uptake over that observed in bare-skin participants for the same exposure air concentrations. The model predicts that dermal uptake from clothing of DnBP is a substantial fraction of total uptake from all sources of exposure. For compounds that have high dermal permeability coefficients, dermal uptake is increased for (i) thinner clothing, (ii) a narrower gap between clothing and skin, and (iii) longer time intervals between laundering and wearing. Enhanced dermal uptake is most pronounced for compounds with clothing-air partition coefficients between 104 and 107 . In the absence of direct measurements of cotton cloth-air partition coefficients, dermal exposure may be predicted using equilibrium data for compounds in equilibrium with cellulose and water, in combination with computational methods of predicting partition coefficients. © 2016 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

  17. Research on public participant urban infrastructure safety monitoring system using smartphone

    Science.gov (United States)

    Zhao, Xuefeng; Wang, Niannian; Ou, Jinping; Yu, Yan; Li, Mingchu

    2017-04-01

    Currently more and more people concerned about the safety of major public security. Public participant urban infrastructure safety monitoring and investigation has become a trend in the era of big data. In this paper, public participant urban infrastructure safety protection system based on smart phones is proposed. The system makes it possible to public participant disaster data collection, monitoring and emergency evaluation in the field of disaster prevention and mitigation. Function of the system is to monitor the structural acceleration, angle and other vibration information, and extract structural deformation and implement disaster emergency communications based on smartphone without network. The monitoring data is uploaded to the website to create urban safety information database. Then the system supports big data analysis processing, the structure safety assessment and city safety early warning.

  18. [Changes in labor market participation of older employees in Germany: the perspective of labor market research].

    Science.gov (United States)

    Brussig, M

    2009-08-01

    For many years, Germany has been regarded in international comparisons as an example of a generous early retirement culture, resulting in a low labor market participation of older employees. Recently, however, employment rates of older employees have increased remarkably. Reasons are the demographic structure of older persons in Germany, a long-term trend of increasing female labor market participation, and reforms in labor-market policies and pension policies during the last 10 years. Despite an increasing labor market participation of older employees, traditional labor market risks for older persons partly remained, but some new risks evolved as well. Therefore, social differentiation among older employees increased.Although detailed macro descriptions exist, the causes of labor market developments cannot be fully understood with cross-sectional data alone. An important stimulus is to be expected from individual longitudinal data which reflect employment histories and labor market transitions such as employment exit and retirement.

  19. Negative Facial Expressions - But Not Visual Scenes - Enhance Human Working Memory in Younger and Older Participants.

    Science.gov (United States)

    Belham, Flávia Schechtman; Tavares, Maria Clotilde H; Satler, Corina; Garcia, Ana; Rodrigues, Rosângela C; Canabarro, Soraya L de Sá; Tomaz, Carlos

    2017-01-01

    Many studies have investigated the influence of emotion on memory processes across the human lifespan. Some results have shown older adults (OA) performing better with positive stimuli, some with negative items, whereas some found no impact of emotional valence. Here we tested, in two independent studies, how younger adults (YA) and OA would perform in a visuospatial working memory (VSWM) task with positive, negative, and neutral images. The task consisted of identifying the new location of a stimulus in a crescent set of identical stimuli presented in different locations in a touch-screen monitor. In other words, participants should memorize the locations previously occupied to identify the new location. For each trial, the number of occupied locations increased until 8 or until a mistake was made. In study 1, 56 YA and 38 OA completed the task using images from the International Affective Picture System (IAPS). Results showed that, although YA outperformed OA, no effects of emotion were found. In study 2, 26 YA and 25 OA were tested using facial expressions as stimuli. Data from this study showed that negative faces facilitated performance and this effect did not differ between age groups. No differences were found between men and women. Taken together, our findings suggest that YA and OA's VSWM can be influenced by the emotional valence of the information, though this effect was present only for facial stimuli. Presumably, this may have happened due to the social and biological importance of such stimuli, which are more effective in transmitting emotions than IAPS images. Critically, our results also indicate that the mixed findings in the literature about the influence of aging on the interactions between memory and emotion may be caused by the use of different stimuli and methods. This possibility should be kept in mind in future studies about memory and emotion across the lifespan.

  20. Effects of inflammation on hippocampus and substantia nigra responses to novelty in healthy human participants.

    Science.gov (United States)

    Harrison, Neil A; Cercignani, Mara; Voon, Valerie; Critchley, Hugo D

    2015-03-01

    Humans are naturally inquisitive. This tendency is adaptive, aiding identification of potentially valuable novel outcomes. The dopaminergic substantia nigra (SN) is implicated in the drive to explore novel stimuli and situations. However, infection and inflammation inhibit the motivation to seek out novelty. This likely serves to limit exposure to uncertain, potentially detrimental outcomes when metabolic resources are limited. Nevertheless, the neural mechanisms through which inflammation constrains novelty seeking are poorly understood. We therefore scanned 16 healthy participants (6 male, mean 27.2±7.3 years), using fMRI, once following experimental inflammation (intramuscular (i.m.) typhoid vaccination) and once after placebo (i.m. saline), with the aim of characterizing effects of inflammation on neural processing of novel and familiar place, and face stimuli. We specifically tested the effects of inflammation on the hypothesized roles of SN and hippocampus in novelty processing. Typhoid vaccination evoked a nearly threefold increase in circulating pro-inflammatory cytokine (interleukin-6) levels 3 h after injection, indicating induction of mild systemic inflammation. Enhanced hippocampal responses to novel (compared with familiar) stimuli were observed following both vaccine and placebo, consistent with intact central novelty detection. However, the normal bilateral reactivity of SN to stimulus novelty was significantly attenuated following inflammation. Correspondingly, inflammation also markedly impaired novelty-related functional coupling between the SN and hippocampus. These data extend previous findings of SN sensitivity to mild inflammation associated with changes in psychomotor responding, and suggest that inflammation-induced blunting of SN responses to hippocampal novelty signals may represent a plausible mechanism through which inflammation impairs motivational responses to novelty.