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Sample records for research participants undergoing

  1. Participation in clinical research: perspectives of adult patients and parents of pediatric patients undergoing hematopoietic stem cell transplantation.

    PubMed

    Keusch, Florian; Rao, Rohini; Chang, Lawrence; Lepkowski, James; Reddy, Pavan; Choi, Sung Won

    2014-10-01

    Despite major improvements over the past several decades, many patients undergoing hematopoietic stem cell transplantations (HSCT) continue to suffer from significant treatment-related morbidity and mortality. Clinical research studies (trials) have been integral to advancing the standard of care in HSCT. However, 1 of the biggest challenges with clinical trials is the low participation rate. Although barriers to participation in cancer clinical trials have been previously explored, studies specific to HSCT are lacking. The current study was undertaken to examine the knowledge, attitudes, and perceptions of HSCT patients regarding clinical trials. As members of focus groups, participants responded to open-ended questions that assessed factors influencing decision-making about HSCT clinical trials. Suggestions for improvements in the recruitment process were also solicited among participants. Seventeen adult HSCT patients and 6 parents of pediatric HSCT patients participated in the study. The median age was 56 years (range, 18 to 70) and 44 years (range, 28 to 54) for adult patients and parents, respectively. Participants universally indicated that too much information was provided within the informed consents and they were intimidated by the medical and legal language. Despite the large amount of information provided to them at the time of study enrollment, the participants had limited knowledge retention and recall of study details. Nevertheless, participants reported overall positive experiences with clinical trial participation and many would readily choose to participate again. A common concern among participants was the uncertainty of study outcome and general lack of feedback about results at the end of the study. Participants suggested that investigators provide more condensed and easier to understand informed consents and follow-up of study findings. These findings could be used to help guide the development of improved consent documents and enhanced

  2. [Discussion paper participation research].

    PubMed

    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. PMID:23235948

  3. Explanations of AD in ethnic minority participants undergoing cognitive screening.

    PubMed

    Tappen, Ruth M; Gibson, Sandra E; Williams, Christine L

    2011-06-01

    The purpose of this study was to describe and compare explanations of Alzheimer's disease (AD) of African American, Afro-Caribbean, and European American older adults undergoing cognitive screening. Participants were asked a series of open-ended questions regarding what they knew about AD and if they were experiencing memory problems. Responses were coded and quantized for analysis. Forty percent reported experiencing memory problems. Afro-Caribbeans made significantly more incorrect statements about AD and were less likely to identify memory loss as a symptom. Half the participants said they would seek their physician's advice if the screening was positive; none mentioned a memory disorder center. Misconceptions about AD included the effect of aluminum, brain collapse, relaxed brain, shaking, tremors, and physical illness. More Afro-Caribbeans, all of whom were first generation, had misconceptions about AD. Campaigns to educate the public about AD need to provide culturally sensitive and appropriate information to ethnic minority populations. PMID:21697141

  4. Researching participant recruitment times.

    PubMed

    O'Brien, Rachel; Black, Polly

    2015-11-01

    Conducting research in emergency departments is relatively new, and there are a number of ethical and practical challenges to recruiting patients in these settings. In 2008, the Emergency Medicine Research Group Edinburgh (EMERGE) was set up at the Royal Infirmary of Edinburgh emergency department to support researchers and encourage the growth of research in emergency medicine. As part of a review of their working methods, the group's clinical nurse researchers undertook a small study to identify participant recruitment times. The results showed a significant difference between perceived and actual recruitment times, which has implications for planning staff numbers and budgets. This article describes the evaluation process and methods of data collection, and discusses the results. PMID:26542924

  5. Undergraduate Research Summer Fellowships Undergo Change

    NASA Astrophysics Data System (ADS)

    Elgren, Timothy E.

    2000-09-01

    At the 22nd Annual Council Meeting of Council on Undergraduate Research (CUR), held this past June at the College of Wooster, the general council voted to make fundamental changes to the Undergraduate Research Summer Fellowship Program. The most important change is that awards will no longer be made to individual students. Instead, awards will be made to individual faculty member on the basis of applications written by faculty members comprised of a curriculum vitae, a description of the proposed research project, and the role of undergraduate collaborators in the proposed research activities. This change brings the program more in line with the overall CUR objective to support faculty in their efforts to provide research experiences for undergraduate students. Faculty members selected for awards will be asked to designate a student recipient at the time the funds are awarded, a key change to the fellowship program.

  6. Individualized Comprehensive Lifestyle Intervention in Patients Undergoing Chemotherapy with Curative or Palliative Intent: Who Participates?

    PubMed Central

    Vassbakk-Brovold, Karianne; Lian, Henrik; Mjåland, Odd; Seiler, Stephen

    2015-01-01

    Objective Knowledge about determinants of participation in lifestyle interventions in cancer patients undergoing chemotherapy, particularly with palliative intent, remains poor. The objective of the present study was to identify determinants of participating in a 12 month individualized, comprehensive lifestyle intervention, focusing on diet, physical activity, mental stress and smoking cessation, in cancer patients receiving chemotherapy with curative or palliative intent. The secondary objective was to identify participation determinants 4 months into the study. Methods Newly diagnosed cancer patients starting chemotherapy at the cancer center in Kristiansand/Norway (during a 16 month inclusion period) were screened. Demographic and medical data (age, sex, body mass index, education level, marital status, smoking status, Eastern Cooperative Oncology Group performance status (ECOG), diagnosis, tumor stage and treatment intention) was analyzed for screened patients. Results 100 of 161 invited patients participated. There were more females (69 vs. 48%; P = 0.004), breast cancer patients (46 vs. 25%; P = 0.007), non-smokers (87 vs. 74%; P = 0.041), younger (mean age 60 vs. 67 yrs; P < 0.001) and fitter (82 vs. 64% with EGOC 0; P = 0.036) participants vs. non-participants included. In multivariate logistic regression analyses, age (Odds Ratio 0.94, 95% Confidence Interval 0.91, 0.97) and smoking (0.42, 0.18, 0.99) were negatively associated with participation. After 4 months, 63 participants were still participating. Cancer type, smoking and age increased the probability of dropping out. Multivariate logistic regression revealed that age was the only significant determinant of 4 month participation (0.95, 0.91, 0.99). Patients aged >70 years were less likely to participate at baseline and 4 months. Conclusion Individualized lifestyle interventions in cancer patients undergoing chemotherapy appear to facilitate a high participation rate that declines with increasing

  7. Optimizing Clinical Research Participant Selection with Informatics

    PubMed Central

    Weng, Chunhua

    2015-01-01

    Clinical research participants are often not reflective of the real-world patients due to overly restrictive eligibility criteria. Meanwhile, unselected participants introduce confounding factors and reduce research efficiency. Biomedical Informatics, especially Big Data increasingly made available from electronic health records, offers promising aids to optimize research participant selection through data-driven transparency. PMID:26549161

  8. Racial disparities in participation in biomedical research.

    PubMed Central

    Kressin, N. R.; Meterko, M.; Wilson, N. J.

    2000-01-01

    To determine whether minority patients were less likely to participate in biomedical research, perceive positive benefits from such participation, or to recommend research participation to other patients, an observational study was conducted. Sociodemographic and survey data were collected from 5436 users of Department of Veterans Affairs (VA) Ambulatory Care, which included questions about veterans' research participation and related attitudes. Bivariate and multivariate analyses were performed to determine if there were racial differences in the outcomes of interest, controlling for relevant sociodemographic factors. Bivariate and multivariate analyses indicated that there were no racial differences in self-reported research participation, but minority veterans were more likely to perceive a positive effect of research and less likely to recommend research to other veterans. However, subgroup analyses indicated that, of those veterans having negative attitudes about research, minority and less educated veterans were disproportionately represented. In the VA system, racial differences in research participation may dissipate because many sociodemographic factors are controlled. Although we did not observe consistent racial differences in research participation or attitudes, the fact that minority veterans were disproportionately represented among the group with the most negative attitudes about research suggests that further research is necessary to fully understand the racial dynamics of research participation in the VA. PMID:10800293

  9. Developing Informed Research Participants in an Introductory Psychology Participant Pool

    ERIC Educational Resources Information Center

    Sullivan, Michael P.; Lashley, Sarah L.

    2009-01-01

    This activity offers a way to use the informed consent procedure to help students better understand the responsibilities of research participants. During a class activity, students completed a brief study. The study included presentation of consent forms and questionnaires before a surprise quiz over material from the consent form and a discussion…

  10. Assessing the Perceived Value of Research Participation

    ERIC Educational Resources Information Center

    VanWormer, Lisa A.; Jordan, Erica F.; Blalock, Lisa Durrance

    2014-01-01

    Undergraduate psychology majors are encouraged to engage in research to improve understanding of research methods and increase research skills. This study examines the potential of volunteering as a research participant to increase student perceptions of knowledge and interest in research. Undergraduate students completed a survey regarding the…

  11. The Obligation to Participate in Biomedical Research

    PubMed Central

    Schaefer, G. Owen; Emanuel, Ezekiel J.; Wertheimer, Alan

    2009-01-01

    The prevailing view is that participation in biomedical research is above and beyond the call of duty. While some commentators have offered reasons against this, we propose a novel public goods argument for an obligation to participate in biomedical research. Biomedical knowledge is a public good, available to any individual even if that individual does not contribute to it. Participation in research is a critical way to support that important public good. Consequently, we all have a duty to participate. The current social norm is that people participate only if they have a good reason to do so. The public goods argument implies that people should participate unless they have a good reason not to. Such a shift would be of great aid to the progress of biomedical research, eventually making our society significantly healthier and longer-lived. PMID:19567441

  12. Child Participant Roles in Applied Linguistics Research

    ERIC Educational Resources Information Center

    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…

  13. On Measuring Community Participation in Research

    ERIC Educational Resources Information Center

    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…

  14. VIEWING RESEARCH PARTICIPATION AS A MORAL OBLIGATION

    PubMed Central

    RENNIE, STUART

    2015-01-01

    A moral paradigm shift has proposed for participation in health-related research. It’s not just a praiseworthy option, some say; it’s a social obligation. Recasting research participation in this way would have global ramifications, however. Who ultimately stands to gain the most from it, and who has the most to lose? PMID:21495516

  15. Participation in research bronchoscopy: a literature review

    PubMed Central

    Martinsen, Einar Marius Hjellestad; Leiten, Elise Orvedal; Bakke, Per Sigvald; Eagan, Tomas Mikal Lind; Grønseth, Rune

    2016-01-01

    Bronchoscopy is the preferred method for collecting biological samples from the lower airways of subjects in clinical research. However, ensuring participation in clinical research can be challenging when the research includes an invasive procedure. For this report we reviewed the literature to look for information on participation in research bronchoscopy studies to better design our own study, the Bergen COPD Microbiome study (MicroCOPD). We performed a systematic literature search on participation in research bronchoscopy studies in February 2014 using the search engines of PubMed and EMBASE. The literature search resulted in seven relevant papers. Motivation was an end point in six of the seven papers, but reasons for declining participation and recruitment strategies also seemed important. Human subjects participate in research bronchoscopy studies for personal benefit and altruistic reasons. Inconvenience associated with research, in addition to fear of procedures, is considered a barrier. Radio, especially news stations, generated the most inquiries for a clinical study involving bronchoscopy. There is a lack of information on participation in research bronchoscopy studies in the literature. A bronchoscopy study has been initiated at Haukeland University Hospital, Bergen, Norway, to examine the role of the microbiome in COPD, and participation will be explored as a substudy. PMID:26847517

  16. Participation in research bronchoscopy: a literature review.

    PubMed

    Martinsen, Einar Marius Hjellestad; Leiten, Elise Orvedal; Bakke, Per Sigvald; Eagan, Tomas Mikal Lind; Grønseth, Rune

    2016-01-01

    Bronchoscopy is the preferred method for collecting biological samples from the lower airways of subjects in clinical research. However, ensuring participation in clinical research can be challenging when the research includes an invasive procedure. For this report we reviewed the literature to look for information on participation in research bronchoscopy studies to better design our own study, the Bergen COPD Microbiome study (MicroCOPD). We performed a systematic literature search on participation in research bronchoscopy studies in February 2014 using the search engines of PubMed and EMBASE. The literature search resulted in seven relevant papers. Motivation was an end point in six of the seven papers, but reasons for declining participation and recruitment strategies also seemed important. Human subjects participate in research bronchoscopy studies for personal benefit and altruistic reasons. Inconvenience associated with research, in addition to fear of procedures, is considered a barrier. Radio, especially news stations, generated the most inquiries for a clinical study involving bronchoscopy. There is a lack of information on participation in research bronchoscopy studies in the literature. A bronchoscopy study has been initiated at Haukeland University Hospital, Bergen, Norway, to examine the role of the microbiome in COPD, and participation will be explored as a substudy. PMID:26847517

  17. Frail Older People as Participants in Research

    ERIC Educational Resources Information Center

    Peel, Nancye M.; Wilson, Cecilia

    2008-01-01

    This article describes the experience of interviewing frail older people in a research project investigating hip fracture risk factors. Specific methodological strategies to maximize participation and data quality and to facilitate the interview process related to participant inclusion criteria, initial approach, questionnaire format, and…

  18. Toward ethical research practice with deaf participants.

    PubMed

    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. PMID:25746786

  19. Reactions to research participation in vulnerable subgroups.

    PubMed

    Widom, Cathy Spatz; Czaja, Sally J

    2005-01-01

    This paper describes the extent to which vulnerable individuals (defined by economic, social, psychological, physical health, and child maltreatment status) react to research participation. As part of an ongoing longitudinal study, participants (N=896) completed a lengthy and intrusive in-person interview and provided a small amount of blood through finger pricks. At the end of the interview, participants were asked eight questions about their reactions to the research experience. Vulnerable individuals in general agreed more strongly about having an emotional reaction, but were not less willing to continue to participate. In addition, psychologically vulnerable individuals more strongly agreed they would continue to participate, were treated with respect and dignity, and found their participation meaningful. Compared to whites, nonwhites reported stronger agreement about the meaningfulness of the research and the belief that their responses would be kept private. Like others, individuals vulnerable by virtue of their prisoner status or homelessness (past or current) agreed more strongly about having an emotional reaction to the interview, but otherwise did not differ in their reactions. These results suggest that researchers and institutional review boards should not be deterred from conducting research on sensitive topics with potentially vulnerable populations. PMID:16220625

  20. Challenges to participation in action research.

    PubMed

    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. PMID:25239444

  1. Recruiting Research Participants at Community Education Sites

    PubMed Central

    SADLER, GEORGIA ROBINS; PETERSON, MELANIE; WASSERMAN, LINDA; MILLS, PAUL L.; MALCARNE, VANESSA L.; ROCK, CHERYL; ANCOLI-ISRAEL, SONIA; MOORE, AMANDA; WELDON, RAI-NESHA; GARCIA, TENISHA; KOLODNER, RICHARD D.

    2006-01-01

    Background Minority groups are underrepresented in research, making it difficult to apply medical advances with confidence. In this study, we explored whether community-based cancer education sites and educators serving the African American community could be used to recruit minority participants to research. Methods We invited Individuals at community education sites to provide buccal scrapings, saliva samples, psychometric data, and personal information anonymously. Results Culturally aligned community sites (100%) collaborated in the research recruitment, as did 83% of the individuals at those sites. Conclusion Community-based education sites offer exceptional promise for teaching about research benefits and recruiting members of minority groups to research studies. PMID:16497136

  2. What Should Be Disclosed to Research Participants?

    PubMed Central

    Wendler, David

    2014-01-01

    Debate surrounding the SUPPORT study highlights the absence of consensus regarding what information should be disclosed to potential research participants. Some commentators endorse the view that clinical research should be subject to high disclosure standards, even when it is testing standard-of-care interventions. Others argue that trials assessing standard-of-care interventions need to disclose only the information that is disclosed in the clinical care setting. To resolve this debate, it is important to identify the ethical concerns raised by clinical research and determine what consent process is needed to address them. PMID:24256522

  3. Graduate engineering research participation in aeronautics

    NASA Technical Reports Server (NTRS)

    Roberts, A. S., Jr.

    1984-01-01

    Graduate student engineering research in aeronautics at Old Dominion University is surveyed. Student participation was facilitated through a NASA sponsored university program which enabled the students to complete degrees. Research summaries are provided and plans for the termination of the grant program are outlined. Project topics include: Failure modes for mechanically fastened joints in composite materials; The dynamic stability of an earth orbiting satellite deploying hinged appendages; The analysis of the Losipescu shear test for composite materials; and the effect of boundary layer structure on wing tip vortex formation and decay.

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

    NASA Astrophysics Data System (ADS)

    Eiseman, Elisa

    2001-03-01

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

  5. Ethical Considerations in Research Participation Virality.

    PubMed

    Ellis-Barton, Carol

    2016-07-01

    This article seeks to commence and encourage discussion around the upcoming ethical challenges of virality in network structures. When the call for participation in a research project on lupus in Ireland went from an advertisement in a newsletter to a meme (unit of transmissible information) on a closed Facebook page, the ethical considerations of virality were raised. The article analyzes the Association of Internet Researchers guidelines, Facebook policies, and the context of privacy in relation to virality. Virality creates the leverage for methodological pluralism. The nature of the inquiry can determine the method rather than the other way around. Viral ethical considerations are evolving due to the cyber world becoming the primary meme of communication, with flexibility in the researcher's protocol providing opportunities for efficient, cost-effective, and diverse recruitment. PMID:27534590

  6. Research subject advocate: a new protector of research participants.

    PubMed

    Neill, Kathleen M

    2003-01-01

    In 2001, the National Center for Research Resources (NCRR) directed the 78 General Clinical Research Centers (GCRC) to develop a Research Subject Advocate (RSA) position. The RSA would report directly to the Principal Investigator (PI) of each GCRC and assure compliance of studies conducted on the GCRC with federal regulations and policies. Seven RSAs agreed to be interviewed about their new role. Website documents, electronic correspondence, and presentations at the first annual national meeting of RSAs were scrutinized using discursive analysis to shed light on this new organizational form and its potential for increased protection of human research participants. The RSA role actualizes the ethical principles of respect for persons, justice, and beneficence that are the foundation of the protection of research participants. The results also reveal the regulatory, institutional, collegial, and personal resources and barriers that assist the RSA in the successful implementation of the RSA role. In addition, issues important to the RSAs are described. PMID:14979318

  7. Music Participation: Theory, Research, and Policy.

    ERIC Educational Resources Information Center

    Gates, J. Terry

    1991-01-01

    Bases a music participation theory on findings in music education, ethnomusicology, and sociology of leisure. Posits six types of music participants: professionals, apprentices, amateurs, hobbyists, recreationists, and dabblers. Distinguishes each type by theoretical variations in cost-benefit relationships as perceived by participants. Discusses…

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

    ERIC Educational Resources Information Center

    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,…

  9. A review of research on nanoparticulate flow undergoing coagulation

    NASA Astrophysics Data System (ADS)

    Lin, Jianzhong; Huo, Linlin

    2015-06-01

    Nanoparticulate flows occur in a wide range of natural phenomena and engineering applications and, hence, have attracted much attention. The purpose of the present paper is to provide a review of the research conducted over the last decade. The research covered relates to the Brownian coagulation of monodisperse and polydisperse particles, the Taylor-series expansion method of moment, and nanoparticle distributions due to coagulation in pipe and channel flow, jet flow, and the mixing layer and in the process of flame synthesis and deposition.

  10. A Video Introduction to Psychology: Enhancing Research Interest and Participation

    ERIC Educational Resources Information Center

    Sacco, Donald F.; Bernstein, Michael J.

    2010-01-01

    To assess the extent to which a video about psychological research would heighten introductory psychology students' interest and participation in research studies, we created a video about ongoing research at our university, the value of research participation, and course requirements for the research experience. Instructors in 4 courses (N = 471…

  11. Giving Light to Voice: Individual Stories of Photovoice Research Participation

    ERIC Educational Resources Information Center

    Morton, Janet Lee

    2012-01-01

    The purpose of this research was to describe the individual experiences of support group members from a vulnerable population who had participated in Photovoice, a participatory action research strategy aimed at social change. The two research questions that guided this research were: 1. What are the experiences of individuals participating in a…

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

    ERIC Educational Resources Information Center

    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…

  13. Assessing the Experience of Medically Ill Youth Participating in Psychological Research: Benefit, Burden, or Both?

    PubMed Central

    Wiener, L; Battles, H; Zadeh, S; Pao, M

    2014-01-01

    Few data exist pertaining to the perceived burdens or benefits of medically ill children participating in psychological research studies, particularly in outpatient pediatric settings. As part of a larger study that involved completing self-report questionnaires, this study assessed whether participation was burdensome and/or beneficial to 271 children undergoing treatment for cancer, NF1, sickle cell, HIV, primary immune deficiencies, and Li Fraumeni and to their caregivers. The majority of patients (83%) and their caregivers (93%) did not find participating burdensome. Moreover, the majority of patients (85%) and caregivers (95%) found at least some benefit to participation, including finding it helpful to be asked about issues that affect their life and feeling good about helping others. The data suggest that resistance to psychological research based on the belief that such research is intrusive and potentially harmful overestimates the negative aspects and potentially impedes progress studying positive psychosocial outcomes in outpatient pediatric research. PMID:26783591

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

    PubMed Central

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

    2010-01-01

    Research assessing attitudes toward consent processes for high-throughput genomic-wide technologies and widespread sharing of data is limited. In order to develop a better understanding of stakeholder views toward these issues, this cross-sectional study assessed public and biorepository participant attitudes toward research participation and sharing of genetic research data. Forty-nine individuals participated in 6 focus groups; 28 in 3 public focus groups and 21 in 3 NUgene biorepository participant focus groups. In the public focus groups, 75% of participants were women, 75% had some college education or more, 46% were African-American and 29% were Hispanic. In the NUgene focus groups, 67% of participants were women, 95% had some college education or more, and the majority (76%) of participants was Caucasian. Five major themes were identified in the focus group data: (a) a wide spectrum of understanding of genetic research; (b) pros and cons of participation in genetic research; (c) influence of credibility and trust of the research institution; (d) concerns about sharing genetic research data and need for transparency in the Policy for Sharing of Data in National Institutes of Health-Supported or Conducted Genome-Wide Association Studies; (e) a need for more information and education about genetic research. In order to increase public understanding and address potential concerns about genetic research, future efforts should be aimed at involving the public in genetic research policy development and in identifying or developing appropriate educational strategies to meet the public's needs. PMID:20805700

  15. Participating in Alzheimer's Research: For Yourself and Future Generations

    MedlinePlus

    ... ADEAR Participating in Alzheimer's Research: For Yourself and Future Generations Introduction Participating in a clinical trial or ... prevent Alzheimer's and other diseases, and could help future generations lead healthier lives. "When I was diagnosed ...

  16. Expanding Participation in Fluid Dynamics Research

    NASA Astrophysics Data System (ADS)

    Tagg, Randall

    2015-11-01

    Two legacies provided by great scientists are scientific discoveries and more scientists. Is there a way that these impacts can be magnified? Examples using the Taylor-Couette experiment and other fluid dynamics problems will demonstrate that indeed more people can fruitfully engage in open and even bold investigation. Participants include high school students, teachers, undergraduates, artists, business developers and interested laypersons. With imagination, good training, and a suitable lab space, a special tribute can be given to those who mentor us by scaling up the breadth of their influence.

  17. Research Participation for Course Credit in Introduction to Psychology: Why Don't People Participate?

    ERIC Educational Resources Information Center

    Elicker, Joelle D.; McConnell, Nicole L.; Hall, Rosalie J.

    2010-01-01

    Psychology courses often include an experiential component whereby instructors require or allow students to participate in research or an equitable alternative activity for course credit. We investigated self-reported reasons why students chose to not participate in research, in spite of the potential incentive of earning extra credit. Our sample…

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

    ERIC Educational Resources Information Center

    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…

  19. Developmental Brain Research with Participants from Underprivileged Communities: Strategies for Recruitment, Participation, and Retention

    ERIC Educational Resources Information Center

    Habibi, Assal; Sarkissian, Alissa Der; Gomez, Martha; Ilari, Beatriz

    2015-01-01

    Challenges associated with recruitment and retention of participants from underprivileged social communities, in addition to neuroscience researchers' unfamiliarity with these communities, possibly explain the limited number of individuals from these communities who participate in neuroscience research studies. The consequence is a scarcity of…

  20. Graduate engineering research participation in aeronautics

    NASA Technical Reports Server (NTRS)

    Roberts, A. S., Jr.

    1986-01-01

    The Aeronautics Graduate Research Program commenced in 1971, with the primary goal of engaging students who qualified for regular admission to the Graduate School of Engineering at Old Dominion University in a graduate engineering research and study program in collaboration with NASA Langley Research Center, Hampton, Virginia. The format and purposes of this program are discussed. Student selection and program statistics are summarized. Abstracts are presented in the folowing areas: aircraft design, aerodynamics, lift/drag characteristics; avionics; fluid mechanics; solid mechanics; instrumentation and measurement techniques; thermophysical properties experiments; large space structures; earth orbital dynamics; and environmental engineering.

  1. Researching Educational Praxis: Spectator and Participant Perspectives

    ERIC Educational Resources Information Center

    Kemmis, Stephen

    2012-01-01

    This paper describes two parallel research programmes exploring educational practice/praxis. The first, including a theory of "practice architectures", aims to contribute to contemporary practice theory that views practice from the perspective of a spectator. The second aims to contribute to an emerging (practical philosophy) tradition of…

  2. The neuroimaging research process from the participants' perspective.

    PubMed

    Cooke, Richard; Peel, Elizabeth; Shaw, Rachel L; Senior, Carl

    2007-02-01

    The aim of this study was to investigate participants' experiences of taking part in research conducted using fMRI or MEG procedures. Forty-four participants completed a questionnaire after taking part in either fMRI or MEG experiments; the questionnaire asked about experiences of and attitudes toward fMRI/MEG. Ten follow-up interviews were conducted to enable an in-depth analysis of these attitudes and experiences. The findings were generally positive: all participants thought fMRI and MEG were safe procedures, 93% would recommend participating in neuroimaging research to their friends and family, and participants were positive about participating in future neuroimaging research. However, some negative issues were identified. Some participants reported feeling nervous prior to scanning procedures, several participants reported side-effects after taking part, a number of participants were upset at being in a confined space and some participants did not feel confident about exiting the scanner in an emergency. Several recommendations for researchers are made, including a virtual tour of the scanning equipment during the consenting process in order to better prepare potential participants for the scanning experience and to minimize the potential psychological discomfort sometimes experienced in neuroimaging research. PMID:16806548

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

    PubMed

    Iltis, Ana S

    2013-06-01

    Decisions concerning children in the health care setting have engendered significant controversy and sparked ethics policies and statements, legal action, and guidelines regarding who ought to make decisions involving children and how such decisions ought to be made. Traditionally, parents have been the default decision-makers for children not only with regard to health care but with regard to other matters, such as religious practice and education. In recent decades, there has been a steady trend away from the view that parents are in authority over their children and toward the view that children are rights-bearers who should be granted greater authority over themselves. The mature minor doctrine refers to the decision to grant mature minors the authority to make decisions traditionally reserved for their parents. This essay (1) documents the trend towards expanding the understanding of some minors as "mature" and hence as having the right and authority to give informed consent, (2) examines the reasons for which some commentators have a special interest in expanding the mature minor doctrine to the research setting and allowing minors to enroll in research without parental permission, and (3) defends the view that the mature minor doctrine, regardless of its application to clinical health care decisions, ought to be set aside in the research setting in favor of greater parental involvement. PMID:23607974

  4. Using Exam Bonus Points as Incentive for Research Participation.

    ERIC Educational Resources Information Center

    Ferrari, Joseph R.; McGowan, Stephanie

    2002-01-01

    Examines the use of an incentive program for motivating students. Offers examination bonus points to students as an incentive to finish their required participation in department-wide research. Finds that the incentive program benefited teachers, students, and researchers. (CMK)

  5. Participant-Centric Initiatives: Tools to Facilitate Engagement In Research

    PubMed Central

    Anderson, Nicholas; Bragg, Caleb; Hartzler, Andrea; Edwards, Kelly

    2014-01-01

    Clinical genomic research faces increasing challenges in establishing participant privacy and consent processes that facilitate meaningful choice and communication capacity for longitudinal and secondary research uses. There are an evolving range of participant-centric initiatives that combine web-based informatics tools with new models of engagement and research collaboration. These emerging initiatives may become valuable approaches to support large-scale and longitudinal research studies. We highlight and discuss four types of emerging initiatives for engaging and sustaining participation in research. PMID:24772384

  6. Older adolescents’ views regarding participation in Facebook research

    PubMed Central

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

    2012-01-01

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

  7. Challenges and strategies for recruitment and retention of vulnerable research participants: promoting the benefits of participation.

    PubMed

    Gemmill, Robin; Williams, Anna Cathy; Cooke, Liz; Grant, Marcia

    2012-05-01

    The purpose of this article was to describe recruitment and retention of vulnerable hematopoietic cell transplant patients participating in a longitudinal intervention study. Utilizing Swanson's theory of caring model, nurse researchers facilitated patients' visualization of how study participation could enable them to share their experience and further clinical insights. PMID:20974092

  8. Challenging Assumptions About Minority Participation in US Clinical Research

    PubMed Central

    Kalbaugh, Corey A.

    2011-01-01

    Although extensive research addresses minorities’ low participation in clinical research, most focuses almost exclusively on therapeutic trials. The existing literature might mask important issues concerning minorities’ participation in clinical trials, and minorities might actually be overrepresented in phase I safety studies that require the participation of healthy volunteers. It is critical to consider the entire spectrum of clinical research when discussing the participation of disenfranchised groups; the literature on minorities’ distrust, poor access, and other barriers to trial participation needs reexamination. Minority participation in clinical trials is an important topic in public health discussions because this representation touches on issues of equality and the elimination of disparities, which are core values of the field. PMID:22021285

  9. Public participation processes related to nuclear research installations: what are the driving factors behind participation intention?

    PubMed

    Turcanu, Catrinel; Perko, Tanja; Laes, Erik

    2014-04-01

    This article addresses organised public participation processes related to installations for nuclear research. The aim was to determine predictors that could provide an empirical insight into the motivations underlying people's intended level of involvement. The results highlight attitude towards participation and moral norm as the strongest predictors for participation intention. Other significant predictors were time constraints, attitude towards nuclear energy, subjective and descriptive norms, and knowledge. An opposing relationship is noted between participation intention and attitude towards nuclear energy. At the same time, people who are more knowledgeable about the nuclear domain seem more willing to get involved. The analysis also revealed that financial benefits do not influence people's intended involvement in participation processes related to nuclear research installations. The results reported here are based on empirical data from a large-scale public opinion survey (N = 1020) carried out in Belgium during May-June 2011. PMID:23825284

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

    PubMed

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

    2016-07-01

    Members of the public and patients repeatedly indicate their willingness to take part in research, but current United Kingdom research governance involves complex rules about gaining consent. Research participation registers that seek consent from participants to be approached about future studies have several potential benefits, including: increased research participation across clinical and healthy populations; simplified recruitment to health care research; support for people's autonomy in decision making; and improved efficiency and generalizability of research. These potential benefits have to be balanced against ethical and governance considerations. With appropriate processes in place, seeking prospective consent from patients and members of the public to be approached about future studies could potentially increase public participation in health research without compromising informed consent and other ethical principles. PMID:26769574

  11. Informed consent among nursing students participating in biomedical research.

    PubMed

    Nambiar, Anupama; Christopher, D J; Mammen, Joy; David, Thambu; Kang, Gagandeep; David, Shirley

    2012-01-01

    For consent in biomedical research, it is essential that research participants understand the need for research, the study protocol, the risk and benefits of participation, the freedom to participate or decline and the right to leave the study at any time. A structured questionnaire was used to assess understanding and knowledge among nursing trainees participating in a cohort study investigating exposure and latent tuberculosis at a tertiary care hospital. Data were collected for 138 participants. While 97% were aware of their enrollment into a research protocol, only 78% could state that it was a study on tuberculosis. Approximately two-thirds were aware of plans for blood collection, but not all of them knew the timings or number of samples. The majority (59%) participants had consulted others before making the decision to participate, and only 73% felt that their participation was completely voluntary. Even among healthcare trainees, emphasis needs to be placed on testing both the knowledge and understanding of participants to ensure the principle and practice of truly informed consent. PMID:22864079

  12. Genomic Research and Wide Data Sharing: Views of Prospective Participants

    PubMed Central

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

    2011-01-01

    Purpose Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. The present study was designed to explore the perceptions, beliefs, and attitudes of research participants and possible future participants regarding genome-wide association studies (GWAS) and repository-based research. Methods Focus group sessions with (1) current research participants, (2) surrogate decision-makers, and (3) three age-defined cohorts (18–34 years, 35–50, >50). Results Participants expressed a variety of opinions about the acceptability of wide sharing of genetic and phenotypic information for research purposes through large, publicly accessible data repositories. Most believed that making de-identified study data available to the research community is a social good that should be pursued. Privacy and confidentiality concerns were common, though they would not necessarily preclude participation. Many participants voiced reservations about sharing data with for-profit organizations. Conclusions Trust is central in participants’ views regarding GWAS data sharing. Further research is needed to develop governance models that enact the values of stewardship. PMID:20535021

  13. The impact of participating in suicide research online.

    PubMed

    Gibson, Susanne; Boden, Zoe V R; Benson, Outi; Brand, Sarah L

    2014-08-01

    The impact of participation in online mixed-methods suicide research was investigated. Participants, who described feeling suicidal, completed an 18-item questionnaire before and after taking part (n = 103), and answered open-ended questions about participation (n = 97). Overall, participation reduced negative experiences and had no effect on positive experiences. Feelings of calm increased, but participants felt less supported. Some participants did experience distress, but some also reported this distress to be manageable. Anonymously sharing experiences of suicidality was viewed as important, had therapeutic benefits, and engendered hopes for recovery. The findings suggest a need to ensure vulnerable participants in online studies are well supported while protecting their anonymity. PMID:24527848

  14. Learning (and Researching) as Participation in Communities of Practice

    ERIC Educational Resources Information Center

    dos Santos, Madalena Pinto

    2004-01-01

    In my contribution to this panel I will bring elements from recent research I conducted (Santos, 2004) in Cape Verde aiming to clarify the meaning of learning as participation in social practices--"learning as participation in the social world" (Lave and Wenger, 1991, p. 42). But as my main interest is learning in compulsory education (in…

  15. Bioethical Issues in Providing Financial Incentives to Research Participants

    PubMed Central

    Resnik, David B.

    2015-01-01

    Offering research subjects financial incentives for their participation is a common practice that boosts recruitment but also raises ethical concerns, such as undue inducement, exploitation, and biased enrollment. This article reviews the arguments for providing participants with financial incentives, ethical concerns about payment, and approaches to establishing appropriate compensation levels. It also makes recommendations for investigators, institutions, and oversight committees. PMID:26807399

  16. Paternalism and Utilitarianism in Research with Human Participants

    PubMed Central

    Resnik, David B.

    2012-01-01

    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. PMID:23076346

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

    PubMed Central

    Wertheimer, Alan

    2014-01-01

    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. PMID:25937932

  18. Participant Observation: A Promising Research Approach for Educational Technology

    ERIC Educational Resources Information Center

    Dodge, Martin; Bogdan, Robert

    1974-01-01

    Symbolic interaction is a useful perspective, a viable theoretical approach to getting at answers to many important questions related to educational technology. Participant observation is a useful methodology for rooting answers out of the research setting. (Author)

  19. Participation of immigrant women family caregivers in qualitative research.

    PubMed

    Neufeld, A; Harrison, M J; Hughes, K D; Spitzer, D; Stewart, M J

    2001-10-01

    The recruitment of articulate, expressive participants is an essential part of methodology in qualitative research. This article presents the authors' experience in the recruitment of immigrant women of Chinese and South Asian origin in an ethnographic study. The study included women caring for an adult or child family member who had a chronic health problem. Knowledge of women family caregivers' health is restricted by the failure to include diverse groups of women in research. In this article, the authors discuss issues related to recruitment and participation of immigrant women in research, including establishing access to diverse groups of women, benefits for immigrant women, and placing the researcher and research process on the same level. Practical research strategies to address these issues and engage the women in research that portrays their perspectives are presented. The authors' discussion concludes with reflection on their experience and that of other researchers. PMID:11569331

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

    PubMed

    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. PMID:18637943

  1. A Framework for Theory and Research on Adult Education Participation.

    ERIC Educational Resources Information Center

    Cookson, Peter S.

    1986-01-01

    Proposed is a comprehensive, multivariate, multirealm theoretical framework with which to integrate and advance the theory and research of adult education participation. This article describes elements of the framework that have already been investigated and those for which there are gaps in the literature. Suggestions for further research to…

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

    ERIC Educational Resources Information Center

    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…

  3. Children's Participation in Ethnographic Research: Issues of Power and Representation

    ERIC Educational Resources Information Center

    Christensen, Pia Haudrup

    2004-01-01

    The recognition of children's social agency and active participation in research has significantly changed children's position within the human and social sciences and led to a weakening of taken-for-granted assumptions found in more conventional approaches to child research. In order to hear the voices of children in the representation of their…

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

    ERIC Educational Resources Information Center

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

    PubMed

    Miller, Felicia; Schertzer, Susan

    2014-12-01

    Detecting and reducing the effect of biased participants continues to be an important task for researchers. However, the lack of objective measures to assess demand artifact has made it difficult to effectively address this issue. This paper reports two experiments that apply a theory-based post-experimental inquiry that can systematically identify biased participants in consumer research. The results demonstrate how easily and effectively researchers can incorporate this tool into experimental studies of all types and reduce the likelihood of systematic error. PMID:25486509

  6. Research Participation Among Older Adults With Mobility Limitation

    PubMed Central

    Schlenk, Elizabeth A.; Ross, Diana; Stilley, Carol S.; Dunbar-Jacob, Jacqueline; Olshansky, Ellen

    2010-01-01

    The purpose of this qualitative descriptive study was to examine reasons for participation in clinical research among older adults with mobility limitation. A purposive sample of 20 men and 20 women aged 70 years or older was recruited. Data were collected by audiotaped telephone interviews using a semi-structured interview guide and transcribed verbatim. Participants expect privacy, professionalism by research staff, and respectful treatment. Benefits to protocol adherence include personal education, comparison of their health status with that of others, opportunity to maintain vitality, and altruism. Barriers to protocol adherence are apprehension, in particular a negative impact on their health care, randomization to the control group, and experimental drugs; and inconvenience. Factors promoting study completion are obligation, reciprocity, receipt of test results, health promotion, and socialization. Implications include meeting expectations, providing health education and study results to participants, reducing barriers to participation, and presenting opportunities for interaction with others. PMID:19692549

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

    PubMed

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

    2006-01-01

    This study examined Portuguese Canadian and Caribbean Canadian immigrants' perceptions of health research and informed consent procedures. Six focus groups (three in each cultural group) involving 42 participants and two individual interviews were conducted. The focus groups began with a general question about health research. This was followed by three short role-plays between the moderator and the assistant. The role-plays involved a fictional health research study in which a patient is approached for recruitment, is read a consent form, and is asked to sign. The role-plays stopped at key moments at which time focus group participants were asked questions about their understanding and their perceptions. Focus group transcripts were coded in QSR NUDIST software using open coding and then compared across cultural groups. Six overriding themes emerged: two were common in both the Portuguese and Caribbean transcripts, one emphasized the importance of trust and mistrust, and the other highlighted the need and desire for more information about health research. However, these themes were expressed somewhat differently in the two groups. In addition, there were four overriding themes that were specific to only one cultural group. In the Portuguese groups, there was an overwhelming positive regard for the research process and an emphasis on verbal as opposed to written information. The Caribbean participants qualified their participation in research studies and repeatedly raised images of invasive research. PMID:16039028

  8. Potential research participants support the return of raw sequence data

    PubMed Central

    Middleton, Anna; Wright, Caroline F; Morley, Katherine I; Bragin, Eugene; Firth, Helen V; Hurles, Matthew E; Parker, Michael

    2015-01-01

    Health-related results that are discovered in the process of genomic research should only be returned to research participants after being clinically validated and then delivered and followed up within a health service. Returning such results may be difficult for genomic researchers who are limited by resources or unable to access appropriate clinicians. Raw sequence data could, in theory, be returned instead. This might appear nonsensical as, on its own, it is a meaningless code with no clinical value. Yet, as and when direct to consumer genomics services become more widely available (and can be endorsed by independent health professionals and genomic researchers alike), the return of such data could become a realistic proposition. We explore attitudes from <7000 members of the public, genomic researchers, genetic health professionals and non-genetic health professionals and ask participants to suggest what they would do with a raw sequence, if offered it. Results show 62% participants were interested in using it to seek out their own clinical interpretation. Whilst we do not propose that raw sequence data should be returned at the moment, we suggest that should this become feasible in the future, participants of sequencing studies may possibly support this. PMID:25995218

  9. Potential research participants support the return of raw sequence data.

    PubMed

    Middleton, Anna; Wright, Caroline F; Morley, Katherine I; Bragin, Eugene; Firth, Helen V; Hurles, Matthew E; Parker, Michael

    2015-08-01

    Health-related results that are discovered in the process of genomic research should only be returned to research participants after being clinically validated and then delivered and followed up within a health service. Returning such results may be difficult for genomic researchers who are limited by resources or unable to access appropriate clinicians. Raw sequence data could, in theory, be returned instead. This might appear nonsensical as, on its own, it is a meaningless code with no clinical value. Yet, as and when direct to consumer genomics services become more widely available (and can be endorsed by independent health professionals and genomic researchers alike), the return of such data could become a realistic proposition. We explore attitudes from <7000 members of the public, genomic researchers, genetic health professionals and non-genetic health professionals and ask participants to suggest what they would do with a raw sequence, if offered it. Results show 62% participants were interested in using it to seek out their own clinical interpretation. Whilst we do not propose that raw sequence data should be returned at the moment, we suggest that should this become feasible in the future, participants of sequencing studies may possibly support this. PMID:25995218

  10. Worker participation in occupational health research: theory and practice.

    PubMed

    Mergler, D

    1987-01-01

    In the area of occupational health, progressive scientists in many countries are attempting to carry out scientific inquiry into the effects of working conditions on the health of workers in a participatory relationship with workers. The author proposes an action research model to describe the underlying research process, taking into account the interests of both workers and academics. For worker/scientist cooperation to be effective, means must be found for the two groups to work on an equal footing. Workers' participation in occupational health research projects takes two forms: informational input-workers' knowledge of working conditions and health problems systematized and used to better understand the work situation and its effects on health and well-being; and partnership--workers' participation in the design and realization of all stages of the research project. Institutional context and worker participation are analyzed in the present article in the light of the experiences of our research group, Group de Recherche-action en Biologie de Travail (Action Research on Work Biology), at the Université du Québec à Montréal. The group has been involved in action research with unions for the past ten years under the terms of a signed agreement between the University and the two major Québec unions, the Féderation des travailleurs (travailleuses) du Québec and the Conféderation des syndicats nationaux. PMID:3557770

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

    PubMed

    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. PMID:26642251

  12. Men's Reactions to Participating in Interpersonal Violence Research

    ERIC Educational Resources Information Center

    Edwards, Katie M.; Gidycz, Christine A.; Desai, Angeli D.

    2012-01-01

    This study assessed college men's reactions immediately following and 2 months after completing self-report measures of interpersonal violence. Results showed that 4.3% of men experienced immediate negative emotional reactions. Greater immediate negative reactions were related to personal benefits to research participation, anticipation of future…

  13. Service Learning and Participant Observation: Undergraduate Field Research.

    ERIC Educational Resources Information Center

    White, Timothy J.

    2000-01-01

    Compares the service learning experience of college students to the traditional social science technique of participant observation. Suggests that service learning allows students to test theories through personal observation in a service setting and experience the logic and practice of social research. Uses examples from the Xavier University…

  14. Who's Playing College Sports? Trends in Participation. Research Series

    ERIC Educational Resources Information Center

    Cheslock, John

    2007-01-01

    This study provides the most accurate and comprehensive examination of participation trends to date. We analyze data from almost every higher education institution in the country and utilize data and methods that are free of the shortcomings present in previous research on this subject. A 10-year NCAA sample containing 738 NCAA colleges and…

  15. The Participant Observer as "Insider": Researching Your Own Classroom.

    ERIC Educational Resources Information Center

    Herrmann, Andrea W.

    Ethnography is increasingly appealing to those who want to study their own literate society and their own discourse communities. As sensitivity to the role of context in the social construction of knowledge increases, ethnography is viewed as a particularly relevant approach for research in schools and classrooms. The participant observer, who is…

  16. A "Sense of Place" in Public Participation in Scientific Research

    ERIC Educational Resources Information Center

    Haywood, Benjamin K.

    2014-01-01

    Public participation in scientific research (PPSR) within the natural sciences has been demonstrated as an effective strategy to expand cognitive knowledge and understanding of ecology, with implications regarding individual perspectives, attitudes, and behaviors about the environment and feelings about the personal relevance of science. Yet the…

  17. Research Participant-Centered Outcomes at NIH-Supported Clinical Research Centers

    PubMed Central

    Kost, Rhonda G.; Lee, Laura N.; Yessis, Jennifer M.; Wesley, Robert; Alfano, Sandra; Alexander, Steven R.; Kassis, Sylvia Baedorf; Cola, Phil; Dozier, Ann; Ford, Dan E.; Harris, Paul; Kim, Emmelyn; Lee, Simon Craddock; O’Riordan, Gerri; Roth, Mary-Tara; Schuff, Kathryn; Wasser, June; Henderson, David K.; Coller, Barry S.

    2014-01-01

    Background Although research participation is essential for clinical investigation, few quantitative outcome measures exist to assess participants’ experiences. To address this, we developed and deployed a survey at 15 NIH-supported clinical research centers to assess participant-centered outcomes; we report responses from 4,961 participants. Methods Survey questions addressed core aspects of the research participants’ experience, including their overall rating, motivation, trust, and informed consent. We describe participant characteristics, responses to individual questions, and correlations among responses. Results Respondents broadly represented the research population in sex, race, and ethnicity. Seventy-three percent awarded top ratings to their overall research experience and 94% reported no pressure to enroll. Top ratings correlated with feeling treated with respect, listened to, and having access to the research team (R2=0.80 - 0.96). White participants trusted researchers (88%) than did non-white participants collectively (80%) (p<0.0001). Many participants felt fully prepared by the informed consent process (67%) and wanted to receive research results (72%). Conclusions Our survey demonstrates that a majority of participants at NIH-supported clinical research centers rate their research experience very positively and that participant-centered outcome measures identify actionable items for improvement of participant’s experiences, research protections, and the conduct of clinical investigation. PMID:24842076

  18. Research Participation as Work: Comparing the Perspectives of Researchers and Economically Marginalized Populations

    PubMed Central

    Page, Kimberly

    2012-01-01

    We examined the historical and regulatory framework of research with human participants in the United States, and described some possible unintended consequences of this framework in the context of paying young injection drug users for their time participating in behavioral and medical research. We drew upon our own experiences while conducting a long-running epidemiological study of hepatitis C virus infection. We found that existing ethical and regulatory framings of research participation may lead to injustices from the perspectives of research participants. We propose considering research participation as a specialized form of work and the use of community advisory boards to facilitate discussion about appropriate compensation for research participation among economically marginalized populations. PMID:22594754

  19. The participation of minorities in published pediatric research.

    PubMed Central

    Kelly, Michael L.; Ackerman, Paul D.; Ross, Lainie Friedman

    2005-01-01

    OBJECTIVES: There is extensive documentation that minority adults are underrepresented in medical research, but there are scant data regarding minority children and their parents. DESIGN: All full-length articles published in three general pediatric journals between July 2002 through June 2003 were collected and reviewed. Articles were excluded if they did not include at least one U.S. researcher, all subjects enrolled at U.S. institutions, parents or children as subjects, some prospective data collection, or between eight and 10,000 subjects. Corresponding authors were surveyed to clarify race/ethnicity data, language barriers and how race/ethnicity data were collected. RESULTS: Two-hundred-twenty-eight articles qualified for further analysis. Black children and parents and Asian/Pacific Islander parents were overrepresented, and Hispanic children and parents were underrepresented compared to the Census data. Most researchers collected race/ethnicity data by having subjects self-report. Most studies did not have translation available, although most Hispanic and Asian/Pacific Islander subjects were enrolled in studies in which translation was available. CONCLUSION: Our data show that Hispanic and Asian/Pacific Islander research subjects are more likely to participate in pediatric research when translation is available. If the goal is to ensure access to pediatric research for all ethnic populations, then more research needs to accommodate non-English-speaking participants. PMID:16035575

  20. BDNF and COX-2 participate in anti-depressive mechanisms of catalpol in rats undergoing chronic unpredictable mild stress.

    PubMed

    Wang, Jun-Ming; Yang, Lian-He; Zhang, Yue-Yue; Niu, Chun-Ling; Cui, Ying; Feng, Wei-Sheng; Wang, Gui-Fang

    2015-11-01

    Catalpol, a major compound in Rehmannia glutinosa with both medicinal and nutritional values, has been previously confirmed to shorten the duration of immobility in mice exposed to tail suspension and forced swimming tests. This study attempted to examine the anti-depressive mechanisms of catalpol in rats undergoing chronic unpredictable mild stress (CUMS) by involving brain-derived neurotrophic factor (BDNF) and cyclooxygenase-2 (COX-2). CUMS-exposed rats were given catalpol daily (5, 10, and 20mg/kg, ig) or a reference drug, fluoxetine hydrochloride (FH, 10mg/kg, ig), at 5 weeks after starting the CUMS procedure. Sucrose preference test was performed to observe depression-like behavior, and serum and brain tissues were used for neurochemical and fluorescent quantitative reverse transcription PCR analysis. CUMS induced depression-like behavior, whereas catalpol and FH administration attenuated this symptom. Moreover, CUMS caused excessively elevated levels of serum corticosterone, an index of hypothalamic-pituitary-adrenal (HPA) axis hyperactivation, in a manner attenuated by catalpol and FH administration. Catalpol administration also further decreased BDNF activities, downregulated the mRNA expression of BDNF and tropomyosin-related kinase B (TrkB), and reversed the excessive elevation in the activities and mRNA expression levels of COX-2 and prostaglandin E2 (PGE2) in the hippocampus and frontal cortex of rats undergoing CUMS. Results indicate that catalpol can ameliorate CUMS-induced depression-like behavior, and suggest its mechanisms may partially be ascribed to restoring HPA axis dysfunctions, upregulating BDNF expression and its cognate receptor TrkB, and downregulating COX-2 expression, thereby reducing PGE2 levels in the brain. PMID:26255123

  1. Research participation effects: a skeleton in the methodological cupboard☆

    PubMed Central

    McCambridge, Jim; Kypri, Kypros; Elbourne, Diana

    2014-01-01

    Objective There have been concerns about impacts of various aspects of taking part in research studies for a century. The concerns have not, however, been sufficiently well conceptualized to form traditions of study capable of defining and elaborating the nature of these problems. In this article we present a new way of thinking about a set of issues attracting long-standing attention. Study Design and Setting We briefly review existing concepts and empirical work on well-known biases in surveys and cohort studies and propose that they are connected. Results We offer the construct of “research participation effects” (RPE) as a vehicle for advancing multi-disciplinary understanding of biases. Empirical studies are needed to identify conditions in which RPE may be sufficiently large to warrant modifications of study design, analytic methods, or interpretation. We consider the value of adopting a more participant-centred view of the research process as a way of thinking about these issues, which may also have benefits in relation to research methodology more broadly. Conclusion Researchers may too readily overlook the extent to which research studies are unusual contexts, and that people may react in unexpected ways to what we invite them to do, introducing a range of biases. PMID:24766858

  2. Toolkit for evaluating impacts of public participation in scientific research

    NASA Astrophysics Data System (ADS)

    Bonney, R.; Phillips, T.

    2011-12-01

    The Toolkit for Evaluating Impacts of Public Participation in Scientific Research is being developed to meet a major need in the field of visitor studies: To provide project developers and other professionals, especially those with limited knowledge or understanding of evaluation techniques, with a systematic method for assessing project impact that facilitates longitudinal and cross-project comparisons. The need for the toolkit was first identified at the Citizen Science workshop held at the Cornell Lab of Ornithology in 2007 (McEver et al. 2007) and reaffirmed by a CAISE inquiry group that produced the recent report: "Public Participation in Scientific Research: Defining the Field and Assessing its Potential for Informal Science Education" (Bonney et al. 2009). This presentation will introduce the Toolkit, show how it is intended to be used, and describe ways that project directors can use their programmatic goals and use toolkit materials to outline a plan for evaluating the impacts of their project.

  3. Sampling: how to select participants in my research study?*

    PubMed Central

    Martínez-Mesa, Jeovany; González-Chica, David Alejandro; Duquia, Rodrigo Pereira; Bonamigo, Renan Rangel; Bastos, João Luiz

    2016-01-01

    Background In this paper, the basic elements related to the selection of participants for a health research are discussed. Sample representativeness, sample frame, types of sampling, as well as the impact that non-respondents may have on results of a study are described. The whole discussion is supported by practical examples to facilitate the reader's understanding. Objective To introduce readers to issues related to sampling. PMID:27438200

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

    PubMed

    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

  5. Electronic Protocol for Suicide Risk Management in Research Participants

    PubMed Central

    Belnap, Bea Herbeck; Schulberg, Herbert C.; He, Fanyin; Mazumdar, Sati; Reynolds, Charles F.; Rollman, Bruce L.

    2015-01-01

    Objective To describe an electronic, telephone-delivered, suicide risk management protocol (SRMP) that is designed to guide research staff and safely triage study participants who are at risk for self-harm. Methods We tested the SRMP in the context of the NIH-funded randomized clinical trial “Bypassing the Blues” in which 302 patients who had undergone coronary artery bypass graft surgery (CABG) were screened for depression and assessed by telephone 2-weeks following hospital discharge and at 2-, 4-, and 8-month follow-up. We programmed the SRMP to assign different risk levels based on patients' answers from none to imminent with action items for research staff keyed to each of them. We describe frequency of suicidal ideation, SRMP use, and completion of specific steps in the SRMP management process over the 8-month follow-up period. Results Suicidal ideation was expressed by 74 (25%) of the 302 study participants in 139 (13%) of the 1,069 blinded telephone assessments performed by research staff. The SRMP was launched in 103 (10%) of assessments, and the suicidal risk level was classified as moderate or high in 10 (1%) of these assessments, thereby necessitating an immediate evaluation by a study psychiatrist. However, no hospitalizations, emergency room visits, or deaths ascribed to suicidal ideation were discovered during the study period. Conclusion The SRMP was successful in systematically and safely guiding research staff lacking specialty mental health training through the standardized risk assessment and triage of research participants at risk for self-harm. PMID:25592159

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

    PubMed Central

    Ennis, Liam; Wykes, Til

    2016-01-01

    Background Informed consent in research is partly achieved through the use of information sheets. There is a perception however that these information sheets are long and complex. The recommended reading level for patient information is grade 6, or 11–12 years old. Aims To investigate whether the readability of participant information sheets has changed over time, whether particular study characteristics are related to poorer readability and whether readability and other study characteristics are related to successful study recruitment. Method We obtained 522 information sheets from the UK National Institute for Health Research Clinical Research Network: Mental Health portfolio database and study principal investigators. Readability was assessed with the Flesch reading index and the Grade level test. Results Information sheets increased in length over the study period. The mean grade level across all information sheets was 9.8, or 15–16 years old. A high level of patient involvement was associated with more recruitment success and studies involving pharmaceutical or device interventions were the least successful. The complexity of information sheets had little bearing on successful recruitment. Conclusions Information sheets are far more complex than the recommended reading level of grade 6 for patient information. The disparity may be exacerbated by an increasing focus on legal content. Researchers would benefit from clear guidance from ethics committees on writing succinctly and accessibly and how to balance the competing legal issues with the ability of participants to understand what a study entails. PMID:26382948

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

    NASA Technical Reports Server (NTRS)

    Clark, David A.

    1998-01-01

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

  8. Patient participation in health research: research with and for people with spinal cord injuries.

    PubMed

    Abma, Tineke A

    2005-12-01

    Traditionally, patients are rarely seen as partners in health research; their influence on priority setting, research design, the undertaking of research, and interpretation and dissemination of findings was marginal. Nowadays, health researchers, funding agencies, governments, and patient organizations are beginning to acknowledge that the passive role of patients in health research is no longer satisfactory. The emerging commitment and consensus concerning the aims and features of patient participation in research have created a need for an appropriate method to engage patients as partners in health research. In this article, the author argues that a responsive-constructivist approach to evaluation fits with the aims and features of patient participation. She illustrates its potential with a case example that concerns a dialogue among patients and (clinical) researchers in the field of spinal cord injuries. She reflects on learning experiences and the (un)expected difficulties and potentials in creating social conditions for patient participation in health research. PMID:16263914

  9. Aacap 2001 Research Forum: Challenges and Recommendations regarding Recruitment and Retention of Participants in Research Investigations

    ERIC Educational Resources Information Center

    Hinshaw, Stephen P.; Hoagwood, Kimberly; Jensen, Peter S.; Kratochvil, Christopher; Bickman, Leonard; Clarke, Greg; Abikoff, Howard B.; Atkins, Marc; Vitiello, Benedetto

    2004-01-01

    Objective: Clinical research depends on the participation of representative samples. At the 2001 Annual Meeting of the American Academy of Child and Adolescent Psychiatry, the Workgroup on Research conducted a research forum with the purpose of improving recruitment and retention of children and adolescents in research protocols. Method: An…

  10. Network of participants in European research: accepted versus rejected proposals

    NASA Astrophysics Data System (ADS)

    Tsouchnika, Maria; Argyrakis, Panos

    2014-12-01

    We investigate the network formed by the collaboration of researchers seeking funding by the European Commission by submitting research proposals. Institutions are network nodes and collaborations are links between the nodes. We constructed one network for the accepted proposals and one for the rejected ones, in order to look for any structural differences between them. To this end, first, we compare the size of the largest connected components and the resulting degree distributions. The latter show notable difference only in the region of relatively small degrees. We calculate the assortative mixing by participant type, i.e. a property which indicates whether the participant is a university/research institute, a company (non-profit included), or undefined. By aggregating the data of both networks into three geographical scales (city, region, country), we compare the degree assortativity and average node weight, in all scales. With respect to these two features the networks display similar behaviour. Finally, we compare a series of centrality measures and the Minimum Spanning Trees, at the country scale, to assess the relative performance of the countries. We find that five countries, France, Germany, the United Kingdom, Spain and Italy, play a central role in both networks, however, their relative significance is not the same.

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

    PubMed

    Enosh, Guy; Ben-Ari, Adital

    2016-03-01

    Reflexivity is defined as the constant movement between being in the phenomenon and stepping outside of it. In this article, we specify three foci of reflexivity-the researcher, the participant, and the encounter-for exploring the interview process as a dialogic liminal space of mutual reflection between researcher and participant. Whereas researchers' reflexivity has been discussed extensively in the professional discourse, participants' reflexivity has not received adequate scholarly attention, nor has the promise inherent in reflective processes occurring within the encounter. PMID:25987582

  12. Ethical Case Study of the Researcher-Participant Relationship in End-of-Life Research.

    PubMed

    Olsen, Douglas P; Lehto, Rebecca H; Chan, Roxane Raffin

    2016-09-01

    Nurse-researchers studying interventions for patients at the end-of-life may become close with participants due to the nature of interactions within the research protocol. In such studies, participants may request further interactions that would constitute clinical care beyond the scope of the protocol. Nurse-researchers may feel a conflict of values between their obligation to the research goals and their inclinations and obligations as nurses to care for their patients. Nurse-researchers in this situation aspire to honor the bonds developed through close contact and ensure participants receive standard of care while maintaining standards of research ethics. Analysis of a case and review of applicable concepts in research ethics, including ethical relationships, therapeutic misconception, equipoise, and population vulnerability, are used to develop recommendations regarding the decision parameters for similar cases. PMID:27006191

  13. Widening Participation to Doctoral Education and Research Degrees: A Research Agenda for an Emerging Policy Issue

    ERIC Educational Resources Information Center

    McCulloch, Alistair; Thomas, Liz

    2013-01-01

    Widening participation is on the political agenda but, to date, policy, practice and research has focused on undergraduate education. This article identifies an emerging widening participation focus on doctoral education. Using England as a case study, the article examines this development within the context of the long-standing concern with…

  14. Attitudes, Beliefs, and Norms of Adult Research Participants as a Basis for Outreach Education Programming

    ERIC Educational Resources Information Center

    Lyons, Joanna

    2013-01-01

    Millions of adults volunteer as research participants annually at research institutions across the nation. This research explored the attitudes, beliefs, and norms of rurally situated, adult research participants at a large research university. This systematic exploration of research participant experiences gathered information to inform the…

  15. Distraction techniques for children undergoing procedures: a critical review of pediatric research.

    PubMed

    Koller, Donna; Goldman, Ran D

    2012-12-01

    Pediatric patients are often subjected to procedures that can cause pain and anxiety. Although pharmacologic interventions can be used, distraction is a simple and effective technique that directs children's attention away from noxious stimuli. However, there is a multitude of techniques and technologies associated with distraction. Given the range of distraction techniques, the purpose of this article was to provide a critical assessment of the evidence-based literature that can inform clinical practice and future research. Recommendations include greater attention to child preferences and temperament as a means of optimizing outcomes and heightening awareness around child participation in health care decision making. PMID:21925588

  16. Retaining Participants in Outpatient and Community-Based Health Studies: Researchers and Participants in Their Own Words

    PubMed Central

    Odierna, Donna H.; Bero, Lisa A.

    2014-01-01

    Loss to follow-up can introduce bias into research, making it difficult to develop inclusive evidence-based health policies and practice guidelines. We aimed to deepen understanding of reasons why participants leave or remain in longitudinal health studies. We interviewed 59 researchers and current and former research participants in six focus groups (n = 55) or interviews (n = 4) at three study centers in a large academic research institution. We used minimally structured interview guides and inductive thematic analysis to explore participant-level, study-level, and contextual participation barriers and facilitators. Four main themes emerged: transportation, incentives and motivation, caregiver concerns, and the social and physical environment. Themes shared crosscutting issues involving funding, flexibility, and relationships between researchers and research participants. Study-level and contextual factors appear to interact with participant characteristics, particularly socioeconomic status and disease severity to affect participant retention. Participants’ characteristics do not seem to be the main cause of study dropout. Researchers and funders might be able to address contextual and study factors in ways that reduce barriers to participation. PMID:25599003

  17. Predictors of Seizure Outcomes in Children with Tuberous Sclerosis Complex and Intractable Epilepsy Undergoing Resective Epilepsy Surgery: An Individual Participant Data Meta-Analysis

    PubMed Central

    Fallah, Aria; Guyatt, Gordon H.; Snead, O. Carter; Ebrahim, Shanil; Ibrahim, George M.; Mansouri, Alireza; Reddy, Deven; Walter, Stephen D.; Kulkarni, Abhaya V.; Bhandari, Mohit; Banfield, Laura; Bhatnagar, Neera; Liang, Shuli; Teutonico, Federica; Liao, Jianxiang; Rutka, James T.

    2013-01-01

    Objective To perform a systematic review and individual participant data meta-analysis to identify preoperative factors associated with a good seizure outcome in children with Tuberous Sclerosis Complex undergoing resective epilepsy surgery. Data Sources Electronic databases (MEDLINE, EMBASE, CINAHL and Web of Science), archives of major epilepsy and neurosurgery meetings, and bibliographies of relevant articles, with no language or date restrictions. Study Selection We included case-control or cohort studies of consecutive participants undergoing resective epilepsy surgery that reported seizure outcomes. We performed title and abstract and full text screening independently and in duplicate. We resolved disagreements through discussion. Data Extraction One author performed data extraction which was verified by a second author using predefined data fields including study quality assessment using a risk of bias instrument we developed. We recorded all preoperative factors that may plausibly predict seizure outcomes. Data Synthesis To identify predictors of a good seizure outcome (i.e. Engel Class I or II) we used logistic regression adjusting for length of follow-up for each preoperative variable. Results Of 9863 citations, 20 articles reporting on 181 participants were eligible. Good seizure outcomes were observed in 126 (69%) participants (Engel Class I: 102(56%); Engel class II: 24(13%)). In univariable analyses, absence of generalized seizure semiology (OR = 3.1, 95%CI = 1.2–8.2, p = 0.022), no or mild developmental delay (OR = 7.3, 95%CI = 2.1–24.7, p = 0.001), unifocal ictal scalp electroencephalographic (EEG) abnormality (OR = 3.2, 95%CI = 1.4–7.6, p = 0.008) and EEG/Magnetic resonance imaging concordance (OR = 4.9, 95%CI = 1.8–13.5, p = 0.002) were associated with a good postoperative seizure outcome. Conclusions Small retrospective cohort studies are inherently prone to bias, some of which are overcome

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

    PubMed Central

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

    2010-01-01

    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. PMID:20234389

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

    PubMed Central

    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.

    2014-01-01

    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 towards 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. PMID:25385692

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

    PubMed

    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. PMID:25385692

  1. The LBNL High School Student Research Participation Program (HSSRPP)

    NASA Astrophysics Data System (ADS)

    McMahan, M. A.

    2007-04-01

    The HSSRPP, which has been in operation at LBNL since 2001, places 25-35 students each year in summer research internships at Lawrence Berkeley National Laboratory, a multi-purpose Department of Energy laboratory. The paid six-week internships, which are restricted to students who have completed their junior or senior year of high school, are highly sought over, with nearly 300 applications in 2006. With funding from Bechtel, the success of the program has been assessed through surveys and tracking of the student participants. In addition, as part of the application process, the students are asked the essay question, ``If you were in charge of the Science Department at your High School, what changes would you make to motivate more students to pursue careers in science and why?'' The responses of all applicants for 2004-2006 have been analyzed by gender and school district. The results will be discussed.

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

    PubMed

    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. PMID:26390107

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

    ERIC Educational Resources Information Center

    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…

  4. Moving beyond Utilitarian Perspectives of Infant Participation in Participatory Research: Film-Mediated Research Encounters

    ERIC Educational Resources Information Center

    Elwick, Sheena; Sumsion, Jennifer

    2013-01-01

    Drawing on Thomas, Whybrow and Scharber's four participatory perspectives, this paper describes and complicates endeavours to move beyond utilitarian perspectives of infant participation in participatory research. It proposes that film-mediated encounters between researchers and infants have the potential to be more than sites that privilege…

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

    PubMed

    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. PMID:25993308

  6. Research Participation versus Classroom Lecture: A Comparison of Student Learning

    ERIC Educational Resources Information Center

    Elliott, Lisa Jo; Rice, Stephen; Trafimow, David; Madson, Laura; Hipshur, Malisa F.

    2010-01-01

    Previous literature has focused on students' perceptions of participation in experiments, but has not measured the effect of participation on learning. In Study 1, students rated their perceptions of learning about psychology; they compared the classroom experience to experiment participation, reading about psychology, or summarizing a journal…

  7. Research led by participants: a new social contract for a new kind of research.

    PubMed

    Vayena, Effy; Brownsword, Roger; Edwards, Sarah Jane; Greshake, Bastian; Kahn, Jeffrey P; Ladher, Navjoyt; Montgomery, Jonathan; O'Connor, Daniel; O'Neill, Onora; Richards, Martin P; Rid, Annette; Sheehan, Mark; Wicks, Paul; Tasioulas, John

    2016-04-01

    In recent years, there have been prominent calls for a new social contract that accords a more central role to citizens in health research. Typically, this has been understood as citizens and patients having a greater voice and role within the standard research enterprise. Beyond this, however, it is important that the renegotiated contract specifically addresses the oversight of a new, path-breaking approach to health research: participant-led research. In light of the momentum behind participant-led research and its potential to advance health knowledge by challenging and complementing traditional research, it is vital for all stakeholders to work together in securing the conditions that will enable it to flourish. PMID:25825527

  8. Research led by participants: a new social contract for a new kind of research

    PubMed Central

    Vayena, Effy; Brownsword, Roger; Edwards, Sarah Jane; Greshake, Bastian; Kahn, Jeffrey P; Ladher, Navjoyt; O'Connor, Daniel; O'Neill, Onora; Richards, Martin P; Rid, Annette; Sheehan, Mark; Wicks, Paul; Tasioulas, John

    2016-01-01

    In recent years, there have been prominent calls for a new social contract that accords a more central role to citizens in health research. Typically, this has been understood as citizens and patients having a greater voice and role within the standard research enterprise. Beyond this, however, it is important that the renegotiated contract specifically addresses the oversight of a new, path-breaking approach to health research: participant-led research. In light of the momentum behind participant-led research and its potential to advance health knowledge by challenging and complementing traditional research, it is vital for all stakeholders to work together in securing the conditions that will enable it to flourish. PMID:25825527

  9. Ethical issues in neuroimaging health research: an IPA study with research participants.

    PubMed

    Shaw, Rachel L; Senior, Carl; Peel, Elizabeth; Cooke, Richard; Donnelly, Louise S

    2008-11-01

    Neuroimaging is increasingly used to understand conditions like stroke and epilepsy. However, there is growing recognition that neuroimaging can raise ethical issues. We used interpretative phenomenological analysis to analyse interview data pre-and post-scan to explore these ethical issues. Findings show participants can become anxious prior to scanning and the protocol for managing incidental findings is unclear. Participants lacked a frame of reference to contextualize their expectations and often drew on medical narratives. Recommendations to reduce anxiety include dialogue between researcher and participant to clarify understanding during consent and the use of a ;virtual tour' of the neuroimaging experience. PMID:18987078

  10. Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks.

    PubMed

    Petersen, Gloria M; Van Ness, Brian

    2015-01-01

    Research biobanks are heterogeneous and exist to manage diverse biosample types with the goal of facilitating and serving biomedical discovery. The perspectives of biobank managers are reviewed, and the perspectives of two biobank directors, one with experience in institutional biobanks and the other with national cooperative group banks, are presented. Most research biobanks are not designed, nor do they have the resources, to return research results and incidental findings to participants or their families. PMID:26479561

  11. Female survivors of child sexual abuse: finding voice through research participation.

    PubMed

    McClain, Natalie; Amar, Angela Frederick

    2013-07-01

    It is unclear whether survivors of trauma are at risk of emotional or psychological distress when they participate in research because there is little data on the subjective experience of research study participants and how they make meaning from their participation in research. This qualitative descriptive study explored the experience of research participation by survivors of childhood sexual abuse. We interviewed 12 female survivors and identified themes. Participants noted both positive personal and societal benefits of study participation and reported no harm due to their research participation. Study findings can help researchers understand the perspectives of participants regarding the benefits of taking part in violence research and can help allay concerns over causing participants undue psychological distress. PMID:23875549

  12. Females' participation in psychopharmacology research as authors, editors, and subjects.

    PubMed

    Poling, Alan; Durgin, Amy; Bradley, Kelly P; Porter, Lindsay K; Van Wagner, Karen; Weeden, Marc; Panos, John J

    2009-04-01

    This study determined the involvement of women as first authors and other authors for every article published in Experimental and Clinical Psychopharmacology, Pharmacology Biochemistry and Behavior, and Psychopharmacology in 1991, 1996, 2001, and 2006. Their involvement as editors also was determined. Women's participation as authors, but not as editors, slightly increased over time. In 2006, 43% of first authors, 38% of other authors, and 24% of editors were women. The gender of subjects was examined for the same years and journals, but could not be determined for 6% and 9% of articles employing nonhuman and human subjects, respectively. In 2006, when subjects' gender could be determined, 77% of articles involving nonhuman subjects used only males, 9% only females, and 14% both males and females. In articles using human subjects in that same year, 17% involved only males, 6% only females, and 77% both males and females. Women researchers clearly make substantial contributions to the psychopharmacology literature, but are nonetheless underrepresented as editors. Findings regarding subjects indicate that there is growing recognition of the importance of gender as a determinant of drug effects, although the vast majority of nonhuman studies continue to involve only male subjects. PMID:19331487

  13. Research in general practice: a survey of incentives and disincentives for research participation.

    PubMed

    Brodaty, Henry; Gibson, Louisa Hr; Waine, Melissa L; Shell, Allan M; Lilian, Ruth; Pond, Constance Dimity

    2013-09-01

    Background Recruitment rates of general practitioners (GPs) to do research vary widely. This may be related to the ability of a study to incorporate incentives for GPs and minimise barriers to participation. Method A convenience sample of 30 GPs, ten each from the Sydney intervention and control groups Ageing in General Practice 'Detection and Management of Dementia' project (GP project) and 10 GPs who had refused participation, were recruited to determine incentives and barriers to participating in research. GPs completed the 11-item 'Meeting the challenges of research in general practice: general practitioner questionnaire' (GP survey) between months 15 and 24 of the GP project, and received brief qualitative interviews from a research GP to clarify responses where possible. Results The most important incentives the 30 GPs gave for participating in the project were a desire to update knowledge (endorsed by 70%), to help patients (70%), and altruism (60%). Lack of time (43%) was the main barrier. GPs also commented on excessive paperwork and an inadequate explanation of research. Conclusions While a desire to update knowledge and help patients as well as altruism were incentives, time burden was the primary barrier and was likely related to extensive paperwork. Future recruitment may be improved by minimising time burden, making studies simpler with online data entry, offering remuneration and using a GP recruiter. PMID:24427184

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

    ERIC Educational Resources Information Center

    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…

  15. Increasing the Efficiency of Data Collection with a Research Participation Night

    ERIC Educational Resources Information Center

    Kilb, Angela; Herzig, Kathleen

    2016-01-01

    Data collection can be a frustrating experience for student researchers due to difficulty in scheduling appointments with participants. To increase the efficiency of research project data collection, we organized a Research Participation Night in which volunteers were incentivized to participate in as many experiments as time allowed. By offering…

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

    PubMed Central

    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. PMID:25993308

  17. Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.

    PubMed

    Wolf, Susan M; Branum, Rebecca; Koenig, Barbara A; Petersen, Gloria M; Berry, Susan A; Beskow, Laura M; Daly, Mary B; Fernandez, Conrad V; Green, Robert C; LeRoy, Bonnie S; Lindor, Noralane M; O'Rourke, P Pearl; Breitkopf, Carmen Radecki; Rothstein, Mark A; Van Ness, Brian; Wilfond, Benjamin S

    2015-01-01

    Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death. PMID:26479555

  18. Understanding motivations to participate in an observational research study: Why do patients enroll?

    PubMed

    Soule, Michael C; Beale, Eleanor E; Suarez, Laura; Beach, Scott R; Mastromauro, Carol A; Celano, Christopher M; Moore, Shannon V; Huffman, Jeff C

    2016-01-01

    By understanding common motivations for participating in observational research studies, clinicians may better understand the perceived benefits of research participation from their clients' perspective. We enrolled 164 cardiac patients in a study about the effects of gratitude and optimism. Two weeks post-enrollment, participants completed a four-item questionnaire regarding motivations for study enrollment. Altruistic motivation ranked highest, while intellectual, health-related, and financial motivations rated lower. Four subgroups of participants emerged, each with distinct characteristics and different priorities for participating. These findings may help front-line clinicians to understand which motivations for participation apply to their clients who enroll in non-treatment-based research projects. PMID:26933943

  19. Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders.

    PubMed

    Haas, Kaaren; Costley, Debra; Falkmer, Marita; Richdale, Amanda; Sofronoff, Kate; Falkmer, Torbjörn

    2016-05-01

    Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and their carers. Common and differentiating factors influencing the research participation of participants are identified and discussed. Factors influencing participation were found to differ both between and within participant categories. We propose a dichotomy whereby factors influencing research participation can be classified as those arising from a participant's values, which act as either a motivator or a deterrent; and those based on convenience, which act as either an enabler or inhibitor. These findings are applicable to research studies that seek to recruit adults with ASD as participants. PMID:26810436

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

    NASA Astrophysics Data System (ADS)

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

    2015-12-01

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

  1. Adults with Intellectual Disabilities and Their Carers as Researchers and Participants in a RCT

    ERIC Educational Resources Information Center

    Turk, Vicky; Leer, Geoffrey; Burchell, Sarah; Khattram, Sukhjinder; Corney, Roslyn; Rowlands, Gill

    2012-01-01

    Background: This article describes the process of including people with intellectual disabilities (ID) and carers of people with ID as researchers and participants in randomised controlled trial (RCT) research. People with ID are rarely involved in research about their health, either as researchers or participants. Carers are often included as…

  2. Accountability to Research Participants: Unresolved Dilemmas and Unravelling Ethics

    ERIC Educational Resources Information Center

    Levinson, Martin P.

    2010-01-01

    Drawing on findings from an ethnographic study of Romani Gypsy groups in England (1996-2000), along with data from follow-up work involving original and additional participants (2005-ongoing), this paper explores several ethical issues that arose. It traces developing relationships across a 13-year period, identifying the problems of attempting to…

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

    ERIC Educational Resources Information Center

    Biddle, Nicholas; Cameron, Timothy

    2012-01-01

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

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

    PubMed Central

    Smith, Phillip N.; Poindexter, Erin K.; Cukrowicz, Kelly C.

    2016-01-01

    The current study explored 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 that included suicide-related content. Individuals experiencing a Major Depressive Episode were called at one and three months after the initial protocol. Participants were asked about changes in suicide ideation and the occurrence of self-harm or suicide attempts following participation. Participants reported experiencing reductions in suicide ideation at the first follow-up and no changes at the second follow-up. No participant reported having engaged in self-harm or attempting suicide at either follow-up. Results suggest that basic science/non-treatment research can be conducted safely with suicidal participants and in a manner that does not increase suicide symptoms or suicide risk. PMID:21198322

  5. Participating in Alzheimer's Research: Why Placebos Are Important

    MedlinePlus

    ... Division of Geriatrics and Clinical Gerontology Division of Neuroscience FAQs Funding Opportunities Intramural Research Program Office of ... called a “double-blind, placebo-controlled” clinical trial. Learning from Research Findings Test and placebo groups are ...

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

    ERIC Educational Resources Information Center

    Bucknall, Sue

    2012-01-01

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

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

    ERIC Educational Resources Information Center

    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 contextualizing…

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

    ERIC Educational Resources Information Center

    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…

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

    PubMed

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

    2016-05-01

    Minorities have historically been underrepresented in health-related research. Several strategies have been recommended to increase the participation of minorities in health-related research. However, most of the recommendations and guidelines apply to research in clinical or laboratory contexts. One of the more prominent methods to enhance minority participation in health-related research that has recently come to the fore is the use of community-engaged strategies. The purpose of this article is to summarize community-engaged outreach efforts that can be translated into useable strategies for health education research teams seeking to diversify the pool of research participants. Also, we provide a succinct overview of the various components of a research endeavor that may influence minority participation in health-related research. Finally, we analyze how health education specialists and SOPHE (Society of Public Health Education) can play a leading role in helping enhance minority participation in health-related research. PMID:27091602

  10. Young Children's Decisions about Research Participation: Opting out

    ERIC Educational Resources Information Center

    Dockett, Sue; Einarsdottir, Johanna; Perry, Bob

    2012-01-01

    Participatory approaches to engaging in research with young children place a great deal of emphasis on children's rights to choose whether or not they wish to be involved. A number of recent studies have reported a range of strategies both to inform children of their research rights and to establish options for checking children's understanding of…

  11. Ethical Issues Affecting Human Participants in Community College Research

    ERIC Educational Resources Information Center

    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…

  12. Recruiting Ethnically Diverse Participants into Qualitative Health Research: Lessons Learned

    ERIC Educational Resources Information Center

    Renert, Hagar; Russell-Mayhew, Shelly; Arthur, Nancy

    2013-01-01

    The inclusion of ethnically diverse populations in health research is crucial for addressing ethnic disparities in health status and care. Despite this need, non-dominant ethnic groups continue to be under-represented in health studies. The reasons may be at least partly due to the difficulties inherent in recruiting such groups for research. In…

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

    ERIC Educational Resources Information Center

    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…

  14. NCVER Building Researcher Capacity Scholarship: A Rural Participant's Perspective

    ERIC Educational Resources Information Center

    Bowden, Anne

    2015-01-01

    This article uses an autoethnographic methodology to describe the experience of a novice practitioner-researcher engaging in the NCVER community of practice (CoP). The author's experience of the journey from vocational education and training (VET) practitioner to practitioner-researcher is recorded. The findings show that the numerous aspirations…

  15. Does Every Student Have a Voice? Critical Action Research on Equitable Classroom Participation Practices

    ERIC Educational Resources Information Center

    Mack, Lindsay

    2012-01-01

    This article explores the design and implementation of critical action research undertaken to encourage equal classroom participation. Building on a body of literature on critical action research and oral participation, the author reports her research project undertaken in a multi-lingual and multi-ethnic class in Japan to examine practices of how…

  16. Gatekeepers of Science: Attitudes toward the Research Participation of Adults with Intellectual Disability

    ERIC Educational Resources Information Center

    McDonald, Katherine E.; Keys, Christopher B.; Henry, David B.

    2008-01-01

    Researchers and Institutional Review Board (IRB) members' attitudes influence scientific knowledge about individuals with intellectual disability. We recruited 260 intellectual disability researchers and IRB members to develop a measure of attitudes toward the research participation of adults with intellectual disability, the Participation in…

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

    SciTech Connect

    1996-03-01

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

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

    NASA Astrophysics Data System (ADS)

    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. A Research-Based Approach to Participation Assessment: Evolving beyond Problems to Possibilities

    ERIC Educational Resources Information Center

    Flaherty, Joan; Choi, H. S. Chris; Johan, Novie

    2008-01-01

    This research study, undertaken across a department, presents the results of two focus groups in which twenty undergraduate students offer their views on participation assessment and its underlying goal of student engagement. Barriers to fairly assessing participation are discussed along with their solutions. Assessing participation, though, isn't…

  20. A Conceptual Framework and Proposed Taxonomy for Social Policy Research on Participation in Adult Education.

    ERIC Educational Resources Information Center

    Quigley, B. Allan

    Although a considerable body of research has been developed in recent years on participation in adult education, little has been done from the standpoint of social policy and its impact on participation. To assist investigation of this aspect of participation, three social policy models are presented: market models, progressive-liberal-welfare…

  1. Teaming from Three Perspectives: Interviews with Participatory Action Research Participants

    ERIC Educational Resources Information Center

    Cain, Judith

    2008-01-01

    Taking part in the autism spectrum disorder participatory action research (ASD PAR) project was a genuine team effort for the group of people supporting Rose, a primary school student with Asperger syndrome. The following excerpts are from interviews with some of Rose's team. This is a collaborative approach to telling the story of the team's…

  2. Developing Graduate Attributes through Participation in Undergraduate Research Conferences

    ERIC Educational Resources Information Center

    Hill, Jennifer; Walkington, Helen

    2016-01-01

    Graduate attributes are a framework of skills, attitudes, values and knowledge that graduates should develop by the end of their degree programmes. Adopting a largely qualitative approach and using semi-structured interviews, this paper outlines students' experiences at a national undergraduate research conference over three years and evidences…

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

    ERIC Educational Resources Information Center

    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…

  4. The Generalizability of a Participant Registry for Minority Health Research

    ERIC Educational Resources Information Center

    Lichtenberg, Peter A.

    2011-01-01

    Purpose: Effective strategies to recruit minority elders into health research (e.g., through churches, partnering with community gatekeepers) often involve nonrandom sampling methods. The current study has two aims: (a) to examine some new practices in recruitment of African American elders and (b) to determine the similarities and differences of…

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

    ERIC Educational Resources Information Center

    Newfield, Denise

    2011-01-01

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

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

    ERIC Educational Resources Information Center

    McTavish, Marianne; Streelasky, Jodi; Coles, Linda

    2012-01-01

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

  7. In need of remedy: US policy for compensating injured research participants.

    PubMed

    Pike, Elizabeth R

    2014-03-01

    There is an emerging ethical consensus that injured research participants should receive medical care and compensation for their research-related injuries. This consensus is premised on notions of beneficence, distributive justice, compensatory justice and reciprocity. In response, countries around the world have implemented no-fault compensation systems to ensure that research participants are adequately protected in the event of injury. The United States, the world's leading sponsor of research, has chosen instead to rely on its legal system to provide injured research participants with medical care and compensation. This article argues that US reliance on its legal system leaves injured research participants unprotected in the event of injury. Nearly every injured research participant will have difficulty receiving compensation in court, and certain classes of research participants will be barred from receiving compensation altogether. The United States' outlier status also threatens to impede US-sponsored multinational research, potentially delaying important biomedical advances. To rectify this injustice, researchers, Institutional Review Boards, sponsors and research institutions should advocate systematic no-fault compensation in the United States to bring US law into accord with global ethical norms and ensure that injured research participants are adequately protected. PMID:23572565

  8. Participant views on consent in cancer genetics research: preparing for the precision medicine era.

    PubMed

    Edwards, Karen L; Korngiebel, Diane M; Pfeifer, Lesley; Goodman, Deborah; Renz, Anne; Wenzel, Lari; Bowen, Deborah J; Condit, Celeste M

    2016-04-01

    The Precision Medicine Initiative (PMI) has created considerable discussions about research participant issues including re-consent and how and when to incorporate the patient experience into clinical trials. Within the changing landscape of genetic and genomic research, the preferences of participants are lacking yet are needed to inform policy. With the growing use of biobanks intended to support studies, including the national research cohort proposed under the PMI, understanding participant preferences, including re-consent, is a pressing concern. The Participant Issues Project (PIP) addresses this gap, and here we present data on participant attitudes regarding re-consent and broad consent in research studies. PIP study participants came from the Northwest Cancer Genetics Registry and included cancer patients, relatives, and controls. Thirty telephone interviews were conducted and analyzed using content and thematic analysis. Results indicate that in some scenarios, re-consent is needed. Most participants agreed that re-consent was necessary when the study direction changed significantly or a child participant became an adult, but not if the genetic variant changed. Most participants' willingness to participate in research would not be affected if the researcher or institution profited or if a broad consent form were used. Participants emphasized re-consent to provide information and control of the use of their data, now relevant for tailored treatment, while also prioritizing research as important. In the era of precision medicine, it is essential that policy makers consider participant preferences with regard to use of their materials and that participants understand genetic and genomic research and its harms and benefits as well as what broad consent entails, including privacy and re-identification risks. PMID:26801345

  9. ELSI practices in genomic research in East Asia: implications for research collaboration and public participation.

    PubMed

    Yoshizawa, Go; Ho, Calvin Wai-Loon; Zhu, Wei; Hu, Chingli; Syukriani, Yoni; Lee, Ilhak; Kim, Hannah; Tsai, Daniel Fu Chang; Minari, Jusaku; Kato, Kazuto

    2014-01-01

    Common infrastructures and platforms are required for international collaborations in large-scale human genomic research and policy development, such as the Global Alliance for Genomics and Health and the 'ELSI 2.0' initiative. Such initiatives may require international harmonization of ethical and regulatory requirements. To enable this, however, a greater understanding of issues and practices that relate to the ethical, legal and social implications (ELSI) of genomic research will be needed for the different countries and global regions involved in such research. Here, we review the ELSI practices and regulations for genomic research in six East Asian countries (China, Indonesia, Japan, Singapore, South Korea and Taiwan), highlighting the main similarities and differences between these countries, and more generally, in relation to Western countries. While there are significant differences in ELSI practices among these East Asian countries, there is a consistent emphasis on advancing genomic science and technology. In addition, considerable emphasis is placed on informed consent for participation in research, whether through the contribution of tissue samples or personal information. However, a higher level of engagement with interested stakeholders and the public will be needed in some countries. PMID:24944586

  10. ELSI practices in genomic research in East Asia: implications for research collaboration and public participation

    PubMed Central

    2014-01-01

    Common infrastructures and platforms are required for international collaborations in large-scale human genomic research and policy development, such as the Global Alliance for Genomics and Health and the ‘ELSI 2.0’ initiative. Such initiatives may require international harmonization of ethical and regulatory requirements. To enable this, however, a greater understanding of issues and practices that relate to the ethical, legal and social implications (ELSI) of genomic research will be needed for the different countries and global regions involved in such research. Here, we review the ELSI practices and regulations for genomic research in six East Asian countries (China, Indonesia, Japan, Singapore, South Korea and Taiwan), highlighting the main similarities and differences between these countries, and more generally, in relation to Western countries. While there are significant differences in ELSI practices among these East Asian countries, there is a consistent emphasis on advancing genomic science and technology. In addition, considerable emphasis is placed on informed consent for participation in research, whether through the contribution of tissue samples or personal information. However, a higher level of engagement with interested stakeholders and the public will be needed in some countries. PMID:24944586

  11. Incentives for research participation: policy and practice from Canadian corrections.

    PubMed

    Matheson, Flora I; Forrester, Pamela; Brazil, Amanda; Doherty, Sherri; Affleck, Lindy

    2012-08-01

    We explored current policies and practices on the use of incentives in research involving adult offenders under correctional supervision in prison and in the community (probation and parole) in Canada. We contacted the correctional departments of each of the Canadian provinces and territories, as well as the federal government department responsible for offenders serving sentences of two years or more. Findings indicated that two departments had formal policy whereas others had unwritten practices, some prohibiting their use and others allowing incentives on a case-by-case basis. Given the differences across jurisdictions, it would be valuable to examine how current incentive policies and practices are implemented to inform national best practices on incentives for offender-based research. PMID:22698018

  12. Broadening Participation in the Geosciences through Participatory Research

    NASA Astrophysics Data System (ADS)

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

    2009-12-01

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

  13. Recruiting Healthy Volunteers for Research Participation via Internet Advertising

    PubMed Central

    Bramstedt, Katrina A.

    2007-01-01

    Objective: The Internet is frequently used as a tool to recruit research subjects, and the US Food and Drug Administration (FDA) provides general guidance regarding such advertising. The goal of this study was to explore the incidence and nature of ethically inappropriate recruiting advertisements on the Internet and to provide descriptive guidance to researchers for responsible Internet recruiting. Methods: In this study, 119 advertisements recruiting health volunteers and listed on the CenterWatch Clinical Trials Listing Service website were reviewed for content as well as text style and visual effects. Results: The majority of advertisements satisfied FDA guidance. However, 21 (18%) were ethically troubling with regard to font size, font style, and/or verbiage. In many advertisements, it was unclear if “medication” meant “investigational drug,” “over-the-counter medication” or US FDA approved “prescription medication.” Nearly 30% of the 119 advertisements used the terms “free,” “no charge” or “no cost” as lures. Conclusion: Ethically problematic recruiting advertisements can be coercive and misleading. Descriptive guidance provided in this paper can help clinical researchers create ethically appropriate recruiting advertisements. PMID:17607043

  14. Research participation by older adults at end of life: barriers and solutions.

    PubMed

    Mackin, Melissa Lehan; Herr, Keela; Bergen-Jackson, Kimberly; Fine, Perry; Forcucci, Chris; Sanders, Sara

    2009-07-01

    The purpose of this article is to elaborate on barriers to research participation by older adults at end of life. We focus on the hospice setting and classify barriers to research participation into six domains: societal attitudes toward death, research procedures, health care organizations, agency staff, patients' families and caregivers, and patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, and infringements on patient self-determination, as well as potential solutions to these research challenges. Our observation of the complex palliative context includes the realization that a singular change will not have large enough impact on participation. We conclude that, along with the responsibility to expand the research base addressing the needs of dying individuals, there is also a need to understand the challenges of implementing research projects with older adults at end of life. PMID:20078006

  15. Risks of alcohol consumption in laboratory studies involving human research participants.

    PubMed

    Wood, M D; Sher, K J

    2000-12-01

    Research protocols that include alcohol consumption raise a number of critical issues with regard to potential risks to research participants, researchers, and institutions. This article seeks to highlight some of these issues by presenting some of the potential risks and discussing relevant dimensions and parameters of these risks. Risks to individual research participants are the primary focus of concern, but consideration of risks associated with aspects of the experimental, contextual, and institutional setting are also considered. The authors conclude with recommendations for individuals conducting studies involving alcohol consumption by human research participants. PMID:11130151

  16. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 20 Employees' Benefits 2 2011-04-01 2011-04-01 false Participation in research and demonstration projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL... Responsibilities and Requirements § 416.1029 Participation in research and demonstration projects. We will...

  17. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 20 Employees' Benefits 2 2014-04-01 2014-04-01 false Participation in research and demonstration projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL... Responsibilities and Requirements § 416.1029 Participation in research and demonstration projects. We will...

  18. 20 CFR 404.1629 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 20 Employees' Benefits 2 2014-04-01 2014-04-01 false Participation in research and demonstration projects. 404.1629 Section 404.1629 Employees' Benefits SOCIAL SECURITY ADMINISTRATION FEDERAL OLD-AGE... Requirements § 404.1629 Participation in research and demonstration projects. We will invite...

  19. 20 CFR 404.1629 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 20 Employees' Benefits 2 2011-04-01 2011-04-01 false Participation in research and demonstration projects. 404.1629 Section 404.1629 Employees' Benefits SOCIAL SECURITY ADMINISTRATION FEDERAL OLD-AGE... Requirements § 404.1629 Participation in research and demonstration projects. We will invite...

  20. 20 CFR 404.1629 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 20 Employees' Benefits 2 2012-04-01 2012-04-01 false Participation in research and demonstration projects. 404.1629 Section 404.1629 Employees' Benefits SOCIAL SECURITY ADMINISTRATION FEDERAL OLD-AGE... Requirements § 404.1629 Participation in research and demonstration projects. We will invite...

  1. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 20 Employees' Benefits 2 2012-04-01 2012-04-01 false Participation in research and demonstration projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL... Responsibilities and Requirements § 416.1029 Participation in research and demonstration projects. We will...

  2. College Student Intentions to Participate in Internet-Based Health Research

    ERIC Educational Resources Information Center

    Reece, Michael; Smith, Matthew Lee; Jun, Mi Kyung

    2006-01-01

    To explore factors associated with college students' intentions to participate in Internet-based health research, data were collected from 502 undergraduate students enrolled in introductory-level business courses at a large midwestern university. Findings suggest that intentions to participate in Internet-based research are influenced by one's…

  3. Survey Study Investigating the Significance of Conference Participation to Undergraduate Research Students

    ERIC Educational Resources Information Center

    Mabrouk, Patricia Ann

    2009-01-01

    This article summarizes the findings of a survey study of undergraduate research (UR) students presenting their research at the fall 2007 and fall 2008 American Chemical Society (ACS) National Meetings. The purpose of the study is to probe the perceived benefits of conference participation to UR students. Results suggest that participation in…

  4. A Mixed Methods Study of Participant Reaction to Domestic Violence Research in Jordan

    ERIC Educational Resources Information Center

    Clark, Cari Jo; Shahrouri, Manal; Halasa, Louma; Khalaf, Inaam; Spencer, Rachael; Everson-Rose, Susan

    2012-01-01

    Research on domestic violence against women has increased considerably over the past few decades. Most participants in such studies find the exercise worthwhile and of greater benefit than emotional cost; however, systematic examination of participant reaction to research on violence is considerably lacking, especially in the Middle East region.…

  5. College Women's Reactions to Sexual Assault Research Participation: Is It Distressing?

    ERIC Educational Resources Information Center

    Edwards, Katie M.; Kearns, Megan C.; Calhoun, Karen S.; Gidycz, Christine A.

    2009-01-01

    This study assessed college women's reactions to participating in sexual assault research. Women with sexual victimization histories reported more negative emotional reactions than nonvictimized women, but also greater benefits. Benefits to research participation outweighed costs for both women with and without sexual victimization histories.…

  6. An Investigation Of Students With Mild Learning Disabilities Reactions To Participating In Sexuality Research

    ERIC Educational Resources Information Center

    Thomas, Gail; Kroese, Biza Stenfert

    2005-01-01

    This study investigates 35 students with mild learning disabilities reactions to participating in a research project exploring their sexual knowledge, attitudes and behaviour. Students completed an informed consent procedure prior to their participation in the sexuality research and all were interviewed using a confidential interview procedure.…

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

    ERIC Educational Resources Information Center

    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…

  8. 20 CFR 404.1629 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 20 Employees' Benefits 2 2010-04-01 2010-04-01 false Participation in research and demonstration projects. 404.1629 Section 404.1629 Employees' Benefits SOCIAL SECURITY ADMINISTRATION FEDERAL OLD-AGE... Requirements § 404.1629 Participation in research and demonstration projects. We will invite...

  9. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 20 Employees' Benefits 2 2010-04-01 2010-04-01 false Participation in research and demonstration projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL... Responsibilities and Requirements § 416.1029 Participation in research and demonstration projects. We will...

  10. Prisoners as research participants: current practice and attitudes in the UK.

    PubMed

    Charles, Anna; Rid, Annette; Davies, Hugh; Draper, Heather

    2016-04-01

    The use of prisoners as research participants is controversial. Efforts to protect them in response to past exploitation and abuse have led to strict regulations and reluctance to involve them as participants. Hence, prisoners are routinely denied the opportunity to participate in research. In the absence of comprehensive information regarding prisoners' current involvement in research, we examined UK prisoners' involvement through review of research applications to the UK National Research Ethics Service. We found that prisoners have extremely limited access to research participation. This analysis was augmented by a survey of those involved in research and research governance (UK researchers and Research Ethics Committee members). Our results suggest that pragmatic concerns regarding the perceived burden of including prisoners are far more prominent in motivating their exclusion than ethical concerns or knowledge of regulations. While prisoners may remain a vulnerable research population due to constraints upon their liberty and autonomy and the coercive nature of the prison environment, routine exclusion from participation may be disadvantageous. Rigorous ethical oversight and the shift in the prevailing attitude towards the risks and benefits of participation suggest that it may be time for research to be more accessible to prisoners in line with the principle of equivalence in prison healthcare. We suggest the necessary first step in this process is a re-examination of current guidance in the UK and other countries with exclusions. PMID:24958334

  11. ‘What Do I Know? Should I Participate?’ Considerations on Participation in HIV Related Research among HIV Infected Adults in Bangalore, South India

    PubMed Central

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

    2013-01-01

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

  12. Factors Associated with Past Research Participation Among Low-Income Persons Living with HIV

    PubMed Central

    Kypriotakis, Georgios; Atkinson, John; Diamond, Pamela M.; Williams, Mark L.; Vidrine, Damon J.; Andrade, Roberto; Arduino, Roberto

    2012-01-01

    Abstract We described influences on past research participation among low-income persons living with HIV (PLWH) and examined whether such influences differed by study type. We analyzed a convenience sample of individuals from a large, urban clinic specializing in treating low-income PLWH. Using a computer-assisted survey, we elicited perceptions of research and participating in research, barriers, benefits, “trigger” influences, and self-efficacy in participating in research. Of 193 participants, we excluded 14 who did not identify any type of study participation, and 17 who identified “other” as study type, resulting in 162 cases for analysis. We compared results among four groups (i.e., 6 comparisons): past medical participants (n=36, 22%), past behavioral participants (n=49, 30%), individuals with no past research participation (n=52, 32%), and persons who had participated in both medical and behavioral studies (n=25, 15%). Data were analyzed using chi-square tests for categorical variables and ANOVA for continuous variables. We employed a multinomial probit (MNP) model to examine the association of multiple factors with the outcome. Confidence in ability to keep appointments, and worry about being a ‘guinea pig’ showed statistical differences in bivariate analyses. The MNP regression analysis showed differences between and across all 6 comparison groups. Fewer differences were seen across groupings of medical participants, behavioral participants, and those with no past research experience, than in comparisons with the medical-behavioral group. In the MNP regression model ‘age’ and level of certainty regarding ‘keeping yourself from being a guinea pig’ showed significant differences between past medical participants and past behavioral participants. PMID:22686261

  13. Factors associated with past research participation among low-income persons living with HIV.

    PubMed

    Slomka, Jacquelyn; Kypriotakis, Georgios; Atkinson, John; Diamond, Pamela M; Williams, Mark L; Vidrine, Damon J; Andrade, Roberto; Arduino, Roberto

    2012-08-01

    We described influences on past research participation among low-income persons living with HIV (PLWH) and examined whether such influences differed by study type. We analyzed a convenience sample of individuals from a large, urban clinic specializing in treating low-income PLWH. Using a computer-assisted survey, we elicited perceptions of research and participating in research, barriers, benefits, "trigger" influences, and self-efficacy in participating in research. Of 193 participants, we excluded 14 who did not identify any type of study participation, and 17 who identified "other" as study type, resulting in 162 cases for analysis. We compared results among four groups (i.e., 6 comparisons): past medical participants (n=36, 22%), past behavioral participants (n=49, 30%), individuals with no past research participation (n=52, 32%), and persons who had participated in both medical and behavioral studies (n=25, 15%). Data were analyzed using chi-square tests for categorical variables and ANOVA for continuous variables. We employed a multinomial probit (MNP) model to examine the association of multiple factors with the outcome. Confidence in ability to keep appointments, and worry about being a 'guinea pig' showed statistical differences in bivariate analyses. The MNP regression analysis showed differences between and across all 6 comparison groups. Fewer differences were seen across groupings of medical participants, behavioral participants, and those with no past research experience, than in comparisons with the medical-behavioral group. In the MNP regression model 'age' and level of certainty regarding 'keeping yourself from being a guinea pig' showed significant differences between past medical participants and past behavioral participants. PMID:22686261

  14. Understanding the role of gender in body image research settings: participant gender preferences for researchers and co-participants in interviews, focus groups and interventions.

    PubMed

    Yager, Zali; Diedrichs, Phillippa C; Drummond, Murray

    2013-09-01

    Participant gender preferences for body image researchers, interventionists and focus group and intervention co-participants have been largely ignored, despite recognition that such characteristics can influence the nature and quality of data collected and intervention effects. To address this, Australian women (n=505) and men (n=220) completed a questionnaire about their preferences for interviewers and focus group facilitators, for teachers delivering school-based interventions, and for co-participants in these settings. Women predominantly preferred female interviewers and teachers, and mixed-sex co-participants, but most had no preference for focus group facilitators. Body dissatisfied women were more likely to prefer female researchers and single-sex co-participants. Most men did not have specific preferences, however, body dissatisfied men were more likely to report a gender preference for interviewers and teachers. Professional capabilities, personal qualities and appearance were regarded as important researcher characteristics. These findings have important implications for body image research, particularly among high-risk groups. PMID:23876877

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

    PubMed

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

    2014-04-01

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

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

    PubMed Central

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

    2014-01-01

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

  17. Toward understanding in postmodern interview analysis: interpreting the contradictory remarks of a research participant.

    PubMed

    Power, Elaine M

    2004-07-01

    How is the qualitative research analyst to understand apparently contradictory remarks made by a research participant? Although social scientists in the positivist tradition rely on methods such as triangulation to find "truth," interpretive social scientists listen beyond, between, and underneath participants' words to understand the social conditions that produce apparent contradictions in their accounts. In this article, the author presents a case study of making sense of a research participant's contradictory comments, using a theoretical framework to understand the participant's "logic of practice." Through interpretive listening and reflexivity during the data analysis, she came to understand the participant's contradictory remarks in a way that illuminated the contradictions, as well as a significant process in the participant's life at the time: the transformation from carefree daughter to responsible mother. Such an interpretive analysis does not produce "truth" as positivist social scientists require but offers instead the satisfaction of understanding. PMID:15200804

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

    PubMed

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

    2015-10-01

    Understanding motivations of research participants is crucial for developing ethical research protocols, especially for research with vulnerable populations. Through interviews with 92 institutional review board members, prison administrators, research ethicists, and researchers, we explored key stakeholders' perceptions of what motivates incarcerated individuals to participate in research. Primary motivators identified were a desire to contribute to society, gaining knowledge and health care, acquiring incentives, and obtaining social support. The potential for undue influence or coercion were also identified as motivators. These results highlight the need for careful analysis of what motivates incarcerated individuals to participate in research as part of developing or reviewing ethically permissible and responsible research protocols. Future research should expand this line of inquiry to directly include perspectives of incarcerated individuals. PMID:26283681

  19. Implementation of a Research Participant Satisfaction Survey at an Academic Medical Center

    PubMed Central

    Smailes, Paula; Reider, Carson; Hallarn, Rose Kegler; Hafer, Lisa; Wallace, Lorraine; Miser, William F.

    2016-01-01

    This descriptive case study covers the development of a survey to assess research subject satisfaction among those participating in clinical research studies at an academic medical center (AMC). The purpose was twofold: to gauge the effectiveness of the survey, as well as to determine the level of satisfaction of the research participants. The authors developed and implemented an electronic research participant satisfaction survey. It was created to provide research teams at the authors’ AMC with a common instrument to capture research participant experiences in order to improve upon the quality of research operations. The instrument captured participant responses in a standardized format. Ultimately, the results are to serve as a means to improve the research experience of participants for single studies, studies conducted within a division or department of the AMC, or across the entire research enterprise at the institution. For ease of use, the survey was created within an electronic data capture system known as REDCap, which is used by a consortium of more than 1,800 institutional partners as a tool from the Clinical and Translational Science Awards (CTSA) program of the National Institutes of Health (NIH). Participants in the survey described in this article were more than 18 years of age and participating in an institutional review board (IRB)-approved study. Results showed that the vast majority of participants surveyed had a positive experience engaging in research at the authors’ AMC. Further, the tool was found to be effective in making that determination. The authors hope to expand the use of the survey as a means to increase research satisfaction and quality at their university. PMID:27390769

  20. Beating the Barriers: Recruitment of People with Intellectual Disability to Participate in Research

    ERIC Educational Resources Information Center

    Lennox, N.; Taylor, M.; Rey-Conde, T.; Bain, C.; Purdie, D. M.; Boyle, F.

    2005-01-01

    The health status of people with intellectual disability (ID) is poor, yet very little research has been done on their health needs. There are several barriers to performing this research. The aim of our research was to examine the significant barriers encountered in recruiting adults with ID to participate in research. Our project was a…

  1. Research Participation by Older Adults at the End-of-Life: Barriers and Solutions

    PubMed Central

    Mackin, Melissa Lehan; Herr, Keela; Bergen-Jackson, Kimberly; Fine, Perry; Forcucci, Chris; Sanders, Sara

    2013-01-01

    The purpose of this paper is to elaborate upon barriers to research participation by older adults at end-of-life. We focus on the hospice setting and classify barriers to research participation into six domains:1) societal attitudes towards death; 2) research procedures; 3) health care organizations; 4) agency staff; 5) patients’ families and caregivers; and 6) patient characteristics. We characterize particular participation issues, uncertainties in participation for individuals with advanced illness, infringements upon patient self-determination, as well as, potential solutions to these research challenges. Our observation of the complex palliative context included the realization that a singular change would not have large enough impact. We concluded that simultaneous with the need to expand the research base addressing the needs of dying persons is a need to understand the challenges of implementing research projects with older persons at end-of-life. PMID:20078006

  2. Developing a Model of the Benefits and Burdens of Research Participation in Cancer Clinical Trials

    PubMed Central

    Ulrich, Connie M.; Knafl, Kathleen A.; Ratcliffe, Sarah J.; Richmond, Therese S.; Grady, Christine; Miller-Davis, Claiborne; Wallen, Gwenyth R.

    2013-01-01

    Background Recruiting and retaining human participants in cancer clinical trials is challenging for many investigators. Although we expect participants to identify and weigh the benefits and burdens of research participation for themselves, it is not clear what burdens adult cancer participants perceive in relation to benefits. We identify key attributes and develop an initial conceptual framework of benefit and burden based on interviews with individuals enrolled in cancer clinical research. Methods Semistructured interviews were conducted with a purposive sample of 32 patients enrolled in cancer clinical trials at a large northeastern cancer center. Krueger's guidelines for qualitative methodology were followed. Results Respondents reported a range of benefits and burdens associated with research participation. Benefits such as access to needed medications that subjects otherwise might not be able to afford, early detection and monitoring of the disease, potential for remission or cure, and the ability to take control of their lives through actively participating in the trial were identified. Burdens included the potentiality of side effects, worry and fear of the unknown, loss of job support, and financial concerns. Conclusions Both benefit and burden influence research participation, including recruitment and retention in clinical trials. Dimensions of benefit and burden include physical, psychological, economic, familial, and social. Understanding the benefit-burden balance involved in the voluntary consent of human subjects is a fundamental tenet of research and important to ensure that subjects have made an informed decision regarding their decision to participate in clinical research. PMID:24748992

  3. Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including after Participant Death: Empirical Results from a Cancer Biobank.

    PubMed

    Breitkopf, Carmen Radecki; Petersen, Gloria M; Wolf, Susan M; Chaffee, Kari G; Robinson, Marguerite E; Gordon, Deborah R; Lindor, Noralane M; Koenig, Barbara A

    2015-01-01

    Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death. PMID:26479556

  4. Reasons for and Reservations about Research Participation in Acutely Injured Adults

    PubMed Central

    Irani, Elliane; Richmond, Therese S.

    2014-01-01

    Purpose 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. Design and Methods 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. Findings The final sample of 214 participants was equally males and females, predominately 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 and/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. Conclusion 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. PMID:25599886

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

    PubMed Central

    McDaid, Lisa Margaret; Hilton, Shona

    2015-01-01

    An array of empirical research has emerged related to public participation in health research. To date, few studies have explored the particular perspectives of gay and bisexual men taking part in behavioural surveillance research, which includes the donation of saliva swabs to investigate HIV prevalence and rates of undiagnosed HIV. Semi-structured interviews were conducted with twenty-nine gay and bisexual men in Scotland who had participated in a bar-based survey. Thematic analysis of men’s accounts of their motives for participation and their perceptions of not receiving individual feedback on HIV status suggested a shared understanding of participation in research as a means of contributing to ‘community’ efforts to prevent the spread of HIV. Most men expressed sophisticated understandings of the purpose of behavioural research and distinguished between this and individual diagnostic testing. Despite calls for feedback on HIV results broadly, for these men feedback on HIV status was not deemed crucial. PMID:26252480

  6. Reciprocity-Based Reasons for Benefiting Research Participants: Most Fail, the Most Plausible is Problematic

    PubMed Central

    Sofaer, Neema

    2014-01-01

    A common reason for giving research participants post-trial access (PTA) to the trial intervention appeals to reciprocity, the principle, stated most generally, that if one person benefits a second, the second should reciprocate: benefit the first in return. Many authors consider it obvious that reciprocity supports PTA. Yet their reciprocity principles differ, with many authors apparently unaware of alternative versions. This article is the first to gather the range of reciprocity principles. It finds that: (1) most are false. (2) The most plausible principle, which is also problematic, applies only when participants experience significant net risks or burdens. (3) Seldom does reciprocity support PTA for participants or give researchers stronger reason to benefit participants than equally needy non-participants. (4) Reciprocity fails to explain the common view that it is bad when participants in a successful trial have benefited from the trial intervention but lack PTA to it. PMID:24602060

  7. Influence of scary beliefs about the Tuskegee Syphilis Study on willingness to participate in research

    PubMed Central

    Davis, Jenna L.; Green, B. Lee; Katz, Ralph V.

    2013-01-01

    Objectives To assess whether scary/alarming beliefs about details on the Tuskegee Syphilis Study (TSS) are associated with willingness and/or fear to participate in biomedical research. Methods Scary beliefs about TSS were examined for 565 Black and White adults who had heard of the TSS. Multivariate analyses by race were used to measure association. Results No association between scary beliefs and willingness or fear to participate in research was found (P>0.05). Conclusions These findings provide additional evidence that awareness or detailed knowledge about the TSS does not appear today to be a major factor influencing Blacks’ willingness to participate in research. PMID:22924230

  8. Do undergraduate student research participants read psychological research consent forms? Examining memory effects, condition effects, and individual differences

    PubMed Central

    Pedersen, Eric R.; Neighbors, Clayton; Tidwell, Judy; Lostutter, Ty

    2013-01-01

    While research has examined factors influencing understanding of informed consent in biomedical and forensic research, less is known about participants’ attention to details in consent documents in psychological survey research. The present study used a randomized experimental design and found the majority of participants were unable to recall information from the consent form in both in-person and online formats. Participants were also relatively poor at recognizing important aspects of the consent form including risks to participants and confidentiality procedures. Memory effects and individual difference characteristics also appeared to influence recall and recognition of consent form information. PMID:23459667

  9. Sexual Assault Victims Participating in Research: Causing Harm When Trying to Help?

    PubMed

    Nielsen, Louise Hjort; Hansen, Maj; Elklit, Ask; Bramsen, Rikke Holm

    2016-06-01

    For fear of causing unnecessary distress, ethical concerns have been raised in regard to asking vulnerable persons e.g. sexually traumatized victims to participate in scientific research studies. The current study investigates how victims of sexual assault perceived participating in scientific research in regard to victims' psychological and/or physiological distress and potential beneficial outcomes from participation (N=51). Results from interviews with victims indicated that the majority of victims of sexual assault who had taken part in the study considered their participation in research a positive experience causing little short- or long-term psychological or physiological distress. In addition, over half of the respondents reported some benefits from participation. PMID:27256950

  10. Research involvement, support needs, and factors affecting research participation: a survey of Mental Health Consultation Liaison Nurses.

    PubMed

    McMaster, Rose; Jammali-Blasi, Asmara; Andersson-Noorgard, Kurt; Cooper, Kerrie; McInnes, Elizabeth

    2013-04-01

    The aims of this study were to identify research involvement and support needs of Mental Health Consultation Liaison Nurses (MHCLN) and the factors that affect participation in research. A self-administered, standardized, anonymous questionnaire was distributed to a convenience sample of MHCLN. Frequencies and univariate analyses were calculated to examine relationships between: (i) involvement in a research study by highest qualification and job designation; and (ii) current enrolment in a higher degree study, research goals, and current research involvement by level of research skill. Open-ended responses were collated and summarized. Of the 34 workshop attendees, 32 participated in the survey (response rate 94%). Seventy-five percent of respondents agreed that involvement in research is an expectation of their role; 75% reported no current involvement in research. Over half (53%) of participants reported having research goals over the next 12 months. Those enrolled in postgraduate degrees were more likely to be currently involved in a research project (P=0.013). Commonly reported barriers to research participation were competing commitments and lack of support, resources, confidence, and motivation. This study showed that access to research support and resources, including mentorship and funding, are required to engage these MHCLN in research and to build capacity. PMID:22762255

  11. Developing a Fully Integrated Medical Transport Record to Support Comparative Effectiveness Research for Patients Undergoing Medical Transport

    PubMed Central

    Reimer, Andrew P.; Madigan, Elizabeth

    2013-01-01

    The consolidation of health care systems to develop centers of clinical excellence has led to an increased reliance on medical transport to move patients requiring time-sensitive interventions and specialized treatments. There is a paucity of outcomes data, specifically comparative effectiveness research, related to the efficacy of different transport services and the overall morbidity and mortality of patients that undergo medical transfer. The rapid development of electronic medical record (EMR) use has also occurred with transport charting. However, limited studies have incorporated transport chart data in outcomes analyses. We have begun development of a fully integrated medical transport record, combining transport and hospitals EMRs, to support research efforts and develop clinical decision support tools for transported patients. In this paper, we describe the elements necessary to develop a fully integrated medical transport EMR to support the conduct of comparative effectiveness research, outline the current limitations and challenges, and provide insight into the future direction in developing clinical decision support tools for patients requiring transport. PMID:25848576

  12. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

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

  13. A Review of Research on Small-School Student Participation in Extracurricular Activities.

    ERIC Educational Resources Information Center

    Stevens, Neil G.; Peltier, Gary L.

    1994-01-01

    Research reveals that high school students in small schools participate more in extracurricular activities than their peers in large schools; that a high degree of student participation provides opportunities for enhancing leadership, responsibility, and motivation; that students in small schools feel needed; and that the benefits of…

  14. Participation, Roles and Processes in a Collaborative Action Research Project: A Reflexive Account of the Facilitator

    ERIC Educational Resources Information Center

    Avgitidou, Sofia

    2009-01-01

    This paper analyses and discusses the roles and participation of those involved in a collaborative action research project to highlight the factors that influenced their content, quality and intensity. Emphasis is given to the reflections of the facilitator (author) on the processes employed to achieve equal participation and roles in the action…

  15. Performance Incentives in Texas: Why Schools Chose Not to Participate. Research Brief

    ERIC Educational Resources Information Center

    National Center on Performance Incentives, 2008

    2008-01-01

    In "Performance Incentives in Texas: Why Schools Chose Not to Participate"--a paper presented at the National Center on Performance Incentives research to policy conference in February--Jessica Lewis and Matthew Springer of Vanderbilt University examine why some Texas public schools declined to participate in the Texas Educator Excellence Grant…

  16. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 22 Foreign Relations 1 2014-04-01 2014-04-01 false Grants to foreign participants to lecture, teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND...

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

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... 22 Foreign Relations 1 2011-04-01 2011-04-01 false Grants to foreign participants to lecture, teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND...

  18. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 22 Foreign Relations 1 2012-04-01 2012-04-01 false Grants to foreign participants to lecture, teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND...

  19. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 22 Foreign Relations 1 2013-04-01 2013-04-01 false Grants to foreign participants to lecture, teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND...

  20. Intervention Research to Benefit People with Autism: How Old Are the Participants?

    ERIC Educational Resources Information Center

    Edwards, Timothy L.; Watkins, Erin E.; Lotfizadeh, Amin D.; Poling, Alan

    2012-01-01

    We determined the reported ages of participants with autism (or autism spectrum disorders) in 146 intervention research studies published recently in four prominent journals. Most participants were between two and eight years of age and only 1.7% of them were 20 or more years of age. These findings suggest that the special needs of older people…

  1. 'Seeing through Different Eyes': Exploring the Value of Participative Research Using Images in Schools

    ERIC Educational Resources Information Center

    Kaplan, Ian; Howes, Andy

    2004-01-01

    This article is an exploration of the value of research involving images in a school, and aims to provoke more general discussion of the purpose, value and risks of educational research using images. It reports on a participative research project in a secondary school which led to the construction of a web site based on images of that school. The…

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

    ERIC Educational Resources Information Center

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

    2015-01-01

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

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

    ERIC Educational Resources Information Center

    Burgin, Stephen R.; Sadler, Troy D.

    2013-01-01

    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…

  4. How Europe Shapes Academic Research: Insights from Participation in European Union Framework Programmes

    ERIC Educational Resources Information Center

    Primeri, Emilia; Reale, Emanuela

    2012-01-01

    This article describes the effects of participating in European Union Framework Programmes (EUFPs) at the level of research units and researchers. We consider EUFPs as policy instruments that contribute to the Europeanisation of academic research and study the changes they produce with respect to: 1) the organisation and activities of Departments,…

  5. Why Don't Our Students Respond? Understanding Declining Participation in Survey Research among College Students

    ERIC Educational Resources Information Center

    Tschepikow, William K.

    2012-01-01

    Declining response rates among college students threaten the effectiveness of survey research at institutions of higher education. The purpose of this qualitative study was to understand the conditions that promote participation in survey research among this population. The researcher identified three themes through this study. First, participants…

  6. Minority Male Participation in Educational Research and Development: A Recruitment Selection Dilemma.

    ERIC Educational Resources Information Center

    Braithwaite, Ronald L.; Beatty, Lula

    1981-01-01

    Despite Federal efforts to increase minority participation in university level research and development (R & D), there is a disproportionate underrepresentation of minority men as trainees. Reasons seem to lie in R & D recruitment strategies and practices. (Author/GC)

  7. The Tuskegee Legacy Project: Willingness of Minorities to Participate in Biomedical Research

    PubMed Central

    Katz, Ralph V.; Russell, Stefanie L.; Kegeles, S. Steven; Kressin, Nancy R.; Green, B. Lee; Wang, Min Qi; James, Sherman A.; Claudio, Cristina

    2006-01-01

    The broad goal of the Tuskegee Legacy Project (TLP) study was to address, and understand, a range of issues related to the recruitment and retention of Blacks and other minorities in biomedical research studies. The specific aim of this analysis was to compare the self-reported willingness of Blacks, Hispanics, and Whites to participate as research subjects in biomedical studies, as measured by the Likelihood of Participation (LOP) Scale and the Guinea Pig Fear Factor (GPFF) Scale. The Tuskegee Legacy Project Questionnaire, a 60 item instrument, was administered to 1,133 adult Blacks, Hispanics, and non-Hispanic Whites in 4 U.S. cities. The findings revealed no difference in self-reported willingness to participate in biomedical research, as measured by the LOP Scale, between Blacks, Hispanics, and Whites, despite Blacks being 1.8 times as likely as Whites to have a higher fear of participation in biomedical research on the GPFF Scale. PMID:17242525

  8. On the Alleged Right to Participate in High-Risk Research.

    PubMed

    Różyńska, Joanna

    2015-09-01

    Reigning regulatory frameworks for biomedical research impose on researchers and research ethics committees an obligation to protect research participants from risks that are unnecessary, disproportionate to potential research benefits, and non-minimized. Where the research has no potential to produce results of direct benefit to the subjects and the subjects are unable to give consent, these requirements are strengthened by an additional condition, that risks should not exceed a certain minimal threshold. In this article, I address the question of whether there should be limits of permissible risks in non-therapeutic research involving competent and healthy subjects. Some commentators argue that competent and informed individuals should have a right to participate even in extremely risky research and that research ethics committees should never reject studies because they are too dangerous. To use David Shaw's expression, competent volunteers should have 'a right to participate in high-risk research'. I argue that this idea is ill-founded, as it does not take into account the social mission and complex collaborative nature of research practice as well as the inequity of power between researchers and subjects. Imposition of limits on permissible risks for healthy volunteers is justified by the need to protect research enterprise and the need to protect the weaker party, namely the subjects. Also, I suggest that the best way to set boundaries on research risks is to leave the judgment of risk acceptability to research ethics committees. PMID:25644532

  9. Return of genomic results to research participants: the floor, the ceiling, and the choices in between.

    PubMed

    Jarvik, Gail P; Amendola, Laura M; Berg, Jonathan S; Brothers, Kyle; Clayton, Ellen W; Chung, Wendy; Evans, Barbara J; Evans, James P; Fullerton, Stephanie M; Gallego, Carlos J; Garrison, Nanibaa' A; Gray, Stacy W; Holm, Ingrid A; Kullo, Iftikhar J; Lehmann, Lisa Soleymani; McCarty, Cathy; Prows, Cynthia A; Rehm, Heidi L; Sharp, Richard R; Salama, Joseph; Sanderson, Saskia; Van Driest, Sara L; Williams, Marc S; Wolf, Susan M; Wolf, Wendy A; Burke, Wylie

    2014-06-01

    As more research studies incorporate next-generation sequencing (including whole-genome or whole-exome sequencing), investigators and institutional review boards face difficult questions regarding which genomic results to return to research participants and how. An American College of Medical Genetics and Genomics 2013 policy paper suggesting that pathogenic mutations in 56 specified genes should be returned in the clinical setting has raised the question of whether comparable recommendations should be considered in research settings. The Clinical Sequencing Exploratory Research (CSER) Consortium and the Electronic Medical Records and Genomics (eMERGE) Network are multisite research programs that aim to develop practical strategies for addressing questions concerning the return of results in genomic research. CSER and eMERGE committees have identified areas of consensus regarding the return of genomic results to research participants. In most circumstances, if results meet an actionability threshold for return and the research participant has consented to return, genomic results, along with referral for appropriate clinical follow-up, should be offered to participants. However, participants have a right to decline the receipt of genomic results, even when doing so might be viewed as a threat to the participants' health. Research investigators should be prepared to return research results and incidental findings discovered in the course of their research and meeting an actionability threshold, but they have no ethical obligation to actively search for such results. These positions are consistent with the recognition that clinical research is distinct from medical care in both its aims and its guiding moral principles. PMID:24814192

  10. Assessment of caregivers' willingness to participate in an intervention research study.

    PubMed

    Murphy, Margaret R; Escamilla, Monica I; Blackwell, Paula H; Lucke, Kathy T; Miner-Williams, Denise; Shaw, Virginia; Lewis, Sharon L

    2007-06-01

    The purpose of the study was to identify factors that influenced family caregivers' decisions to participate in an intervention research study. In interviews conducted before and after the intervention, caregivers (n=21) described reasons for participation. A focused content analysis was used to examine responses. Themes that emerged included: (a) caregivers recognized a need for help; (b) expectations and motivations toward change; (c) recognition of self worth as caregivers; (d) timeliness of recruitment strategies; (e) support of research staff affected recruitment; and (f) caregivers recognized the benefits of participation. These findings support the importance of many different strategies for effective recruitment of caregivers in future studies. PMID:17514708

  11. Researchers’ and Clinicians’ Perceptions of Recruiting Participants to Clinical Research: A Thematic Meta-Synthesis

    PubMed Central

    Newington, Lisa; Metcalfe, Alison

    2014-01-01

    Background Recruiting the desired number of research participants is frequently problematic with resulting financial and clinical implications. The views of individuals responsible for participant recruitment have not been previously reviewed. This systematic review and thematic meta-synthesis explores researchers’ and clinicians’ experiences and perceptions of recruiting participants to clinical research, with the aim of informing improved recruitment systems and strategies. Methods Studies published between January 1995 and May 2013 were identified from: Ovid MEDLINE, Ovid EMBASE, Ovid PSYCHINFO, ASSIA, British Nursing Index, Scopus, Web of Science, CINAHL and PubMed. Included studies were original peer reviewed research, with qualitative methodologies and an aim of exploring the views of clinicians and/or researchers on recruitment to clinical research. Studies discussing the recruitment of patients unable to give informed consent were excluded. The findings sections of the relevant studies were free coded to identify key concepts which were grouped into hierarchical themes. The quality of the identified studies was assessed and the relative contribution of each paper was checked to ensure individual studies did not dominate in any theme. Results Eighteen relevant papers were identified which examined the views of researchers and clinicians in 10 clinical specialties. Five main themes emerged: building a research community, securing resources, the nature of research, professional identities and recruitment strategies. The views of researchers and clinicians were similar, although the role of ‘researcher’ was inconsistently defined. Conclusions The general experience of recruiting participants to clinical research was one of competition and compromise. Competition arose over funding, staffing and participants, and between clinical and research responsibilities. Compromise was needed to create study designs that were acceptable to patients, clinicians and

  12. Informed Consent in Genome-Scale Research: What Do Prospective Participants Think?

    PubMed Central

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

    2012-01-01

    Background To promote effective genome-scale research, genomic and clinical data for large population samples must be collected, stored, and shared. Methods We conducted focus groups with 45 members of a Seattle-based integrated healthcare delivery system to learn about their views and expectations for informed consent in genome-scale studies. Results Participants viewed information about study purpose, aims, and how and by whom study data could be used to be at least as important as information about risks and possible harms. They generally supported a tiered consent approach for specific issues, including research purpose, data sharing, and access to individual research results. Participants expressed a continuum of opinions with respect to the acceptability of broad consent, ranging from completely acceptable to completely unacceptable. Older participants were more likely to view the consent process in relational – rather than contractual – terms, compared with younger participants. The majority of participants endorsed seeking study subjects’ permission regarding material changes in study purpose and data sharing. Conclusions Although this study sample was limited in terms of racial and socioeconomic diversity, our results suggest a strong positive interest in genomic research on the part of at least some prospective participants and indicate a need for increased public engagement, as well as strategies for ongoing communication with study participants. PMID:23493836

  13. African American Participation in Alzheimer’s Disease Research that Includes Brain Donation

    PubMed Central

    Darnell, Kathryn R.; McGuire, Caitlin

    2012-01-01

    Historically, minority groups have been underrepresented in research and clinical trials. The lack of participation by minorities has been attributed to variety of factors including a mistrust of the predominately white research establishments and a lack of education about the purpose of research. The current study was designed to determine African-American interest in Alzheimer’s disease (AD) research and to recruit African Americans as normal controls in current AD studies with the goal of eventually gaining consent for brain donation upon death. Participants were 46 African Americans aged 65 or older who were interviewed about knowledge of medical procedures and experience with research. After initial recruitment interviews, 31.7% of participants agreed to yearly testing with eventual brain donation. Study findings suggest a moderate relationship between participants’ knowledge of medical procedures used to prolong life and willingness to donate one’s brain. PMID:22009227

  14. From Subject to Participant: Ethics and the Evolving Role of Community in Health Research

    PubMed Central

    Mikesell, Lisa; Jones, Felica; Khodyakov, Dmitry

    2015-01-01

    Belmont Report principles focus on the well-being of the research subject, yet community-engaged investigators often eschew the role of subject for that of participant. We conducted semistructured interviews with 29 community and academic investigators working on 10 community-engaged studies. Interviews elicited perspectives on ethical priorities and ethical challenges. Interviewees drew on the Belmont Report to describe 4 key principles of ethical community-engaged research (embodying ethical action, respecting participants, generalizing beneficence, and negotiating justice). However, novel aspects of the participant role were the source of most ethical challenges. We theorize that the shift in ethical focus from subject to participant will pose new ethical dilemmas for community-engaged investigators and for other constituents interested in increasing community involvement in health research. PMID:25790380

  15. From subject to participant: ethics and the evolving role of community in health research.

    PubMed

    Bromley, Elizabeth; Mikesell, Lisa; Jones, Felica; Khodyakov, Dmitry

    2015-05-01

    Belmont Report principles focus on the well-being of the research subject, yet community-engaged investigators often eschew the role of subject for that of participant. We conducted semistructured interviews with 29 community and academic investigators working on 10 community-engaged studies. Interviews elicited perspectives on ethical priorities and ethical challenges. Interviewees drew on the Belmont Report to describe 4 key principles of ethical community-engaged research (embodying ethical action, respecting participants, generalizing beneficence, and negotiating justice). However, novel aspects of the participant role were the source of most ethical challenges. We theorize that the shift in ethical focus from subject to participant will pose new ethical dilemmas for community-engaged investigators and for other constituents interested in increasing community involvement in health research. PMID:25790380

  16. Insider-Outsider-Inbetweener? Researcher Positioning, Participative Methods and Cross-Cultural Educational Research

    ERIC Educational Resources Information Center

    Milligan, Lizzi

    2016-01-01

    This article reflects on the use of participative techniques with final-year secondary school students in one rural community in Western Kenya as an enabling tool for an outsider to both gain insider perspectives and develop a more insider role in that community by privileging and legitimating participant-driven data. Conclusions put forward the…

  17. Beliefs and attitudes towards participating in genetic research – a population based cross-sectional study

    PubMed Central

    2013-01-01

    Background Biobanks have the potential to offer a venue for chronic disease biomarker discovery, which would allow for disease early detection and for identification of carriers of a certain predictor biomarker. To assess the general attitudes towards genetic research and participation in biobanks in the Long Island/Queens area of New York, and what factors would predict a positive view of such research, participants from the NSLIJ hospital system were surveyed. Methods Participants were recruited at six hospital centers in the NSLIJ system during the summers of 2009 and again in 2011 (n = 1,041). Those who opted to participate were given a questionnaire containing 22 questions assessing demographics, lifestyle and attitudes towards genetic research. These questions addressed individual participant’s beliefs about the importance of genetic research, willingness to participate in genetic research themselves, and their views on informed consent issues. Results Respondents took a generally positive view of genetic research in general, as well as their own participation in such research. Those with reservations were most likely to cite concerns over the privacy of their medical and genetic information. Those who were married tended to view genetic research as important, while those in the younger age group viewed it as less important. Prior blood donation of respondents was found to be a predictor of their approval for genetic research. Demographic factors were not found to be predictive of personal willingness to participate in genetic research, or of approval for the opt-out approach to consent. Conclusions While respondents were generally inclined to approve of genetic research, and those who disapproved did not do so based on an underlying moral objection to such research, there is a disconnect between the belief in the importance of genetic research and the willingness of individuals to participate themselves. This indicates a continued concern for the ways

  18. Return of Genomic Results to Research Participants: The Floor, the Ceiling, and the Choices In Between

    PubMed Central

    Jarvik, Gail P.; Amendola, Laura M.; Berg, Jonathan S.; Brothers, Kyle; Clayton, Ellen W.; Chung, Wendy; Evans, Barbara J.; Evans, James P.; Fullerton, Stephanie M.; Gallego, Carlos J.; Garrison, Nanibaa’ A.; Gray, Stacy W.; Holm, Ingrid A.; Kullo, Iftikhar J.; Lehmann, Lisa Soleymani; McCarty, Cathy; Prows, Cynthia A.; Rehm, Heidi L.; Sharp, Richard R.; Salama, Joseph; Sanderson, Saskia; Van Driest, Sara L.; Williams, Marc S.; Wolf, Susan M.; Wolf, Wendy A.; Harley, John; Myers, Melanie; Namjou, Bahram; Vinks, Sander; Connolly, John; Keating, Brendan; Gerhard, Glenn; Sundaresan, Agnes; Tromp, Gerard; Crosslin, David; Leppig, Kathy; Wicklund, Cathy; Chute, Christopher; Lynch, John; De Andrade, Mariza; Heit, John; McCormick, Jen; Brilliant, Murray; Kitchner, Terrie; Ritchie, Marylyn; Böttinger, Erwin; Peter, Inga; Persell, Stephen; Rasmussen-Torvik, Laura; McGregor, Tracy; Roden, Dan; Antommaria, Armand; Chiavacci, Rosetta; Faucett, Andy; Ledbetter, David; Williams, Janet; Hartzler, Andrea; Vitek, Carolyn R. Rohrer; Frost, Norm; Ferryman, Kadija; Horowitz, Carol; Rhodes, Rosamond; Zinberg, Randi; Aufox, Sharon; Pan, Vivian; Long, Rochelle; Ramos, Erin; Odgis, Jackie; Wise, Anastasia; Hull, Sara; Gitlin, Jonathan; Green, Robert; Metterville, Danielle; McGuire, Amy; Kong, Sek Won; Trinidad, Sue; Veenstra, David; Roche, Myra; Skinner, Debra; Raspberry, Kelly; O’Daniel, Julianne; Parsons, Will; Eng, Christine; Hilsenbeck, Susan; Karavite, Dean; Conlin, Laura; Spinner, Nancy; Krantz, Ian; Falk, Marni; Santani, Avni; Dechene, Elizabeth; Dulik, Matthew; Bernhardt, Barbara; Schuetze, Scott; Everett, Jessica; Gornick, Michele Caroline; Wilfond, Ben; Tabor, Holly; Lemke, Amy A.; Richards, Sue; Goddard, Katrina; Cooper, Greg; East, Kelly; Barsh, Greg; Koenig, Barbara; Van Allen, Eliezer; Garber, Judy; Garrett, Jeremy; Zawati, Ma’n; Lewis, Michelle; Savage, Sarah; Smith, Maureen; Roychowdhury, Sameek; Bailey, Alice; Berkman, Benjamin; Anan, Charlisse Caga; Hindorff, Lucia; Hutter, Carolyn; King, Rosalind; Li, Rongling; Lockhart, Nicole; McEwen, Jean; Scholes, Derek; Schully, Sheri; Sun, Kathie; Burke, Wylie

    2014-01-01

    As more research studies incorporate next-generation sequencing (including whole-genome or whole-exome sequencing), investigators and institutional review boards face difficult questions regarding which genomic results to return to research participants and how. An American College of Medical Genetics and Genomics 2013 policy paper suggesting that pathogenic mutations in 56 specified genes should be returned in the clinical setting has raised the question of whether comparable recommendations should be considered in research settings. The Clinical Sequencing Exploratory Research (CSER) Consortium and the Electronic Medical Records and Genomics (eMERGE) Network are multisite research programs that aim to develop practical strategies for addressing questions concerning the return of results in genomic research. CSER and eMERGE committees have identified areas of consensus regarding the return of genomic results to research participants. In most circumstances, if results meet an actionability threshold for return and the research participant has consented to return, genomic results, along with referral for appropriate clinical follow-up, should be offered to participants. However, participants have a right to decline the receipt of genomic results, even when doing so might be viewed as a threat to the participants’ health. Research investigators should be prepared to return research results and incidental findings discovered in the course of their research and meeting an actionability threshold, but they have no ethical obligation to actively search for such results. These positions are consistent with the recognition that clinical research is distinct from medical care in both its aims and its guiding moral principles. PMID:24814192

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

    PubMed

    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 < 0.00001). In conclusion, Sports and Exercise Medicine practitioners should be cognisant of sexual dimorphism and gender disparity in the current literature. PMID:24766579

  20. Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders

    ERIC Educational Resources Information Center

    Haas, Kaaren; Costley, Debra; Falkmer, Marita; Richdale, Amanda; Sofronoff, Kate; Falkmer, Torbjörn

    2016-01-01

    Recruiting adults with autism spectrum disorders (ASD) into research poses particular difficulties; longitudinal studies face additional challenges. This paper reports on a mixed methods study to identify factors influencing the participation in longitudinal autism research of adults with ASD, including those with an intellectual disability, and…

  1. Using CAI To Improve Participation and Achievement in Science Research Projects in Middle School Science.

    ERIC Educational Resources Information Center

    Price, Suzanne M.

    The high percentage of students not participating in or completing a science research project has been a recurring problem for science teachers. In this project, three variables influencing the problem are identified: (1) students' failure to engage in an active search for science research topics; (2) inadequate resource materials at the middle…

  2. Educating for a Critical Democracy: Civic Participation Reimagined in the Council of Youth Research

    ERIC Educational Resources Information Center

    Mirra, Nicole; Morrell, Ernest D.; Cain, Ebony; Scorza, D'Artagnan; Ford, Arlene

    2013-01-01

    This article explores civic learning, civic participation, and the development of civic agency within the Council of Youth Research (the Council), a program that engages high school students in youth participatory action research projects that challenge school inequalities and mobilize others in pursuit of educational justice. We critique the…

  3. Challenges in the Use of Social Networking Sites to Trace Potential Research Participants

    ERIC Educational Resources Information Center

    Marsh, Jackie; Bishop, Julia C.

    2014-01-01

    This paper reports on a number of challenges faced in tracing contributors to research projects that were originally conducted many decades previously. The need to trace contributors in this way arises in projects which focus on involving research participants in previous studies who have not been maintained on a database, or with whom the…

  4. Quality of Life from the Point of View of Latin American Families: A Participative Research Study

    ERIC Educational Resources Information Center

    Aznar, A. S.; Castanon, D. G.

    2005-01-01

    Background: To date, little research has focused on what factors constitute a quality of life (QOL) among Latin American families with a member who is intellectually disabled. Method: Total 180 Latin American families cooperated in a participative research project. During 18 months, the families and a team exchanged information about their QOL by…

  5. The Influences of Faculty on Undergraduate Student Participation in Research and Creative Activities

    ERIC Educational Resources Information Center

    Hu, Shouping; Scheuch, Kathyrine; Gayles, Joy Gaston

    2009-01-01

    Using data collected from surveys of college juniors and seniors and faculty members in related academic departments, this study examined whether faculty teaching and research orientations, as well as faculty external funding, had any impact on undergraduate student participation in research and creative activities. The results of the study…

  6. Building Bridges across Knowledge Systems: Ubuntu and Participative Research Paradigms in Bantu Communities

    ERIC Educational Resources Information Center

    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…

  7. Our Anonymous Online Research Participants Are Not Always Anonymous: Is This a Problem?

    ERIC Educational Resources Information Center

    Dawson, Phillip

    2014-01-01

    When educational research is conducted online, we sometimes promise our participants that they will be anonymous--but do we deliver on this promise? We have been warned since 1996 to be careful when using direct quotes in Internet research, as full-text web search engines make it easy to find chunks of text online. This paper details an empirical…

  8. Offering African Americans Opportunities to Participate in Clinical Trials Research: How Social Workers Can Help

    ERIC Educational Resources Information Center

    Mason, Susan E.

    2005-01-01

    Historically, African Americans have resisted participation in clinical trials and other research projects because of distrust of the mostly white research establishment. Although there are legitimate reasons for refusing to join clinical trials, most notably the abuses of the Tuskegee Syphilis Study, African Americans may be passing up…

  9. Training Future Scientists: Predicting First-Year Minority Student Participation in Health Science Research

    ERIC Educational Resources Information Center

    Hurtado, Sylvia; Eagan, M. Kevin; Cabrera, Nolan L.; Lin, Monica H.; Park, Julie; Lopez, Miguel

    2008-01-01

    Using longitudinal data from the UCLA Cooperative Institutional Research Program (CIRP) and Your First College Year (YFCY) surveys, this study examines predictors of the likelihood that science-oriented students would participate in a health science undergraduate research program during the first year of college. The key predictors of…

  10. Social Science Theory and Research on Participation and Voluntary Associations: A Bibliographic Essay.

    ERIC Educational Resources Information Center

    Steinberg, Lois Saxelby

    This literature review is intended for policymakers and researchers concerned with citizen participation in the educational decision-making process. The study examines (1) the functions of interest groups in social science analysis of the political process; (2) the dominant theories employed in social research on interest group processes; (3) the…

  11. Participation in Research Program: A Novel Course in Undergraduate Education of Life Science

    ERIC Educational Resources Information Center

    Zhou, Xuanwei; Lin, Juan; Yin, Yizhou; Sun, Xiaofen; Tang, Kexuan

    2007-01-01

    A novel course, "Participation in Research Program (PRP)" in life sciences is open for 1st to 3rd year undergraduates. PRP introduces the principles of a variety of biological methods and techniques and also offers an opportunity to explore some specific knowledge in more detail prior to thesis research. In addition, the PRP introduces some…

  12. Using Single-Participant Research To Assess Counseling Approaches on Children's Off-Task Behavior.

    ERIC Educational Resources Information Center

    Yarbrough, Jamie L.; Thompson, Charles L.

    2002-01-01

    Researches the efficacy of reality therapy and solution- focused brief counseling with elementary school students engaging in off-task behavior and demonstrates the utility of a single- participant design in conducting counseling research. Significant positive changes in the on-task behaviors of the students resulted from both approaches.…

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

    ERIC Educational Resources Information Center

    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…

  14. Building Participation through Market Research. The Guide Series in Continuing Education.

    ERIC Educational Resources Information Center

    Campbell, M. Donald

    Market research, important for professional renewal, is a critical part of continuing education program planning. It includes attention to learning needs and learner motivation to participate in continuing education. Informal market research makes use of internal sources, such as enrollment data, program evaluations, policy statements, and staff…

  15. Barriers to Clinical Research Participation in a Diabetes Randomized Clinical Trial

    PubMed Central

    Yozwiak, John A; Bearman, Diane L; Strand, Trudy D; Strasburg, Katherine R

    2009-01-01

    Little is known about how barriers to research participation are perceived, affected by or interact with patient characteristics, or how they vary over the course of a clinical trial. Participants (285) in the Renin-Angiotensin System Study (RASS), a randomized clinical primary prevention study of diabetic nephropathy and retinopathy at 2 Canadiana dn 1 US university, rated potential barriers to research participation yearly for 5 years. Baseline barriers rated as most adversely affecting participation were: missing work; frequency of appointments and procedures; study length; number of appointments and procedures; access to study location; and physical discomfort associated with procedures. Inadequate social support, unstable job, and use of alcohol and drugs were cited relatively infrequently, suggesting that although they may be important, candidates for whom these might be issues likely self-selected out of the study. Gender and gender by age interactions were found for specific perceived barriers, such as work and child care, and baseline barriers correlated with adherence. Elucidating the natural history of barriers to research participation is a step toward identifying strategies for helping participants overcome them, and ultimately may enhance the conduct of research. PMID:19167143

  16. We could be heroes: ethical issues with the pre-recruitment of research participants.

    PubMed

    Hunter, David

    2015-07-01

    Pre-recruitment is the practice of recruiting potential participants to a list of potential research volunteers in general rather than to a specific research project. This is a relatively common practice in commercial medical research as it reduces the time and hence costs of recruitment and makes it possible to be more efficient by recruiting participants who may be useful for a variety of different pieces of research. It focuses on present practices in the UK although the conclusions and suggestions should be read more widely than this, applying in any situation where pre-recruitment is used as a recruitment tool for clinical trials and beyond. Current pre-recruitment practices in the UK clash significantly with what are seen as best practices and ethical guidance with regard to recruiting participants to individual trials, and insofar as this undermines these practices should be reformed. PMID:25700106

  17. US Department of Energy Teacher Research Associates Program: Profile and survey of 1990--1991 participants

    SciTech Connect

    Vivio, F.M.; Stevenson, W.L.

    1992-11-01

    Through its laboratories, facilities, and technology centers, the United States Department of Energy supports the development and training of scientists and engineers to meet the nation`s future human resource needs in energy science and technology. This mission is accomplished, in part, through summer programs of active participation by precollege teachers in laboratory research. Since 1989, the Teacher Research Associates (TRAC) program has provided outstanding 7th- through 12th-grade science, mathematics, and technology teachers from across the nation the opportunity to participate in ongoing research projects at DOE laboratories. The TRAC program encourages participants, upon returning to their home institution, to share with their students and colleagues the experience and knowledge gained through their research endeavors.

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

    NASA Astrophysics Data System (ADS)

    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

  19. Teachers' participation in research programs improves their students' achievement in science.

    PubMed

    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. PMID:19833969

  20. Redes En Acción. Increasing Hispanic participation in cancer research, training, and awareness.

    PubMed

    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. PMID:16958026

  1. Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?

    PubMed Central

    Mascalzoni, Deborah; Soini, Sirpa; Machado, Helena; Kaye, Jane; Bentzen, Heidi Beate; Rial-Sebbag, Emmanuelle; D'Abramo, Flavio; Witt, Michał; Schamps, Geneviève; Katić, Višnja; Krajnovic, Dusanca; Harris, Jennifer R.

    2016-01-01

    Background: There is growing consensus that individual genetic research results that are scientifically robust, analytically valid, and clinically actionable should be offered to research participants. However, the general practice in European research projects is that results are usually not provided to research participants for many reasons. This article reports on the views of European experts and scholars who are members of the European COST Action CHIP ME IS1303 (Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives) regarding challenges to the feedback of individual genetic results to research participants in Europe and potential strategies to address these challenges. Materials and Methods: A consultation of the COST Action members was conducted through an email survey and a workshop. The results from the consultation were analyzed following a conventional content analysis approach. Results: Legal frameworks, professional guidelines, and financial, organizational, and human resources to support the feedback of results are largely missing in Europe. Necessary steps to facilitate the feedback process include clarifying legal requirements to the feedback of results, developing harmonized European best practices, promoting interdisciplinary and cross-institutional collaboration, designing educational programs and cost-efficient IT-based platforms, involving research ethics committees, and documenting the health benefits and risks of the feedback process. Conclusions: Coordinated efforts at pan-European level are needed to enable equitable, scientifically sound, and socially robust feedback of results to research participants. PMID:27082461

  2. Voluntary consent in correctional settings: do offenders feel coerced to participate in research?

    PubMed

    Edens, John F; Epstein, Monica; Stiles, Paul G; Poythress, Norman G

    2011-01-01

    A major ethical concern in research with criminal offenders is the potential for abuse due to coercive influences that may adversely affect offenders' capacity to give voluntary consent to participate in research conducted in correctional settings. Despite this concern, to date there have been almost no systematic scientific investigations of the extent to which offenders themselves perceive that coercion occurs in these settings or that it is likely to influence their decisions about research participation. In a sample of over 600 ethnically diverse men and women recruited from various prisons and community corrections facilities in Texas and Florida, we used a vignette-based survey concerning a hypothetical research project to measure and compare offenders' global perceptions of coercive processes, as well as the differential salience and perceived coercive influence of specific factors (e.g., coercion by other inmates, inducements from staff). Somewhat surprisingly, across multiple outcome measures our participants on average reported relatively little in the way of significant coercive influences on their capacity to make voluntary decisions concerning research participation. Implications and directions for future research on coercive influences in offender research are discussed. PMID:22086664

  3. Using Animation as an Information Tool to Advance Health Research Literacy among Minority Participants

    PubMed Central

    George, Sheba; Moran, Erin; Duran, Nelida; Jenders, Robert A

    2013-01-01

    Lack of adequate consumer health information about clinical research contributes to health disparities among low health literate minority multicultural populations and requires appropriate methods for making information accessible. Enhancing understanding of health research can enable such minority multicultural consumers to make informed, active decisions about their own health and research participation. This qualitative study examines the effectiveness and acceptability of an animated video to enhance what we call health research literacy among minority multicultural populations. A team analyzed the transcripts of 58 focus groups of African Americans, Latinos, Native Hawaiians, and Filipinos in Los Angeles/Hawaii. Participants were accepting of animation and the video’s cultural appropriateness. Communicating information about health research via animation improved participants’ ability to identify personal information-gaps, engage in meaningful community-level dialogue, and ask questions about health research. PMID:24551351

  4. The clinical trial research participant as an inside trader: a legal and policy analysis.

    PubMed

    Horwich, Allan

    2006-01-01

    This Article examines whether a participant in a clinical research trial for a drug obtains material nonpublic information about the drug and its manufacturer or licensor and, if so, whether the participant may lawfully trade securities based on that information. This issue has been noted but not examined in depth in several articles in recent years. After an introduction to the federal law of insider trading and a discussion of relevant aspects of a supervised research trial, the Article concludes that, absent an agreement to the contrary, the participant would be free to trade securities based on any material nonpublic information learned in the trial. The author evaluates the extent to which the information is material and nonpublic and then presents the policy issues surrounding whetherthe participantshould be precluded from trading when in possession of material nonpublic information gained as a result of participation in the trial. While not resolving the competing policy considerations, including the value of allowing participants to make disclosure of their experiences in the trial before publication of the results in a peer reviewed journal, the Article presents an approach for preventing the misuse of material nonpublic information gained in the clinical trial context, by obtaining an agreement from the participant, and an agreement from the limited circle of persons to whom the participant should be allowed to make disclosure in any event (such as his personal physician and family members), that would render any trading by them unlawful under the federal law of insider trading. PMID:16761384

  5. The Relationship between Undergraduate Research Participation and Subsequent Research Performance of Early Career STEM Graduate Students

    ERIC Educational Resources Information Center

    Gilmore, Joanna; Vieyra, Michelle; Timmerman, Briana; Feldon, David; Maher, Michelle

    2015-01-01

    Undergraduate research experiences have been adopted across higher education institutions. However, most studies examining benefits derived from undergraduate research rely on self-report of skill development. This study used an empirical assessment of research skills to investigate associations between undergraduate research experiences and…

  6. Learning by Doing: Teaching Research Methods through Student Participation in a Commissioned Research Project.

    ERIC Educational Resources Information Center

    Winn, Sandra

    1995-01-01

    For five years, a University of Brighton (England) social policy and administration program has incorporated a student research project into a required research methods course. The sponsored research project places considerable emphasis on student contributions to the research. These features are discussed in the context of one project, a patient…

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

    PubMed

    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. PMID:16281696

  8. Protection of human research participants: accreditation of programmes in the Indian context.

    PubMed

    Bhosale, Neelambari; Nigar, Shagoofa; Das, Soma; Divate, Uma; Divate, Pathik

    2014-01-01

    The recent negative media reports on the status of participants in clinical trials in India, together with the concerns expressed by the regulatory bodies, have raised questions regarding India's credibility in the conduct of clinical research. Even though the regulations require the registration of trials with the Clinical Trial Registry-India and despite the recently mandated registration of ethics committees (ECs) with the Drugs Controller General of India, the lack of governmental audit and accreditation procedures and bodies has resulted in inadequate protection of human participants in clinical research. Institutions and research sites would benefit by implementing a human research protection programme, which would safeguard the rights, safety and wellbeing of participants in clinical trials, in addition to improving the processes and procedures for the conduct of the trial. The Jehangir Clinical Development Centre, Pune has received accreditation from the Association for the Accreditation of Human Research Protection Programme (AAHRPP). A unique feature of the AAHRPP is the integrative nature of the programme, wherein the sponsors of the trial, investigators, EC members and institution work towards the common goal of protecting research participants. Here, we discuss the improvement needed in the quality standards of institutions for them to be able to meet the requirements of the AAHRPP. We also suggest the need for a governmental accreditation body, which will be required for the future promotion of and improvement in the standards for clinical practice in India. PMID:24509113

  9. Split views among parents regarding children's right to decide about participation in research: a questionnaire survey.

    PubMed

    Swartling, U; Helgesson, G; Hansson, M G; Ludvigsson, J

    2009-07-01

    Based on extensive questionnaire data, this paper focuses on parents' views about children's right to decide about participation in research. The data originates from 4000 families participating in a longitudinal prospective screening as 1997. Although current regulations and recommendations underline that children should have influence over their participation, many parents in this study disagree. Most (66%) were positive providing information to the child about relevant aspects of the study. However, responding parents were split about whether or not children should at some point be allowed decisional authority when participating in research: 41.6% of the parents reported being against or unsure. Those who responded positively believed that children should be allowed to decide about blood-sampling procedures (70%), but to a less extent about participation (48.5%), analyses of samples (19.7%) and biological bank storage (15.4%). That as many as possible should remain in the study, and that children do not have the competence to understand the consequences for research was strongly stressed by respondents who do not think children should have a right to decide. When asked what interests they consider most important in paediatric research, child autonomy and decision-making was ranked lowest. We discuss the implications of these findings. PMID:19567697

  10. From patients to partners: participant-centric initiatives in biomedical research

    PubMed Central

    Kaye, Jane; Curren, Liam; Anderson, Nick; Edwards, Kelly; Fullerton, Stephanie M.; Kanellopoulou, Nadja; Lund, David; MacArthur, Daniel G.; Mascalzoni, Deborah; Shepherd, James; Taylor, Patrick L.; Terry, Sharon F.; Winter, Stefan F.

    2013-01-01

    Advances in computing technology and bioinformatics mean that medical research is increasingly characterized by large international consortia of researchers that are reliant on large data sets and biobanks. These trends raise a number of challenges for obtaining consent, protecting participant privacy concerns and maintaining public trust. Participant-centred initiatives (PCIs) use social media technologies to address these immediate concerns, but they also provide the basis for long-term interactive partnerships. Here, we give an overview of this rapidly moving field by providing an analysis of the different PCI approaches, as well as the benefits and challenges of implementing PCIs. PMID:22473380

  11. Longitudinal consent-related abilities among research participants with schizophrenia: Results from the CATIE study

    PubMed Central

    Stroup, T. Scott; Appelbaum, Paul S.; Gu, Hongbin; Hays, Spencer; Swartz, Marvin S.; Keefe, Richard S.E.; Kim, Scott; Manschreck, Theo; Boshes, Roger; McEvoy, Joseph P.; Lieberman, Jeffrey A.

    2011-01-01

    Objective Research participants must have adequate consent-related abilities to provide informed consent at the time of study enrollment. We sought to determine if research participants with schizophrenia maintain adequate consent-related abilities during a longitudinal study. If participants lose abilities during a trial they may not be able to judge and protect their interests. If reduced abilities are common or can be predicted, special protections can be targeted appropriately. Method We examined longitudinal consent-related abilities of participants in the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) schizophrenia study using the MacArthur Competence Assessment Tool-Clinical Research (MacCAT-CR) at protocol-specified times over 18 months. Results Of 1,158 research participants in this analysis, most (n= 650, 56%) had a stable pattern of MacCAT-CR Understanding scores, 235 (20%) improved substantially with no evidence of decline, 273 (24%) had at least one assessment with substantial worsening. During the course of the trial, 43 (4%) fell below the initial threshold for adequate capacity, which was predicted by lower Understanding scores, more severe positive symptoms, and poorer neurocognitive functioning at baseline, and by increases in negative symptoms and deteriorating global status. Conclusions Most participants in this long-term study had stable or improved consent-related abilities, but almost one-fourth experienced substantial worsening and 4% of participants fell below the study’s capacity threshold for enrollment. Clinical investigators should monitor with special care individuals with marginal capacity or higher levels of psychotic symptoms at study entry and those who exhibit clinical worsening during a study. PMID:21561740

  12. Emotion recognition in early Parkinson’s disease patients undergoing deep brain stimulation or dopaminergic therapy: a comparison to healthy participants

    PubMed Central

    McIntosh, Lindsey G.; Mannava, Sishir; Camalier, Corrie R.; Folley, Bradley S.; Albritton, Aaron; Konrad, Peter E.; Charles, David; Park, Sohee; Neimat, Joseph S.

    2015-01-01

    Parkinson’s disease (PD) is traditionally regarded as a neurodegenerative movement disorder, however, nigrostriatal dopaminergic degeneration is also thought to disrupt non-motor loops connecting basal ganglia to areas in frontal cortex involved in cognition and emotion processing. PD patients are impaired on tests of emotion recognition, but it is difficult to disentangle this deficit from the more general cognitive dysfunction that frequently accompanies disease progression. Testing for emotion recognition deficits early in the disease course, prior to cognitive decline, better assesses the sensitivity of these non-motor corticobasal ganglia-thalamocortical loops involved in emotion processing to early degenerative change in basal ganglia circuits. In addition, contrasting this with a group of healthy aging individuals demonstrates changes in emotion processing specific to the degeneration of basal ganglia circuitry in PD. Early PD patients (EPD) were recruited from a randomized clinical trial testing the safety and tolerability of deep brain stimulation (DBS) of the subthalamic nucleus (STN-DBS) in early-staged PD. EPD patients were previously randomized to receive optimal drug therapy only (ODT), or drug therapy plus STN-DBS (ODT + DBS). Matched healthy elderly controls (HEC) and young controls (HYC) also participated in this study. Participants completed two control tasks and three emotion recognition tests that varied in stimulus domain. EPD patients were impaired on all emotion recognition tasks compared to HEC. Neither therapy type (ODT or ODT + DBS) nor therapy state (ON/OFF) altered emotion recognition performance in this study. Finally, HEC were impaired on vocal emotion recognition relative to HYC, suggesting a decline related to healthy aging. This study supports the existence of impaired emotion recognition early in the PD course, implicating an early disruption of fronto-striatal loops mediating emotional function. PMID:25653616

  13. Increasing participation in genomic research and biobanking through community-based capacity building.

    PubMed

    Cohn, Elizabeth Gross; Husamudeen, Maryam; Larson, Elaine L; Williams, Janet K

    2015-06-01

    Achieving equitable minority representation in genomic biobanking is one of the most difficult challenges faced by researchers today. Capacity building--a framework for research that includes collaborations and on-going engagement--can be used to help researchers, clinicians and communities better understand the process, utility, and clinical application of genomic science. The purpose of this exploratory descriptive study was to examine factors that influence the decision to participate in genomic research, and identify essential components of capacity building with a community at risk of being under-represented in biobanks. Results of focus groups conducted in Central Harlem with 46 participants were analyzed by a collaborative team of community and academic investigators using content analysis and AtlisTi. Key themes identified were: (1) the potential contribution of biobanking to individual and community health, for example the effect of the environment on health, (2) the societal context of the science, such as DNA criminal databases and paternity testing, that may affect the decision to participate, and (3) the researchers' commitment to community health as an outcome of capacity building. These key factors can contribute to achieving equity in biobank participation, and guide genetic specialists in biobank planning and implementation. PMID:25228357

  14. Mars Public Mapping Project: Public Participation in Science Research; Providing Opportunities for Kids of All Ages

    NASA Astrophysics Data System (ADS)

    Rogers, L. D.; Valderrama Graff, P.; Bandfield, J. L.; Christensen, P. R.; Klug, S. L.; Deva, B.; Capages, C.

    2007-12-01

    The Mars Public Mapping Project is a web-based education and public outreach tool developed by the Mars Space Flight Facility at Arizona State University. This tool allows the general public to identify and map geologic features on Mars, utilizing Thermal Emission Imaging System (THEMIS) visible images, allowing public participation in authentic scientific research. In addition, participants are able to rate each image (based on a 1 to 5 star scale) to help build a catalog of some of the more appealing and interesting martian surface features. Once participants have identified observable features in an image, they are able to view a map of the global distribution of the many geologic features they just identified. This automatic feedback, through a global distribution map, allows participants to see how their answers compare to the answers of other participants. Participants check boxes "yes, no, or not sure" for each feature that is listed on the Mars Public Mapping Project web page, including surface geologic features such as gullies, sand dunes, dust devil tracks, wind streaks, lava flows, several types of craters, and layers. Each type of feature has a quick and easily accessible description and example image. When a participant moves their mouse over each example thumbnail image, a window pops up with a picture and a description of the feature. This provides a form of "on the job training" for the participants that can vary with their background level. For users who are more comfortable with Mars geology, there is also an advanced feature identification section accessible by a drop down menu. This includes additional features that may be identified, such as streamlined islands, valley networks, chaotic terrain, yardangs, and dark slope streaks. The Mars Public Mapping Project achieves several goals: 1) It engages the public in a manner that encourages active participation in scientific research and learning about geologic features and processes. 2) It helps to

  15. Participation des parents au processus de scolarisation: Recherches, modeles d'action et debats theoriques (Parental Participation in the Schooling Process: Research, Action Models and Theoretical Debates).

    ERIC Educational Resources Information Center

    Akkari, Abdeljalil

    1999-01-01

    Reviews studies of parental participation and their role in schooling processes. Examines principal research trends on the subject, looks at the classification of different types of parental participation, discusses the crucial role of teachers in the intensive involvement of parents in schooling, and situates the theoretical stakes that this…

  16. Advanced Placement® Exam Participation: Is AP® Exam Participation and Performance Related to Choice of College Major? Research Report No. 2011-6

    ERIC Educational Resources Information Center

    Mattern, Krista D.; Shaw, Emily J.; Ewing, Maureen

    2011-01-01

    Previous research has found a positive relationship between AP® participation and performance with various college outcomes. Building on this work, the current study investigated the relationship between AP participation and performance with choice of college major. Specifically, this study examined whether students who take an AP Exam in a…

  17. Adapting an evidence-based model to retain adolescent study participants in longitudinal research.

    PubMed

    Davis, Erin; Demby, Hilary; Jenner, Lynne Woodward; Gregory, Alethia; Broussard, Marsha

    2016-02-01

    Maintaining contact with and collecting outcome data from adolescent study participants can present a significant challenge for researchers conducting longitudinal studies. Establishing an organized and effective protocol for participant follow-up is crucial to reduce attrition and maintain high retention rates. This paper describes our methods in using and adapting the evidence-based Engagement, Verification, Maintenance, and Confirmation (EVMC) model to follow up with adolescents 6 and 12 months after implementation of a health program. It extends previous research by focusing on two key modifications to the model: (1) the central role of cell phones and texting to maintain contact with study participants throughout the EVMC process and, (2) use of responsive two-way communication between staff and participants and flexible administration modes and methods in the confirmation phase to ensure that busy teens not only respond to contacts, but also complete data collection. These strategies have resulted in high overall retention rates (87-91%) with adolescent study participants at each follow-up data collection point without the utilization of other, more involved tracking measures. The methods and findings presented may be valuable for other researchers with limited resources planning for or engaged in collecting follow-up outcome data from adolescents enrolled in longitudinal studies. PMID:26539953

  18. Motives for participating in a clinical research trial: a pilot study in Brazil

    PubMed Central

    2013-01-01

    Background In the past, clinical study participants have suffered from the experiments that they were subjected to. Study subjects may not understand the study process or may participate in clinical studies because they do not have access to medical care. The objectives of the present study were 1. to analyze the motives that might cause a volunteer to participate as a study subject; 2. to identify the social-demographic profile of this study subjects; and 3. to determine whether the motives to volunteer as a study subject are in accordance with the established legal and ethical principles for research in Brazil. Methods Mixed-methods research was used (a qualitative-quantitative approach). A sample of 80 volunteers underwent a semi-structured interview, which was based on a survey script that was elaborated from discussions with key informants. The sample was randomly selected from a database of clinical study volunteers that was provided by Brazilian clinical study centers. The interviews were recorded and transcribed. Descriptive statistics were used for content analysis, including contingency tables with hypothesis testing. Results The motivations for clinical study participation were linked to types of benefit. The most frequently encountered motivations were financial gain and therapeutic alternative. Altruism was not a common motivator, and when altruism was present, it was observed as a secondary motivator. All participants reported that they understood the Informed Consent Statement (ICS). However, only two parts of the form were remembered by all of the volunteers: the section on being able to leave the study at any point and the section that stated that there would be some responsible professional at their disposal for the entirety of the study. Conclusions The present study shows that study participants are primarily motivated by personal benefit when volunteering to participate in clinical studies. Whether these study participants had an integral

  19. Attrition in drug court research: Examining participant characteristics and recommendations for follow-up.

    PubMed

    Mendoza, Natasha S; Linley, Jessica V; Nochajski, Thomas H; Farrell, Mark G

    2013-01-01

    Drug court research is often challenged by study attrition. In this study, researchers attempted to predict study completion using variables traditionally associated with treatment attrition. Findings showed that participants who reported a need for additional help to resolve legal problems and who reported accessing outpatient treatments were more likely to complete the study at the three-month follow-up. The study also demonstrated a relationship between trauma-related symptoms and study attrition. Although sample size was a limitation with these pilot data, researchers are urged to examine attrition and increase efforts to engage drug court enrollees in research studies, especially those with trauma-related symptoms. PMID:24475320

  20. Attrition in drug court research: Examining participant characteristics and recommendations for follow-up

    PubMed Central

    Mendoza, Natasha S.; Linley, Jessica V.; Nochajski, Thomas H.; Farrell, Mark G.

    2014-01-01

    Drug court research is often challenged by study attrition. In this study, researchers attempted to predict study completion using variables traditionally associated with treatment attrition. Findings showed that participants who reported a need for additional help to resolve legal problems and who reported accessing outpatient treatments were more likely to complete the study at the three-month follow-up. The study also demonstrated a relationship between trauma-related symptoms and study attrition. Although sample size was a limitation with these pilot data, researchers are urged to examine attrition and increase efforts to engage drug court enrollees in research studies, especially those with trauma-related symptoms. PMID:24475320

  1. A Review of Barriers to Minorities' Participation in Cancer Clinical Trials: Implications for Future Cancer Research.

    PubMed

    Salman, Ali; Nguyen, Claire; Lee, Yi-Hui; Cooksey-James, Tawna

    2016-04-01

    To enhance nurses' awareness and competencies in practice and research by reporting the common barriers to participation of minorities in cancer clinical trials and discussing facilitators and useful strategies for recruitment. Several databases were searched for articles published in peer reviewed journals. Some of the barriers to minorities' participation in clinical trials were identified within the cultural social-context of cancer patients. The involvement of community networking was suggested as the most effective strategy for the recruitment of minorities in cancer clinical trials. Using culturally sensitive approaches to enhance ethnic minorities' participation is important for advancing cancer care and eliminating health disparities. Awareness of barriers and potential facilitators to the enrollment of ethnic minority cancer patients may contribute to enhancing nurses' competencies of recruiting ethnic minorities in nursing research, playing efficient roles in cancer clinical trials team, and providing culturally competent quality care. PMID:25822567

  2. High School Youth's Reactions to Participating in Mixed-Methodological Dating Violence Research.

    PubMed

    Edwards, Katie M; Haynes, Ellen E; Rodenhizer-Stämpfli, Kara Anne

    2016-07-01

    The present study used a sample of high school youth (N = 218) and a mixed-methodological research design to examine high school students' reactions to participating in focus groups and completing surveys that inquired about dating violence (DV). Results showed that showed that 1.5% (n = 3) of the youth regretted participating in the study and 6% (n = 12) were upset by the study questions; being upset was attributed to personal experiences with DV and being disturbed by peers' responses during the focus group. Furthermore, 49% (n = 99) of the youth reported feeling that they personally benefited from participating in the study for reasons such as learning ways to help friends in situations of DV. Results have implications for conducting mixed-methodological DV research with youth. PMID:27307419

  3. Motivational Assessment of Non-Treatment Buprenorphine Research Participation in Heroin Dependent Individuals

    PubMed Central

    Papke, Gina; Greenwald, Mark K.

    2011-01-01

    Background Heroin abuse remains an important public health problem, particularly in economically disadvantaged areas. Insight into this problem is gained from interviewing addicted individuals. However, we lack systematic data on factors that motivate heroin users to participate in non-treatment research that offers both financial incentives (compensation) and non-financial incentives (e.g., short-term medication). Aim To better understand the relative importance of several types of personal motivations to participate in non-treatment buprenorphine research, and to relate self-motivations to social, economic, demographic and drug use factors. Methods Heroin dependent volunteers (N = 235 total; 57 female and 178 male; 136 African American, 86 Caucasian, and 13 Other) applied for non-therapeutic buprenorphine research in an urban outpatient setting from 2004–2008. We conducted a semi-structured behavioral economic interview, after which participants ranked 11 possible motivations for research participation. Results Although the study was repeatedly described as non-treatment research involving buprenorphine, participants often ranked some treatment-related motivations as important (wanting to reduce/stop heroin use, needing a medication to get stabilized/detoxify). Some motivations correlated with income, heroin use, and years since marketing of buprenorphine. Two dimensions emerged from principal component analysis of motivation rankings: (1) treatment motivation vs. greater immediate needs, and (2) commitment to trying alternatives vs. a more accepting attitude toward traditional interventions. In summary, heroin addicts’ self-motivations to engage in non-therapeutic research are complex – they value economic gain but not exclusively or primarily – and relate to variables such as socioeconomic factors and drug use. PMID:22137646

  4. Domestic violence among adolescents in HIV prevention research in Tanzania: Participant experiences and measurement issues

    PubMed Central

    Baumgartner, Joy Noel; Kaaya, Sylvia; Karungula, Happy; Kaale, Anna; Headley, Jennifer; Tolley, Elizabeth

    2014-01-01

    Objectives Under-representation of female adolescents in HIV clinical trials may inhibit their access to future prevention technologies. Domestic violence, broadly defined as violence perpetrated by intimate partners and/or family members, may affect trial participation. This study describes violence in the lives of adolescents and young women in Tanzania, explores use of the Women’s Experience with Battering (WEB) Scale to measure battering, and examines the associations between battering and socio-demographic and HIV risk factors. Methods Community formative research (CFR) and a mock clinical trial (MCT) were conducted to examine the challenges of recruiting younger (15-17) versus older (18-21) participants into HIV prevention trials. The CFR included qualitative interviews with 23 participants and there were 135 MCT participants. The WEB was administered in both the CFR and MCT. Results Nineteen CFR participants experienced physical/sexual violence and 17% scored positive for battering. All married participants reported partner-related domestic violence, and half scored positive for battering. Many believed beatings were normal. None of the single participants scored positive on battering, but one-third reported abuse by relatives. Among MCT participants, 15% scored positive for battering; most perpetrators were relatives. Younger participants were more likely to report battering. Conclusions Adolescents experienced high rates of domestic violence and the WEB captured battering from both partners and relatives. The level of familial violence was unexpected and has implications for parental roles in study recruitment. Addressing adolescent abuse in HIV prevention trials and in the general population should be a public health priority. PMID:24740725

  5. Factors Affecting Female Participation in Education in Seven Developing Countries. Second Edition. Education Research Paper.

    ERIC Educational Resources Information Center

    Brock, Colin; Cammish, Nadine

    Factors affecting female participation in education in seven developing countries were examined through field visits to the following countries: Bangladesh, Cameroon, India, Jamaica, Seychelles, Sierra Leone, and Vanuatu. In each country, researchers interviewed key personnel, consulted local documentation, and conducted two empirical surveys…

  6. Diversity of Research Participants Benefits ESL/EFL Learners: Examining Student-Lecturer Disagreements in Classrooms

    ERIC Educational Resources Information Center

    Charoenroop, Pattrawut

    2016-01-01

    Reviews of literature made manifest that native English speakers who were research participants in many studies on disagreements were Americans (e.g., Beebe & Takahashi, 1989; Takahashi & Beebe, 1993; Dogacay-Aktuna & Kamisli 1996; Rees-Miller, 2000; Guodong & Jing, 2005; Chen, 2006). The excessive use of Americans as research…

  7. Action Research: Measuring Literacy Programme Participants' Learning Outcomes. Results of the Final Phase (2011-2014)

    ERIC Educational Resources Information Center

    Bolly, Madina; Jonas, Nicolas

    2015-01-01

    Action Research on Measuring Literacy Programme Participants' Learning Outcomes (RAMAA) aims to develop, implement and collaborate on the creation of a methodological approach to measure acquired learning and study the various factors that influence its development. This report examines how RAMAA I has been implemented over the past four years in…

  8. Ethical issues arising from the participation of children in genetic research.

    PubMed

    Burke, Wylie; Diekema, Douglas S

    2006-07-01

    With new tools derived from the Human Genome Project, genetic research is expanding from the study of rare, single gene disorders to the evaluation of genetic contributors to common, complex diseases. Many genetic studies include pediatric participants. The ethical concerns related to pediatric participation in genetic research derive from the study designs commonly employed in gene discovery and from the power accorded to genetic prediction in our society. In both family-based studies and large studies combining genetic and other health-related data, special attention should be placed on recruitment procedures, informed consent, and confidentiality protections. If data repositories are created for long-term use, we recommend re-consent of pediatric participants when they reach adulthood. In addition, the potential for disclosure of individual results should be considered as part of the institutional review of genetic studies, taking into account the validity of research data and the potential that such data could be used in health care. The potential for genetic results to pose harms of personal and group stigma is also a consideration. Because genetic information is often accorded special power in our society, careful attention should be paid to how genetic information is collected and used in research involving pediatric participants. PMID:16829241

  9. No Child Left Behind Educational Options: Availability Expands, But Participation Remains Low. Research Brief

    ERIC Educational Resources Information Center

    Neumann, Michael J.

    2009-01-01

    As required by the No Child Left Behind Act of 2001 (NCLB), most school districts with low-performing schools offer public school choice and supplemental educational services. However, researchers found that, although the total number of students participating in both options has increased substantially since NCLB began, only a small proportion…

  10. Purposeful Design of Formal Laboratory Instruction as a Springboard to Research Participation

    ERIC Educational Resources Information Center

    Cartrette, David P.; Miller, Matthew L.

    2013-01-01

    An innovative first- and second-year laboratory course sequence is described. The goal of the instructional model is to introduce chemistry and biochemistry majors to the process of research participation earlier in their academic training. To achieve that goal, the instructional model incorporates significant hands-on experiences with chemical…

  11. Power, Agency and Participatory Agendas: A Critical Exploration of Young People's Engagement in Participative Qualitative Research

    ERIC Educational Resources Information Center

    Holland, Sally; Renold, Emma; Ross, Nicola J.; Hillman, Alexandra

    2010-01-01

    This article critically explores data generated within a participatory research project with young people in the care of a local authority, the (Extra)ordinary Lives project. The project involved ethnographic multi-media data generation methods used in groups and individually with eight participants (aged 10-20) over a school year and encouraged…

  12. A Trend Analysis of Participant and Setting Characteristics in Autism Intervention Research

    ERIC Educational Resources Information Center

    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…

  13. Student Participation in Ecological Research: Preliminary Insights from Students' Experiences in the Smoky Mountains

    ERIC Educational Resources Information Center

    Pacifici, Lara B.; Miller, Craig; Thomson, Norman

    2009-01-01

    Students participating in summer research internships at the Great Smoky Mountain National Park kept electronic journals to document their experiences. We used a combined content analysis to quantify the responses from the students in particular areas of interest and to understand the essence of experiences from the explanations provided in their…

  14. Trauma in People with Intellectual and Developmental Disabilities: Reactions of Parents and Caregivers to Research Participation

    ERIC Educational Resources Information Center

    Scotti, Joseph R.; Stevens, Sarah B.; Jacoby, Vanessa M.; Bracken, Magdalene R.; Freed, Rachel; Schmidt, Elizabeth

    2012-01-01

    Generally, studies have revealed that only a minority of people are bothered by participation in research on traumatic stress. Severity of traumatic events and subsequent responses are typically unrelated to negative reactions. We included 386 family members and caregivers (respondents) of people with intellectual and developmental disabilities…

  15. Increasing Participation in Genomic Research and Biobanking Through Community-Based Capacity Building

    PubMed Central

    Cohn, Elizabeth Gross; Husamudeen, Maryam; Larson, Elaine L.; Williams, Janet K.

    2016-01-01

    Achieving equitable minority representation in genomic biobanking is one of the most difficult challenges faced by researchers today. Capacity building—a framework for research that includes collaborations and on-going engagement—can be used to help researchers, clinicians and communities better understand the process, utility, and clinical application of genomic science. The purpose of this exploratory descriptive study was to examine factors that influence the decision to participate in genomic research, and identify essential components of capacity building with a community at risk of being under-represented in biobanks. Results of focus groups conducted in Central Harlem with 46 participants were analyzed by a collaborative team of community and academic investigators using content analysis and AtlisTi. Key themes identified were: (1) the potential contribution of biobanking to individual and community health, for example the effect of the environment on health, (2) the societal context of the science, such as DNA criminal databases and paternity testing, that may affect the decision to participate, and (3) the researchers’ commitment to community health as an outcome of capacity building. These key factors can contribute to achieving equity in biobank participation, and guide genetic specialists in biobank planning and implementation. PMID:25228357

  16. "Bums on Seats" or "Listening to Voices: Evaluating Widening Participation Initiatives Using Participatory Action Research.

    ERIC Educational Resources Information Center

    Thomas, Liz

    2000-01-01

    Evaluation of initiatives for widening participation in higher education by nontraditional groups should avoid positivist, economic approaches in favor of participatory action research (PAR). An example from Britain shows how PAR finds local solutions for local problems; promotes empowerment, ownership, and sustainability; and bridges and…

  17. Development of a Community of Science Teachers: Participation in a Collaborative Action Research Project

    ERIC Educational Resources Information Center

    Fazio, Xavier

    2009-01-01

    This article presents a study exploring the beliefs, knowledge, and practices of four middle and secondary science teachers participating in a collaborative curriculum action research project. Using a case study methodology, the views and practices of these teachers were described and analyzed as they investigated novel ideas about scientific…

  18. 20 CFR 404.1629 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 20 Employees' Benefits 2 2013-04-01 2013-04-01 false Participation in research and demonstration projects. 404.1629 Section 404.1629 Employees' Benefits SOCIAL SECURITY ADMINISTRATION FEDERAL OLD-AGE, SURVIVORS AND DISABILITY INSURANCE (1950- ) Determinations of Disability Administrative Responsibilities...

  19. Examining attitudes about and influences on research participation among forensic psychiatric inpatients.

    PubMed

    Magyar, Melissa S; Edens, John F; Epstein, Monica; Stiles, Paul G; Poythress, Norman G

    2012-01-01

    Although a growing body of research has examined various types of coercive practices that may occur among psychiatric patients over the years, almost no attention has been given to coercive influences that may occur specifically in the context of recruitment into research projects. Particularly for those who are institutionalized (e.g., in-patient insanity acquittees), there are significant concerns that their autonomous decision-making to consent or not may be significantly impaired due to the highly restrictive and controlled environment in which they live. This exploratory study sought to examine patients' perceptions of coercive influences by presenting them with hypothetical research vignettes regarding possible recruitment into either a biomedical or social-behavioral research project. Among 148 multi-ethnic male and female participants across two facilities, participants reported relatively minimal perceptions that their autonomous decision-making would be impacted or that various potentially coercive factors (e.g., pressures from staff) would impair their free choice to participate (or not) in such research. To the extent that such perceptions of coercion did occur, they were moderately associated with patients' more general personality traits and attitudinal variables, such as alienation and external locus of control. Limitations of this study and their implications for future research are discussed. PMID:22259125

  20. Participation in college laboratory research apprenticeships among students considering careers in medicine

    PubMed Central

    Andriole, Dorothy A.; Jeffe, Donna B.; Tai, Robert H.

    2015-01-01

    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 was

  1. The CAMPARE Program:A New Model Promoting Minority Participation in Astronomy Research and Education

    NASA Astrophysics Data System (ADS)

    Rudolph, Alexander L.; Impey, C. D.; Bieging, J. H.; Phillips, C. B.; Tieu, J.; Povich, M. S.

    2014-01-01

    The California-Arizona Minority Partnership for Astronomy Research and Education (CAMPARE) program represents a new and innovative kind of research program for undergraduates: one that can effectively carry out the goal of recruiting qualified minority and female students to participate in Astronomy and Planetary Science research opportunities, while mentoring them in a way to maximize the chance that these students will persist in obtaining their undergraduate degrees in STEM fields, and potentially go on to obtain their PhDs or pursue careers in those fields. The members of CAMPARE comprise a network of comprehensive universities and community colleges in Southern California and Arizona (most of which are minority serving institutions), and four major research institutions (University of Arizona Steward Observatory, the SETI Institute, and JPL/Caltech). Most undergraduate research programs focus on a single research institution. By having multiple institutions, we significantly broaden the opportunities for students, both in terms of breadth of research topics and geographical location.

  2. Respondent-Driven Sampling in Participatory Research Contexts: Participant-Driven Recruitment

    PubMed Central

    2006-01-01

    This article reports on the use of respondent-driven sampling (RDS) in participatory and community-based research. Participant-driven recruitment (PDR) retains all of the analytic capabilities of RDS while enhancing the role of respondents in framing research questions, instrument development, data interpretation, and other aspects of the research process. Merging the capabilities of RDS with participatory research methods, PDR creates new opportunities for engaging community members in research addressing social issues and in utilizing research findings within community contexts. This article outlines PDR’s synthesis of RDS and participatory research approaches, describes how PDR is implemented in community contexts, and provides two examples of the use of PDR, illustrating its process, potentials, and challenges. PMID:16933100

  3. UK research funding bodies’ views towards public participation in health-related research decisions: an exploratory study

    PubMed Central

    2014-01-01

    Background A challenge facing science is how to renew and improve its relationship with society. One potential solution is to ensure that the public are more involved in the scientific process from the inception of research plans to scientific dissemination strategies. However, to date, little is known about how research funding bodies view public participation in research funding decisions, and how they involve the public into their strategies and practices. This paper provides insights into how key representatives working in the UK non-commercial research funding sector perceive public participation in health-related research funding decisions and the possible implications of these. Methods We conducted qualitative semi-structured interviews with 30 key stakeholders from 10 UK non-commercial research funding bodies that either partially or exclusively fund health-related research. The findings were written up in thematic narrative form. Results The different disciplines that encompass health research, and their differing frames of ‘science and society’, were found to influence how research funding bodies viewed and implemented public participation in research funding decisions. Relevant subsets of the public were more likely to be involved in research funding decisions than lay public, which could be linked to underlying technocratic rationales. Concerns about public participation stemmed from the highly professionalised scientific environment that the public were exposed to. Additionally, from a more positivist frame, concerns arose regarding subjective views and values held by the public that may damage the integrity of science. Conclusion Underlying assumptions of technocracy largely appear to be driving PP/PE within the research grant review process, even in funding bodies that have overtly democratic ideals. Some conceptions of technocracy were more inclusive than others, welcoming different types of expertise such as patient or research-user experiences

  4. "Listen to Me when I Have Something to Say": Students' Participation in Research for Sustainable School Improvement

    ERIC Educational Resources Information Center

    Bergmark, Ulrika; Kostenius, Catrine

    2009-01-01

    This article focuses on student participation in the research process as a contribution to school improvement. The specific aim of this article was to explore students' participation in different phases of a research process and discuss how their participation can contribute to school improvement. Based on a life-world phenomenological ontology,…

  5. Correlates of individual versus joint participation in online survey research with same-sex male couples

    PubMed Central

    Starks, Tyrel S.; Millar, Brett M.; Parsons, Jeffrey T.

    2014-01-01

    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. PMID:25432879

  6. Novel recruitment strategies to increase participation of women in reproductive health research in India.

    PubMed

    Krupp, K; Madhivanan, P; Karat, C; Chandrasekaran, V; Sarvode, M; Klausner, J; Reingold, A

    2007-01-01

    In India, care seeking for reproductive health among women is inadequate. This poses a unique challenge to researchers recruiting cohorts for studies in clinic-based settings. The purpose of this paper is to describe the recruitment process used in a prospective cohort study investigating the relationship between bacterial vaginosis and acquisition of HSV-2 among sexually active women in Mysore, India. Participants were initially recruited from an obstetrics/gynaecology outpatient clinic. Results were compared with a 'community supported' enrolment process, which included community preparation and reproductive health education followed by screening of potential participants. During November 2005, 1,054 women were screened in the clinic. Of the total screened, 246 (23%) were eligible and only 78 (7%) enrolled. Between December 2005 and April 2006, investigators adopted a community supported enrolment process. During that period, 1,077 potential participants were screened, 947 were eligible, and 918 (85%) enrolled. Fifty-six (72%) participants recruited from the clinic returned for their first follow-up visit, compared with 795 (97%) participants recruited using the community supported enrolment process. Since obstetrics/gynaecology departments in India are poor places to recruit non-pregnant women of reproductive age, a community supported process yields more eligible potential participants to screen, and results in significantly better study retention. PMID:19283635

  7. Motivations and Perceptions of Early Adopters of Personalized Genomics: Perspectives from Research Participants

    PubMed Central

    Gollust, S.E.; Gordon, E.S.; Zayac, C.; Griffin, G.; Christman, M.F.; Pyeritz, R.E.; Wawak, L.; Bernhardt, B.A.

    2011-01-01

    Background/Aims: To predict the potential public health impact of personal genomics, empirical research on public perceptions of these services is needed. In this study, ‘early adopters’ of personal genomics were surveyed to assess their motivations, perceptions and intentions. Methods: Participants were recruited from everyone who registered to attend an enrollment event for the Coriell Personalized Medicine Collaborative, a United States-based (Camden, N.J.) research study of the utility of personalized medicine, between March 31, 2009 and April 1, 2010 (n = 369). Participants completed an Internet-based survey about their motivations, awareness of personalized medicine, perceptions of study risks and benefits, and intentions to share results with health care providers. Results: Respondents were motivated to participate for their own curiosity and to find out their disease risk to improve their health. Fewer than 10% expressed deterministic perspectives about genetic risk, but 32% had misperceptions about the research study or personal genomic testing. Most respondents perceived the study to have health-related benefits. Nearly all (92%) intended to share their results with physicians, primarily to request specific medical recommendations. Conclusion: Early adopters of personal genomics are prospectively enthusiastic about using genomic profiling information to improve their health, in close consultation with their physicians. This suggests that early users (i.e. through direct-to-consumer companies or research) may follow up with the health care system. Further research should address whether intentions to seek care match actual behaviors. PMID:21654153

  8. Why Do Parents Grant or Deny Consent for Adolescent Participation in Sexuality Research?

    PubMed

    Moilanen, Kristin L

    2016-05-01

    To date, there is limited knowledge about how parents make decisions about adolescents' participation in sexuality research. This gap was addressed in the present study, which explored parents' reasons for providing or denying consent and their suggestions for improving the likelihood of consent. 151 parents responded through anonymous internet surveys (85.3 % mothers; 87 % European American). Those who would likely consent were largely motivated by potential benefits and limited risks of participating in the study. Those unlikely to consent expressed discomfort with sexual content, which they viewed as inappropriate for sexually-naïve adolescents. Most were somewhat more likely to consent if researchers engaged in ethical research practices (e.g., protecting confidentiality). As in other adolescent life domains, parents' decisions strongly reflected their desire to protect their teenagers' wellbeing, though respondents' means of pursuing this goal varied. The discussion centers on the findings' implications for theory development and recruitment efforts. PMID:26910523

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

    NASA Astrophysics Data System (ADS)

    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.

  10. The potential exploitation of research participants in high income countries who lack access to health care.

    PubMed

    Dal-Ré, Rafael; Rid, Annette; Emanuel, Ezekiel; Wendler, David

    2016-05-01

    There are millions of individuals living in North America and the European Union who lack access to healthcare services. When these individuals participate in research, they are at increased risk of being exposed to the risks and burdens of clinical trials without realizing the benefits that result from them. The mechanisms that have been proposed to ensure that research participants in low- and middle-income countries are not exploited are unlikely to protect participants in high-income countries. The present manuscript argues that one way to address concerns about exploitation in high-income countries would be to require sponsors to provide targeted benefits such as medical treatment during the trial, or the study drug after the trial. The latter could be achieved through extension studies, expanded access programs, or named-patient programs. Sponsors also might provide non-medical benefits, such as education or social support. Ethical and regulatory guidance should be revised to ensure that research participants in high-income countries who lack access to healthcare services receive sufficient benefits. PMID:26743927

  11. Consensus standards for introductory e-learning courses in human participants research ethics.

    PubMed

    Williams, John R; Sprumont, Dominique; Hirtle, Marie; Adebamowo, Clement; Braunschweiger, Paul; Bull, Susan; Burri, Christian; Czarkowski, Marek; Fan, Chien Te; Franck, Caroline; Gefenas, Eugenjius; Geissbuhler, Antoine; Klingmann, Ingrid; Kouyaté, Bocar; Kraehenbhul, Jean-Pierre; Kruger, Mariana; Moodley, Keymanthri; Ntoumi, Francine; Nyirenda, Thomas; Pym, Alexander; Silverman, Henry; Tenorio, Sara

    2014-06-01

    This paper reports the results of a workshop held in January 2013 to begin the process of establishing standards for e-learning programmes in the ethics of research involving human participants that could serve as the basis of their evaluation by individuals and groups who want to use, recommend or accredit such programmes. The standards that were drafted at the workshop cover the following topics: designer/provider qualifications, learning goals, learning objectives, content, methods, assessment of participants and assessment of the course. The authors invite comments on the draft standards and eventual endorsement of a final version by all stakeholders. PMID:23959838

  12. Participation and Research of Astronomers and Astrophysicists of Black African Descent (1900–2005)

    NASA Astrophysics Data System (ADS)

    Oluseyi, Hakeem M.; Urama, Johnson

    The second half of the Twentieth Century witnessed the emergence of the first modern Astronomers and Astrophysicists of Black African descent. In this paper we enumerate these researchers and briefly describe their activities. We also describe the broader social and political contexts which have impacted their participation and research. We focus primarily on researchers in the United States of America (28) and in Nigeria (19) who have together produced over 90% of the astronomical researchers known to the authors. We briefly mention researchers from other countries including South Africa (3) and in Eurasia (2). We conclude by describing the pioneering researchers and disseminators of the Black African Diaspora's contribution of to the modern astronomical sciences.

  13. Participation and Research of Astronomers and Astrophysicists of Black African Descent (1900 2005)

    NASA Astrophysics Data System (ADS)

    Oluseyi, Hakeem M.; Urama, Johnson

    The second half of the Twentieth Century witnessed the emergence of the first modern Astronomers and Astrophysicists of Black African descent. In this paper we enumerate these researchers and briefly describe their activities. We also describe the broader social and political contexts which have impacted their participation and research. We focus primarily on researchers in the United States of America (28) and in Nigeria (19) who have together produced over 90% of the astronomical researchers known to the authors. We briefly mention researchers from other countries including South Africa (3) and in Eurasia (2). We conclude by describing the pioneering researchers and disseminators of the Black African Diaspora's contribution of to the modern astronomical sciences.

  14. Committee Opinion No. 646 Summary: Ethical Considerations for Including Women as Research Participants.

    PubMed

    2016-05-01

    Inclusion of women in research studies is necessary for valid inferences about health and disease in women. The generalization of results from trials conducted in men may yield erroneous conclusions that fail to account for the biologic differences between men and women. Although significant changes in research design and practice have led to an increase in the proportion of women included in research trials, knowledge gaps remain because of a continued lack of inclusion of women, especially those who are pregnant, in premarketing research trials. This document provides a historical overview of issues surrounding women as participants in research trials, followed by an ethical framework and discussion of the issues of informed consent, contraception requirements, intimate partner consent, and the appropriate inclusion of pregnant women in research studies. PMID:27548418

  15. Committee Opinion No. 646: Ethical Considerations for Including Women as Research Participants.

    PubMed

    2016-05-01

    Inclusion of women in research studies is necessary for valid inferences about health and disease in women. The generalization of results from trials conducted in men may yield erroneous conclusions that fail to account for the biologic differences between men and women. Although significant changes in research design and practice have led to an increase in the proportion of women included in research trials, knowledge gaps remain because of a continued lack of inclusion of women, especially those who are pregnant, in premarketing research trials. This document provides a historical overview of issues surrounding women as participants in research trials, followed by an ethical framework and discussion of the issues of informed consent, contraception requirements, intimate partner consent, and the appropriate inclusion of pregnant women in research studies. PMID:27548420

  16. Improving informed consent with minority participants: results from researcher and community surveys.

    PubMed

    Quinn, Sandra Crouse; Garza, Mary A; Butler, James; Fryer, Craig S; Casper, Erica T; Thomas, Stephen B; Barnard, David; Kim, Kevin H

    2012-12-01

    Strengthening the informed consent process is one avenue for improving recruitment of minorities into research. This study examines that process from two different perspectives, that of researchers and that of African American and Latino community members. Through the use of two separate surveys, we compared strategies used by researchers with the preferences and attitudes of community members during the informed consent process. Our data suggest that researchers can improve the informed consent process by incorporating methods preferred by the community members along with methods shown in the literature for increasing comprehension. With this approach, the informed consent process may increase both participants' comprehension of the material and overall satisfaction, fostering greater trust in research and openness to future research opportunities. PMID:23324203

  17. A mixed methods study of participant reaction to domestic violence research in Jordan.

    PubMed

    Clark, Cari Jo; Shahrouri, Manal; Halasa, Louma; Khalaf, Inaam; Spencer, Rachael; Everson-Rose, Susan

    2012-06-01

    Research on domestic violence against women has increased considerably over the past few decades. Most participants in such studies find the exercise worthwhile and of greater benefit than emotional cost; however, systematic examination of participant reaction to research on violence is considerably lacking, especially in the Middle East region. This study begins to fill this gap by examining women's reactions to domestic violence research in Jordan and whether a personal history of violence is associated with unfavorable experiences. This sequential exploratory mixed methods study included 17 focus group discussions (FGD) with women in Amman followed by a survey conducted in reproductive health clinics throughout the country (pilot n = 30; survey n = 517). Open coding was used to identify the theme related to participant reaction in the FGD data. This construct was further examined by the subsequent survey that included dichotomous questions inquiring whether the respondent thought the study questions were important and whether they were angry or felt resentment as a result of the survey. One open-ended question on the survey provided additional qualitative data on the theme that was combined with the FGD data. Themes identified in the qualitative data pertained to expressions of gratitude and comments on the survey's value. Findings of this study indicate that Jordanian women's responses to the research process are similar to women currently represented by the extant literature in that a vast majority of its participants felt that the study was important (95%) and it did not evoke anger or resentment (96%). Many even found the study to be useful to them personally or to society. Among those who had a negative emotional reaction, most still found the research to be important. This study's findings highlight the safety and potential benefits of ethically conducted violence research. PMID:22203623

  18. Repeat participation among normal healthy research volunteers: professional guinea pigs in clinical trials?

    PubMed

    Tishler, Carl L; Bartholomae, Suzanne

    2003-01-01

    The recent death of a normal healthy volunteer, as well as the increased use of normal volunteers as research subjects, has heightened the attention given to the participation of normal volunteers in clinical research. An overlooked sub-population of normal healthy volunteers are repeat, veteran volunteers. This essay discusses ethical and methodological issues associated with the use of repeat volunteers in research, along with existing guidelines regarding the use of repeat healthy volunteers, and concludes with recommendations for safeguarding repeat volunteers and ideas supporting centralized recruiting. PMID:14593220

  19. Public Engagement Through Shared Immersion: Participating in the Processes of Research

    PubMed Central

    Tang, Jessica Janice; Maroothynaden, Jason; Bello, Fernando; Kneebone, Roger

    2015-01-01

    Recently, the literature has emphasized the aims and logistics of public engagement, rather than its epistemic and cultural processes. In this conceptual article, we use our work on surgical simulation to describe a process that has moved from the classroom and the research laboratory into the public sphere. We propose an innovative shared immersion model for framing the relationship between engagement activities and research. Our model thus frames the public engagement experience as a participative encounter, which brings visitor and researcher together in a shared (surgical) experience mediated by experts from a range of domains. PMID:25977603

  20. Simple genetics language as source of miscommunication between genetics researchers and potential research participants in informed consent documents.

    PubMed

    Morgenstern, Justin; Hegele, Robert A; Nisker, Jeff

    2015-08-01

    Informed consent is based on communication, requiring language to convey meanings and ensure understandings. The purpose of this study was to investigate the use of language in informed consent documents used in the genetics research funded by Canadian Institutes of Health Research and Genome Canada. Consent documents were requested from the principal investigators in a recent round of funding. A qualitative content analysis was performed, supported by NVivo7™. Potential barriers to informed consent were identified, including language that was vague and variable, words with both technical and common meanings, novel phrases without clear meaning, a lack of definitions, and common concepts that assume new definitions in genetics research. However, we noted that difficulties in comprehension were often obscured because the words used were generally simple and familiar. We conclude that language gaps between researcher and potential research participants may unintentionally impair comprehension and ultimately impair informed consent in genomics research. PMID:24751688

  1. Marijuana Use and Its Association with Participation, Navigation, and Enrollment in Health Research among African Americans.

    PubMed

    Webb, Fern J; Striley, Catherine W; Cottler, Linda B

    2015-01-01

    This analysis examined the association between marijuana (Mj) use, willingness to participate, navigation and enrollment in health research among African Americans. Data from HealthStreet, a community-engagement model implemented in North Central Florida that reduces health disparities by engaging and linking community members to medical and social services and health research opportunities, were analyzed to determine willingness of African American Mj users to participate, be navigated to and enroll in health research studies. Among 1,496 African American community members, 8.0% were current Mj users, 30.3% were past Mj users and 61.7% reported never using Mj. Current and past Mj users were more willing to volunteer for a research study that only involved the use of medical records, required an overnight stay in a hospital or clinic, or might require use of medical equipment compared to those who never used Mj. Current Mj users were significantly less likely to be navigated (95% CI: 0.21-0.58) to health research studies while past Mj users (95% CI: 1.05-2.64) were significantly more likely to be enrolled in health research studies. Navigating and enrolling Mj users into health research studies could help decrease health disparities and increase health equity for the entire community since study findings would undoubtedly be more representative of the entire community rather than a select few. PMID:26213328

  2. Perceptions of participating in longitudinal trauma research among women exposed to intimate partner abuse.

    PubMed

    Hebenstreit, Claire L; DePrince, Anne P

    2012-04-01

    We examine motivations for, and costs/benefits of, participation in three interviews across a one-year period among women recently exposed to intimate partner abuse (IPA). Recruited from publicly accessible police reports, women were not informed that the study focused on IPA in recruiting materials or when they scheduled the first interview. Women's ratings on the Response to Research Participation Questionnaire (RRPQ) indicated a positive benefit-to-cost ratio across all three interviews. Negative responses to participation as well as severity of IPA and PTSD symptoms did not predict retention at the next interview. These data demonstrate that studies asking about IPA experiences, even when survivors do not know in advance that IPA will be the focus of study, can be implemented within a stable benefit-to-cost ratio over time. PMID:22565584

  3. Research brief: some data concerning the reporting of participants' gender in the mental retardation literature.

    PubMed

    Porter, Cari L; Christian, LeeAnn; Poling, Alan

    2003-04-01

    The gender of participants in articles published from 1991 through 2000 in eight journals relevant to mental retardation was determined. Overall, participants were used in 65% of the articles; gender was not reported in 26% of them. When gender was reported, 6%, 8%, and 60% of the investigators used females only, males only, and both sexes, respectively. Unless gender is reported, one cannot ascertain to whom results should generalize or whether gender affects the variable under investigation. For these and other reasons, we recommend that researchers routinely specify how many of their participants are males and how many are females. This information requires little space and in most cases is easy to obtain. PMID:12622523

  4. Impact of violence research on participants over time: Helpful, harmful, or neither?

    PubMed Central

    Cook, Sarah L.; Swartout, Kevin M.; Goodnight, Bradley L.; Hipp, Tracy N.; Bellis, Alexandra

    2014-01-01

    Objective To investigate the impact of answering survey questions about experiences of stressful, stigmatizing, potentially traumatic and sexually violating events on well being, defined as reactions to research, anxiety, and positive and negative affect over two weeks. Method With an ethnically diverse sample of 559 higher education students, we employed a mixed experimental design (with between and within-subjects components) to evaluate changes in positive and negative affect, anxiety, traumatic stress symptoms, and reactions to research. We used multilevel regression models and planned contrasts to determine which, if any, specific characteristics of the survey questions caused changes in well being by comparing the effects of answering a randomly assigned set of survey questions about stressful, stigmatizing, potentially traumatic, or sexually violating life events across a two-week period. Results Controlling for baseline post-traumatic stress symptoms and levels of the outcome, we identified few statistically significant effects between conditions or across time. Significant effects included a small decrease in positive affect immediately after responding to questions about sexually violating events, which diminished at two weeks; these same participants perceived fewer drawbacks to research participation. Participants who responded to questions about stressful life events reported greater perceptions of benefits. Conclusions Our data support the safety of survey research on sexual assault or other stressful, stigmatizing, or potentially traumatic events. PMID:26191460

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

    PubMed

    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. PMID:25936733

  6. "You Need to Let Your Voice Be Heard": Research Participants' Views on Research

    ERIC Educational Resources Information Center

    McDonald, K. E.; Kidney, C. A.; Patka, M.

    2013-01-01

    Background: Persons with intellectual and developmental disabilities have had regrettably few opportunities to voice their opinions on aspects of research with which they have had direct experience. Understanding and responding to these views can contribute to policies and practices that increasingly treat people as they desire to be treated.…

  7. African American Women's Perceptions and Attitudes Regarding Participation in Medical Research: The Mayo Clinic/The Links, Incorporated Partnership

    PubMed Central

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

    2014-01-01

    Abstract Objective: To examine perceptions and attitudes toward health-related research participation among professional African American women. Methods: 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. Results: 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. Conclusion: Attitudes toward research participation were generally favorable among professional African American women; many expressed WTP in a variety of research study types. PMID:25046058

  8. 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

    PubMed Central

    2012-01-01

    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 participants placed a

  9. The experience of participatory research: Perceptions of oncology employees participating in a workplace study

    PubMed Central

    Sale, Joanna E.M.

    2015-01-01

    Participatory research, a concept developed in the Third World, has been increasingly applied to community and health research in developed countries. However, little is known about attitudes to the participatory process in the context of workplace research, especially that carried out in health care settings. In this qualitative study, employees participating in a quality of work-life (QWL) project at a Canadian cancer centre were asked about their perceptions of the participatory research process. Using a phenomenological approach, the author interviewed 12 employees. The following themes emerged from the analysis of interview data: 1) The role of management and senior management was viewed as being important but employees were uncomfortable with the presence of management at meetings; 2) The desired composition of the committee was more complex than ensuring representation from workers and there may have been a natural process by which this composition was attained; 3) Participatory research without action was unacceptable; and 4) Full participation in all aspects of the project was difficult to achieve. These findings have important implications because they challenge some existing notions in the literature about participatory research. Recommendations regarding trust issues, membership recruitment, and the role of members in the participatory process are outlined. PMID:26526288

  10. Participant observation as a research tool in a practice based profession.

    PubMed

    Kennedy, C

    1999-10-01

    This paper by Catriona Kennedy offers a personal account of the use of participant observation as a tool for exploring and uncovering the knowledge base of experienced district nurses in relation to first assessment visits. Currently, many district nurses (DNs) are educated to degree level. However, despite a long history of educational provision for DNs, the research base available to support their practice is limited. PMID:26954027

  11. The Cardiac Safety Research Consortium enters its second decade: An invitation to participate.

    PubMed

    Turner, J Rick; Kowey, Peter R; Rodriguez, Ignacio; Cabell, Christopher H; Gintant, Gary; Green, Cynthia L; Kunz, Barbara Lopez; Mortara, Justin; Sager, Philip T; Stockbridge, Norman; Wright, Theressa J; Finkle, John; Krucoff, Mitchell W

    2016-07-01

    The Cardiac Safety Research Consortium (CSRC), a transparent, public-private partnership established in 2005 as a Critical Path Program and formalized in 2006 under a Memorandum of Understanding between the United States Food and Drug Administration and Duke University, is entering its second decade. Our continuing goal is to advance paradigms for more efficient regulatory science related to the cardiovascular safety of new therapeutics, both in the United States and globally, particularly where such safety questions add burden to innovative research and development. Operationally, CSRC brings together a broad base of stakeholders from academia, industry, and government agencies in a collaborative forum focused on identifying barriers and then creating novel solutions through shared data, expertise, and collaborative research. This white paper provides a brief overview of the Consortium's activities in its first decade and a context for some of our current activities and future directions. The growth and success of the CSRC have been primarily driven by members' active participation and the development of goodwill and trust throughout our membership, which have facilitated novel collaborations across traditionally competitive or contentious stakeholder boundaries. The continued expansion of our base of participating academicians, industry experts, and regulators will define the Consortium's success in our second decade. It is our hope that sharing our endeavors to date will stimulate additional participation in the CSRC and also provide a model for other groups starting to develop similar collaborative forums. PMID:27297854

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

    PubMed Central

    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

  13. Ethical Analysis of a Qualitative Researcher's Unease in Encountering a Participant's Existential Ambivalence.

    PubMed

    Moreno-Fergusson, Marìa Elisa; Grace, Pamela J

    2016-01-01

    Gaining in-depth understanding of the experiences of persons who have suffered traumatic events with physical and psychological sequelae is important for building effective interventions. However, qualitative research of this kind can be emotionally difficult for the researcher whose research interests derive from practice experiences with the population studied. It may be difficult for the researcher to separate the role of inquirer from that of practitioner. We explore this issue using ethical analysis to differentiate the responsibilities of the researcher from those of the clinician. In the first part of the chapter, we provide some background on the population studied and traumatic spinal cord injury and its aftermath as context for the issues raised by the narrative. Then, we describe briefly the first author's research exploring the meaning of bodily changes and embodiment in persons who have suffered a traumatic spinal cord injury. We provide the part of Jack's story that most troubled the researcher and led her to discuss the situation with an ethics colleague. Finally, we use the tools of moral reasoning, ethical analysis, and principles of research ethics to explore the pertinent excerpt of the narrative. The resulting clarifications are laid out for the reader with the intent of assisting other qualitative researchers in determining the extent and limits of their obligations to participants of qualitative studies, especially those that explore sensitive issues. PMID:26673376

  14. Legal and Ethical Values in the Resolution of Research-Related Disputes: How Can IRBs Respond to Participant Complaints?

    PubMed Central

    Underhill, Kristen

    2014-01-01

    Under U.S. federal regulations, participants providing informed consent must receive information regarding whom to contact in case of a research-related injury or complaint. Although informed consent processes routinely direct participants to contact institutional review boards (IRBs) with questions or concerns, there has been little empirical study of the ways in which IRBs act to resolve participants' research-related complaints. This article explores available literature on participant complaints, considers the responsibilities of IRBs in dispute resolution, and outlines a research agenda. As a case study, this review considers disputes arising from HIV/AIDS research, focusing on novel issues arising from biomedical HIV prevention trials. PMID:24572085

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

    PubMed Central

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

    2014-01-01

    Emerging methodological research suggests that the World Wide Web (“Web”) is an appropriate venue for survey data collection, and a promising area for delivering behavioral intervention. However, the use of the Web for research raises concerns regarding sample validity, particularly when the Web is used for recruitment and enrollment. The purpose of this paper is to describe the challenges experienced in two different Web-based studies in which participant misrepresentation threatened sample validity: a survey study and an online intervention study. The lessons learned from these experiences generated three types of strategies researchers can use to reduce the likelihood of participant misrepresentation for eligibility in Web-based research. Examples of procedural/design strategies, technical/software strategies and data analytic strategies are provided along with the methodological strengths and limitations of specific strategies. The discussion includes a series of considerations to guide researchers in the selection of strategies that may be most appropriate given the aims, resources and target population of their studies. PMID:24431134

  16. Crocodile years: the traditional image of science and physical scientists' participation in weapons research

    SciTech Connect

    Crews, R.J.

    1985-01-01

    This thesis examines one dimension of the relationship between science and the arms race. More specifically, it develops and empirically examines a theoretical model of the relationship between the social demand for defense-related and weapons research, traditional scientific values related to the worldview of classical physics, and differential participation by physical scientists in such research. The theoretical model suggests that an antiquated traditional image of science exists, and that it may explain, in part, participation by physical scientists in defense-related or weapons research. Two major hypotheses are suggested by the model: first, that a constellation of values representing a traditional image of science obtains today among young physical scientists; and second, that those who currently engage (or are willing to engage) in defense-related or weapons research are more likely to agree with the values implicit in the traditional image of science than those who do not (or would not) engage in such research. The theoretical model is located within the sociologies of knowledge and science. This study includes chapters that provide an overview of the literature of these subdisciplines. This investigation concludes with an empirical examination of the model and hypotheses.

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

    PubMed

    McEvoy, Rachel; MacFarlane, Anne

    2013-04-01

    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. PMID:22717410

  18. Challenges to participation in paediatric palliative care research: a review of the literature.

    PubMed

    Tomlinson, Deborah; Bartels, Ute; Hendershot, Eleanor; Constantin, Julie; Wrathall, Glynis; Sung, Lillian

    2007-07-01

    It has been identified that there is a need for increased palliative care research within the paediatric setting. The assessment of parental views is necessary for this population. However, the conduct of research and recruitment of participants is often challenging. While conducting a study that involved parents of children receiving palliative or end-of-life care, the authors found that there were particular challenges to recruiting these parents. This comprehensive review of the literature aims to address the ethical and recruitment issues of involving parents of children that are receiving palliative or end-of-life care. Key elements, that may maximize completion of research and a more representative sample, are also discussed. These elements include obtaining the opinions on study design and interview script from experienced families and maximizing the partnership between health care professionals and the research team. PMID:17901103

  19. Undergraduate research studies program at participating institutions of the HBCU Fossil Energy Consortium

    SciTech Connect

    Bota, K.B.

    1991-01-01

    The primary objective of this research program is to expose students in the Historically Black Colleges and Universities (HBCU) Fossil Energy Consortium Institutions to energy and fossil fuels research, to stimulate their interest in the sciences and engineering and to encourage them to pursue graduate studies. This report provides the research accomplishment of the various students who participated in the program. Research results are presented on the following topics: Energy Enhancement and Pollutant Reduction in Coal by Cryogenic Diminution; Competition of NO and SO[sub 2] for OH Generated witin Electrical Aerosol Analyzers; Dispersed Iron Catalysts for Coal Gasification; NQR/NMR Studies of Copper-Cobalt Catalysts for Syngas Concersion; Catalytic gasification of Coal Chars by Potassium Sulfate and Ferrous Sulfate Mixtures; A New Method for Cleaning and Beneficiation of Ultrafine Coal; Characterization Studies of Coal-Derived Liquids; Study of Coal Liquefaction Catalysts and Removal of Certain Toxic Heavy Metal Ions from Coal Conversion Process Wastewaters.

  20. Undergraduate research studies program at participating institutions of the HBCU Fossil Energy Consortium. Final report

    SciTech Connect

    Bota, K.B.

    1991-12-31

    The primary objective of this research program is to expose students in the Historically Black Colleges and Universities (HBCU) Fossil Energy Consortium Institutions to energy and fossil fuels research, to stimulate their interest in the sciences and engineering and to encourage them to pursue graduate studies. This report provides the research accomplishment of the various students who participated in the program. Research results are presented on the following topics: Energy Enhancement and Pollutant Reduction in Coal by Cryogenic Diminution; Competition of NO and SO{sub 2} for OH Generated witin Electrical Aerosol Analyzers; Dispersed Iron Catalysts for Coal Gasification; NQR/NMR Studies of Copper-Cobalt Catalysts for Syngas Concersion; Catalytic gasification of Coal Chars by Potassium Sulfate and Ferrous Sulfate Mixtures; A New Method for Cleaning and Beneficiation of Ultrafine Coal; Characterization Studies of Coal-Derived Liquids; Study of Coal Liquefaction Catalysts and Removal of Certain Toxic Heavy Metal Ions from Coal Conversion Process Wastewaters.

  1. Impact of Research Network Participation on the Adoption of Buprenorphine for Substance Abuse Treatment

    PubMed Central

    Rieckmann, Traci R.; Abraham, Amanda J.; Kovas, Anne E.; McFarland, Bentson H.; Roman, Paul M.

    2014-01-01

    There is a growing body of research supporting the use of buprenorphine and other medication assisted treatments (MATs) for the rapidly accelerating opioid epidemic in the United States. Despite numerous advantages of buprenorphine (accessible in primary care, no daily dosing required, minimal stigma), implementation has been slow. As the field progresses, there is a need to understand the impact of participation in practitioner-scientist research networks on acceptance and uptake of buprenorphine. This paper examines the impact of research network participation on counselor attitudes toward buprenorphine addressing both counselor-level characteristics and program-level variables using hierarchical linear modeling (HLM) to account for nesting of counselors within treatment programs. Using data from the National Treatment Center Study, this project compares privately funded treatment programs (n=345) versus programs affiliated with the National Institute on Drug Abuse Clinical Trials Network (CTN) (n=198). Models included 922 counselors in 172 CTN programs and 1,203 counselors in 251 private programs. Results of two-level HLM logistic (Bernoulli) models revealed that counselors with higher levels of education, larger caseloads, more buprenorphine-specific training, and less preference for 12-step treatment models were more likely to perceive buprenorphine as acceptable and effective. Furthermore, buprenorphine was 50% more likely to be perceived as effective among counselors working in CTN-affiliated programs as compared to private programs. This study suggests that research network affiliation positively impacts counselors’ acceptance and perceptions of buprenorphine. Thus, research network participation can be utilized as a means to promote positive attitudes toward the implementation of innovations including medication assisted treatment. PMID:24594902

  2. Human Participants in Engineering Research: Notes from a Fledgling Ethics Committee.

    PubMed

    Koepsell, David; Brinkman, Willem-Paul; Pont, Sylvia

    2015-08-01

    For the past half-century, issues relating to the ethical conduct of human research have focused largely on the domain of medical, and more recently social-psychological research. The modern regime of applied ethics, emerging as it has from the Nuremberg trials and certain other historical antecedents, applies the key principles of: autonomy, respect for persons, beneficence, non-maleficence, and justice to human beings who enter trials of experimental drugs and devices (Martensen in J Hist Med Allied Sci 56(2):168-175, 2001). Institutions such as Institutional Review Boards (in the U.S.) and Ethics Committees (in Europe and elsewhere) oversee most governmentally-funded medical research around the world, in more than a hundred nations that are signers of the Declaration of Helsinki (World Medical Association 2008). Increasingly, research outside of medicine has been recognized to pose potential risks to human subjects of experiments. Ethics committees now operate in the US, Canada, the U.K. and Australia to oversee all governmental-funded research, and in other jurisdictions, the range of research covered by such committees is expanding. Social science, anthropology, and other fields are falling under more clear directives to conduct a formal ethical review for basic research involving human participants (Federman et al. in Responsible research: a systems approach to protecting research participants. National Academies Press, Washington, 2003, p. 36). The legal and institutional response for protecting human subjects in the course of developing non-medical technologies, engineering, and design is currently vague, but some universities are establishing ethics committees to oversee their human subjects research even where the experiments involved are non-medical and not technically covered by the Declaration of Helsinki. In The Netherlands, as in most of Europe, Asia, Latin America, or Africa, no laws mandate an ethical review of non-medical research. Yet, nearly 2

  3. Participation of childbearing international migrant women in research: the ethical balance.

    PubMed

    Merry, Lisa; Low, Amy; Carnevale, Franco; Gagnon, Anita J

    2016-02-01

    Fear of burdening or harming childbearing, migrant women, particularly refugees or others who have experienced war, torture, abuse, or rape, can result in their exclusion from research. This exclusion prohibits health issues and related solutions to be identified for this population. For this reason, while it may be challenging to include these women in studies, it is ethically problematic not to do so. Using ethical guidelines for research involving humans as a framework, and drawing on our research experiences. This discussion article proposes a number of strategies to improve the conditions for childbearing migrant women to participate in health research. What emerged as key for studying this diverse population and ensuring an ethically responsible approach are the use of methods that are adapted to the circumstances of childbearing migrant women and the involvement and support from "migrant-friendly" organizations. Ensuring migrant women are involved in the research process and knowledge produced is also critical. The more researchers working in this field communicate their experiences, the more will be learnt about how best to approach research with migrants. More migration and health research will enable a greater contribution to the knowledge base upon which the needs of this population can be met and their strengths maximized. PMID:25527352

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

    NASA Astrophysics Data System (ADS)

    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

  5. Does the new EU Regulation on clinical trials adequately protect vulnerable research participants?

    PubMed

    Gennet, Éloïse; Andorno, Roberto; Elger, Bernice

    2015-07-01

    Vulnerable research participants deserve special protection because of their increased risks of being wronged. Yet, paradoxically, the conduct of trials involving vulnerable groups is sometimes inescapable to develop safe and efficient therapies suitable to these groups. The key question is therefore how to protect vulnerable research participants from harm and exploitation without excluding the populations they belong to from the benefits of research. The European Union faced this challenge in April 2014 when adopting the new Regulation on clinical trials, which will replace the currently applicable 2001 Clinical Trials Directive in 2016. In order to assess the protection of vulnerable persons in the new Regulation, this paper makes four suggestions: first, the need to adopt a risk-based approach to vulnerability in biomedical research; second, to better distinguish between decisional vulnerabilities and health-related vulnerabilities; third, to emphasise the need to preserve the freedom of consent of subjects with decisional vulnerability, who are more susceptible to undue influence; and finally to assert the need of actively promoting specific clinical trials involving people with physical or psychological vulnerabilities. In conclusion, this paper claims that the protection of vulnerable subjects still needs to be improved in the new EU Regulation. PMID:25951954

  6. Gerontologic Biostatistics: The Statistical Challenges of Clinical Research with Older Study Participants

    PubMed Central

    Van Ness, Peter H.; Charpentier, Peter A.; Ip, Edward H.; Leng, Xiaoyan; Murphy, Terrence E.; Tooze, Janet A.; Allore, Heather G.

    2010-01-01

    The medical and personal circumstances of older persons present challenges for designing and analyzing clinical research studies in which they participate. These challenges presented by elderly study samples are not unique but they are sufficiently distinctive to warrant deliberate and systematic attention. Their distinctiveness originates in the multifactorial etiologies of geriatric health syndromes and the multiple morbidities accruing with aging at the end of life. The objective of this article is to identify a set of statistical challenges arising in research with older persons that should be considered conjointly in the practice of clinical research and that should be addressed systematically in the training of biostatisticians intending to work with gerontologists, geriatricians, and older study participants. The statistical challenges include design and analytical strategies for multicomponent interventions, multiple outcomes, state transition models, floor and ceiling effects, missing data, and mixed methods. The methodological and pedagogical themes of this article will be integrated by a description of a proposed subdiscipline of “gerontologic biostatistics” and supported by the introduction of new set of statistical resources for researchers working in this area. These conceptual and methodological resources have been developed in the context of several collaborating Claude D. Pepper Older Americans Independence Centers. PMID:20533963

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

    PubMed

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

    2015-10-01

    OBJECTIVETo 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. PMID:26516755

  8. Barriers to participation in mental health research: are there specific gender, ethnicity and age related barriers?

    PubMed Central

    2010-01-01

    Background It is well established that the incidence, prevalence and presentation of mental disorders differ by gender, ethnicity and age, and there is evidence that there is also differential representation in mental health research by these characteristics. The aim of this paper is to a) review the current literature on the nature of barriers to participation in mental health research, with particular reference to gender, age and ethnicity; b) review the evidence on the effectiveness of strategies used to overcome these barriers. Method Studies published up to December 2008 were identified using MEDLINE, PsycINFO and EMBASE using relevant mesh headings and keywords. Results Forty-nine papers were identified. There was evidence of a wide range of barriers including transportation difficulties, distrust and suspicion of researchers, and the stigma attached to mental illness. Strategies to overcome these barriers included the use of bilingual staff, assistance with travel, avoiding the use of stigmatising language in marketing material and a focus on education about the disorder under investigation. There were very few evaluations of such strategies, but there was evidence that ethnically matching recruiters to potential participants did not improve recruitment rates. Educational strategies were helpful and increased recruitment. Conclusion Mental health researchers should consider including caregivers in recruitment procedures where possible, provide clear descriptions of study aims and describe the representativeness of their sample when reporting study results. Studies that systematically investigate strategies to overcome barriers to recruitment are needed. PMID:21126334

  9. Participation in Biomedical Research Studies and Cancer Screenings: Perceptions of Risks to Minorities Compared With Whites

    PubMed Central

    Katz, Ralph V.; Wang, Min Qi; Green, B. Lee; Kressin, Nancy R.; Claudio, Cristina; Russell, Stefanie Luise; Sommervil, Christelle

    2009-01-01

    Background This analysis was conducted to determine whether there is a difference among blacks, Hispanics, and whites in their perception of risks associated with participating in either a biomedical study or a cancer screening. Methods The Tuskegee Legacy Project Questionnaire, which focused on research subject participation, was administered in two different surveys (1999-2000 and 2003) in seven cities. The Cancer Screening Questionnaire was administered in 2003 in three cities. Results The study sample across the three surveys consisted of 1,064 blacks, 781 Hispanics, and 1,598 non-Hispanic whites. Response rates ranged from 44% to 70% by city. Logistic regression analyses, adjusted for age, sex, education, income, and city, revealed that blacks and Hispanics each self-reported that minorities, compared with whites, are more likely to be “taken advantage of” in biomedical studies and much less likely to get a “thorough and careful examination” in a cancer screening (odds ratios ranged from 3.6 to 14.2). Conclusions Blacks and Hispanics perceive equally high levels of risk for participating in cancer screening examinations and for volunteering to become research subjects in biomedical studies. This perception provides a strong message about the need to overtly address this critical health disparities issue. PMID:18813202

  10. The Undergraduate ALFALFA Team: A Model for Undergraduate Participation and Outreach in Large Research Collaborations

    NASA Astrophysics Data System (ADS)

    Martin, A. M.; Koopmann, R.; Higdon, S.; Balonek, T. J.; Haynes, M. P.; Giovanelli, R.; Adams, E. A. K.; Kent, B. R.; Stierwalt, S.

    2011-09-01

    The Arecibo Legacy Fast ALFA (ALFALFA) blind neutral hydrogen survey is an ongoing project that includes an innovative undergraduate outreach component promoting the participation of students and faculty at undergraduate-focused institutions in a large, multi-year research collaboration. The survey, which will ultimately detect ˜30,000 gas-rich galaxies, provides resources and authentic opportunities for undergraduates and faculty, including a high fraction of women and minorities, through the Undergraduate ALFALFA Team (UAT), an NSF-sponsored consortium of 18 participating institutions. The UAT experience features annual workshops at the Arecibo Observatory with hands-on experience for undergrad participants and their faculty mentors. Graduate students on the Cornell ALFALFA Team help plan and facilitate UAT activities and benefit by developing their own skills as mentors, project supervisors, and science communicators. The UAT is developing online lesson plans and activity guides that make use of the ALFALFA online data archive and of innovative learning techniques supported by the findings of astronomy education research.

  11. Sampling and Recruiting Community-Based Programs Using Community-Partnered Participation Research.

    PubMed

    Stockdale, Susan E; Tang, Lingqi; Pudilo, Esmeralda; Lucas-Wright, Anna; Chung, Bowen; Horta, Mariana; Masongsong, Zoe; Jones, Felica; Belin, Thomas R; Sherbourne, Cathy; Wells, Kenneth

    2016-03-01

    The inclusion of community partners in participatory leadership roles around statistical design issues like sampling and randomization has raised concerns about scientific integrity. This article presents a case study of a community-partnered, participatory research (CPPR) cluster-randomized, comparative effectiveness trial to examine implications for study validity and community relevance. Using study administrative data, we describe a CPPR-based design and implementation process for agency/program sampling, recruitment, and randomization for depression interventions. We calculated participation rates and used cross-tabulation to examine balance by intervention status on service sector, location, and program size and assessed differences in potential populations served. We achieved 51.5% agency and 89.6% program participation rates. Programs in different intervention arms were not significantly different on service sector, location, or program size. Participating programs were not significantly different from eligible, nonparticipating programs on community characteristics. We reject claims that including community members in research design decisions compromises scientific integrity. This case study suggests that a CPPR process can improve implementation of a community-grounded, rigorous randomized comparative effectiveness trial. PMID:26384926

  12. Attitudes and beliefs toward biobehavioural research participation: voices and concerns of urban adolescent females receiving outpatient mental health treatment

    PubMed Central

    Brawner, Bridgette M.; Volpe, Ellen M.; Stewart, Jennifer M.; Gomes, Melissa M.

    2015-01-01

    Background Biobehavioural research methodology can be invasive and burdensome for participants—particularly adolescents with mental illnesses. Human biological researchers should consider how methodological impositions may hinder adolescent research participation. However, literature on adolescent’s voices and concerns toward biobehavioural research participation is virtually non-existent. Aim This study was designed to determine adolescents’ perceptions of participation in research involving the collection of biomarkers via blood, saliva and/or urine samples. Subjects and methods Urban adolescent females (aged 12–19) receiving outpatient mental health treatment (n = 37) participated in focus groups with concurrent survey administration to explore attitudes, beliefs and willingness/intentions toward biobehavioural research participation. Results Participants had favourable attitudes toward biobehavioural research and were amenable to provide each specimen type. Mistrust for research emerged, however, and concerns related to privacy and confidentiality were expressed. Conclusion Participant recruitment is a critical component in study design and implementation; this includes knowledge of population-specific recruitment barriers and facilitators. This innovative paper provides a context for the research participants’ decision-making process, strategies to allay fears and concerns and concrete areas to target in research-related interventions. Although the findings are from a specific, US-based sample, the implications warrant replication of the research in other geosocial settings. PMID:23822716

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

    PubMed

    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. PMID:14762542

  14. Program for the Increased Participation of Minorities in NASA-Related Research

    NASA Technical Reports Server (NTRS)

    2003-01-01

    The goal of this program is to increase the participation of minorities in NASA related research and "Science for the Nation s Interest". Collaborative research projects will be developed involving NASA-MSFC, National Space Science and Technology Center (NSSTC), other government agencies, industries and minority serving institutions (MSIs). The primary focus for the MSIs will be on Alabama A&M University and Tuskegee University, which are in partnership with the NSSTC. These schools have excellent Ph.D. programs in physics and materials science and engineering, respectively. The first phase of this program will be carried out at Alabama A&M University in the "Research and Development Office" in collaboration with Dr. Dorothy Huston, Vice President of Research and Development. The development assignment will be carried out at the NSSTC with Sandy Coleman/ RS01 and this will primarily involve working with Tuskegee University.A portion of the program will be devoted to identifying and contacting potential funding sources for use in establishing collaborative research projects between NASA-MSFC, other government agencies, NSSTC, industries, and MSIs. These potential funding sources include the National Science Foundation (NSF), National Institute of Health (NIH), Department of Defense (DOD), Army, Navy, and Air Force. Collaborative research projects will be written mostly in the following research areas: a. Cosmic radiation shielding materials b. Advanced propulsion material c. Biomedical materials and biosensors d. In situ resource utilization e. Photonics for NASA applications

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

    NASA Technical Reports Server (NTRS)

    Crimmins, Theresa M.; Elmore, A. J.; Huete, A.; Keller, S.; Levetin, E.; Luvall, J.; Meyers, O.; Stylinski, C. D.; VandeWater, P.K.; Vukovic, A.

    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. Results/Conclusions 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

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

    NASA Technical Reports Server (NTRS)

    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

  17. NSF GK-12 Fellows as Mentors for K-12 Teachers Participating in Field Research Experiences

    NASA Astrophysics Data System (ADS)

    Ellins, K.; Perry, E.

    2005-12-01

    The University of Texas Institute for Geophysics (UTIG) recognizes the value of providing educational opportunities to K-12 teachers who play a critical role in shaping the minds of young people who are the future of our science. To that end, UTIG established the "Texas Teachers in the Field" program in 2000 to formalize the participation of K-12 teachers in field programs that included UTIG scientists. In 2002, "Texas Teachers in the Field" evolved through UTIG's involvement in a University of Texas at Austin GK-12 project led by the Environmental Sciences Institute, which enabled UTIG to partner a subset of GK-12 Fellows with teachers participating in geophysical field programs. During the three years of the GK-12 project, UTIG successfully partnered four GK-12 Fellows with five K-12 teachers. The Fellows served as mentors to the teachers, as liaisons between UTIG scientists leading field programs and teachers and their students, and as resources in science, mathematics, and technology instruction. Specifically, Fellows prepared teachers and their students for the field investigations, supervised the design of individual Teacher Research Experience (TRE) projects, and helped teachers to develop standards-aligned curriculum resources related to the field program for use in their own classrooms, as well as broader distribution. Although all but one TRE occurred during the school year, Texas school districts and principals were willing to release teachers to participate because the experience and destinations were so extraordinary (i.e., a land-based program in Tierra del Fuego, Argentina; and research cruises to the Southeast Caribbean Sea and Hess Deep in the Pacific Ocean) and carried opportunities to work with scientists from around the world. This exceptional collaboration of GK-12 Fellows, K-12 teachers and research scientists enriches K-12 student learning and promotes greater enthusiasm for science. The level of mentoring, preparation and follow-up provided

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

    PubMed

    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. PMID:25146179

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

    NASA Astrophysics Data System (ADS)

    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.

  20. Disclosing pathogenic genetic variants to research participants: Quantifying an emerging ethical responsibility

    PubMed Central

    Cassa, Christopher A.; Savage, Sarah K.; Taylor, Patrick L.; Green, Robert C.; McGuire, Amy L.; Mandl, Kenneth D.

    2012-01-01

    There is an emerging consensus that when investigators obtain genomic data from research participants, they may incur an ethical responsibility to inform at-risk individuals about clinically significant variants discovered during the course of their research. With whole-exome sequencing becoming commonplace and the falling costs of full-genome sequencing, there will be an increasingly large number of variants identified in research participants that may be of sufficient clinical relevance to share. An explicit approach to triaging and communicating these results has yet to be developed, and even the magnitude of the task is uncertain. To develop an estimate of the number of variants that might qualify for disclosure, we apply recently published recommendations for the return of results to a defined and representative set of variants and then extrapolate these estimates to genome scale. We find that the total number of variants meeting the threshold for recommended disclosure ranges from 3955–12,579 (3.79%–12.06%, 95% CI) in the most conservative estimate to 6998–17,189 (6.69%–16.48%, 95% CI) in an estimate including variants with variable disease expressivity. Additionally, if the growth rate from the previous 4 yr continues, we estimate that the total number of disease-associated variants will grow 37% over the next 4 yr. PMID:22147367

  1. The nanny state meets the inner lawyer: overregulating while underprotecting human participants in research.

    PubMed

    Gunsalus, C K

    2004-01-01

    Without any systematic data or evidence of a problem, or even a thoughtful analysis of costs and benefits, the application of the human participant review system within universities is overreaching at the same time that some risky experimentation on humans outside of universities is unregulated. This article questions the purpose, feasibility, and effectiveness of current IRB approaches to most "2 people talking" situations and proposes scaling back the regulatory system to increase respect accorded it by researchers and its ability to protect human participants of research from real versus imagined harms. In too many cases, the focus is on form over ethical substance: counting what can be counted, rather than focusing instead on what counts. Some disciplines--oral history and journalism, for example--simply do not belong within the scope of institutional review board jurisdiction. Others, such as survey research, informational interviews, and informal interactions, call for a shift from centralized review to more departmentally based (i.e., rooted in disciplinary ethics) oversight, and clearer guidelines on what requires advance review as opposed to provision of post hoc complaint systems. PMID:16625733

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

    PubMed Central

    2014-01-01

    Background 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. Methods 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. Results 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. Conclusions This study from Qatar is the first to provide empirical data on recruitment, informed consent, compensation and other research procedures in a general

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

    PubMed

    Wells, Jo Nell; Cagle, Carolyn Spence

    2009-07-01

    Most student work as research assistants occurs at the graduate level of nursing education, and little is known about the role of undergraduate students as research assistants (RAs) in major research projects. Based on our desire to study Mexican American (MA) cancer caregivers, we needed bilingual and bicultural RAs to serve as data collectors with women who spoke Spanish and possessed cultural beliefs that influenced their caregiving. Following successful recruitment, orientation, and mentoring based on Bandura's social learning theory [Bandura, A., 2001. Social learning theory: an agentic perspective. Annual Review of Psychology 52, 1-26] and accepted teaching-learning principles, RAs engaged in various behaviors that facilitated study outcomes. Faculty researchers, RAs, and study participants benefitted greatly from the undergraduate student involvement in this project. This article describes successful student inclusion approaches, ongoing faculty-RA interactions, and lessons learned from the research team experience. Guidelines discussed support the potential for making the undergraduate RA role a useful and unique learning experience. PMID:19111369

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

    PubMed

    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. PMID:23078487

  5. Restoring Balance: A Consensus Statement on the Protection of Vulnerable Research Participants

    PubMed Central

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

    2012-01-01

    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. PMID:23078487

  6. Project Sugar: a recruitment model for successful African-American participation in health research.

    PubMed

    Spruill, Ida

    2004-12-01

    Attempts to increase the number of African-Americans participating in clinical trials, regardless of age, have been hampered by a lack of published data regarding successful recruitment and retention strategies. Successful strategies can be used as a guide for future researchers in the design of studies to recruit African-Americans, regardless of age, into clinical as well as qualitative studies to promote health among this vulnerable population. The goal of the primary study was to recruit 400 families with 2 or more family members affected with diabetes, totaling 800 participants. Project Sugar utilized the coordinated research principals known as CPR (Community, Plan, Reward) to recruit 615 African-American families totalling 1,230 people known as the Sea Island people (Gullahs) in the first five years of the study. The intention of the study was to identify markers for diabetes among these Sea Island natives who tended to be genetically homogenous. In so doing, specific strategies were identified as serendipitous findings for this study. Nonetheless, these serendipitous findings were thought to be so integral to success in the recruitment of African-Americans, mainly because of their success among this fairly close-knit, historically isolated, and significantly genetically homogenous Sea Islanders (Gullah). In recognizing the success of this model, an alternate aim was examined to devise rigorous scientific strategies to promote methods for recruitment of African-Americans into clinical trials aimed at reducing health disparities among this vulnerable population. This projects success can be attributed to the involvement of a local citizen advisory committee and rewards in the form of services, benefits, and incentives to the community. Findings from this alternative aim, which was scientifically built on the CPR model, suggest that when services are provided to the community, coupled with the use of local community advisory committees, the possibilities of

  7. Confidentiality, privacy, and respect: experiences of female sex workers participating in HIV research in Andhra Pradesh, India.

    PubMed

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

    2014-02-01

    Female sex workers (FSWs) 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 FSWs 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 FSWs. PMID:24572080

  8. Participant Satisfaction With a Preference-Setting Tool for the Return of Individual Research Results in Pediatric Genomic Research.

    PubMed

    Holm, Ingrid A; Iles, Brittany R; Ziniel, Sonja I; Bacon, Phoebe L; Savage, Sarah K; Christensen, Kurt D; Weitzman, Elissa R; Green, Robert C; Huntington, Noelle L

    2015-10-01

    The perceived benefit of return of individual research results (IRRs) in accordance to participants' preferences in genomic biobank research is unclear. We developed an online preference-setting tool for return of IRRs based on the preventability and severity of a condition, which included an opt-out option for IRRs for mental illness, developmental disorders, childhood-onset degenerative conditions, and adult-onset conditions. Parents of patients <18 years of age at Boston Children's Hospital were randomized to the hypothetical scenario that their child was enrolled in one of four biobanks with different policies for IRRs to receive (a) "None," (b) "All," (c) "Binary"--choice to receive all or none, and (d) "Granular"--use the preference-setting tool to choose categories of IRRs. Parents were given a hypothetical IRRs report for their child. The survey was sent to 11,391 parents and completed by 2,718. The Granular group was the most satisfied with the process, biobank, and hypothetical IRRs received. The None group was least satisfied and least likely to agree that the biobank was beneficial (p < .001). The response to the statement that the biobank was harmful was not different between groups. Our data suggest that the ability to designate preferences leads to greater satisfaction and may increase biobank participation. PMID:26376753

  9. Model of oronasal rehabilitation in children with obstructive sleep apnea syndrome undergoing rapid maxillary expansion: Research review

    PubMed Central

    Levrini, Luca; Lorusso, Paola; Caprioglio, Alberto; Magnani, Augusta; Diaféria, Giovana; Bittencourt, Lia; Bommarito, Silvana

    2014-01-01

    Rapid maxillary expansion (RME) is a widely used practice in orthodontics. Scientific evidence shows that RME can be helpful in modifying the breathing pattern in mouth-breathing patients. In order to promote the restoration of physiological breathing we have developed a rehabilitation program associated with RME in children. The aim of the study was a literature review and a model of orofacial rehabilitation in children with obstructive sleep apnea undergoing treatment with rapid maxillary expansion. Muscular training (local exercises and general ones) is the key factor of the program. It also includes hygienic and behavior instructions as well as other therapeutic procedures such as rhinosinusal washes, a postural re-education (Alexander technique) and, if necessary, a pharmacological treatment aimed to improve nasal obstruction. The program should be customized for each patient. If RME is supported by an adequate functional rehabilitation, the possibility to change the breathing pattern is considerably amplified. Awareness, motivation and collaboration of the child and their parents, as well as the cooperation among specialists, such as orthodontist, speech therapist, pediatrician and otolaryngologist, are necessary conditions to achieve the goal. PMID:26483933

  10. Stakeholder participation in research design and decisions: scientists, fishers, and mercury in saltwater fish.

    PubMed

    Burger, Joanna; Gochfeld, Michael; Fote, Tom

    2013-03-01

    Individuals who fish and eat self-caught fish make decisions about where to fish, the type to eat, and the quantity to eat. Federal and state agencies often issue consumption advisories for some fish with high mercury (Hg) concentrations, but seldom provide either the actual metal levels to the general public, or identify the fish that have low contaminant levels. Community participatory research is of growing importance in defining, studying, and resolving complex exposure and risk issues, and this paper is at the intersection of traditional stakeholder approaches and community-based participatory research. The objective of this paper is to describe the process whereby stakeholders (fishers), were involved in directing and refining research questions to address their particular informational needs about mercury levels in fish, potential risks, and methods to maintain health, by balancing the risks and benefits of fish consumption. A range of stakeholders, mainly individual fishers, fishing organizations, and other scientists, were involved at nearly every stage. Community participants influenced many aspects of the design and implementation of the research, in the determination of which fish species to sample, in the collection of the samples, and in the final analyses and synthesis, as well as the communication of results and implications of the research through their fishing club publications, talks and gatherings. By involving the most interested and affected communities, the data and conclusions are relevant to their needs because the fish examined were those they ate and wanted information about, and directly address concerns about the risk from consuming self-caught fish. Although mercury levels in fish presumed to be high in mercury are known, little information was available to the fishermen on mercury levels in fish that were low and thus provided little risk to their families. While community participatory research is more time-consuming and expensive

  11. Stakeholder Participation in Research Design and Decisions: Scientists, Fishers, and Mercury in Saltwater Fish

    PubMed Central

    Burger, Joanna; Gochfeld, Michael; Fote, Tom

    2015-01-01

    Individuals who fish and eat self-caught fish make decisions about where to fish, the type to eat, and the quantity to eat. Federal and state agencies often issue consumption advisories for some fish with high mercury (Hg) concentrations, but seldom provide either the actual metal levels to the general public, or identify the fish that have low contaminant levels. Community participatory research is of growing importance in defining, studying, and resolving complex exposure and risk issues, and this paper is at the intersection of traditional stakeholder approaches and community-based participatory research. The objective of this paper is to describe the process whereby stakeholders (fishers), were involved in directing and refining research questions to address their particular informational needs about mercury levels in fish, potential risks, and methods to maintain health, by balancing the risks and benefits of fish consumption. A range of stakeholders, mainly individual fishers, fishing organizations, and other scientists, were involved at nearly every stage. Community participants influenced many aspects of the design and implementation of the research, in the determination of which fish species to sample, in the collection of the samples, and in the final analyses and synthesis, as well as the communication of results and implications of the research through their fishing club publications, talks and gatherings. By involving the most interested and affected communities, the data and conclusions are relevant to their needs because the fish examined were those they ate and wanted information about, and directly address concerns about the risk from consuming self-caught fish. Although mercury levels in fish presumed to be high in mercury are known, little information was available to the fishermen on mercury levels in fish that were low and thus provided little risk to their families. While community participatory research is more time-consuming and expensive

  12. A Pilot Program in Collaboration with African American Churches Successfully Increases Awareness of the Importance of Cancer Research and Participation in Cancer Translational Research Studies among African Americans

    PubMed Central

    Albertie, Monica; Lesperance, Mary; Weis, Jennifer A.; Coles, Alton; Smith, Nina; Mills, Lynette; Woodward, Timothy; Aspitia, Alvaro Moreno; Vishnu, Prakash; Willis, Floyd; Isley, Amber; Fonseca, Rafael; Vachon, Celine; Rajkumar, S. Vincent

    2013-01-01

    African Americans are underrepresented in cancer research. We evaluate whether collaboration with African American churches can improve cancer awareness and increase participation in translational research protocols among African Americans. From February to April 2010, the Mayo Clinic partnered with African American Jacksonville churches to provide educational programs focused on cancer research and healthy behaviors. Education on multiple myeloma and on-site access to a translational cancer research pilot project evaluating the prevalence of monoclonal gammopathies and t(14,18) in African Americans was offered. Seventy-four percent, 236 out of 318 participants, returned the questionnaires. The majority of participants had never received information on multiple myeloma (67%), had never received clinical research study information (57%), and were enrolled in the translational research studies (55%). Partnerships with African American churches in community education projects that bring research to church venues are effective in improving cancer awareness and in increasing research participation among African Americans. PMID:22072126

  13. Perceptions of African-American Health Professionals and Community Members on Participation of Children and Pregnant Women in Genetic Research

    PubMed Central

    Ngui, Emmanuel M.; Warner, Teddy D.; Roberts, Laura Weiss

    2014-01-01

    Background As genetic research gains more prominence in society, ethical concerns and the need for safeguards in the participation of children and pregnant women have increased. This study examined the perspectives of African-American health professional and community members on genetic research involving children and pregnant women. Methods We used a mixed methods approach to collect and analyze survey data and qualitative data from focus groups of community members and structured interviews of health professionals. Results We found that community members had significantly more favorable attitudes toward participation of children and pregnant women in genetic research than health professionals. Health professionals did not differ significantly from community members in their perceived understanding of genetic research. Emergent themes included limited knowledge of genetic research and distinction of biomedical research and clinical care, ethical concerns about confidentiality, and potential harm and the need to protect children and pregnant women. Participants expressed high interest and favorable attitude towards genetic research, despite limited genetic knowledge and concerns of potential harm to children and pregnant women. Some participants felt that genetic research findings could help dispel stigma and reduce discrimination, especially in mental illness. Conclusion Findings suggest that the recruitment of participants into genetic research should directly address privacy and benefit concerns, and limited knowledge of physical and mental illness genetic research. There is a critical need to invest and engage racial/ethnic communities early, provide education on genetics, mental illness, and translate and share research findings with these communities. PMID:24216722

  14. The Educational Function of an Astronomy Research Experience for Undergraduates Program as Described by Female Participants

    NASA Astrophysics Data System (ADS)

    Slater, Stephanie

    2010-01-01

    The long-running REU-program is tacitly intended to increase retention and provide "an important educational experience" for undergraduates, particularly women, minorities and underrepresented groups. This longitudinal, two-stage study was designed to explore the ways in which the REU acted as an educational experience for 51 women in the field of astronomy. Stage-1 consisted of an ex post facto analysis of data collected over 8 years, including multiple interviews with each participant during their REU, annual open-ended alumni surveys, faculty interviews, and extensive field notes. Four themes emerged, related to developing understandings of the nature of professional scientific work, the scientific process, the culture of academia, and an understanding of the "self." Analysis provided an initial theory that was used to design the Stage-2 interview protocol. In Stage-2, over 10 hours of interviews were conducted with 8 participants selected for their potential to disconfirm the initial theory. Results indicate that the REU provided a limited impact in terms of participants’ knowledge of professional astronomy as a largely computer-based endeavor. The REU did not provide a substantive educational experience related to the nature of scientific work, the scientific process, the culture of academia, participants' conceptions about themselves as situated in science, or other aspects of the "self,” were limited. Instead, the data suggests that these women began the REU with pre-existing and remarkably strong conceptions in these areas, and that the REU did not functional to alter those states. These conceptions were frequently associated with other mentors/scientist interactions, from middle school into the undergraduate years. Instructors and family members also served as crucial forces in shaping highly developed, stable science identities. Sustained relationships with mentors were particularly transformational. These findings motivate an ongoing research agenda

  15. A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya

    PubMed Central

    2012-01-01

    Background International collaborators face challenges in the design and implementation of ethical biomedical research. Evaluating community understanding of research and processes like informed consent may enable researchers to better protect research participants in a particular setting; however, there exist few studies examining community perspectives in health research, particularly in resource-limited settings, or strategies for engaging the community in research processes. Our goal was to inform ethical research practice in a biomedical research setting in western Kenya and similar resource-limited settings. Methods We sought to use mabaraza, traditional East African community assemblies, in a qualitative study to understand community perspectives on biomedical research and informed consent within a collaborative, multinational research network in western Kenya. Analyses included manual, progressive coding of transcripts from mabaraza to identify emerging central concepts. Results Our findings from two mabaraza with 108 community members revealed that, while participants understood some principles of biomedical research, they emphasized perceived benefits from participation in research over potential risks. Many community members equated health research with HIV testing or care, which may be explained in part by the setting of this particular study. In addition to valuing informed consent as understanding and accepting a role in research activities, participants endorsed an increased role for the community in making decisions about research participation, especially in the case of children, through a process of community consent. Conclusions Our study suggests that international biomedical research must account for community understanding of research and informed consent, particularly when involving children. Moreover, traditional community forums, such as mabaraza in East Africa, can be used effectively to gather these data and may serve as a forum to

  16. Association of Race, Ethnicity and Language with Participation in Mental Health Research Among Adult Patients in Primary Care.

    PubMed

    Chang, Trina E; Brill, Charlotte D; Traeger, Lara; Bedoya, C Andres; Inamori, Aya; Hagan, Patrick N; Flaherty, Katherine; Hails, Katherine; Yeung, Albert; Trinh, Nhi-Ha

    2015-12-01

    Racial and ethnic minorities remain underrepresented in clinical psychiatric research, but the reasons are not fully understood and may vary widely between minority groups. We used the Z-test of independent proportions and binary logistic regression to examine the relationship between race, ethnicity or primary language and participation in screening as well as interest in further research participation among primary care patients being screened for a depression study. Minorities were less likely than non-Hispanic Whites to complete the initial screening survey. Latinos and Blacks were more likely to agree to be contacted for research than non-Hispanic Whites. Among Latinos, primary language was associated with willingness to be contacted for research. Associations between research participation and race, ethnicity and language are complex and vary across different enrollment steps. Future research should consider stages of the research enrollment process separately to better understand barriers and identify targets for intervention. PMID:25398517

  17. Strategies for Motivating Latino Couples' Participation in Qualitative Health Research and Their Effects on Sample Construction

    PubMed Central

    Preloran, H. Mabel; Browner, Carole H.; Lieber, Eli

    2001-01-01

    Many investigators report difficulties recruiting low-income Latinos into health research projects, especially when they seek to enroll more than one family member. We developed a series of strategies that proved effective in motivating candidates who were initially reluctant to enroll. There is a possibility that these strategies biased the composition of the sample. Predictably, the reasons participants gave for enrolling were correlated with the recruitment strategy that had brought them into the study. Furthermore, we found statistically significant associations between recruitment technique and key study variables (e.g., the domestic stability of the couple). By increasing investigators' ability to recruit Latinos, however, the strategies outlined should help to ensure that Latinos' experiences are given due weight in the deliberations of medical professionals and policymakers. PMID:11684612

  18. Providing free heroin to addicts participating in research – ethical concerns and the question of voluntariness

    PubMed Central

    Henden, Edmund; Bærøe, Kristine

    2015-01-01

    Providing heroin to people with heroin addiction taking part in medical trials assessing the effectiveness of the drug as a treatment alternative breaches ethical research standards, some ethicists maintain. Heroin addicts, they say, are unable to consent voluntarily to taking part in these trials. Other ethicists disagree. In our view, both sides of the debate have an inadequate understanding of ‘voluntariness’. In this article we therefore offer a fuller definition of the concept, one which allows for a more flexible, case-to-case approach in which some heroin addicts are considered capable of consenting voluntarily, others not. An advantage of this approach, it is argued, is that it provides a safety net to minimise the risk of inflicting harm on trial participants. PMID:26191421

  19. 22 CFR 63.7 - Grants to United States participants to consult, lecture, teach, engage in research, demonstrate...

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 22 Foreign Relations 1 2010-04-01 2010-04-01 false Grants to United States participants to consult, lecture, teach, engage in research, demonstrate special skills, or engage in specialized programs. 63.7 Section 63.7 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND ON BEHALF OF PARTICIPANTS IN THE...

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

    ERIC Educational Resources Information Center

    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…

  1. Effects of Student Participation in Decision Making at School. A Systematic Review and Synthesis of Empirical Research

    ERIC Educational Resources Information Center

    Mager, Ursula; Nowak, Peter

    2012-01-01

    This article reviews empirical research on the effects of student participation in school decision-making processes. Out of 3102 searched citations, a total of 32 publications met the inclusion criteria. The qualitative analyses employed in this review yielded a typology of student participation, a categorisation of the diverse effects of student…

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

    PubMed Central

    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

  3. 22 CFR 63.7 - Grants to United States participants to consult, lecture, teach, engage in research, demonstrate...

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ..., lecture, teach, engage in research, demonstrate special skills, or engage in specialized programs. 63.7... United States participants to consult, lecture, teach, engage in research, demonstrate special skills, or... to consult, lecture, teach, engage in research, demonstrate special skills, or engage in...

  4. Project for Minorities and Women in Research. Final Report of a Model to Increase Participation of Minorities and Women in Educational Research.

    ERIC Educational Resources Information Center

    Escobedo, Theresa H.

    A 3-year project was established at the University of Texas at Austin to enhance the educational research skills of minorities and women. The project emphasized four areas: (1) support of participants' research efforts through financial aid for research activities, training seminars, opportunities to engage in research projects, access to support…

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

    PubMed Central

    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

  6. Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?

    PubMed Central

    Steinsbekk, Kristin Solum; Kåre Myskja, Bjørn; Solberg, Berge

    2013-01-01

    In the endeavour of biobank research there is dispute concerning what type of consent and which form of donor–biobank relationship meet high ethical standards. Up until now, a ‘broad consent' model has been used in many present-day biobank projects. However it has been, by some scholars, deemed as a pragmatic, and not an acceptable ethical solution. Calls for change have been made on the basis of avoidance of paternalism, intentions to fulfil the principle of autonomy, wish for increased user participation, a questioning of the role of experts and ideas advocating reduction of top–down governance. Recently, an approach termed ‘dynamic consent' has been proposed to meet such challenges. Dynamic consent uses modern communication strategies to inform, involve, offer choices and last but not the least obtain consent for every research projects based on biobank resources. At first glance dynamic consent seems appealing, and we have identified six claims of superiority of this model; claims pertaining to autonomy, information, increased engagement, control, social robustness and reciprocity. However, after closer examination, there seems to be several weaknesses with a dynamic consent approach; among others the risk of inviting people into the therapeutic misconception as well as individualizing the ethical review of research projects. When comparing the two models, broad consent still holds and can be deemed a good ethical solution for longitudinal biobank research. Nevertheless, there is potential for improvement in the broad model, and criticism can be met by adapting some of the modern communication strategies proposed in the dynamic consent approach. PMID:23299918

  7. Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature

    PubMed Central

    2012-01-01

    Background The development of the evidence-base informing end of life (EoL) care is hampered by the assumption that patients at the EoL are too vulnerable to participate in research. This study aims to systematically and critically review the evidence regarding the experiences and views of patients, caregivers, professionals and researchers about participation in EoL care research, and to identify best practices in research participation. Methods We searched seven electronic databases, and hand searched three journals and the bibliographies of relevant papers. Inclusion criteria were original research papers on involvement in EoL care research or its impact on participants. Critical interpretive synthesis was used to integrate the whole body of empirical evidence on this topic and generate theoretical categories from the evidence. Results Of a total of 239 identified studies, 20 studies met the inclusion criteria, from: the US (11), the UK (6) and Australia (3). Most focused on patients with cancer (12) and were conducted in hospices (9) or hospitals (7). Studies enquired about issues related to: EoL care research in general (5), specific research methods (13), and trial research (2). The studies evaluating willingness to participate in EoL care research showed positive outcomes across the different parties involved in research. Factors influencing willingness were mainly physical and cognitive impairment. Participating in research was a positive experience for most patients and carers but a minority experienced distress. This was related to: characteristics of the participants; the type of research; or the way it was conducted. Participatory study designs were found particularly suitable for enabling the inclusion of a wide range of participants. Conclusion The evidence explored within this study demonstrates that the ethical concerns regarding patient participation in EoL care research are often unjustified. However, research studies in EoL care require careful

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

    PubMed Central

    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

  9. Improving Retention of Very Old Participants in Longitudinal Research: Experiences from the Newcastle 85+ Study

    PubMed Central

    Davies, Karen; Kingston, Andrew; Robinson, Louise; Hughes, Joan; Hunt, Judith M.; Barker, Sally A. H.; Edwards, June; Collerton, Joanna; Jagger, Carol; Kirkwood, Thomas B. L.

    2014-01-01

    Background People aged 85 and over are often excluded from research on the grounds of being difficult to recruit and problematic to retain. The Newcastle 85+ study successfully recruited a cohort of 854 85-year-olds to detailed health assessment at baseline and followed them up over 3 phases spanning 5 years. This paper describes the effectiveness of its retention strategies. Methods Primary retention strategies involved meticulous management of contact information and active maintenance of contact with participants between research visits and between phases of the study. For statistical analysis, data on post-inclusion attrition over the 3 follow-up phases was separated into ‘death’ and ‘withdrawal’ categories, with sub-categories ‘health’ and ‘non-health’ reasons created for ‘withdrawal’. Multinomial logistic regression was used to determine if particular socio-demographic and health characteristics were associated with post-inclusion attrition due to withdrawal at each of the 3 phase-to-phase transition points. Results For both sexes, at successive follow-up phases there was a decrease in attrition due to withdrawal and an increase due to death. Withdrawal was most prevalent between baseline and phase 2. Across the 5 years of the study total post-inclusion (post-baseline) attrition due to death accounted for a 40% (344/854) loss to cohort and total post-inclusion attrition due to withdraw a 19% (166/854) loss to cohort, with health reasons for withdrawal becoming more dominant over time. Adjusting for sex, parsimonious modelling showed only occupational class (National Statistics Socio-economic Classification) to be associated with withdrawal and only between baseline and phase 2 (routine/manual compared to managerial (OR 3.41; 95% CI [1.23 to 9.44]). Conclusion Following successful recruitment, we retained a high proportion of participants from a very old age group over 5 years of longitudinal research. No strong predictors of post

  10. MEASURING COERCION TO PARTICIPATE IN RESEARCH WITHIN A DOUBLY VULNERABLE POPULATION: INITIAL DEVELOPMENT OF THE COERCION ASSESSMENT SCALE

    PubMed Central

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

    2011-01-01

    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. PMID:20235867

  11. [Provides a guide to self-treatment as ethically acceptable compensation for having participated in a psychiatry research project].

    PubMed

    Bouchard, Stéphane; Michaud, Mélanie; Labonté-Chartrand, Geneviève

    2009-09-01

    Due to ethical constraints imposed by Research Ethics Board, it may be difficult to offer participants adequate compensations for their involvement in the study, or compensations that do not have a coercive impact on the participant's ability to refuse to participate. The current study aims at providing empirical data supporting an innovative solution: the provision of a self-help treatment manual. The samples consists of 33 adults (24 females, 9 males) aged between 20 and 59 and all suffering from pathological fear of heights. After participating in an experimental study, participants received a self-help manual to treat their acrophobia on their own. The severity of their claustrophobia was measured before and six months after participants were instructed on how to use the self-help book as a compensatory measure for their participation. Data also suggests that the participants were satisfied with the help provided in the self-treatment manual and that this is perceived in a positive way. To sum up, this study is not an outcome study for a new form of therapy; it simply offers researchers data supporting the use of an alternative compensatory measure. Indeed, using a self-help book represents an interesting solution. PMID:20425946

  12. Clinician and Staff Perspectives on Participating in Practice-based Research: A Report from the Wisconsin Research and Education Network (WREN)

    PubMed Central

    Hoffmann, Amanda E.; Leege, Erin K.; Plane, Mary Beth; Judge, Katherine A.; Irwin, Amy L.; Vidaver, Regina M.; Hahn, David L.

    2016-01-01

    Background The success of practice-based research (PBR) depends on the willingness of clinicians and staff to incorporate meaningful and useful research protocols into already demanding clinic schedules. The impact of participation on those who implement multiple projects and how to address the issues that arise during this complex process remain incompletely described. This article reports on a qualitative evaluation of the experiences of primary care clinicians and clinic staff who participated in multiple PBR projects with the Wisconsin Research and Education Network (WREN). Also included are their suggestions to researchers and clinicians for future collaborations. Methods For program evaluation purposes, WREN conducted four focus groups at its 2014 annual meeting. The main focus group question was: “How has participation in PBR impacted you and your clinic?” Twenty-seven project members from 13 clinics participated in 4 groups (physicians, nurses, managers, and other clinical staff). The two-hour sessions were recorded, transcribed, and analyzed by the authors to identify recurring themes. Results Five major focus group themes emerged: receptivity to research; outcomes as a result of participation; barriers to implementation; facilitators of success; and advice to researchers and colleagues. Focus group members find research valuable and enjoy participating in projects that are relevant to their practice, even though many barriers exist. They indicated that research participation produces clinical changes that they believe result in improved patient care. They offered ways to improve the research process, with particular emphasis on collaborative early planning, project development, and communication before, during, and after a project. Conclusions Clinics that participate in WREN projects remain willing to risk potential work constraints because of immediate or impending benefits to their clinical practice and/or patient population. Including a broader

  13. What Makes Small-Scale Farmers Participate in Financing Agricultural Research and Extension? Analysis of Three Case Studies from Benin

    ERIC Educational Resources Information Center

    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…

  14. The Framework for Participation: A Research Tool for Exploring the Relationship between Achievement and Inclusion in Schools

    ERIC Educational Resources Information Center

    Black-Hawkins, Kristine

    2010-01-01

    This article examines the Framework for Participation: a research tool established to support a recently completed study. The research was undertaken to explore the relationship between achievement and inclusion because headteachers and teachers in some schools continue to resist becoming more inclusive in their student intake on the grounds that…

  15. Research Participants Telling the Truth about Their Lives: The Ethics of Asking and Not Asking about Abuse

    ERIC Educational Resources Information Center

    Becker-Blease, Kathryn A.; Freyd, Jennifer J.

    2006-01-01

    Most discussions of the ethics of self-report research on abuse and interpersonal violence focus on the risks of asking participants about their experiences. An important element of the cost-benefit analysis--the costs of not asking about child abuse--has largely been ignored. Furthermore, little research has been conducted on the costs and…

  16. Evidence-Based Interventions in School Psychology: An Illustration of Task Force Coding Criteria Using Single-Participant Research Design.

    ERIC Educational Resources Information Center

    Shernoff, Elisa Steele; Kratochwill, Thomas R.; Stoiber, Karen Callan

    2002-01-01

    Illustrates the application of the Task Force on Evidence-Based Interventions in School Psychology coding criteria using a single-participant research design study. Concludes that this study possessed several important strengths, including a strong research design, identifiable intervention components, and strong intervention effects for several…

  17. Confidentiality, informed consent, and children's participation in research involving stored tissue samples: interviews with medical professionals from the Middle East.

    PubMed

    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. PMID:25981282

  18. Development of an Informational Web Site for Recruiting Research Participants: Process, Implementation, and Evaluation

    PubMed Central

    Hershberger, Patricia E.; Kavanaugh, Karen; Hamilton, Rebekah; Klock, Susan C.; Merry, Lisa; Olshansky, Ellen; Pierce, Penny F.

    2013-01-01

    Internet-based research is increasing, yet there is little known about recruitment approaches that target the Internet. Investigators have been slow to discuss how to plan, develop, and enhance recruitment using the Internet when well-concealed or disparate populations, sensitive topics, or qualitative methods are interspersed into the aims of the study. The twofold purpose of this paper is to 1.) highlight the major steps and strategies undertaken to develop and implement an innovative web site for recruiting high-genetic-risk couples who were considering preimplantation genetic diagnosis use, and 2.) present the recruitment results and lessons learned based on enrollment, self-evaluation, and descriptive data. The web site was developed using a five-step process designed by the investigators. A significant step in the process was determining the web site objectives, which were enacted through contextual and design decisions, and also by incorporating a brief video and study logo into the web site. The recruitment results indicate that of the 22 participant couples, ~82% were recruited via the Internet versus traditional recruitment approaches (i.e., clinics, newsletters) and that the majority of couples viewed the web site prior to enrolling in the study. In conclusion, developing a web site using the five-step process can facilitate recruitment. PMID:21709545

  19. How Well Do Randomized Controlled Trials Reflect Standard Care: A Comparison between Scientific Research Data and Standard Care Data in Patients with Intermittent Claudication undergoing Supervised Exercise Therapy

    PubMed Central

    Mesters, E. P. E.; Nijhuis-van der Sanden, M. W. G.; Teijink, J. A. W.; de Bie, R. A.

    2016-01-01

    Objective The aim of the present study was to assess the degree and impact of patient selection of patients with intermittent claudication undergoing supervised exercise therapy in Randomized Controlled Trials (RCTs) by describing commonly used exclusion criteria, and by comparing baseline characteristics and treatment response measured as improvement in maximum walking distance of patients included in RCTs and patients treated in standard care. Methods We compared data from RCTs with unselected standard care data. First, we systematically reviewed RCTs that investigated the effect of supervised exercise therapy in patients with intermittent claudication. For each of the RCTs, we extracted and categorized the eligibility criteria and their justifications. To assess whether people in RCTs (n = 1,440) differed from patients treated in daily practice (n = 3,513), in terms of demographics, comorbidity and walking capacity, we assessed between group-differences using t-tests. To assess differences in treatment response, we compared walking distances at three and six months between groups using t-tests. Differences of ≥15% were set as a marker for a clinically relevant difference. Results All 20 included RCTs excluded large segments of patients with intermittent claudication. One-third of the RCTs eligibility criteria were justified. Despite, the numerous eligibility criteria, we found that baseline characteristics were largely comparable. A statistically significant and (borderline) clinically relevant difference in treatment response after three and six months between trial participants and standard care patients was found. Improvements in maximum walking distance after three and six months were significantly and clinically less in trial participants. Conclusions The finding that baseline characteristics of patients included in RCTs and patients treated in standard care were comparable, may indicate that RCT eligibility criteria are used implicitly by professionals

  20. African Americans’ Responses to Genetic Explanations of Lung Cancer Disparities and Willingness to Participate in Clinical Genetics Research

    PubMed Central

    White, Della Brown; Koehly, Laura M.; Omogbehin, Adedamola; McBride, Colleen M.

    2012-01-01

    Purpose To assess whether reactions to genetic explanations for disparities in lung cancer incidence among family members of African American patients with lung cancer are associated with willingness to participate in clinical genetics research. Methods Data are reported for 67 self-identified African Americans ages 18 to 55 years who completed a telephone survey assessing reactions to explanations (i.e., genetics, toxin exposure, menthol cigarettes, race-related stress) for lung cancer disparities. Majority was female (70%), current smokers (57%), and patients’ biological relatives (70%). Results Family members’ rated the four explanations similarly, each as believable, fair and not too worrisome. Participants also indicated a high level of willingness to participate in genetics research (M= 4.1 ± 1.0; Scale 1–5). Endorsements of genetics explanations for disparities as believable and fair, and toxin exposure as believable were associated significantly with willingness to participate in genetics research. Conclusion These results suggest that strategies to encourage African Americans’ participation in genetics research would do well to inform potential participants of how their involvement might be used to better understand important environmental factors that affect health disparities. PMID:20613544

  1. US Department of Energy Teacher Research Associates Program: Profile and survey of 1990--1991 participants. [Contains a bibliography

    SciTech Connect

    Vivio, F.M. ); Stevenson, W.L. )

    1992-11-01

    Through its laboratories, facilities, and technology centers, the United States Department of Energy supports the development and training of scientists and engineers to meet the nation's future human resource needs in energy science and technology. This mission is accomplished, in part, through summer programs of active participation by precollege teachers in laboratory research. Since 1989, the Teacher Research Associates (TRAC) program has provided outstanding 7th- through 12th-grade science, mathematics, and technology teachers from across the nation the opportunity to participate in ongoing research projects at DOE laboratories. The TRAC program encourages participants, upon returning to their home institution, to share with their students and colleagues the experience and knowledge gained through their research endeavors.

  2. Formality of researcher's attire and number of terms given by participants for six gender labels.

    PubMed

    Green, R J

    2001-06-01

    The number of terms given by participants when experimenters were dressed in either professional or casual attire (ns = 20 and 18) was assessed. Participants were given 90 sec. to list descriptors for each of six gender-type labels. Analyses of variance yielded no significant mean differences for number of items listed. PMID:11508019

  3. Participation in Out-of-School Time Activities and Programs. Research Brief. Publication #2014-13

    ERIC Educational Resources Information Center

    Moore, Kristin Anderson; Murphey, David; Bandy, Tawana; Cooper, Mae

    2014-01-01

    Children and youth who participate in out-of-school-time (OST) programming are more likely than their non-participating peers to do well in school, get sufficient physical exercise, and avoid involvement in risky behaviors. However, there are concerns that there are inequities in access to OST programs, particularly for those from lower-income…

  4. Investigating the informed consent process, therapeutic misconception and motivations of Egyptian research participants: a qualitative pilot study.

    PubMed

    Mansour, H; Zaki, N; Abdelhai, R; Sabry, N; Silverman, H; El-Kamary, S S

    2015-03-01

    Few studies have explored the informed consent process among research participants in developing countries. This study aimed to evaluate the informed consent process, therapeutic misconception and motivation for participation among Egyptians participating in clinical trials. In a cross-sectional qualitative pilot study 103 participants in 10 clinical trials responded to a questionnaire. Over 90% agreed they had time to ask questions and received adequate information about the risks prior to consenting. All participants thought the research and the drug would improve their condition; only 46.1% were aware of receiving a non-approved experimental drug and 21.3% of being randomized. Reasons for participation included: better treatment (100%), to benefit society & advance science (85.4%), to receive free drugs (42.6%) and medical care (43.6%), to get hospitalized (15.8%) and to receive money or gifts (4.9%). Investigators need to emphasize the distinction between research and clinical care to address the high rate of therapeutic misconception. PMID:26074215

  5. The Effects of Demand Characteristics on Research Participant Behaviours in Non-Laboratory Settings: A Systematic Review

    PubMed Central

    McCambridge, Jim; de Bruin, Marijn; Witton, John

    2012-01-01

    Background The concept of demand characteristics, which involves research participants being aware of what the researcher is investigating, is well known and widely used within psychology, particularly in laboratory-based studies. Studies of this phenomenon may make a useful contribution to broader consideration of the effects of taking part in research on participant behaviour. This systematic review seeks to summarise data from studies of the effects of demand characteristics on participant behaviours in non-laboratory settings. Methodology/Principal Findings Electronic databases were searched to identify eligible studies. These had to be purposely designed to evaluate possible effects of demand characteristics on at least one behavioural outcome under the autonomous control of the participants and use longitudinal study designs. Only 7 studies were included, 6 providing observational data and 1 experimental study, with 5 studies involving examination of possible effects on health behaviours. Although studies provided some evidence of effects of demand characteristics on participant behaviour, heterogeneous operationalisation of the construct, the limited number of studies and poor quality of study designs made synthesis and interpretation of study findings challenging. Conclusions/Significance Although widely accepted as important in psychology, there have been few dedicated studies of the effects of demand characteristics on research participant behaviours outside laboratory settings. This body of literature does not currently contribute to the wider study of research participation effects. A systematic review of data from laboratory-based studies is needed, as are high-quality primary studies in non-laboratory settings. We suggest that unqualified use of the term demand characteristics should be abandoned. PMID:22723942

  6. Teachers participate in the School of Rock research experience on board the JOIDES Resolution

    NASA Astrophysics Data System (ADS)

    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.

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

    PubMed Central

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

    2015-01-01

    Background Community participation is a major principle of people centered health systems, with considerable research highlighting its intrinsic value and strategic importance. Existing reviews largely focus on the effectiveness of community participation with less attention to how community participation is supported in health systems intervention research. Objective To explore the extent, nature and quality of community participation in health systems intervention research in low- and middle-income countries. Methodology We searched for peer-reviewed, English language literature published between January 2000 and May 2012 through four electronic databases. Search terms combined the concepts of community, capability/participation, health systems research and low- and middle-income countries. The initial search yielded 3,092 articles, of which 260 articles with more than nominal community participation were identified and included. We further excluded 104 articles due to lower levels of community participation across the research cycle and poor description of the process of community participation. Out of the remaining 160 articles with rich community participation, we further examined 64 articles focused on service delivery and governance within health systems research. Results Most articles were led by authors in high income countries and many did not consistently list critical aspects of study quality. Articles were most likely to describe community participation in health promotion interventions (78%, 202/260), even though they were less participatory than other health systems areas. Community involvement in governance and supply chain management was less common (12%, 30/260 and 9%, 24/260 respectively), but more participatory. Articles cut across all health conditions and varied by scale and duration, with those that were implemented at national scale or over more than five years being mainstreamed by government. Most articles detailed improvements in service

  8. Towards a Creative Synthesis of Participant Observation and Participatory Research: Reflections on Doing Research "with" and "on" Young Bhutanese Refugees in Nepal

    ERIC Educational Resources Information Center

    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 participant…

  9. Learning from Recruitment Challenges: Barriers to Diagnosis, Treatment, and Research Participation for Latinos with Symptoms of Alzheimer's Disease

    PubMed Central

    Gelman, Caroline Rosenthal

    2014-01-01

    This paper discusses barriers to diagnosis and treatment of Alzheimer's disease (AD) and concomitantly to participation in AD research as elicited from 29 potential Latino participants who ultimately did not enroll in a study evaluating a caregiver intervention. Nearly half of all individuals contacting the researcher about the intervention study failed to meet criteria stipulating an existing AD diagnosis. Barriers to obtaining a diagnosis include lack of knowledge about AD, perceptions of memory loss as normal aging, and structural barriers to accessing care. A quarter of caregivers contacting the researcher felt too overwhelmed to participate. Many of these barriers have been previously identified as challenges to treatment, suggesting this is not just a methodological research problem but inextricably tied to larger issues of AD knowledge and service accessibility. Engaging Latino communities equitably in the assessment of needs and the process of addressing them, thus ensuring the validity and applicability of the research and findings, is important both for increasing this group's participation in relevant studies and for addressing existing health disparities. PMID:20029704

  10. Using a Virtual Research Environment to Support New Models of Collaborative and Participative Research in Scottish Education

    ERIC Educational Resources Information Center

    Wilson, Alastair; Rimpilainen, Sanna; Skinner, Don; Cassidy, Claire; Christie, Donald; Coutts, Norman; Sinclair, Christine

    2007-01-01

    Drawing on research supported within the Scottish "Applied Educational Research Scheme" this paper explores the use of the Virtual Research Environment (VRE) in developing "communities of enquiry" in Scottish education and research. It focuses on the role of VREs in influencing collaborative working and educational research. The paper uses three…

  11. High School Student Participation in Scientific Research Apprenticeships: Variation in and Relationships Among Student Experiences and Outcomes

    NASA Astrophysics Data System (ADS)

    Burgin, Stephen R.; Sadler, Troy D.; Koroly, Mary Jo

    2012-06-01

    Research apprenticeships for secondary students provide authentic contexts for learning science in which students engage in scientific investigations with practicing scientists in working laboratory groups. Student experiences in these research apprenticeships vary depending on the individual nature of the laboratory in which students have been placed. This study explores potential relationships among student experiences in apprenticeship contexts and desired student outcomes (e.g. science content knowledge, understandings of nature of science, and aspirations for science oriented career plans). The following two research questions guided the study: How do participant experiences in and outcomes resulting from an authentic research program for high school students vary? How does variation in participant experiences in an authentic research program relate to participant outcomes? Primary data sources were student and mentor interviews in addition to student generated concept maps. Results indicated that the greatest variance in student experiences existed in the categories of collaboration, epistemic involvement, and understandings of the significance of research results. The greatest variation in desired student outcomes was observed in student understandings of nature of science and in students' future science plans. Results suggested that collaboration and interest in the project were experience aspects most likely to be related to desired outcomes. Implications for the design of research apprenticeships for secondary students are discussed.

  12. The California-Arizona Minority Partnership for Astronomy Research and Education (CAMPARE): A New Model for Promoting Minority Participation in Astronomy Research and Education

    NASA Astrophysics Data System (ADS)

    Rudolph, Alexander L.; Impey, C. D.; Bieging, J. H.; Phillips, C. B.; Tieu, J.; Prather, E. E.; Povich, M. S.

    2013-01-01

    The California-Arizona Minority Partnership for Astronomy Research and Education (CAMPARE) program represents a new and innovative kind of research program for undergraduates: one that can effectively carry out the goal of recruiting qualified minority and female students to participate in Astronomy and Planetary Science research opportunities, while mentoring them in a way to maximize the chance that these students will persist in obtaining their undergraduate degrees in STEM fields, and potentially go on to obtain their PhDs or pursue careers in those fields. The members of CAMPARE comprise a network of comprehensive universities and community colleges in Southern California and Arizona (most of which are minority serving institutions), and four major research institutions (University of Arizona Steward Observatory, the SETI Institute, and JPL/Caltech). Most undergraduate research programs focus on a single research institution. By having multiple institutions, we significantly broaden the opportunities for students, both in terms of breadth of research topics and geographical location. In its first three years, the CAMPARE program has had 20 undergraduates from two CSU campuses, both Hispanic Serving Institutions, take part in research and educational activities at four research institutions, the University of Arizona Steward Observatory, the SETI Institute, and JPL/Caltech. Of the 20 participants, 9 are women and 11 are men, a much more even split than is typical in Astronomy research programs; 10 are Hispanic, 2 are African American, and 1 is part Native American, including 2 female Hispanic and 2 female African-American participants, an exceptionally high participation rate (65%) for students from underrepresented minority groups. Of the five participants who have graduated since the program began, two are in graduate programs in Physics or Astronomy, two are pursuing a K-12 teaching credential, and one has enlisted in the Nuclear Propulsion Officer Candidate

  13. NASA Langley Research Center Systems Analysis & Concepts Directorate Participation in the Exploration Systems Architecture Study

    NASA Technical Reports Server (NTRS)

    Keyes, Jennifer; Troutman, Patrick A.; Saucillo, Rudolph; Cirillo, William M.; Cavanaugh, Steve; Stromgren, Chel

    2006-01-01

    The NASA Langley Research Center (LaRC) Systems Analysis & Concepts Directorate (SACD) began studying human exploration missions beyond low Earth orbit (LEO) in the year 1999. This included participation in NASA s Decadal Planning Team (DPT), the NASA Exploration Team (NExT), Space Architect studies and Revolutionary Aerospace Systems Concepts (RASC) architecture studies that were used in formulating the new Vision for Space Exploration. In May of 2005, NASA initiated the Exploration Systems Architecture Study (ESAS). The primary outputs of the ESAS activity were concepts and functional requirements for the Crewed Exploration Vehicle (CEV), its supporting launch vehicle infrastructure and identification of supporting technology requirements and investments. An exploration systems analysis capability has evolved to support these functions in the past and continues to evolve to support anticipated future needs. SACD had significant roles in supporting the ESAS study team. SACD personnel performed the liaison function between the ESAS team and the Shuttle/Station Configuration Options Team (S/SCOT), an agency-wide team charged with using the Space Shuttle to complete the International Space Station (ISS) by the end of Fiscal Year (FY) 2010. The most significant of the identified issues involved the ability of the Space Shuttle system to achieve the desired number of flights in the proposed time frame. SACD with support from the Kennedy Space Center performed analysis showing that, without significant investments in improving the shuttle processing flow, that there was almost no possibility of completing the 28-flight sequence by the end of 2010. SACD performed numerous Lunar Surface Access Module (LSAM) trades to define top level element requirements and establish architecture propellant needs. Configuration trades were conducted to determine the impact of varying degrees of segmentation of the living capabilities of the combined descent stage, ascent stage, and other

  14. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.

    PubMed

    George, Sheba; Duran, Nelida; Norris, Keith

    2014-02-01

    To assess the experienced or perceived barriers and facilitators to health research participation for major US racial/ethnic minority populations, we conducted a systematic review of qualitative and quantitative studies from a search on PubMed and Web of Science from January 2000 to December 2011. With 44 articles included in the review, we found distinct and shared barriers and facilitators. Despite different expressions of mistrust, all groups represented in these studies were willing to participate for altruistic reasons embedded in cultural and community priorities. Greater comparative understanding of barriers and facilitators to racial/ethnic minorities' research participation can improve population-specific recruitment and retention strategies and could better inform future large-scale prospective quantitative and in-depth ethnographic studies. PMID:24328648

  15. A Systematic Review of Barriers and Facilitators to Minority Research Participation Among African Americans, Latinos, Asian Americans, and Pacific Islanders

    PubMed Central

    Duran, Nelida; Norris, Keith

    2014-01-01

    To assess the experienced or perceived barriers and facilitators to health research participation for major US racial/ethnic minority populations, we conducted a systematic review of qualitative and quantitative studies from a search on PubMed and Web of Science from January 2000 to December 2011. With 44 articles included in the review, we found distinct and shared barriers and facilitators. Despite different expressions of mistrust, all groups represented in these studies were willing to participate for altruistic reasons embedded in cultural and community priorities. Greater comparative understanding of barriers and facilitators to racial/ethnic minorities’ research participation can improve population-specific recruitment and retention strategies and could better inform future large-scale prospective quantitative and in-depth ethnographic studies. PMID:24328648

  16. The Effects on Teachers of Participation in an Interactive Research and Development Project.

    ERIC Educational Resources Information Center

    Huling, Leslie L.

    A professional development program was designed and implemented to help teachers gain new research knowledge and skills. An interactive research strategy was used to bring teachers, researchers, and staff development personnel together as a team to examine classroom problems and to plan a means to disseminate research findings. This process…

  17. Multidisciplinary "Boot Camp" Training in Cellular Bioengineering to Accelerate Research Immersion for REU Participants

    ERIC Educational Resources Information Center

    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…

  18. Using Facebook to Supplement Participant Pools for Class Research Projects: Should We Like It?

    ERIC Educational Resources Information Center

    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…

  19. Learning How to Ask: Reflections on Engaging American Indian Research Participants

    ERIC Educational Resources Information Center

    Hodge, Felicia Schanche; Maliski, Sally; Cadogan, Mary; Itty, Tracy L.; Cardoza, Briana

    2010-01-01

    Communication patterns and explanatory processes are culturally specific and not often compatible with research data-gathering approaches. Particularly in areas of medical research and health and health-care behavioral research, indigenous educators and researchers note their frustration when Western paradigms, academic traditions, and medical…

  20. 34 CFR 350.65 - What level of participation is required of trainees in an Advanced Rehabilitation Research...

    Code of Federal Regulations, 2014 CFR

    2014-07-01

    ... 34 Education 2 2014-07-01 2013-07-01 true What level of participation is required of trainees in an Advanced Rehabilitation Research Training Project? 350.65 Section 350.65 Education Regulations of the Offices of the Department of Education (Continued) OFFICE OF SPECIAL EDUCATION AND REHABILITATIVE SERVICES, DEPARTMENT OF EDUCATION DISABILITY...

  1. Elementary Science Specialists: A Pilot Study of Current Models and a Call for Participation in the Research

    ERIC Educational Resources Information Center

    Schwartz, Renee S.; Gess-Newsome, Julie

    2008-01-01

    The authors report an empirical pilot study of current models of elementary science instruction that utilize science specialists, and make a call for the participation of schools and districts that use a specialist model to assist in collecting the descriptive data needed to create the foundation for future research on the use and impact of…

  2. Reasons for and Attitudes toward Follow-Up Research Participation among Adolescents Enrolled in an Outpatient Substance Abuse Treatment Program

    ERIC Educational Resources Information Center

    Garner, Bryan R.; Passetti, Lora L.; Orndoff, Matt G.; Godley, Susan H.

    2007-01-01

    Maintaining study cohorts over time is crucial to the success of treatment outcome research studies. This paper examines reasons why adolescents with substance use problems continued to participate in follow-up interviews. The sample consisted of 145 adolescents between the ages of 12 and 18, who completed an outcome study following out-patient…

  3. Voices in the Park: Researching the Participation of Young Children in Outdoor Play in Early Years Settings

    ERIC Educational Resources Information Center

    Waller, Tim

    2014-01-01

    This article critically reflects on the participation of young children aged 3-4 years in an ongoing outdoor learning project started in 2004. The aims of the research are to investigate children's dispositions within the outdoor environment, to elicit children's perspectives of their outdoor experiences and to investigate the…

  4. Popular Participation and Farming Systems Research and Extension: Examining the Central Visayas Regional Project 1 in Bohol, Philippines.

    ERIC Educational Resources Information Center

    Hubchen, Jonathan M.

    The Central Visayas Regional Project (CVRP) 1 aims to use community based participation to address environmental dilemmas, particularly watershed management, which are exacerbated by harmful local production practices. The CVRP employs many characteristics of Farming Systems Research and Extension (FSR&E) which provides technical training in…

  5. Policy and Systems Issues Limiting the Participation of Historically Black Colleges and Universities in the Federal Disability Research Agenda

    ERIC Educational Resources Information Center

    Moore, Corey L.; Johnson, Jean E.; Manyibe, Edward O.; Washington, Andre L.; Uchegbu, Nkechi E.; Cross, Kenyotta Eugene; Hollis-Staten, Bridget; Turner-Whittaker, Tyra; Edwards, Yolanda

    2012-01-01

    This study reports on an investigation of barriers that prevent Historically Black Colleges and Universities (HBCUs) from fully participating in the federal disability and rehabilitation research and development (R&D) agenda. The Delphi technique was used to examine panelists' perceptions on the importance of contextual R&D barriers ensuing from…

  6. Meaning-Making through Psychological Autopsy Interviews: The Value of Participating in Qualitative Research for Those Bereaved by Suicide

    ERIC Educational Resources Information Center

    Dyregrov, Kari Madeleine; Dieserud, Gudrun; Hjelmeland, Heidi Marie; Straiton, Melanie; Rasmussen, Mette Lyberg; Knizek, Birthe Loa; Leenaars, Antoon Adrian

    2011-01-01

    Too often ethical boards delay or stop research projects with vulnerable populations, influenced by presumed rather than empirically documented vulnerability. The article investigates how participation is experienced by those bereaved by suicide. Experiences are divided into 3 groups: (a) overall positive (62%), (b) unproblematic (10%), and (c)…

  7. 22 CFR 63.7 - Grants to United States participants to consult, lecture, teach, engage in research, demonstrate...

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... 22 Foreign Relations 1 2013-04-01 2013-04-01 false Grants to United States participants to consult, lecture, teach, engage in research, demonstrate special skills, or engage in specialized programs. 63.7 Section 63.7 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND...

  8. 22 CFR 63.7 - Grants to United States participants to consult, lecture, teach, engage in research, demonstrate...

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... 22 Foreign Relations 1 2012-04-01 2012-04-01 false Grants to United States participants to consult, lecture, teach, engage in research, demonstrate special skills, or engage in specialized programs. 63.7 Section 63.7 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND...

  9. 22 CFR 63.7 - Grants to United States participants to consult, lecture, teach, engage in research, demonstrate...

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... 22 Foreign Relations 1 2014-04-01 2014-04-01 false Grants to United States participants to consult, lecture, teach, engage in research, demonstrate special skills, or engage in specialized programs. 63.7 Section 63.7 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY AND EXCHANGES PAYMENTS TO AND...

  10. A Mechanism for Increasing Participation by Minorities and Women in Advanced Study and Research in Education. Final Report.

    ERIC Educational Resources Information Center

    Alejandro, Franco; Marenco, Eduardo, Jr.

    The Mexican American Legal Defense and Educational Fund's program to increase participation of minority and women junior faculty members in advanced study and research in education resulted in numerous accomplishments by the program's three scholars-in-residence. Dr. David Jess Leon (1979-1980) produced a major publication, "The Struggle for…

  11. Reactions to "Ethical Challenges and Complexities of Including People with Intellectual Disability as Participants in Research" by Dr Teresa Iacono

    ERIC Educational Resources Information Center

    Aman, Michael G.; Handen, Benjamin

    2006-01-01

    The authors' reaction to Dr Teresa Iacono's article "Ethical challenges and complexities of including people with intellectual disability as participants in research" is presented. Among other things, they find that Dr Iacono has done an outstanding job of describing creative solutions for obtaining appropriate informed consent from people with…

  12. Participation in medical research as a resource-seeking strategy in socio-economically vulnerable communities: call for research and action.

    PubMed

    Ravinetto, Raffaella M; Afolabi, Muhammed O; Okebe, Joseph; Van Nuil, Jennifer Ilo; Lutumba, Pascal; Mavoko, Hypolite Muhindo; Nahum, Alain; Tinto, Halidou; Addissie, Adamu; D'Alessandro, Umberto; Grietens, Koen Peeters

    2015-01-01

    The freedom to consent to participate in medical research is a complex subject, particularly in socio-economically vulnerable communities, where numerous factors may limit the efficacy of the informed consent process. Informal consultation among members of the Switching the Poles Clinical Research Network coming from various sub-Saharan African countries, that is Burkina Faso, The Gambia, Rwanda, Ethiopia, the Democratic Republic of Congo (DRC) and Benin, seems to support the hypothesis that in socio-economical vulnerable communities with inadequate access to health care, the decision to participate in research is often taken irrespectively of the contents of the informed consent interview, and it is largely driven by the opportunity to access free or better quality care and other indirect benefits. Populations' vulnerability due to poverty and/or social exclusion should obviously not lead to exclusion from medical research, which is most often crucially needed to address their health problems. Nonetheless, to reduce the possibility of exploitation, there is the need to further investigate the complex links between socio-economical vulnerability, access to health care and individual freedom to decide on participation in medical research. This needs bringing together clinical researchers, social scientists and bioethicists in transdisciplinary collaborative research efforts that require the collective input from researchers, research sponsors and funders. PMID:25302444

  13. 'Relief of oppression': An organizing principle for researchers' obligations to participants in observational studies in the developing world

    PubMed Central

    2010-01-01

    Background A central question in the debate about exploitation in international research is whether investigators and sponsors from high-income countries (HIC) have obligations to address background conditions of injustice in the communities in which they conduct their research, beyond the healthcare and other research-related needs of participants, to aspects of their basic life circumstances. Discussion In this paper, we describe the Majengo sexually transmitted disease (STD) Cohort study, a long-term prospective, observational cohort of sex workers in Nairobi, Kenya. Despite important scientific contributions and a wide range of benefits to the women of the cohort, most of the women have remained in the sex trade during their long-standing participation in the cohort, prompting allegations of exploitation. The Majengo STD cohort case extends the debate about justice in international research ethics beyond clinical trials into long-term observational research. We sketch the basic features of a new approach to understanding and operationalizing obligations of observational researchers, which we call 'relief of oppression'. 'Relief of oppression' is an organizing principle, analogous to the principle of harm reduction that is now widely applied in public health practice. Relief of oppression aims to help observational researchers working in conditions of injustice and deprivation to clarify their ethical obligations to participants. It aims to bridge the gap between a narrow, transaction-oriented account of avoiding exploitation and a broad account emphasizing obligations of reparation for historic injustices. We propose that relief of oppression might focus researchers' consideration of benefits on those that have some relevance to background conditions of injustice, and so elevate the priority of these benefits, in relation to others that might be considered and negotiated with participants, according to the degree to which the participating communities are

  14. Characterizing Researchers by Strategies Used for Retaining Minority Participants: Results of a National Survey

    PubMed Central

    Butler, James; Quinn, Sandra C.; Fryer, Craig S.; Garza, Mary A.; Kim, Kevin H.; Thomas, Stephen B.

    2013-01-01

    Limited attention has been given to the optimal strategies for retaining racial and ethnic minorities within studies and during the follow-up period. High attrition limits the interpretation of results and reduces the ability to translate findings into successful interventions. This study examined the retention strategies used by researchers when retaining minorities in research studies. From May to August 2010, we conducted an online survey with researchers (principal investigators, research staff, and IRB members) and examined their use of seven commonly used retention strategies. The number and type of retention strategies used, how these strategies differ by researcher type, and other characteristics (e.g., funding) were explored. We identified three clusters of researchers: comprehensive retention strategy researchers - utilized the greatest number of retention strategies; moderate retention strategy researchers - utilized an average number of retention strategies; and limited retention strategy researchers - utilized the least number of retention strategies. The comprehensive and moderate retention strategy researchers were more likely than the limited retention strategy researchers to conduct health outcomes research, work with a community advisory board, hire minority staff, use steps at a higher rate to overcome retention barriers, develop new partnerships with the minority community, modify study materials for the minority population, and allow staff to work flexible schedules. This study is a novel effort to characterize researchers, without implying a value judgment, according to their use of specific retention strategies. It provides critical information for conducting future research to determine the effectiveness of using a combination of retention strategies. PMID:23764697

  15. Characterizing researchers by strategies used for retaining minority participants: results of a national survey.

    PubMed

    Butler, James; Quinn, Sandra C; Fryer, Craig S; Garza, Mary A; Kim, Kevin H; Thomas, Stephen B

    2013-09-01

    Limited attention has been given to the optimal strategies for retaining racial and ethnic minorities within studies and during the follow-up period. High attrition limits the interpretation of results and reduces the ability to translate findings into successful interventions. This study examined the retention strategies used by researchers when retaining minorities in research studies. From May to August 2010, we conducted an online survey with researchers (principal investigators, research staff, and IRB members) and examined their use of seven commonly used retention strategies. The number and type of retention strategies used, how these strategies differ by researcher type, and other characteristics (e.g., funding) were explored. We identified three clusters of researchers: comprehensive retention strategy researchers - utilized the greatest number of retention strategies; moderate retention strategy researchers - utilized an average number of retention strategies; and limited retention strategy researchers - utilized the least number of retention strategies. The comprehensive and moderate retention strategy researchers were more likely than the limited retention strategy researchers to conduct health outcomes research, work with a community advisory board, hire minority staff, use steps at a higher rate to overcome retention barriers, develop new partnerships with the minority community, modify study materials for the minority population, and allow staff to work flexible schedules. This study is a novel effort to characterize researchers, without implying a value judgment, according to their use of specific retention strategies. It provides critical information for conducting future research to determine the effectiveness of using a combination of retention strategies. PMID:23764697

  16. A Diversified Recruitment Approach Incorporating Social Media Leads to Research Participation Among Young Adult-Aged Female Cancer Survivors.

    PubMed

    Gorman, Jessica R; Roberts, Samantha C; Dominick, Sally A; Malcarne, Vanessa L; Dietz, Andrew C; Su, H Irene

    2014-06-01

    Purpose: Cancer survivors in their adolescent and young adult (AYA) years are an understudied population, possibly in part because of the high effort required to recruit them into research studies. The aim of this paper is to describe the specific recruitment strategies used in four studies recruiting AYA-aged female cancer survivors and to identify the highest yielding approaches. We also discuss challenges and recommendations. Methods: We recruited AYA-aged female cancer survivors for two studies conducted locally and two conducted nationally. Recruitment strategies included outreach and referral via: healthcare providers and clinics; social media and the internet; community and word of mouth; and a national fertility information hotline. We calculated the yield of each recruitment approach for the local and national studies by comparing the number that participated to the number of potential participants. Results: We recruited a total of 534 participants into four research studies. Seventy-one percent were diagnosed as young adults and 61% were within 3 years of their cancer diagnosis. The highest-yielding local recruitment strategy was healthcare provider and clinic referral. Nationally, social media and internet outreach yielded the highest rate of participation. Overall, internet-based recruitment resulted in the highest number and yield of participants. Conclusion: Our results suggest that outreach through social media and the internet are effective approaches to recruiting AYA-aged female cancer survivors. Forging collaborative relationships with survivor advocacy groups' members and healthcare providers also proved beneficial. PMID:24940529

  17. Improving Research Participant Ethics: The Utility of an Online Educational Module

    ERIC Educational Resources Information Center

    Barber, Larissa K.; Bailey, Sarah F.; Bagsby, Patricia G.

    2015-01-01

    The undergraduate psychology curriculum often does not address guidelines for acceptable participant behavior. This two-part study tested the efficacy of a recently developed online learning module on ethical perceptions, knowledge, and behavior. In the preliminary quasi-experiment, students who viewed the module did not have higher…

  18. Researching Returns Emanating from Participation in Adult Education Courses: A Quantitative Approach

    ERIC Educational Resources Information Center

    Panitsides, Eugenia

    2013-01-01

    Throughout contemporary literature, participants in adult education courses have been reported to acquire knowledge and skills, develop understanding and enhance self-confidence, parameters that induce changes in their personal lives, while enabling them to play a more active role in their family, community or work. In this vein, a large-scale,…

  19. Adult Literacy and Numeracy: Meeting the Needs of Participants. SCRE Research Report Series.

    ERIC Educational Resources Information Center

    Lowden, Kevin; And Others

    A project investigated the extent to which the current adult basic education (ABE) provision was meeting the needs of participants in Northern Ireland. Interviews were conducted with key individuals from 22 agencies providing adult literacy and numeracy support, selected tutors and managers of ABE (n=62), and 55 ABE students. Students had a…

  20. Pedagogies of Participation in Higher Education: A Case for Research-Based Learning

    ERIC Educational Resources Information Center

    Lambert, Cath

    2009-01-01

    This article addresses the question of the role and function of contemporary higher education in western industrialised nations through a focus on the participation of undergraduate students. The discussion examines some of the dramatic changes brought about by neo-liberal educational policy, in particular the hierarchical division of teaching and…

  1. Expanding the Participation of Developing Country Scientists in International Climate Change Research

    SciTech Connect

    Runci, Paul J.

    2007-12-01

    This article explores key barriers such as funding and capacity limitations, to the broader and deeper participation of scientists from developing countries in international scientific activities addressing climate change. it provides a description of major barriers and calls attention to the need for a systematic examination of the problem.

  2. Research Knowledge among the Participants in the Treatment for Adolescents with Depression Study (TADS)

    ERIC Educational Resources Information Center

    Vitiello, Benedetto; Kratochvil, Christopher J.; Silva, Susan; Curry, John; Reinecke, Mark; Pathak, Sanjeev; Waslick, Bruce; Hughes, Carroll W.; Prentice, Ernest D.; May, Diane E.; March, John S.

    2007-01-01

    A study examined the extent to which parents and adolescents participating in the Treatment for Adolescents With Depression Study (TADS) understood the study. The results concluded that most were well-informed, and also parents were overall better informed than adolescents.

  3. Active Citizenship and the Secondary School Experience: Community Participation Rates of Australian Youth. Research Report Number.

    ERIC Educational Resources Information Center

    Brown, Kevin; Lipsig-Mumme, Carla; Zajdow, Grazyna

    Volunteering is often seen as an essential element in active citizenship and community participation, and existing literature suggests that those who volunteer young are more likely to volunteer through later stages of life. Analysis of Longitudinal Surveys of Australian Youth (LSAY), which identified factors that contribute to volunteering for…

  4. Obtaining Consent from Young People with Autism to Participate in Research

    ERIC Educational Resources Information Center

    Loyd, Daisy

    2013-01-01

    Young people with autism were involved in a study examining the participation of young people with autism in drama education. This study considers the approaches devised to obtain consent from ten young people with autism who communicated in different ways. The process of obtaining consent and monitoring assent is outlined and evaluated. The…

  5. Navajo Participation in Labor Unions. Lake Powell Research Project Bulletin Number 15, December 1975.

    ERIC Educational Resources Information Center

    Robbins, Lynn A.

    Navajo participation in labor unions and Navajo labor relations have undergone rapid and fundamental changes since the development of industry around Lake Powell and on Black Mesa. Early attempts to unionize Navajo workers met with stiff resistance from employees and the Navajo Tribal Council. Union entry into the Navajo Reservation was viewed as…

  6. Qualitative Research and Consumer Policy: Focus Group Discussions as a Form of Consumer Participation

    ERIC Educational Resources Information Center

    Heiskanen, Eva; Jarvela, Katja; Pulliainen, Annukka; Saastamoinen, Mika; Timonen, Paivi

    2008-01-01

    This paper describes our ongoing attempts to involve consumers in innovation and technology policy by means of a national Consumer Panel, using focus group discussions as the primary method of consumer participation. We evaluate our experiences of the usefulness of focus group discussions in this context by considering two examples of studies…

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

    PubMed

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

    2015-07-01

    Efforts to internalize data sharing in research practice have been driven largely by developing international norms that have not incorporated opinions from researchers in low- and middle-income countries. We sought to identify the issues around ethical data sharing in the context of research involving women and children in urban India. We interviewed researchers, managers, and research participants associated with a Mumbai non-governmental organization, as well as researchers from other organizations and members of ethics committees. We conducted 22 individual semi-structured interviews and involved 44 research participants in focus group discussions. We used framework analysis to examine ideas about data and data sharing in general; its potential benefits or harms, barriers, obligations, and governance; and the requirements for consent. Both researchers and participants were generally in favor of data sharing, although limited experience amplified their reservations. We identified three themes: concerns that the work of data producers may not receive appropriate acknowledgment, skepticism about the process of sharing, and the fact that the terrain of data sharing was essentially uncharted and confusing. To increase data sharing in India, we need to provide guidelines, protocols, and examples of good practice in terms of consent, data preparation, screening of applications, and what individuals and organizations can expect in terms of validation, acknowledgment, and authorship. PMID:26297746

  8. Perceptions and Experiences of Research Participants on Gender-Based Violence Community Based Survey: Implications for Ethical Guidelines

    PubMed Central

    Sikweyiya, Yandisa; Jewkes, Rachel

    2012-01-01

    Objective To explore how survey respondents perceived their experiences and the impact of participating in a survey, and to assess adverse consequences resulting from participation. Design Qualitative study involving purposefully selected participants who had participated in a household-based survey. Methods This qualitative study was nested within a survey that investigated the prevalence of gender-based violence perpetration and victimization with adult men and women in South Africa. 13 male- and 10 female-in-depth interviews were conducted with survey respondents. Results A majority of informants, without gender-differences, perceived the survey interview as a rare opportunity to share their adverse and or personal experiences in a 'safe' space. Gender-differences were noted in reporting perceptions of risks involved with survey participation. Some women remained fearful after completing the survey, that should breach of confidentiality or full survey content disclosure occur, they may be victimized by partners as a punishment for survey participation without men's approval. A number of informants generally discussed their survey participation with others. However, among women with interpersonal violence history or currently in abusive relationships, full survey content disclosure was done with fear; the partner responses were negative, and few women reported receiving threatening remarks but none reported being assaulted. In contrast no man reported adverse reaction by others. Informants with major life adversities reported that the survey had made them to relive the experiences causing them sadness and pain at the time. No informant perceived the survey as emotionally harmful or needed professional support because of survey questions. Rather the vast majority perceived benefit from survey participation. Conclusion Whilst no informant felt answering the survey questions had caused them emotional or physical harm, some were distressed and anxious, albeit

  9. Student Participation in Health Professions Education Research: In Pursuit of the Aristotelian Mean

    ERIC Educational Resources Information Center

    Chen, Ruth P.

    2011-01-01

    In research ethics reviews, traditional approaches of research ethics boards (REBs) balance the risks with the potential for benefit of proposed studies, and this review process has been similar for health professions education research (HPER) as it has been for clinically based studies. Health professions students are the primary population from…

  10. Multi-Level Research on Youth Participation in the Haitian Reconstruction

    ERIC Educational Resources Information Center

    Pluim, Gary W. J.

    2012-01-01

    Research in comparative and international education routinely encounters exceptional research conditions. In this article, the author explores the particular issues he faced in his research on multi-level youth programs of the Haitian reconstruction. Through a vertical analysis of internationally sponsored programs, this study required special…

  11. "My parents decide if I can. I decide if I want to." Children's views on participation in medical research.

    PubMed

    Swartling, Ulrica; Hansson, Mats G; Ludvigsson, Johnny; Nordgren, Anders

    2011-12-01

    The participation of children in medical research raises many ethical issues, in particular regarding assent. However, little is known about children's own views on participation. This study presents results from interviews with children 10-12 years old with and without experience in a large-scale longitudinal screening study. We identified five themes: (1) knowledge about research, (2) a sense of altruism, (3) shared decision-making and right to dissent, (4) notions of integrity, privacy, and access, and (5) understanding of disease risk and personal responsibilities. We conclude that the children feel positive towards medical research, and want to take an active part in decisions and have their integrity respected. However, the study also indicates that children who had participated in longitudinal screening had a limited understanding, suggesting the vital importance of providing information appropriate to their age and maturity. This information should be provided out of respect for the children as persons, but also to promote their willingness to continue participating in longitudinal studies. PMID:22228061

  12. Undergraduate Research Participation at the University of California, Berkeley. Research & Occasional Paper Series: CSHE.17.08

    ERIC Educational Resources Information Center

    Berkes, Elizabeth

    2008-01-01

    Although the University of California, Berkeley has increased efforts to involve undergraduates in scientific research, little data exists regarding the number of undergraduate researchers. The University of California Undergraduate Experience Survey (UCUES) presents an opportunity to investigate the extent of undergraduate research involvement at…

  13. Enhancing Junior Faculty Research Productivity through Multiinstitution Collaboration: Participants' Impressions of the School Psychology Research Collaboration Conference

    ERIC Educational Resources Information Center

    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…

  14. Consent Challenges for Participation of Young Men Who Have Sex With Men (YMSM) in HIV Prevention Research in Thailand

    PubMed Central

    Guadamuz, Thomas E.; Goldsamt, Lloyd A.; Boonmongkon, Pimpawun

    2014-01-01

    Young men who have sex with men (YMSM) under 18 years are often excluded from HIV prevention research in Thailand due to cultural attitudes toward youth sexuality, social stigma, and difficulties obtaining guardian permission. Culturally sensitive focus group discussions conducted with parents and YMSM in Bangkok, Thailand identified barriers and facilitators related to minors’ participation in HIV prevention research. Although gender and class differences emerged, mothers and fathers were generally accepting of research to reduce HIV risk, but not in favor of waiver. Youth’s positive attitude toward parental permission was tempered by concerns about harms posed by disclosing same-sex attraction through permission forms. PMID:25750498

  15. Recruiting African American smokers into intervention research: Relationships between recruitment strategies and participant characteristics.

    PubMed

    Webb, Monica S; Seigers, Danielle; Wood, Elizabeth A

    2009-02-01

    The purposes of this study were to (a) to describe an 8-month recruitment campaign to enroll African American smokers (N = 249) into a randomized controlled trial and (b) examine characteristics of participants recruited through proactive (face-to-face), reactive (television, radio, or newspaper ads inviting participants), and combination (both reactive and proactive) approaches. Reactive recruitment was most successful (43%), followed by proactive (31%), and combination (26%) recruitment. Compared to proactive recruitment, reactive recruitment was associated with lower nicotine dependence, and greater readiness to quit, processes of change engagement, and acculturation. Combination recruitment was associated with lower nicotine dependence and greater readiness to quit. The differences according to recruitment strategy could be used to tailor recruitment strategies for African American smokers. PMID:18767129

  16. Undergraduate research studies program at participating institutions of the HBCU Fossil Energy Consortium

    SciTech Connect

    Bhatia, S.C.; Cardelino, B.H.; Hall, J.H. Jr.; Mitchell, M.B.; Stelson, A.W.

    1990-01-31

    This report consists of five quarterly progress reports from four participating universities. The titles of the projects are: Competition of NO and SO{sub 2} for OH generated within electrical aerosol analyzers; Dispersed iron catalysts for coal gasification; Catalytic gasification of coal chars by potassium sulfate and ferrous sulfate mixtures; Removal of certain toxic heavy metal ions in coal conversion process wastewaters; and Study of coal liquefaction catalysts. All reports have been indexed separately for inclusion on the data base. (CK)

  17. HIV Vaccine-Induced Sero-Reactivity: A Challenge for Trial Participants, Researchers, and Physicians

    PubMed Central

    Voronin, Yegor; Zinszner, Helene; Karg, Carissa; Brooks, Katie; Coombs, Robert; Hural, John; Holt, Renee; Fast, Pat; Allen, Mary; Allen, Mary; Busch, Michael; Fast, Pat; Fruth, Ulrich; Golding, Hana; Khurana, Surender; Mulenga, Joseph; Peel, Sheila; Schito, Marco; Voronin, Yegor; Barnabas, Nomampondo; Bentsen, Christopher; Graham, Barney; Gray, Glenda; Levin, Andrew; McCluskey, Margaret; O'Connell, Robert; Snow, Bill; Ware, Mark

    2015-01-01

    Antibody-inducing vaccines are a major focus in the preventive HIV vaccine field. Because the most common tests for HIV infection rely on detecting antibodies to HIV, they may also detect antibodies induced by a candidate HIV vaccine. The detection of vaccine-induced antibodies to HIV by serological tests is most commonly referred to as vaccine-induced sero-reactivity (VISR). VISR can be misinterpreted as a sign of HIV infection in a healthy study participant. In a participant who has developed vaccine-induced antibodies, accurate diagnosis of HIV infection (or lack thereof) may require specialized tests and algorithms (differential testing) that are usually not available in community settings. Organizations sponsoring clinical testing of preventive HIV vaccine candidates have an ethical obligation not only to inform healthy volunteers about the potential problems associated with participating in a clinical trial but also to help manage any resulting issues. This article explores the scope of VISR-related issues that become increasingly prevalent as the search for an effective HIV vaccine continues and will be paramount once a preventive vaccine is deployed. We also describe ways in which organizations conducting HIV vaccine trials have addressed these issues and outline areas where more work is needed. PMID:25649349

  18. The Inclusion of African-American Study Participants in Web-Based Research Studies: Viewpoint.

    PubMed

    Watson, Bekeela; Robinson, Dana H Z; Harker, Laura; Arriola, Kimberly R Jacob

    2016-01-01

    The use of Web-based methods for research recruitment and intervention delivery has greatly increased as Internet usage continues to grow. These Internet-based strategies allow for researchers to quickly reach more people. African-Americans are underrepresented in health research studies. Due to this, African-Americans get less benefit from important research that could address the disproportionate health outcomes they face. Web-based research studies are one promising way to engage more African-Americans and build trust with the African-American community. With African-Americans' increasing access to the Internet using mobile phones and other mobile phone technologies, we advocate for efforts to increase the representation of African-Americans in research studies by using the Internet as a recruitment tool and conclude with recommendations that support this goal. PMID:27334683

  19. The Inclusion of African-American Study Participants in Web-Based Research Studies: Viewpoint

    PubMed Central

    Harker, Laura; Arriola, Kimberly R. Jacob

    2016-01-01

    The use of Web-based methods for research recruitment and intervention delivery has greatly increased as Internet usage continues to grow. These Internet-based strategies allow for researchers to quickly reach more people. African-Americans are underrepresented in health research studies. Due to this, African-Americans get less benefit from important research that could address the disproportionate health outcomes they face. Web-based research studies are one promising way to engage more African-Americans and build trust with the African-American community. With African-Americans’ increasing access to the Internet using mobile phones and other mobile phone technologies, we advocate for efforts to increase the representation of African-Americans in research studies by using the Internet as a recruitment tool and conclude with recommendations that support this goal. PMID:27334683

  20. Participation of Employees and Students of the Faculty of Geodesy and Cartography in Polar Research

    NASA Astrophysics Data System (ADS)

    Pasik, Mariusz; Adamek, Artur; Rajner, Marcin; Kurczyński, Zdzisław; Pachuta, Andrzej; Woźniak, Marek; Bylina, Paweł; Próchniewicz, Dominik

    2016-06-01

    This year the Faculty of Geodesy and Cartography, Warsaw University of Technology celebrates its 95th jubilee, which provides an opportunity to present the Faculty's rich traditions in polar research. Employees and students of the faculty for almost 60 years have taken part in research expeditions to the polar circle. The article presents various studies typical of geodesy and cartography, as well as miscellany of possible measurement applications and geodetic techniques used to support interdisciplinary research. Wide range of geodetic techniques used in polar studies includes classic angular and linear surveys, photogrammetric techniques, gravimetric measurements, GNSS satellite techniques and satellite imaging. Those measurements were applied in glaciological, geological, geodynamic, botanical researches as well as in cartographic studies. Often they were used in activities aiming to ensure continuous functioning of Polish research stations on both hemispheres. This study is a short overview of thematic scope and selected research results conducted by our employees and students.

  1. Considerations for the Use of Human Participants in Vector Biology Research: A Tool for Investigators and Regulators

    PubMed Central

    Youngblood, Laura; Bangs, Michael J.; Lavery, James V.; James, Stephanie

    2015-01-01

    Abstract 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. PMID:25700039

  2. Making Sense of Teacher Participants' Graphic Organizers in a Second Order Action Research: Reflection of the Voice of an Action Researcher

    ERIC Educational Resources Information Center

    Hwa, Chuah Kim

    2012-01-01

    Being a facilitator of AR (action research) to a group of secondary school teachers in Kuching, Sarawak provided me the opportunity to engage in a second order inquiry using AR on the two years' AR learning workshops concerned. The teacher participants were asked to illustrate, using suitable GOs (graphic organizers), their understanding of what…

  3. Young and Senior Science and Engineering Faculty, 1974: Support, Research Participation, and Tenure.

    ERIC Educational Resources Information Center

    Dickens, Charles H.

    Presented are the results of a survey, initiated in mid-1974 by the National Science Foundation, to update the findings of a 1968 survey designed to obtain information on research activities of faculty in colleges and universities. Survey topics deal with faculty composition, tenure, proportion of faculty active in research, division of research…

  4. Participants' Reflections Two and Three Years after an Introductory Chemistry Course-Embedded Research Experience

    ERIC Educational Resources Information Center

    Szteinberg, Gabriela A.; Weaver, Gabriela C.

    2013-01-01

    The Center for Authentic Science Practice in Education (CASPiE) is a course-embedded undergraduate research curriculum that aims to introduce authentic research experiences for students in their early college years. A cohort of students who were randomly assigned to the CASPiE laboratory sections was tracked during and two and three years after…

  5. Doing Social Constructivist Research Means Making Empathic and Aesthetic Connections with Participants

    ERIC Educational Resources Information Center

    Kim, Mi Song

    2014-01-01

    Social constructivist theorists tend to identify qualitative educational research as discovering meaning and understanding by the researcher's active involvement in the construction of meaning. Although these approaches have been widely influenced by Vygotsky's social constructivist approach, his own theoretical framework has received…

  6. Researcher Study Thyself: AERA Participants' Speaking Times and Turns by Gender

    ERIC Educational Resources Information Center

    Wiest, Lynda R.; Abernathy, Tammy V.; Obenchain, Kathryn M.; Major, Elza M.

    2006-01-01

    This research compares speaking times and turns of female and male presenters and audience members at the 2000 Annual Meeting of the American Educational Research Association (AERA). In their presentations, males spoke longer than females, but the differences were not statistically significant. They spoke significantly longer than females,…

  7. Dealing with Data: Science Librarians' Participation in Data Management at Association of Research Libraries Institutions

    ERIC Educational Resources Information Center

    Antell, Karen; Foote, Jody Bales; Turner, Jaymie; Shults, Brian

    2014-01-01

    As long as empirical research has existed, researchers have been doing "data management" in one form or another. However, funding agency mandates for doing formal data management are relatively recent, and academic libraries' involvement has been concentrated mainly in the last few years. The National Science Foundation implemented a new…

  8. Participation and Participatory Action Research (PAR) in Environmental Education Processes: For What Are People Empowered?

    ERIC Educational Resources Information Center

    Le Grange, Lesley

    2009-01-01

    Participatory action research (PAR) derived from anti-colonial struggles in the third world in the 1960s. Traditionally it has been a method of the margins because of its commitment to linking social justice to research. Because of its counter-hegemonic tendency it has had great appeal among environmental educators advocating a socially critical…

  9. Young People's Views Regarding Participation in Mental Health and Wellbeing Research through Social Media

    ERIC Educational Resources Information Center

    Monks, Helen; Cardoso, Patricia; Papageorgiou, Alana; Carolan, Catherine; Costello, Leesa; Thomas, Laura

    2015-01-01

    Social media is a central component in the lives of many young people, and provides innovative potential to conduct research among this population. Ethical issues around online research have been subject to much debate, yet young people have seldom been consulted to provide a youth perspective and voice. Eight (8) focus groups involving 48 Grade 9…

  10. EERA: A Participant or an Agent in European Research Policy? A Governance Perspective

    ERIC Educational Resources Information Center

    Moos, Lejf; Wubbels, Theo

    2014-01-01

    In this article, the authors begin to frame a discussion of the educational research space that the European Educational Research Association (EERA) has been given and aims to take. The educational space is not merely a geographical phenomenon, but rather refers to the networks, flows and scapes that form the foundation for the construction of…

  11. The Ethical Maze: Finding an Inclusive Path towards Gaining Children's Agreement to Research Participation

    ERIC Educational Resources Information Center

    Cocks, Alison J.

    2006-01-01

    In the UK, the ethics of engaging in sociological research directly involving children have primarily been shaped by definitions of "competence". While this has been a crucial guideline for researchers in shaping the concept of informed consent, it has also acted, perhaps inadvertently, as a way of excluding particular children from the research…

  12. K-12 Participation Is Instrumental in Enhancing Undergraduate Research and Scholarship Experience

    ERIC Educational Resources Information Center

    Ahn, Changwoo

    2015-01-01

    This article reports a case of incorporating a field-based ecological project as a resource into an undergraduate research and scholarship (RS) intensive course. Student research projects were conducted in an outdoor experimental compound with wetland mesocosms as well as in local created wetlands to study soil organic matter content as part of an…

  13. Re-Politicizing Participatory Action Research: Unmasking Neoliberalism and the Illusions of Participation

    ERIC Educational Resources Information Center

    Jordan, Steven; Kapoor, Dip

    2016-01-01

    Utilizing potential cross-pollinations of theoretical insights taken from approaches to educational and social research that have mostly emerged outside of the university and been generated by critical theorists and most recently indigenous researchers as work that has not only challenged the epistemological and ontological foundations of the…

  14. Research Programs Constituting U.S. Participation in the International Biological Program.

    ERIC Educational Resources Information Center

    National Academy of Sciences--National Research Council, Washington, DC. Div. of Biology and Agriculture.

    The United States contribution to the International Biological Program, which aims to understand more clearly the interrelationships within ecosystems, is centered on multidisciplinary research programs investigating the biological basis of ecological productivity and human welfare. Integrated research programs have been established for the…

  15. You Must Participate: Violating Research Ethical Principles through Role-Play

    ERIC Educational Resources Information Center

    Kraus, Rachel

    2008-01-01

    The author discusses the use of role-play to teach research ethics in three semesters of a research methods class. Small groups of students were assigned one of nine ethical norms discussed in the course textbook and the American Sociological Association Code of Ethics. Each group role-played the violation of their assigned ethic to the class. The…

  16. Open Practices and Identity: Evidence from Researchers and Educators' Social Media Participation

    ERIC Educational Resources Information Center

    Veletsianos, George

    2013-01-01

    The ways that emerging technologies and social media are used and experienced by researchers and educators are poorly understood and inadequately researched. The goal of this study is to examine the online practices of individual scholars in order to explore and understand the activities and practices that they enact when they use social media for…

  17. Academic Incentives for Faculty Participation in Community-based Participatory Research

    PubMed Central

    Nyden, Philip

    2003-01-01

    Recognizing the need to overcome the obstacles of traditional university- and discipline-oriented research approaches, a variety of incentives to promote community-based participatory research (CBPR) are presented. Experiences of existing CBPR researchers are used in outlining how this methodological approach can appeal to faculty: the common ground shared by faculty and community leaders in challenging the status quo; opportunities to have an impact on local, regional, and national policy; and opening doors for new research and funding opportunities. Strategies for promoting CBPR in universities are provided in getting CBPR started, changing institutional practices currently inhibiting CBPR, and institutionalizing CBPR. Among the specific strategies are: development of faculty research networks; team approaches to CBPR; mentoring faculty and students; using existing national CBPR networks; modifying tenure and promotion guidelines; development of appropriate measures of CBPR scholarship; earmarking university resources to support CBPR; using Institutional Review Boards to promote CBPR; making CBPR-oriented faculty appointments; and creating CBPR centers. PMID:12848841

  18. Academic incentives for faculty participation in community-based participatory research.

    PubMed

    Nyden, Philip

    2003-07-01

    Recognizing the need to overcome the obstacles of traditional university- and discipline-oriented research approaches, a variety of incentives to promote community-based participatory research (CBPR) are presented. Experiences of existing CBPR researchers are used in outlining how this methodological approach can appeal to faculty: the common ground shared by faculty and community leaders in challenging the status quo; opportunities to have an impact on local, regional, and national policy; and opening doors for new research and funding opportunities. Strategies for promoting CBPR in universities are provided in getting CBPR started, changing institutional practices currently inhibiting CBPR, and institutionalizing CBPR. Among the specific strategies are: development of faculty research networks; team approaches to CBPR; mentoring faculty and students; using existing national CBPR networks; modifying tenure and promotion guidelines; development of appropriate measures of CBPR scholarship; earmarking university resources to support CBPR; using Institutional Review Boards to promote CBPR; making CBPR-oriented faculty appointments; and creating CBPR centers. PMID:12848841

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

    PubMed Central

    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. PMID:25667706

  20. Taking Refuge in the Branches of a Guava Tree: The Difficulty of Retaining Consenting and Nonconsenting Participants' Confidentiality as an Indigenous Researcher

    ERIC Educational Resources Information Center

    Mannay, Dawn

    2011-01-01

    Issues of anonymity of place, participants, and visual images are well documented in social science research (Wiles et al., 2008). However, in this article, I move beyond issues of the immediate concerns of anonymity to a wider application that encompasses the position of research participants, the researcher, and that of individuals who are…

  1. Undergraduate research studies program at participating institutions of the HBCU fossil energy consortium

    SciTech Connect

    Bhatia, S.C.; Cardelino, B.H.; Hall, J.H. Jr.; Mitchell, M.B.; Stelson, A.W. . Dolphus E. Milligan Science Research Inst.)

    1990-04-30

    The objectives of this research program are to expose students in minority institutions to energy and fossil fuels research, to stimulate their interest in the sciences and engineering, and to encourage them to pursue graduate studies, thereby ensuring the necessary supply of manpower for the industrial and energy sectors of the national economy. This report describes a project focused on the surface chemical properties of coal and their influence on the adsorption of aqueous soluble catalyst metals, and research on the characterization of coal liquids. 2 refs., 1 fig.

  2. Beyond Attendance: A Multi-Modal Understanding of Arts Participation. Based on the 2008 Survey of Public Participation in the Arts. Research Report #54

    ERIC Educational Resources Information Center

    Novak-Leonard, Jennifer L.; Brown, Alan S.

    2011-01-01

    First conducted in 1982, the National Endowment for the Arts' (NEA's) Survey of Public Participation in the Arts (SPPA) serves as the longest-standing resource for studying U.S. adult levels of arts attendance, personal arts creation and performance, and arts participation through electronic media. The environment in which arts organizations…

  3. Research is ‘a step into the unknown’: an exploration of pharmacists’ perceptions of factors impacting on research participation in the NHS

    PubMed Central

    Lowrie, Richard; Morrison, Graeme; Lees, Rosalind; Grant, Christopher H; Johnson, Chris; MacLean, Fiona; Semple, Yvonne; Thomson, Alison; Harrison, Heather; Mullen, Alexander B; Lannigan, Norman; Macdonald, Sara

    2015-01-01

    Objective This study explored National Health Service (NHS) pharmacists’ perceptions and experiences of pharmacist-led research in the workplace. Design Semistructured, face-to-face discussions continued until distinct clusters of opinion characteristics formed. Verbatim transcripts of audio-recordings were subjected to framework analysis. Setting Interviews were carried out with 54 pharmacists with diverse backgrounds and roles from general practices and secondary care in the UK's largest health authority. Results The purpose and potential of health services research (HSR) was understood and acknowledged to be worthwhile by participants, but a combination of individual and system-related themes tended to make participation difficult, except when this was part of formal postgraduate education leading to a qualification. Lack of prioritisation was routinely cited as the greatest barrier, with motivation, confidence and competence as additional impediments. System-related themes included lack of practical support and pharmacy professional issues. A minority of highly motivated individuals managed to embed research participation into routine activity. Conclusions Most pharmacists realised the desirability and necessity of research to underpin pharmacy service expansion, but a combination of individual and professional level changes is needed to increase activity. Our findings provide a starting point for better understanding the mindset of hospital-based and general practice-based pharmacists towards research, as well as their perceived barriers and supports. PMID:26719315

  4. Elucidating the Power in Empowerment and the Participation in Participatory Action Research: A Story About Research Team and Elementary School Change

    PubMed Central

    Dworski-Riggs, Deanne

    2010-01-01

    Community psychologists are increasingly using Participatory Action Research (PAR) as a way to promote social justice by creating conditions that foster empowerment. Yet, little attention has been paid to the differences between the power structure that PAR advocates and the local community power structures. This paper seeks to evaluate the level of participation in a PAR project for multiple stakeholder groups, determine how PAR was adjusted to better fit community norms, and whether our research team was able to facilitate the emergence of PAR by adopting an approach that was relevant to the existing power relations. We conclude that power differences should not be seen as roadblocks to participation, but rather as moments of opportunity for the researchers to refine their methods and for the community and the community psychologist to challenge existing power structures. PMID:20232244

  5. The Effect of Message Framing on African American Women's Intention to Participate in Health-Related Research.

    PubMed

    Balls-Berry, Joyce E; Hayes, Sharonne; Parker, Monica; Halyard, Michele; Enders, Felicity; Albertie, Monica; Pinn, Vivian; Radecki Breitkopf, Carmen

    2016-05-01

    This study examined the effect of message framing on African American women's intention to participate in health-related research and actual registration in ResearchMatch (RM), a disease-neutral, national volunteer research registry. A community-engaged approach was used involving collaboration between an academic medical center and a volunteer service organization formed by professional women of color. A self-administered survey that contained an embedded message framing manipulation was distributed to more than 2,000 African American women attending the 2012 national assembly of The Links, Incorporated. A total of 391 surveys were completed (381 after exclusion: 187 containing the gain-framed message and 194 containing the loss-framed message). The majority (57%) of women expressed favorable intentions to participate in health-related research, and 21% subsequently enrolled in RM. The effect of message framing on intention was moderated by self-efficacy. There was no effect of message framing on RM registration; however, those with high self-efficacy were more than 2 times as likely as those with low self-efficacy to register as a potential study volunteer in RM (odds ratio = 2.62, 95% confidence interval [1.29, 5.33]). This investigation makes theoretical and practical contributions to the field of health communication and informs future strategies to meaningfully and effectively include women and minorities in health-related research. PMID:27077665

  6. Research participants telling the truth about their lives: the ethics of asking and not asking about abuse.

    PubMed

    Becker-Blease, Kathryn A; Freyd, Jennifer J

    2006-04-01

    Most discussions of the ethics of self-report research on abuse and interpersonal violence focus on the risks of asking participants about their experiences. An important element of the cost-benefit analysis--the costs of not asking about child abuse--has largely been ignored. Furthermore, little research has been conducted on the costs and benefits of child abuse research, leaving researchers to make decisions based on individual beliefs about such issues as the prevalence of abuse, the likelihood of disclosure, the effects of child abuse, and the ability of abuse survivors to give informed consent. The authors suggest that these beliefs tend to overemphasize survivors' vulnerability and ignore the costs of avoiding asking about abuse. In fact, these beliefs may reinforce societal avoidance of abuse and ultimately harm abuse survivors. PMID:16594838

  7. Broadening Participation in Geosciences with Academic Year and Summer Research Experiences

    NASA Astrophysics Data System (ADS)

    Austin, S. A.; Howard, A.; Johnson, L. P.; Gutierrez, R.; Chow, Y.

    2013-12-01

    Medgar Evers College, City University of New York, has initiated a multi-tiered strategy aimed at increasing the number of under-represented minority and female students pursuing careers in the Geosciences, especially Earth and Atmospheric Sciences and related areas. The strategy incorporates research on the persistence of minority and female under-represented students in STEM disciplines. The initiatives include NASA and NSF-funded team-based undergraduate research activities during the summer and academic year as well as academic support (clustering, PTLT workshops for gatekeeper courses), curriculum integration modules, and independent study/special topics courses. In addition, high school students are integrated into summer research activities working with undergraduate and graduate students as well as faculty and other scientist mentors. An important initial component was the building of an infrastructure to support remote sensing, supported by NASA. A range of academic year and summer research experiences are provided to capture student interest in the geosciences. NYC-based research activities include urban impacts of global climate change, the urban heat island, ocean turbulence and general circulation models, and space weather: magnetic rope structure, solar flares and CMEs. Field-based investigations include atmospheric observations using BalloonSat sounding vehicles, observations of tropospheric ozone using ozonesondes, and investigations of the ionosphere using a CubeSat. This presentation provides a description of the programs, student impact, challenges and observations.

  8. Do the psychopathic personality traits of fearless dominance and self-centered impulsivity predict attitudes about and influences on research participation?

    PubMed

    Smith, Shannon Toney; Edens, John F; Epstein, Monica; Stiles, Paul G; Poythress, Norman G

    2012-01-01

    Little is known about potential participants' views about research, their willingness to participate in research, and the extent to which they might be susceptible to coercive attempts to compel their participation, particularly among populations at risk for exploitation (e.g., offenders). The extent to which individual differences variables, such as personality constructs (e.g., psychopathic traits), might affect participants' attitudes toward research is also essentially unknown. The present study sought to examine the psychopathy constructs of Fearless Dominance (FD) and Self-Centered Impulsivity (SCI) via the Multidimensional Personality Questionnaire-Brief Form (MPQ-BF) to assess the extent to which these traits predict attitudes towards research and susceptibility to coercion within a diverse criminal justice sample (N = 631). SCI was modestly associated with perceptions that illicit pressures regarding research participation were likely to occur, and participants high in these traits appeared somewhat vulnerable to succumbing to coercive influences. In contrast, FD failed to predict the likelihood that illicit pressures regarding research participation would occur as well as the potential that these pressures would have to impact participants' voluntariness and likelihood of participating. Implications for recruiting potential participants for research in correctional settings are discussed. PMID:22259073

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

    PubMed Central

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

    2014-01-01

    Challenges associated with recruiting and retaining community-based populations in research studies have been recognized yet remain of major concern for researchers. There is a need for exchange of recruitment and retention techniques that inform recruitment and retention strategies. Here, the authors discuss a variety of methods that were successful in exceeding target recruitment and retention goals in a randomized clinical trial of hearing protector use among farm operators. Recruitment and retention strategies were 1) based on a philosophy of mutually beneficial engagement in the research process, 2) culturally appropriate, 3) tailored to the unique needs of partnering agencies, and 4) developed and refined in a cyclical and iterative process. Sponsoring organizations are interested in cost-effective recruitment and retention strategies, particularly relating to culturally and ethnically diverse groups. These approaches may result in enhanced subject recruitment and retention, concomitant containment of study costs, and timely accomplishment of study aims. PMID:24667018

  10. Anticipating risk for human subjects participating in clinical research: application of Failure Mode and Effects Analysis.

    PubMed

    Cody, Robert J

    2006-03-01

    Failure Mode and Effects Analysis (FMEA) is a method applied in various industries to anticipate and mitigate risk. This methodology can be more systematically applied to the protection of human subjects in research. The purpose of FMEA is simple: prevent problems before they occur. By applying FMEA process analysis to the elements of a specific research protocol, the failure severity, occurrence, and detection rates can be estimated for calculation of a "risk priority number" (RPN). Methods can then be identified to reduce the RPN to levels where the risk/benefit ratio favors human subject benefit, to a greater magnitude than existed in the pre-analysis risk profile. At the very least, the approach provides a checklist of issues that can be individualized for specific research protocols or human subject populations. PMID:16537191

  11. Widening participation would be key in enhancing bioinformatics and genomics research in Africa

    PubMed Central

    Karikari, Thomas K.; Quansah, Emmanuel; Mohamed, Wael M.Y.

    2015-01-01

    Bioinformatics and genome science (BGS) are gradually gaining roots in Africa, contributing to studies that are leading to improved understanding of health, disease, agriculture and food security. While a few African countries have established foundations for research and training in these areas, BGS appear to be limited to only a few institutions in specific African countries. However, improving the disciplines in Africa will require pragmatic efforts to expand training and research partnerships to scientists in yet-unreached institutions. Here, we discuss the need to expand BGS programmes in Africa, and propose mechanisms to do so. PMID:26767163

  12. Health, Functioning, and Participation of Adolescents and Adults with Cerebral Palsy: A Review of Outcomes Research

    ERIC Educational Resources Information Center

    Frisch, Dana; Msall, Michael E.

    2013-01-01

    With medical advances, more individuals with cerebral palsy (CP) syndromes who reside in developed countries are surviving to adolescence and adulthood. However, there continues to be a paucity of research examining long-term health, functional activities, and participatory outcomes over their life-course. This article reviews the current…

  13. Geographical and Place Dimensions of Post-School Participation in Education and Work. Research Report

    ERIC Educational Resources Information Center

    Webb, Sue; Black, Ros; Morton, Ruth; Plowright, Sue; Roy, Reshmi

    2015-01-01

    Aspirations have been shown to be a key influence on young people's engagement with post-school education and training. This research explores how aspirations are affected by where a young person lives. It finds that young people are significantly influenced by their educational and career "inheritance". By encountering educational…

  14. Is the Relationship between AP® Participation and Academic Performance Really Meaningful? Research Brief 2015-1

    ERIC Educational Resources Information Center

    Ewing, Maureen; Howell, Jessica

    2015-01-01

    Strong academic performance in college, as measured by first-year grades, is important for a host of reasons, but perhaps the most critical reason is that students who perform well in their first year of college are more likely to earn a bachelor's degree (Adelman, 2006). Research shows that Advanced Placement Program® (AP®) students, particularly…

  15. Sustainable Participation in Regular Exercise amongst Older People: Developing an Action Research Approach

    ERIC Educational Resources Information Center

    Davies, Jeanne; Lester, Carolyn; O'Neill, Martin; Williams, Gareth

    2008-01-01

    Objective: This article describes the Triangle Project's work with a post industrial community, where healthy living activities were developed in response to community members' expressed needs. Method: An action research partnership approach was taken to reduce health inequalities, with local people developing their own activities to address…

  16. Exploring Informed Consent and Dissent through Children's Participation in Educational Research

    ERIC Educational Resources Information Center

    Bourke, Roseanna; Loveridge, Judith

    2014-01-01

    Involving children and young people in educational research has been foundational in developing and understanding theories of learning, and understanding child development. Attempts to identify children's perspectives on policies and practices that directly affect them in educational settings have resulted in an increase in the involvement of…

  17. Enabling Students to Participate in School Improvement through a Students as Researchers Programme

    ERIC Educational Resources Information Center

    Roberts, Amanda; Nash, Judith

    2009-01-01

    This article explores students' potential to make a difference to their school through a Students as Researchers programme. It begins by discussing the impetus for the current increase in student voice initiatives in schools. It continues the debate around issues of student empowerment and students' identity as change agents through an analysis of…

  18. Undocumented Research Participants: Ethics and Protection in a Time of Fear

    ERIC Educational Resources Information Center

    Lahman, Maria K. E.; Mendoza, Bernadette M.; Rodriguez, Katrina L.; Schwartz, Jana L.

    2011-01-01

    President Obama characterized Arizona's recent immigration law as undermining "basic notions of fairness that we cherish as Americans." The authors' extend the national discussion regarding immigration to ethics and research. Therefore, the purpose of this methodological article is to advance areas for ethical consideration when researching…

  19. Leisure Activity Participation and Handicapped Populations: An Assessment of Research Needs.

    ERIC Educational Resources Information Center

    Verhoven, Peter J.; Goldstein, Judith E.

    Presented is a report of a conference on research needs in the area of leisure time activity for handicapped persons. Reviewed are the initial conference concept and its evaluation into five categories of concern (leisure concepts, attitudinal barriers, activity analysis, design/adaptation considerations, and education/counseling). Discussed are…

  20. Tough Teens: The Methodological Challenges of Interviewing Teenagers as Research Participants

    ERIC Educational Resources Information Center

    Bassett, Raewyn; Beagan, Brenda L.; Ristovski-Slijepcevic, Svetlana; Chapman, Gwen E.

    2008-01-01

    Encouraging a teenager to have a conversation in a semistructured research interview is fraught with difficulties. The authors discuss the methodological challenges encountered when interviewing adolescents of European Canadian, African Canadian, and Punjabi Canadian families who took part in the Family Food Decision-Making Study in two regions of…

  1. Recent Research on Eating Disorders and Body Image Distortion among Aerobic Instructors and Exercise Participants.

    ERIC Educational Resources Information Center

    Moriarty, Dick; And Others

    This document reviews the research linking excessive exercise with eating disorders. Seven steps are listed that an individual follows in going from someone who starts out using exercise and aerobic dance as a stress management technique or a hobby to becoming an exercise dependent individual with addictive behavior. Studies are reviewed, the…

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

    ERIC Educational Resources Information Center

    Magnussen, Rikke; Hansen, Sidse Damgaard; Planke, Tilo; Sherson, Jacob Friis

    2014-01-01

    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…

  3. Building Environmental Literacy through Participation in GIS and Multimedia Assisted Field Research

    ERIC Educational Resources Information Center

    Lo, C. P.; Affolter, James M.; Reeves, Thomas C.

    2002-01-01

    A Learning Support System (LSS) that emphasizes experiential research in natural environments using the cutting-edge technologies of GIS and multimedia has been developed for teaching environmental literacy to undergraduate students at the University of Georgia. Computers are used as cognitive tools to create a context in which students become…

  4. Testing a Model of Participant Retention in Longitudinal Substance Abuse Research

    ERIC Educational Resources Information Center

    Gilmore, Devin; Kuperminc, Gabriel P.

    2014-01-01

    Longitudinal substance abuse research has often been compromised by high rates of attrition, thought to be the result of the lifestyle that often accompanies addiction. Several studies have used strategies including collection of locator information at the baseline assessment, verification of the information, and interim contacts prior to…

  5. Partnership and Recognition in Action Research: Understanding the Practices and Practice Architectures for Participation and Change

    ERIC Educational Resources Information Center

    Edwards-Groves, Christine; Olin, Anette; Karlberg-Granlund, Gunilla

    2016-01-01

    This article is the first and introductory article of this special issue. The article gives a societist account of the principles of partnership and recognition as they are encountered and experienced in practices in action research. A societist account of practices requires a social theory for understanding practices. Therefore, the article…

  6. Assessment of the Impact of the Kansas IDeA Network of Biomedical Research Excellence Program on Undergraduate Participation in Research

    PubMed Central

    Chapes, Stephen K.; Velasquez, Sarah E.

    2013-01-01

    The Kansas IDeA Network of Biomedical Research Excellence (K-INBRE) was established in 2001 and is a network of 10 higher-education institutions in Kansas and northern Oklahoma. The program is funded by the Institutional Development Award (IDeA) program of the National Institutes of Health (NIH). As part of the program’s goal to enhance the research infrastructure in Kansas, a training program was developed to encourage undergraduates to participate in biomedical research. From September 2002 to May 2012, the K-INBRE supported 731 students at 10 institutions. Although 16% of student participants in the program are still undergraduates, 323 of our students have gone into biomedical graduate school or medical school programs. Thirty-seven percent of all the completed students have matriculated into graduate programs and 19% of our completed students went to medical school. Moreover, 12% have gone into other health-related professions. One percent of our students who went into medical school programs are in highly prestigious MD/PhD programs. In the fall of 2011, we surveyed participants from the last 10 years about career choices and the impact of the K-INBRE program on those students. Two hundred twenty-four former and current students responded to the survey with a consensus of high impact of the K-INBRE program on student training, career choices, and perceptions about research. PMID:23858353

  7. Prior participation in the strange situation and overstress jointly facilitate disorganized behaviours: implications for theory, research and practice.

    PubMed

    Granqvist, Pehr; Hesse, Erik; Fransson, Mari; Main, Mary; Hagekull, Berit; Bohlin, Gunilla

    2016-06-01

    We seek to understand why a relatively high percentage (39%; vs the meta-analytic average, 15-18%) of disorganized/disoriented (D) classifications has accrued in the low-risk Uppsala Longitudinal Study (ULS) study, using experienced D coders. Prior research indicates that D behaviours do not always indicate attachment disorganization stemming from a history of frightening caregiving. We examined the role of two other presumed factors: participation in a previous strange situation and overstress. Our findings indicate that both factors were highly prevalent in the ULS sample and that they jointly predicted higher rates of D. First, participation in a previous strange situation was associated with significantly higher distress displays during the second visit than occurred among previously untested children, suggesting that prior participation in the strange situation had a sensitizing effect on child distress during the second visit. Second, unless separations were cut short in lieu of high distress during the second visit, re-tested children were disproportionately likely (ca 60%) to be classified D. We argue that these findings have important implications for theory, research, and practice. In particular, we conclude that practitioners must refrain from misattributing the appearance of any D behaviors observed to a history of maltreatment. PMID:26982875

  8. [Analytical research on Zheng Hao's Participation of the International Congress of Leprosy in 1909].

    PubMed

    Zhang, Sunbiao; Lin, Nan

    2015-01-01

    The Second International Congress was held in August, 1909 in Norway. Zheng Hao was dispatched by the Qing Government to attend the Congress as a representative. Through the Congress, Chinese people got to understand the latest ideas of prevention and treatment of leprosy in international medical field, and the approaches they adopted as well at that time. Meanwhile, Zheng Hao frankly confessed the backward status on the prevention and treatment in leprosy in China, and expressed the strong will to learn from the western world in this regard. This historical event, commonly ignored, manifested the fact that, beginning from the late Qing Dynasty, the involvement of Chinese medicine into the world medical trend as a whole was proceeding. By seizing this rare chance of participating the international meeting, the outstanding Chinese medical persons, with Zheng Hao as its representative, made up their mind to keep up with the international medical advanced pace, learning lessons, and pushing forward the development of Chinese medicine. PMID:26268255

  9. Developing Electronic Data Methods Infrastructure to Participate in Collaborative Research Networks

    PubMed Central

    Priest, Elisa L.; Klekar, Christopher; Cantu, Gabriela; Berryman, Candice; Garinger, Gina; Hall, Lauren; Kouznetsova, Maria; Kudyakov, Rustam; Masica, Andrew

    2014-01-01

    Context: Collaborative networks support the goals of a learning health system by sharing, aggregating, and analyzing data to facilitate identification of best practices care across delivery organizations. This case study describes the infrastructure and process developed by an integrated health delivery system to successfully prepare and submit a complex data set to a large national collaborative network. Case Description: We submitted four years of data for a diverse population of patients in specific clinical areas: diabetes, chronic heart failure, sepsis, and hip, knee, and spine. The most recent submission included 19 tables, more than 376,000 unique patients, and almost 5 million patient encounters. Data was extracted from multiple clinical and administrative systems. Lessons Learned: We found that a structured process with documentation was key to maintaining communication, timelines, and quality in a large-scale data submission to a national collaborative network. The three key components of this process were the experienced project team, documentation, and communication. We used a formal QA and feedback process to track and review data. Overall, the data submission was resource intensive and required an incremental approach to data quality. Conclusion: Participation in collaborative networks can be time and resource intense, however it can serve as a catalyst to increase the technical data available to the learning health system. PMID:25848600

  10. Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada

    PubMed Central

    2013-01-01

    Background Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies. Methods This is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participants recruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health research studies participated in semi-structured interviews. Participants described their experiences of health research participation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed using constant comparisons. Coding and data management was supported by Nvivo-7. Results A predominant theme to emerge was 'participation in health research to access health services.’ Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a “trial and error” process akin to research, which further blurred the boundaries between research and treatment. Conclusions Our findings have implications for recruitment, informed consent, and the dichotomizing of medical

  11. Undergraduate research studies program at participating institutions of the HBCU Fossil Energy Consortium

    SciTech Connect

    Bhatia, S.C.; Cardelino, B.H.; Hall, J.H. Jr.; Mitchell, M.B.; Stelson, A.W. . Dolphus E. Milligan Science Research Inst.)

    1990-07-31

    The objectives of this research program are to expose students in minority institutions of energy and fossil fuels research, to stimulate their interest in the sciences and engineering, and to encourage them to pursue graduate studies, thereby ensuring the necessary supply of manpower for the industrial and energy sectors of the national economy. Two projects are discussed here. The first is focused on the surface chemical properties of coal and their influence on the adsorption of aqueous soluble catalyst metals. The objective of the second project is to characterize coal derived liquids for distribution of oxygen, nitrogen and sulfur heteroatoms relative to the average molecular weight distribution of the coal liquid. The technique of size exclusion chromatography will be used. 2 refs., 2 figs.

  12. Technology Transfer External Metrics, Research, Success Stories, and Participation on Evaluation Team for the Reusable Launch Vehicle (RLV)

    NASA Technical Reports Server (NTRS)

    Trivoli, George W.

    1996-01-01

    This research report is divided into four sections. The first section is related to participation on the team that evaluated the proposals for the X-33 project and the Reusable Launch Vehicle (RLV) during mid-May; prior to beginning the 1996 Summer Faculty Fellowship. The second section discusses the various meetings attended related to the technology evaluation process. The third section is related to various research and evaluation activities engaged in by this researcher. The final section discusses several success stories this researcher aided in preparing. Despite the fact that this researcher is not an engineer or science faculty, invaluable knowledge and experience have been gained at MSFC. Although related to the previous summer's research, the research has been new, varied, and challenging. This researcher was fortunate to have had maximum interaction with NASA colleague, David Cockrell. It would be a privilege and honor to continue a relationship with the Technology Transfer Office. In addition, we will attempt to aid in the establishment of a continuous formalized relationship between MSFC and Jacksonville State University. Dr. David Watts, Vice President for Academic Affairs, J.S.U., is interested in having the Technology Division cooperating with MSFC in sharing information and working tech transfer inquiries. The principal benefits gained by this researcher include the opportunity to conduct research in a non-academic, real world environment. In addition, the opportunity to be involved in aiding with the decision process for the choice of the next generation of space transportation system was a once in a lifetime experience. This researcher has gained enhanced respect and understanding of MSFC/NASA staff and facilities.

  13. Research Opportunities in Solid Earth Science (RESESS): Broadening Participation in Geology and Geophysics (Invited)

    NASA Astrophysics Data System (ADS)

    Eriksson, S. C.; Hubenthal, M.

    2009-12-01

    RESESS is a multi-year, paid, summer research internship program designed for students from underrepresented groups. The students receive extensive mentoring in science research and communication and become part of a community that provides ongoing support. This has been possible in the initial 5 years of the program through collaboration with Significant Opportunities in Atmospheric Research and Science (SOARS), where solid earth students have been an integral part of the SOARS cohort, benefiting from social as well as educational interactions. 11 students have taken part in RESESS for at least one year and of these, four students have graduated in geoscience and entered graduate programs in geophysics and one was recently awarded an NSF graduate fellowship. Students have presented over 20 posters at national science meetings, and one has co-authored a peer-reviewed article. 23 scientists have mentored students over the past 5 years and 17 percent of these mentors are from underrepresented groups in science; 19 other scientists and university/science consortia staff have mentored students in written and verbal presentations and supported their integration into the local communities. Mentorship over a period of years is one important hallmark of this program as students have benefited from the support of UNAVCO, IRIS, USGS, and university scientists and staff during the summer, academic year, and at professional meetings such as AGU, GSA, NABGG, and SACNAS as well as consortia and project science workshops (UNAVCO, IRIS, and EarthScope). One goal of the project has been to educate the scientific community on the benefits of mentoring undergraduate students from underrepresented groups in STEM fields. Increasingly, scientists are approaching RESESS to include this program in their implementation of broader impacts. RESESS has been funded by NSF for the next five years with plans to expand the number of students, geographic and scientific diversity, and sources of

  14. Improving Participation Rates for Women of Color in Health Research: The Role of Group Cohesion

    PubMed Central

    Mama, Scherezade; Reese-Smith, Jacqueline Y.; Estabrooks, Paul A.; Lee, Rebecca E.

    2015-01-01

    Adherence to physical activity and dietary interventions is a common challenge. Interventions that use group cohesion strategies show promise for increasing adherence, but have not been tested among women of color. The purpose of this study was to determine whether dimensions of group cohesion mediate the association between intervention condition and attendance within a community physical activity program for women of color. African American and Hispanic or Latina women (N=310) completed measurements at baseline and post-intervention and participated in a social cohesion intervention to improve physical activity and dietary habits. Women were assigned to a physical activity or fruit and vegetable intervention group. Social and task cohesion was measured using the Physical Activity Group Environment Questionnaire (PAGE-Q). Attendance was recorded at each of six intervention sessions. Women were generally middle-age (M age = 46.4 years, SD=9.1) and obese (M BMI = 34.4 kg/m2, SD=7.7). The estimate of the mediated effect was significant for all group cohesion constructs, indicating both task constructs—attraction to the group’s task (SE=0.096, CI: −0.599 to −0.221) and group integration around the task (SE=0.060, CI: −0.092 to −0.328)—and social constructs—attraction to the group’s social aspects (SE=0.046, CI: −0.546 to −0.366) and group integration around social aspects (SE=0.046, CI: −0.546 to −0.366)—significantly mediated the association between group assignment and attendance. Both task and social constructs are important to improve attendance in health promotion interventions for women of color. PMID:21826476

  15. Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement

    PubMed Central

    Deverka, Patricia A; Lavallee, Danielle C; Desai, Priyanka J; Esmail, Laura C; Ramsey, Scott D; Veenstra, David L; Tunis, Sean R

    2012-01-01

    Aims Stakeholder engagement is fundamental to comparative effectiveness research (CER), but lacks consistent terminology. This paper aims to define stakeholder engagement and present a conceptual model for involving stakeholders in CER. Materials & methods The definitions and model were developed from a literature search, expert input and experience with the Center for Comparative Effectiveness Research in Cancer Genomics, a proof-of-concept platform for stakeholder involvement in priority setting and CER study design. Results Definitions for stakeholder and stakeholder engagement reflect the target constituencies and their role in CER. The ‘analytic-deliberative’ conceptual model for stakeholder engagement illustrates the inputs, methods and outputs relevant to CER. The model differentiates methods at each stage of the project; depicts the relationship between components; and identifies outcome measures for evaluation of the process. Conclusion While the definitions and model require testing before being broadly adopted, they are an important foundational step and will be useful for investigators, funders and stakeholder groups interested in contributing to CER. PMID:22707880

  16. Using Information Technology and Social Networking for Recruitment of Research Participants: Experience From an Exploratory Study of Pediatric Klinefelter Syndrome

    PubMed Central

    Smaldone, Arlene; Fennoy, Ilene; Reame, Nancy; Grey, Margaret

    2013-01-01

    Background Recruiting pediatric samples for research may be challenging due to parental mistrust of the research process, privacy concerns, and family time constraints. Recruitment of children with chronic and genetic conditions may further complicate the enrollment process. Objective In this paper, we describe the methodological challenges of recruiting children for research and provide an exemplar of how the use of information technology (IT) strategies with social networking may improve access to difficult-to-reach pediatric research participants. Methods We conducted a cross-sectional descriptive study of boys between the ages of 8 and 18 years with Klinefelter syndrome. This study presented unique challenges for recruitment of pediatric participants. These challenges are illustrated by the report of recruitment activities developed for the study. We reviewed the literature to explore the issues of recruiting children for research using conventional and IT approaches. Success rates of conventional recruitment approaches, such as brochures, flyers in medical offices, and physician referrals, are compared with IT-based outreach. The IT approaches included teleconferencing via a Klinefelter syndrome support group, services of a Web-based commercial recruitment-matching company, and the development of a university-affiliated research recruitment website with the use of paid advertising on a social networking website (Facebook). Results Over a 3-month period, dissemination of over 150 recruitment brochures and flyers placed in a large urban hospital and hospital-affiliated clinical offices, with 850 letters to physicians and patients were not successful. Within the same period, face-to-face recruitment in the clinical setting yielded 4 (9%) participants. Using Web-based and social networking approaches, 39 (91%) agreed to participate in the study. With these approaches, 5 (12%) were recruited from the national Klinefelter syndrome advocacy group, 8 (19%) from local

  17. Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project.

    PubMed

    Sanderson, Saskia C; Linderman, Michael D; Suckiel, Sabrina A; Diaz, George A; Zinberg, Randi E; Ferryman, Kadija; Wasserstein, Melissa; Kasarskis, Andrew; Schadt, Eric E

    2016-01-01

    Whole exome/genome sequencing (WES/WGS) is increasingly offered to ostensibly healthy individuals. Understanding the motivations and concerns of research participants seeking out personal WGS and their preferences regarding return-of-results and data sharing will help optimize protocols for WES/WGS. Baseline interviews including both qualitative and quantitative components were conducted with research participants (n=35) in the HealthSeq project, a longitudinal cohort study of individuals receiving personal WGS results. Data sharing preferences were recorded during informed consent. In the qualitative interview component, the dominant motivations that emerged were obtaining personal disease risk information, satisfying curiosity, contributing to research, self-exploration and interest in ancestry, and the dominant concern was the potential psychological impact of the results. In the quantitative component, 57% endorsed concerns about privacy. Most wanted to receive all personal WGS results (94%) and their raw data (89%); a third (37%) consented to having their data shared to the Database of Genotypes and Phenotypes (dbGaP). Early adopters of personal WGS in the HealthSeq project express a variety of health- and non-health-related motivations. Almost all want all available findings, while also expressing concerns about the psychological impact and privacy of their results. PMID:26036856

  18. Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project

    PubMed Central

    Sanderson, Saskia C; Linderman, Michael D; Suckiel, Sabrina A; Diaz, George A; Zinberg, Randi E; Ferryman, Kadija; Wasserstein, Melissa; Kasarskis, Andrew; Schadt, Eric E

    2016-01-01

    Whole exome/genome sequencing (WES/WGS) is increasingly offered to ostensibly healthy individuals. Understanding the motivations and concerns of research participants seeking out personal WGS and their preferences regarding return-of-results and data sharing will help optimize protocols for WES/WGS. Baseline interviews including both qualitative and quantitative components were conducted with research participants (n=35) in the HealthSeq project, a longitudinal cohort study of individuals receiving personal WGS results. Data sharing preferences were recorded during informed consent. In the qualitative interview component, the dominant motivations that emerged were obtaining personal disease risk information, satisfying curiosity, contributing to research, self-exploration and interest in ancestry, and the dominant concern was the potential psychological impact of the results. In the quantitative component, 57% endorsed concerns about privacy. Most wanted to receive all personal WGS results (94%) and their raw data (89%); a third (37%) consented to having their data shared to the Database of Genotypes and Phenotypes (dbGaP). Early adopters of personal WGS in the HealthSeq project express a variety of health- and non-health-related motivations. Almost all want all available findings, while also expressing concerns about the psychological impact and privacy of their results. PMID:26036856

  19. [Regional and national priorities in health research, Peru 2010-2014: a process with a participative and decentralist approach].

    PubMed

    Caballero, Patricia; Yagui, Martin; Espinoza, Manuel; Castilla, Teresa; Granados, Arturo; Velásquez, Aníbal; Cabezas, César

    2010-09-01

    Peru has performed many efforts to identify national health research priorities since 1974 through processes historically planned based on expert opinions, with little impact. It was decided to generate a change in the management of research in order to overcome the weaknesses of the previous processes, applying a methodology with a participative and decentralized approach. In order to establish the regional and national research priorities of the key stakeholders, the Instituto Nacional de Salud (Peru) developed a process of citizenship consult through three phases i) advocacy and workshops in 20 regions; ii) a workshop for the analysis of the Concerted National Health Plan with 200 experts in Lima; iii) the national forum, with 500 representatives in 50 working tables. The research priorities of Peru for the period 2010- 2014 are: research to recognize the problems of health human resources, to recognize the mental health problems, impact evaluations of the social programs for reduction of children malnutrition, impact evaluation of social programs of the actual interventions in maternal mortality and operative research and impact evaluation of interventions in communicable diseases. PMID:21152733

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

    PubMed

    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. PMID:26331448