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Sample records for research participants undergoing

  1. Children's Participation in Research

    ERIC Educational Resources Information Center

    Brostrom, Stig

    2012-01-01

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

  2. 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

  3. Children's Participation Rights in Research

    ERIC Educational Resources Information Center

    Powell, Mary Ann; Smith, Anne B.

    2009-01-01

    This article explores children's participation in research, from the perspectives of researchers who have conducted research with children. Researchers' reports, gained using an email interviewing method, suggest that children's participation rights are particularly compromised when the potential child participants are considered vulnerable and…

  4. Research participation as a contract.

    PubMed

    Lawson, Craig

    1995-01-01

    In this article, I present a contractualist conception of human-participant research ethics, arguing that the most appropriate source of the rights and responsibilities of researcher and participant is the contractual understanding between them. This conception appears to explain many of the more fundamental ethical incidents of human-participant research. I argue that a system of contractual rights and responsibilities would allow a great deal of research that has often been felt to be ethically problematic, such as research involving deception, concealed research, and research on dependent populations. However, in defining the conditions under which such research should be permissible, my contractualist theory also makes it clear that there are limits -- and explains what those limits are -- to the propriety of such research.

  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. Research would not be possible without participants.

    PubMed

    Halcomb, Elizabeth; Peters, Kath

    2016-09-01

    Research would not be possible without participants. While this may seem like an obvious statement, all too often researchers underestimate the importance of the participants in their work, and the impact that researcher relationships can have on participation and data quality. PMID:27641698

  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. 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…

  12. 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…

  13. eParticipation: The Research Gaps

    NASA Astrophysics Data System (ADS)

    Macintosh, Ann; Coleman, Stephen; Schneeberger, Agnes

    eParticipation is a challenging research domain comprising a large number of academic disciplines and existing in a complex social and political environment. In this paper we identify eParticipation research needs and barriers and in so doing indicate future research direction. We do this by first setting the context for eParticipation research. We then consider the current situation and analyse the challenges facing future research. The future research direction was identified through conducting workshops and analysing published papers. The results are six main research challenges: breadth of research field; research design; technology design; institutional resistance; equity, and theory. These six challenges are described in detail along with the research direction to address them.

  14. 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

  15. 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…

  16. 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

  17. 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.

  18. Research with protected populations--vulnerable participants.

    PubMed

    Rogers, Bonnie

    2005-04-01

    Workers as study participants are a vulnerable population and additional considerations for their protection in research are needed. Issues related to invasion of privacy and coercion to participate in research studies must be carefully weighed and closely monitored. Worker autonomy must be fostered with respect to assuring that informed consent is given, meaning the information transferred is understood. Research will add to the body of knowledge and advance nursing practice, but one must always remember that risks and benefits must be balanced to achieve appropriate end results.

  19. 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.

  20. 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

  1. Restricted treatments, inducements, and research participation.

    PubMed

    Edwards, Sarah J L

    2006-04-01

    In this paper, I support the claim that placing certain restrictions on public access to possible new treatments is morally problematic under some exceptional circumstances. Very ill patients may find that all available standard treatments are unacceptable, either because they are ineffective or have serious adverse effects, and these patients may understandably be desperate to try something new even if this means stepping into the unknown. Faced with certain death, it is rational to want to try something new and to chance a dire outcome. Restricting possible new treatments to research trials may put these treatments scientifically, geographically or economically out of reach of these patients. For those who can get access, research restrictions could weaken, though not necessarily eliminate, the value of consent participants of such trials are able to give. Some participants may therefore be exploited for scientific purposes in the name of public interest. There are nonetheless compelling reasons for keeping some restrictive regulation in this area.

  2. 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.

  3. 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

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

    ERIC Educational Resources Information Center

    Franks, Myfanwy

    2011-01-01

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

  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.

  6. 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

  7. Research participants' perspectives on genotype-driven research recruitment.

    PubMed

    Beskow, Laura M; Namey, Emily E; Cadigan, R Jean; Brazg, Tracy; Crouch, Julia; Henderson, Gail E; Michie, Marsha; Nelson, Daniel K; Tabor, Holly K; Wilfond, Benjamin S

    2011-12-01

    Genotype-driven recruitment is a potentially powerful approach for studying human genetic variation but presents ethical challenges. We conducted in-depth interviews with research participants in six studies where such recruitment occurred. Nearly all responded favorably to the acceptability of recontact for research recruitment, and genotype-driven recruitment was viewed as a positive sign of scientific advancement. Reactions to questions about the disclosure of individual genetic research results varied. Common themes included explaining the purpose of recontact, informing decisions about further participation, reciprocity, "information is valuable," and the possibility of benefit, as well as concerns about undue distress and misunderstanding. Our findings suggest contact about additional research may be least concerning if it involves a known element (e.g., trusted researchers). Also, for genotype-driven recruitment, it may be appropriate to set a lower bar for disclosure of individual results than the clinical utility threshold recommended more generally.

  8. Researching with young people as participants: issues in recruitment.

    PubMed

    James, Ainsley; Taylor, Bev; Francis, Karen

    2013-11-30

    Abstract An essential element of human research is the successful recruitment of participants. Many researchers appear to be able to recruit participants quickly and without significant issues, while other researchers have more challenges. This paper presents some issues encountered when recruiting participants for a phenomenological research project on the lived experiences of young people aged 16-24 years, with type 1 diabetes living in a rural setting. Insights and strategies are presented to assist researchers when recruiting young people to their research.

  9. Researching with young people as participants: Issues in recruitment.

    PubMed

    James, Ainsley; Taylor, Bev; Francis, Karen

    2014-01-01

    Abstract An essential element of human research is the successful recruitment of participants. Many researchers appear to be able to recruit participants quickly and without significant issues, while other researchers have more challenges. This paper presents some issues encountered when recruiting participants for a phenomenological research project on the lived experiences of young people aged 16-24 years, with type 1 diabetes living in a rural setting. Insights and strategies are presented to assist researchers when recruiting young people to their research.

  10. Determining the factors associated with health research participation.

    PubMed

    Gucciardi, Enza; Di Liao, Chen; Cameron, Jill I

    2010-01-01

    This study explores factors and attitudes that affect willingness to participate in health research in an ambulatory population of 175 individuals. Respondents reported on their sociodemographic characteristics and rated statements on a questionnaire regarding their likelihood to participate in and attitudes toward health research. Multivariate ordinal regression analysis revealed that having more positive and less negative attitudes toward health research, access to the Internet, previous participation experience, higher education, and being Canadian-born contribute to a greater willingness to participate in health research. Understanding factors that influence research participation can help identify and direct efforts to improve research volunteer recruitment. PMID:20539155

  11. 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,…

  12. 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.

  13. 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…

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

    PubMed

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

    2012-12-01

    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.

  15. 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…

  16. 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

  17. 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…

  18. More than Tuskegee: understanding mistrust about research participation.

    PubMed

    Scharff, Darcell P; Mathews, Katherine J; Jackson, Pamela; Hoffsuemmer, Jonathan; Martin, Emeobong; Edwards, Dorothy

    2010-08-01

    This paper describes results of a qualitative study that explored barriers to research participation among African American adults. A purposive sampling strategy was used to identify African American adults with and without previous research experience. A total of 11 focus groups were conducted. Groups ranged in size from 4-10 participants (N=70). Mistrust of the health care system emerged as a primary barrier to participation in medical research among participants in our study. Mistrust stems from historical events including the Tuskegee syphilis study and is reinforced by health system issues and discriminatory events that continue to this day. Mistrust was an important barrier expressed across all groups regardless of prior research participation or socioeconomic status. This study illustrates the multifaceted nature of mistrust, and suggests that mistrust remains an important barrier to research participation. Researchers should incorporate strategies to reduce mistrust and thereby increase participation among African Americans.

  19. More than Tuskegee: Understanding Mistrust about Research Participation

    PubMed Central

    Scharff, Darcell P.; Mathews, Katherine J.; Jackson, Pamela; Hoffsuemmer, Jonathan; Martin, Emeobong; Edwards, Dorothy

    2015-01-01

    This paper describes results of a qualitative study that explored barriers to research participation among African American adults. A purposive sampling strategy was used to identify African American adults with and without previous research experience. A total of 11 focus groups were conducted. Groups ranged in size from 4–10 participants (N = 70). Mistrust of the health care system emerged as a primary barrier to participation in medical research among participants in our study. Mistrust stems from historical events including the Tuskegee syphilis study and is reinforced by health system issues and discriminatory events that continue to this day. Mistrust was an important barrier expressed across all groups regardless of prior research participation or socioeconomic status. This study illustrates the multifaceted nature of mistrust, and suggests that mistrust remains an important barrier to research participation. Researchers should incorporate strategies to reduce mistrust and thereby increase participation among African Americans. PMID:20693733

  20. 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…

  1. 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…

  2. 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.

  3. 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.

  4. Increasing Minority Participation in Biomedical and Nursing Research.

    ERIC Educational Resources Information Center

    Huttlinger, Kathleen; Drevdahl, Denise

    1994-01-01

    A federally funded research project, Minority Biomedical Research Support (MBRS), provided opportunities for Native Americans to participate in and gain experience with a research project. MBRS programs can provide a model and means for nurse researchers to conduct worthwhile investigations and provide research training for minority students.…

  5. 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.

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

    PubMed

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

    2015-02-01

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

  7. Participative Decision-Making. Research Action Brief Number 2.

    ERIC Educational Resources Information Center

    ERIC Clearinghouse on Educational Management, Eugene, OR.

    This report examines the role of participative decision-making in education by reviewing significant research on the involvement of teachers in educational policy-making. The discussion attempts to put participative decision-making (PDM) in perspective by highlighting empirical research on how well PDM works and by identifying some of the…

  8. Research participants' opinions on genetic research and reasons for participation: a Jackson Heart Study focus group analysis.

    PubMed

    Walker, Evelyn R; Nelson, Cheryl R; Antoine-LaVigne, Donna; Thigpen, Darcel T; Puggal, Mona A; Sarpong, Daniel E; Smith, Alice M

    2014-01-01

    The Jackson Heart Study (JHS) convened focus groups to engage the community in dialogue on participation in the National, Heart, Lung and Blood Institute's Candidate Gene Resource (CARe) project. CARe, a genome wide association and candidate gene study, required the release of participant phenotypic and genotypic data with storage at NIH for widespread distribution to qualified researchers. The authors wanted to assess the willingness of an African American community to participate in the genetics research, given the past history of bioethical misconduct in ethnic minority communities. The discussion produced the following specific issues of interest: reasons for participants' interest in genetics research; participants' knowledge about the JHS; and participants' knowledge about genetics research and its advantages and disadvantages. Training on genetic issues was also developed for the JHS community and staff.

  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.

  10. 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

  11. Challenges of Introducing Participant Observation to Community Health Research

    PubMed Central

    2014-01-01

    Participant observation elicits unique observation data from both an insider's and an outsider's perspectives. Despite the growing tendency to adopt participant observation strategies in health care research regarding health-related beliefs and types of behavior, the use of participant observation in current research is mostly limited to structured clinical settings rather than community settings. In this paper, we describe how we use participant observation in a community health research study with Chinese-born immigrant women. We document discrepancies between these women's beliefs and types of behavior regarding health and health promotion. We further discuss the ethnical, time, and setting challenges in community health research using participant observation. Possible solutions are also discussed. PMID:24527223

  12. Challenges of introducing participant observation to community health research.

    PubMed

    Zhao, Meng; Ji, Yingchun

    2014-01-01

    Participant observation elicits unique observation data from both an insider's and an outsider's perspectives. Despite the growing tendency to adopt participant observation strategies in health care research regarding health-related beliefs and types of behavior, the use of participant observation in current research is mostly limited to structured clinical settings rather than community settings. In this paper, we describe how we use participant observation in a community health research study with Chinese-born immigrant women. We document discrepancies between these women's beliefs and types of behavior regarding health and health promotion. We further discuss the ethnical, time, and setting challenges in community health research using participant observation. Possible solutions are also discussed.

  13. Doing participant observation in a psychiatric hospital-- research ethics resumed.

    PubMed

    Oeye, Christine; Bjelland, Anne Karen; Skorpen, Aina

    2007-12-01

    Social scientists who employ participant observation methods in medical settings are often held accountable for their research methods, specifically in regard to medical research ethics. However, the medical research ethics tradition rubs uneasily against participant observation and the anthropological understanding of the research process. The underlying premise for considering research ethics in the current case is the notion of the vulnerability of psychiatric patients as a participant group. Based on this notion of vulnerability among psychiatric patients, this article discusses the epistemological grounds for vulnerability in anthropological and medical research ethics. The authors draw on their experience with the Regional Committee for Medical Research Ethics in Norway, and the consequences of the guidelines used for participant observation as a research method in a psychiatric hospital. Social science researchers are required to follow medical ethical guidelines, such as informed consent, the principle of voluntariness, and estimation of risks and benefits. Ethnographers have found these guidelines to be obstructive when doing social science research in a psychiatric hospital. The article suggests the need for reformulation of research guidelines for participant observation in medical settings.

  14. 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.

  15. Participant Observation as a Research Technique for Camping.

    ERIC Educational Resources Information Center

    Henderson, Karla A.; Bialeschki, M. Deborah

    Two participant observers evaluated the week-long camp experience of adult women in order to assess the appropriateness of participant observation research methods in the camp setting, to identify strengths and weaknesses of this method, and to develop guidelines for its use. The study was part of a larger evaluation of the 9th annual Women's Week…

  16. 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…

  17. 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

  18. Paternalism and utilitarianism in research with human participants.

    PubMed

    Resnik, David B

    2015-03-01

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

  19. Paternalism and utilitarianism in research with human participants.

    PubMed

    Resnik, David B

    2015-03-01

    In this article I defend a rule utilitarian approach to paternalistic policies in research with human participants. Some rules that restrict individual autonomy can be justified on the grounds that they help to maximize the overall balance of benefits over risks in research. The consequences that should be considered when formulating policy include not only likely impacts on research participants, but also impacts on investigators, institutions, sponsors, and the scientific community. The public reaction to adverse events in research (such as significant injury to participants or death) is a crucial concern that must be taken into account when assessing the consequences of different policy options, because public backlash can lead to outcomes that have a negative impact on science, such as cuts in funding, overly restrictive regulation and oversight, and reduced willingness of individuals to participate in research. I argue that concern about the public reaction to adverse events justifies some restrictions on the risks that competent, adult volunteers can face in research that offers them no significant benefits. The paternalism defended here is not pure, because it involves restrictions on the rights of investigators in order to protect participants. It also has a mixed rationale, because individual autonomy may be restricted not only to protect participants from harm but also to protect other stakeholders. Utility is not the sole justification for paternalistic research policies, since other considerations, such as justice and respect for individual rights/autonomy, must also be taken into account. PMID:23076346

  20. (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

  1. Research participants' attitudes towards the confidentiality of genomic sequence information.

    PubMed

    Jamal, Leila; Sapp, Julie C; Lewis, Katie; Yanes, Tatiane; Facio, Flavia M; Biesecker, Leslie G; Biesecker, Barbara B

    2014-08-01

    Respecting the confidentiality of personal data contributed to genomic studies is an important issue for researchers using genomic sequencing in humans. Although most studies adhere to rules of confidentiality, there are different conceptions of confidentiality and why it is important. The resulting ambiguity obscures what is at stake when making tradeoffs between data protection and other goals in research, such as transparency, reciprocity, and public benefit. Few studies have examined why participants in genomic research care about how their information is used. To explore this topic, we conducted semi-structured phone interviews with 30 participants in two National Institutes of Health research protocols using genomic sequencing. Our results show that research participants value confidentiality as a form of control over information about themselves. To the individuals we interviewed, control was valued as a safeguard against discrimination in a climate of uncertainty about future uses of individual genome data. Attitudes towards data sharing were related to the goals of research and details of participants' personal lives. Expectations of confidentiality, trust in researchers, and a desire to advance science were common reasons for willingness to share identifiable data with investigators. Nearly, all participants were comfortable sharing personal data that had been de-identified. These findings suggest that views about confidentiality and data sharing are highly nuanced and are related to the perceived benefits of joining a research study.

  2. 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

  3. 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…

  4. 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…

  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.

  6. 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

  7. 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

  8. The storybook method: research feedback with young participants.

    PubMed

    Anderson, Kate; Balandin, Susan

    2011-12-01

    Children are valuable informants for social research; however, their participation presents additional ethical and practical challenges. Of these challenges, feedback to verify the researchers' interpretations drawn from children's data, and the dissemination of project findings to young participants, have proven difficult to overcome. In this paper, we outline the Storybook method, an approach to feedback in research with young children. In the example study, illustrations, interactive pop-ups, and third-person disclosure were used to aid children aged 7-9 years to overcome the power imbalance in interviews with adults. The Storybook method facilitated active participation in the validation process. Potential modifications of the method for use with older populations, including adults with intellectual disabilities, complex communication needs, and those requiring alternate access to written texts, are also explored.

  9. Communications with research participants and communities: foundations for best practices.

    PubMed

    Parkin, Rebecca T

    2004-11-01

    Communities and research participants increasingly feel that they have rights to be equal partners with researchers and to have access to the results of studies to which they have contributed. Concurrently, research sponsors have become aware of legal liabilities, societal repercussions, and credibility impacts of ignoring research communication responsibilities. However, issues related to research communications are rarely discussed at professional meetings or taught in academic programs. As a result, individual investigators may not be clear about their duties to communicate the results of their research. It is important to address this gap between expectations and abilities, because researchers' lack of communication fosters a climate of distrust in science and implies disinterest or disrespect for participants and communities. Ethical, legal, and professional frameworks and practices were reviewed to develop insights about principles, guidelines, and means that can be used to promote best practices. A review of general research guidance and specific requests for proposals revealed sponsors' communication priorities. While there are barriers to research communication, there is an increasing awareness among sponsors and investigators that effective and responsive communication is not a cheap or uniform add-on to a project or proposal. Communications must be tailored to the project considering all potential stakeholders, and resources need to be allocated specifically for communication activities within projects. Researchers, sponsors, professional societies and academia all have opportunities to improve principles, policies, frameworks, guidelines and strategies to foster "best practice" communication of research results.

  10. 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

  11. The return of results of deceased research participants.

    PubMed

    Tassé, Anne Marie

    2011-01-01

    The death of a research participant raises numerous ethical and legal issues regarding the return of research results to related family members. This question is particularly acute in the context of genetic research since the research results from an individual may be relevant to each of the biological relatives. This paper first investigates the ethical and legal frameworks governing the return of a deceased participant's individual research results to his or her related family members. Then, it weighs the rights and interests of both the deceased individual and related family members in an attempt to identify key ethical considerations underlying the return of such results. This analysis of international guidelines and national laws and regulations reveals that though the legal framework regarding privacy and confidentiality of clinical and research information is well established (albeit not homogenous), guidelines are generally absent in the post-mortem context. Nevertheless, a brief analysis of this issue through two ethical perspectives (principlism and consequentialism) allows us to identify six key elements to be taken into consideration when returning a deceased participant's research results.

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

    PubMed

    Furtado, Juarez Pereira; Campos, Rosana Onocko

    2008-11-01

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

  13. Ethical issues surrounding human participants research using the Internet.

    PubMed

    Keller, Heidi E; Lee, Sandra

    2003-01-01

    The Internet appears to offer psychologists doing research unrestricted access to infinite amounts and types of data. However, the ethical issues surrounding the use of data and data collection methods are challenging research review boards at many institutions. This article illuminates some of the obstacles facing researchers who wish to take advantage of the Internet's flexibility. The applications of the APA ethical codes for conducting research on human participants on the Internet are reviewed. The principle of beneficence, as well as privacy and confidentiality, informed consent, deception, and avoiding harm are all illustrated through the use of a hypothetical online study.

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

    ERIC Educational Resources Information Center

    Cuthill, Michael; Schmidt, Christopher

    2011-01-01

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

  15. 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…

  16. 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

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

    ERIC Educational Resources Information Center

    Jung, Charles; And Others

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

  18. 1981 and 1982 Faculty and Student Research Participation Program Evaluation.

    ERIC Educational Resources Information Center

    Howard, Lee

    This publication was developed as a basic tool to measure success of Oak Ridge Associated Universities (ORAU) University Programs Division in achieving goals of the Faculty and Student Research Participation Programs operated for the U.S. Department of Energy (DOE). Three questionnaires were created to directly address the goals and objectives of…

  19. 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…

  20. 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…

  1. Willingness of subjects with thought disorder to participate in research.

    PubMed

    Candilis, Philip J; Geppert, Cynthia M A; Fletcher, Kenneth E; Lidz, Charles W; Appelbaum, Paul S

    2006-01-01

    Greater attention is being focused on the willingness and motivations of potential subjects who are recruited for research protocols. Given the importance of subjects' abilities to choose freely and reason through their decisions about entering psychiatric research, empirical researchers have been developing assessment and education tools that address the potential vulnerabilities of research subjects. In this study subjects' responses and reasons for or against participation were elicited as part of an assessment of their research decision making. Fifty-two persons diagnosed with a thought disorder were asked to consider a hypothetical research study using the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR). Their responses were documented, coded for content, and correlated with demographic characteristics and scores on scales rating psychosis, cognition, and health-related quality of life. Subjects expressed common considerations that have been identified by other psychiatric investigators, as well as by those studying nonpsychiatric protocols. In general, reasons were both appropriate to the study being considered and appropriately linked to common considerations that flowed logically from the study. However, elements of the therapeutic misconception were evident as well. Willingness to participate was correlated with higher MacCAT-CR scores on certain scales, better education, and lower levels of psychosis and cognitive impairment. These findings highlight both the strengths and weaknesses of the decision making of research subjects with thought disorder. Research protections and assessments may consequently be appropriately targeted to specific vulnerabilities. Because of differences in severity of illness, cognition, and reasoning among subjects who decline to participate in research, greater attention to this population appears warranted.

  2. 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

  3. Confining choices: should inmates' participation in research be limited?

    PubMed

    Pasquerella, Lynn

    2002-01-01

    Historically, prisoners in the United States have served as an inexpensive and readily available source of human subjects for research. Coinciding with the civil rights movement, however, was an emerging conception of prisoners' rights that led to the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research being charged with investigating the use of prisoners as research subjects. The recommendations that evolved and the subsequent guidelines that have been implemented by the Department of Health and Human Services significantly curtail the use of prisoners as research subjects. While these measures are designed to protect inmates from the abuses of the past, of particular concern to many health care officials is exclusion of inmates from experimental HIV/AIDS and hepatitis treatments. This paper addresses whether the vulnerability of prisoners in the United States due to their incarceration is sufficient to prohibit them from participation in clinical trials that offer the possibility of life-saving treatment. It first outlines the evolution in moral thinking that has led to laws broadly prohibiting prisoners from biomedical research studies and then analyzes cases in the law to develop ethical arguments in support of the view that prisoners should be allowed to participate in clinical trials. The conclusion is that prisoners should be allowed to participate in such trials.

  4. Participant overexposure and the role of researcher judgement.

    PubMed

    Lipscomb, Martin

    2010-01-01

    Ethical conduct discussion often focuses on decisions made before and during the research process. In contrast, this paper offers a reflective and personal post-factum critique of two distinct elements of ethical practice that emerged from a recent study of aspects of activity at a hospice in England. First, it is suggested that researcher judgement in protecting participants from 'overexposure' may have been insufficiently developed. Second, it is proposed that an unnecessarily individualist (biomedical) model of ethical good practice was uncritically accepted and that assumptions inherent in this approach should have been more thoroughly questioned. In conducting this study 'usual' measures were taken to protect from harm the individuals and organisation taking part. Before collecting data, which took the form of interview transcripts and notes made by the researcher in his role as staff nurse (participant observation), ethical approval was secured. Interviewees were known to the interviewer prior to interview.

  5. Issues affecting minority participation in research studies of Alzheimer disease.

    PubMed

    Welsh, Kathleen A; Ballard, Edna; Nash, Florence; Raiford, Kate; Harrell, Lindy

    1994-01-01

    Despite the need for minority subjects in research studies of Alzheimer disease (AD), the successful involvement of minority patients in such studies has been difficult. This report discusses the many societal, economic, logistical, and attitudinal barriers that have inhibited the participation of minority patients and their families in medical research programs of AD. Special consideration is given to the unique cultural issues that arise when conducting studies involving African-American elderly subjects. Methods are considered for overcoming the barriers to participation gleaned from the national study CERAD (Consortium to Establish a Registry of Alzheimer Disease) and other investigations of AD. Recommendations are made for future research programs targeted on the specific health care needs and concerns of the minority segments of our population.

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

    PubMed

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

    2012-06-30

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

  7. 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

  8. 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.

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

    PubMed

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

    2005-12-01

    In order to improve recruitment for cervical cancer screening trials, it is necessary to analyze the effectiveness of recruitment strategies used in current trials. A trial to test optical spectroscopy for the diagnosis of cervical neoplasia recruited 1000 women from the community; the trial evaluated the emerging technology against Pap smears and colposcopically directed biopsies for cervical dysplasia. We have examined women's reasons for participating as well as the effectiveness and efficiency for each recruitment strategy. Reasons for participation were identified and compared between trials. The recruitment method that resulted in the most contacts was newspaper reportorial coverage and advertising, followed by family and friends, then television news coverage. The most cost-effective method for finding eligible women who attend the research appointment is word of mouth from a family member or friend. Recommendations are given for maximizing the efficiency of recruitment for cervical cancer screening trials. PMID:16143374

  10. 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

  11. 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

  12. 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.

  13. 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

  14. Investigating minority student participation in an authentic science research experience

    NASA Astrophysics Data System (ADS)

    Preston, Stephanie Danette

    In the United States, a problem previously overlooked in increasing the total number of scientifically literate citizens is the lack of diversity in advanced science classes and in science, technology, engineering, and mathematics (STEM) fields. Groups traditionally underserved in science education and thus underrepresented in the STEM fields include: low-income, racial/ethnic minorities, and females of all ethnic and racial backgrounds. Despite the number of these students who are initially interested in science very few of them thrive in the discipline. Some scholars suggest that the declining interest for students underrepresented in science is traceable to K-12th grade learning experiences and access to participating in authentic science. Consequently, the diminishing interest of minorities and women in science contributes negatively to the representation of these groups in the STEM disciplines. The purpose of this study was to investigate a summer science research experience for minority students and the nature of students' participation in scientific discourse and practices within the context of the research experience. The research questions that guided this study are: The nature of the Summer Experience in Earth and Mineral Science (SEEMS) research experience . (A) What are the SEEMS intended outcomes? (B) To what extent does SEEMS enacted curriculum align with the intended outcomes of the program? The nature of students engagement in the SEEMS research. (A) In what ways do students make sense of and apply science concepts as they engage in the research (e.g., understand problem, how they interpret data, how they construct explanations), and the extent to which they use the science content appropriately? (B) In what ways do students engage in the cultural practices of science, such as using scientific discourse, interpreting inscriptions, and constructing explanations from evidence (engaging in science practices, knowing science and doing science)? The

  15. 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

  16. 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

  17. 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

  18. 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.

  19. 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

  20. Studying genetic research participants: lessons from the "Learning About Research in North Carolina" study.

    PubMed

    Corbie-Smith, Giselle; Blumenthal, Connie; Henderson, Gail; Garrett, Joanne; Bussey-Jones, Jada; Moloney, Mairead; Sandler, Robert S; Lloyd, Stacey W; Dorrance, Jessica; Darter, Jane

    2008-08-01

    Given the prohibitive cost of recruiting large and diverse populations for genetic explorations in cancer research, there has been a call for genetic studies to engage existing cohorts of research participants. This strategy could lead to more efficient recruitment and potentially result in significant advances in the understanding of cancer etiology and treatment. The Learning About Research in North Carolina (LeARN) study responded to the National Human Genome Research Institute interest in research on how study participants from diverse populations who had participated in genetic research perceived the risks and benefits of participating in combined epidemiologic-genetic research, how well they understand the purpose of the research and the uses to which the research results may be put, and how involvement in such research affects perceptions of disease causality. In this article, we give an overview of the LeARN study, summarizing the methods we used, challenges we encountered, and lessons learned about recruiting participants who have previously participated in genetic research.

  1. 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…

  2. 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.

  3. Research output after participants complete a Structured Operational Research and Training (SORT IT) course.

    PubMed

    Guillerm, N; Tayler-Smith, K; Dar Berger, S; Bissell, K; Kumar, A M V; Ramsay, A; Reid, A J; Zachariah, R; Harries, A D

    2015-12-21

    Eighteen months after successfully completing one of six Structured Operational Research and Training Initiative (SORT IT) courses, e-mail questionnaires assessing post-course research output were returned by 63 participants (100% response rate). Thirty-two (51%) participants had completed new research projects, 24 (38%) had published papers, 28 (44%) had presented abstracts at conferences, 15 (24%) had facilitated at further OR courses, and 21 (33%) had reviewed scientific papers. Seven (11%) had secured further research funding and 22 (35%) stated that their institutions were involved in implementation or capacity building in operational research. Significant research output continues beyond course completion, further endorsing the value of the SORT IT model.

  4. Attitudes of Research Participants and the General Public Regarding Disclosure of Alzheimer Disease Research Results

    PubMed Central

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

    2015-01-01

    IMPORTANCE Results of Alzheimer disease (AD) research assessments typically are not disclosed to participants. Recent research has suggested interest in disclosure, but, to our knowledge, few studies have accounted for awareness of potential benefits and limitations of disclosure. OBJECTIVE To determine the attitudes of cognitively normal research participants and members of the general public regarding disclosure of AD research results. DESIGN, SETTING, AND PARTICIPANTS Participants in a longitudinal aging study (Alzheimer Disease Research Center [ADRC]) were given preintervention and postintervention surveys about disclosure attitudes. In a general public sample (The American Panel Survey), participants responded to a similar survey about disclosure attitudes. INTERVENTIONS Participants in the ADRC sample were randomly assigned to a group (n = 119) that read an education intervention about the usefulness of AD biomarkers or to a placebo group (n = 100) that read as its intervention general information about the ADRC. Participants in the general public sample read a brief vignette describing participation in a longitudinal AD study. MAIN OUTCOME AND MEASURE Interest in disclosure of AD research results. RESULTS Cognitively normal ADRC participants (n = 219) were 60.7% (n = 133) female, 83.6% (n = 183) of white race, and reported a mean of 15.91 years of education. Twenty-nine individuals refused participation. The American Panel Survey participants (n = 1418) indicated they did not have AD and were 50.5% (n = 716) female, 76.7% (n = 1087) of white race, and reported a mean of 13.85 years of education. Overall, 77.6% of eligible participants (1583 of 2041) completed the survey in July 2014. Interest in disclosure was high among the ADRC participants (55.1% [119 of 216] were “extremely interested”). Viewing the education intervention predicted lower interest in disclosure (odds ratio, 2.01; 95% CI, 1.15–3.53; P = .02). High subjective risk of AD, a family

  5. 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…

  6. 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…

  7. 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

  8. 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.

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

    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

  10. Performance Invalidity Base Rates Among Healthy Undergraduate Research Participants.

    PubMed

    Ross, Thomas P; Poston, Ashley M; Rein, Patricia A; Salvatore, Andrew N; Wills, Nathan L; York, Taylor M

    2016-02-01

    Few studies have examined base rates of suboptimal effort among healthy, undergraduate students recruited for neuropsychological research. An and colleagues (2012, Conducting research with non-clinical healthy undergraduates: Does effort play a role in neuropsychological test performance? Archives of Clinical Neuropsychology, 27, 849-857) reported high rates of performance invalidity (30.8%-55.6%), calling into question the validity of findings generated from samples of college students. In contrast, subsequent studies have reported much lower base rates ranging from 2.6% to 12%. The present study replicated and extended previous work by examining the performance of 108 healthy undergraduates on the Dot Counting Test, Victoria Symptom Validity Test, Word Memory Test, and a brief battery of neuropsychological measures. During initial testing, 8.3% of the sample scored below cutoffs on at least one Performance Validity Test, while 3.7% were classified as invalid at Time 2 (M interval = 34.4 days). The present findings add to a growing number of studies that suggest performance invalidity base rates in samples of non-clinical, healthy college students are much lower than An and colleagues initial findings. Although suboptimal effort is much less problematic than suggested by An and colleagues, recent reports as high as 12% indicate including measures of effort may be of value when using college students as participants. Methodological issues and recommendations for future research are presented.

  11. 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.

  12. Modeling participation in the NHII: operations research approach.

    PubMed

    Brennan, Patricia Flatley; Ferris, Michael; Robinson, Stephen; Wright, Stephen; Marquard, Jenna

    2005-01-01

    Regional health information organizations (RHIOs) form the core building blocks of any approach to creating the National Health Information Infrastructure. RHIOs are computer-supported information sharing alliances composed of health care institutions that need to exchange clinical, financial or administrative data. Many uncertainties, including institution conversion costs, price-to-participate, and RHIO governance decisions make estimating the cost consequences difficult to establish. Current approaches to health information technology investment rely on a net-present-value analysis, which is inadequate to capture the dynamic, uncertain course likely to occur in the RHIO environment. Methods from operations research provide decision makers robust tools for exploring the cost and consequences of RHIO structures. We present here an initial modeling approach that allows explicit examination of RHIO structure and pricing options. Once refined, these models will provide the core of a suite of decision support tools for evaluation of RHIO pricing options, discount rates, and optimal organizational structures.

  13. 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

  14. 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.

  15. 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…

  16. 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…

  17. Recovering from research: a no-fault proposal to compensate injured research participants.

    PubMed

    Pike, Elizabeth R

    2012-01-01

    National advisory committees have considered the obligations owed to research participants in the event of research-related injuries. These committees have repeatedly concluded that injured research participants are entitled to compensation for their injuries, that the tort system provides inadequate remedies, and that the United States should adopt no-fault compensation. But because the advisory committees have made no concrete proposals and have taken no steps toward implementing no-fault compensation, the United States continues to rely on the tort system to compensate injured research participants. This Article argues that recent legal developments and a transformation in the global research landscape make maintaining the status quo morally indefensible and practically unsustainable. Recent legal developments exacerbate the longstanding difficulties associated with the tort system as a method of compensation; nearly every injured research participant will have difficulty recovering damages, and certain classes of injured research participants--those in federal research and those abroad--are prevented from recovering altogether, resulting in substantial unfairness. In the past ten years, many of the countries substantially involved in research have mandated systematic compensation. By not mandating compensation, the United States has become a moral outlier and risks having its noncompliant research embargoed by foreign ethics committees, thereby delaying important biomedical advances. This Article examines alternative compensation mechanisms and offers a concrete no-fault compensation proposal built on systems already in place. The proposed system can be implemented in the United States and countries around the world to help harmonize various national compensation systems and to more equitably and effectively make those injured by research whole.

  18. 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…

  19. Potential research participants' views regarding researcher and institutional financial conflicts of interest

    PubMed Central

    Kim, S; Millard, R; Nisbet, P; Cox, C; Caine, E

    2004-01-01

    Background: Financial conflict of interest in clinical research is an area of active debate. While data exist on the perspectives and roles of academic institutions, investigators, industry sponsors, and scientific journals, little is known about the perspectives of potential research participants. Methods: The authors surveyed potential research participants over the internet, using the Harris Interactive Chronic Illness Database. A potential research participant was defined by: (1) self report of diagnosis by a health care professional and (2) willingness to participate in clinical trials. Email invitations were sent to 20 205 persons with coronary artery disease, breast cancer, or depression; a total of 6363 persons were screened; of these, 86% or 5478 met inclusion criteria and completed the survey. The outcome measures were respondents' ratings on: importance of knowing conflict of interest information, whether its disclosure ought to be required, and its effect on willingness to participate—across seven widely discussed scenarios of financial conflicts of interest (ranging from commercial funding to equity ownership). Results: Majority responded that knowing conflict of interest information was "extremely" or "very" important; a larger majority felt financial conflicts of interest should be disclosed as part of informed consent (64% to 87%). In all seven scenarios, a majority was still willing to participate but in some scenarios a sizable minority would be wary of participation. Respondents were more wary of individual than institutional conflicts of interest. Illness group and sociodemographic factors had modest effects and did not affect the main trends. Conclusions: The prevailing practice of non-disclosure of financial conflicts of interest in clinical research appears contrary to the values of potential research participants. PMID:14872080

  20. 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

  1. Rare lung disease research: strategies for improving identification and recruitment of research participants.

    PubMed

    Gupta, Samir; Bayoumi, Ahmed M; Faughnan, Marie E

    2011-11-01

    Research in rare lung diseases faces methodologic limitations by virtue of the small number of participants available to be studied. We explored several strategies that may improve researchers' ability to identify and recruit research participants with rare lung diseases. We provide an overview of strategies based on available evidence, previously used approaches, and reasoning. First, disease detection is generally poor and may be improved through strategies targeted at primary care practitioners or directly at patients, thus increasing the pool of patients available for research studies. Next, standardization of case definitions in rare lung diseases is often lacking, hindering research recruitment efforts because of confusion over appropriate recruitment criteria. Expert consensus statements can enhance both clinical care and research recruitment by standardizing definitions. Finally, recruitment strategies using rare lung disease registries, clinical research networks, novel Internet-based direct patient recruitment approaches, and patient organizations may facilitate recruitment of patients with rare lung diseases. In summary, although several strategies for improving the identification and recruitment of research participants with rare lung diseases have been proposed, published examples are few. Objective measurement and reporting of novel recruitment methods and collaboration among researchers facing the same limitations across various rare lung diseases are required. Advancements in this area are vital to the design and performance of much-needed robust clinical studies across the spectrum of rare lung diseases.

  2. 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

  3. 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…

  4. 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…

  5. 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

  6. 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.

  7. Effects of Disclosing Financial Interests on Participation in Medical Research: A Randomized Vignette Trial

    PubMed Central

    Weinfurt, Kevin P.; Hall, Mark A.; Friedman, Joëlle Y.; Hardy, N. Chantelle; Fortune-Greeley, Alice K.; Lawlor, Janice S.; Allsbrook, Jennifer S.; Lin, Li; Schulman, Kevin A.; Sugarman, Jeremy

    2010-01-01

    Background Little is known about the effects of investigators' financial disclosures on potential research participants. Methods We conducted a vignette trial in which 470 participants in a telephone survey were randomly assigned to receive a hypothetical informed consent document that contained 1 of 2 financial disclosures (per capita payments to the research institution, or equity ownership by the investigator) or no disclosure. The main outcome measures were trust in medical research and willingness to participate in a hypothetical clinical trial. Results Participants in the equity group reported less willingness to participate than participants in the per capita payments group (P = .01) and the no disclosure group (P = .03). Trust in the investigator was highest in the per capita payments group and lowest in the equity group (P < .001). Trust among participants who received no disclosure was also greater than trust among participants in the equity group (P = .04) but did not differ significantly from trust among participants in the per capita payments group (P = .15). Participants in the equity group made 3 times as many negative comments as participants in the per capita payments group; and 10 participants in the equity group spontaneously said they would not participate in the hypothetical trial because of the financial interest, compared with only 1 such participant from the other groups. Conclusions Although investigators' financial disclosures in research do not substantially affect willingness to participate, potential research participants are more troubled by equity interests than by per capita payments. PMID:18946893

  8. Mindfulness meditation research: issues of participant screening, safety procedures, and researcher training.

    PubMed

    Lustyk, M Kathleen B; Chawla, Neharika; Nolan, Roger S; Marlatt, G Alan

    2009-01-01

    Increasing interest in mindfulness meditation (MM) warrants discussion of research safety. Side effects of meditation with possible adverse reactions are reported in the literature. Yet participant screening procedures, research safety guidelines, and standards for researcher training have not been developed and disseminated in the MM field of study. The goal of this paper is to summarize safety concerns of MM practice and offer scholars some practical tools to use in their research. For example, we offer screener schematics aimed at determining the contraindication status of potential research participants. Moreover, we provide information on numerous MM training options. Ours is the first presentation of this type aimed at helping researchers think through the safety and training issues presented herein. Support for our recommendations comes from consulting 17 primary publications and 5 secondary reports/literature reviews of meditation side effects. Mental health consequences were the most frequently reported side effects, followed by physical health then spiritual health consequences. For each of these categories of potential adverse effects, we offer MM researchers methods to assess the relative risks of each as it pertains to their particular research programs.

  9. 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

  10. 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

  11. 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…

  12. 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

  13. 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…

  14. 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…

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

    ERIC Educational Resources Information Center

    Fox, Rachael

    2013-01-01

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

  16. 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…

  17. 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…

  18. 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.

  19. Attitudes and Beliefs of African Americans Toward Participation in Medical Research

    PubMed Central

    Corbie-Smith, Giselle; Thomas, Stephen B; Williams, Mark V; Moody-Ayers, Sandra

    1999-01-01

    OBJECTIVE To describe barriers to participation of African Americans in research. DESIGN Focus group interviews conducted in 1997. PATIENTS Thirty-three African-American adults presenting to an urban public hospital for outpatient medical care participated in one of five focus groups. MEASUREMENTS AND MAIN RESULTS African-American patients' attitudes toward medical research were measured. Mistrust of doctors, scientists, and the government was reported consistently by the participants. Many participants described concerns about the ethical conduct of clinicians and investigators when poor or minority patients are involved and cited examples of exploitation as supporting evidence for their mistrust of the medical establishment. While participants were clear about the violation of human rights in the Tuskegee Syphilis Study, all were misinformed of the historical facts of the study. Few participants understood the concept of informed consent. Participants saw signing the document as relinquishing their autonomy and as a legal protection for physicians. Despite these concerns, participants gave recommendations to improve minority participation in research. CONCLUSIONS African-American participants in this study described distrust of the medical community as a prominent barrier to participation in clinical research. Participants described real and perceived examples of exploitation to support their distrust of researchers. The goal of the consent process, to inform patients of risks and benefits so as to facilitate self-determination, was misinterpreted by these participants. Understanding the importance of interpersonal trust within the clinical relationship may prove to be a significant factor in enhancing participation in clinical trials. PMID:10491242

  20. 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…

  1. 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

  2. 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…

  3. 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…

  4. 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…

  5. 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…

  6. 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…

  7. Demographic Differences in Youth Out-of-School Time Participation: A Research Summary

    ERIC Educational Resources Information Center

    Harvard Family Research Project, 2007

    2007-01-01

    The Harvard Family Research Project conducted a research study on the factors associated with whether youth participate in organized out-of-school time (OST) programs and activities. National data was used to examine the many factors and contexts in children's lives that predict their participation. This research summary synthesizes findings from…

  8. Participation in Intellectual Disability Research: A Review of 20 Years of Studies

    ERIC Educational Resources Information Center

    Cleaver, S.; Ouellette-Kuntz, H.; Sakar, A.

    2010-01-01

    Background: Researchers have noted difficulties in attracting adequate numbers of participants with intellectual disabilities (ID) to their studies. Methods: This study was a review of participation by adults with ID in research conducted in South Eastern Ontario over a 20-year period (1987-2006). Original research studies were identified by local…

  9. 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.

  10. Rites of consent: negotiating research participation in diverse cultures.

    PubMed

    Barrett, Robert J; Parker, Damon B

    2003-04-01

    The significance of informed consent in research involving humans has been a topic of active debate in the last decade. Much of this debate, we submit, is predicated on an ideology of individualism. We draw on our experiences as anthropologists working in Western and non Western (Iban) health care settings to present ethnographic data derived from diverse scenes in which consent is gained. Employing classical anthropological ritual theory, we subject these observational data to comparative analysis. Our article argues that the individualist assumptions underlying current bioethics guidelines do not have universal applicability, even in Western research settings. This is based on the recognition that the social world is constitutive of personhood in diverse forms, just one of which is individualistic. We submit that greater attention must be paid to the social relations the researcher inevitably engages in when conducting research involving other people, be this in the context of conventional medical research or anthropological field work. We propose, firstly, that the consenting process continues throughout the life of any research project, long after the signature has been secured, and secondly, that both group and individual dimensions of consent, and the sequence in which these dimensions are addressed, should be carefully considered in all cases where consent is sought. PMID:15069953

  11. 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.

  12. 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…

  13. 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…

  14. 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…

  15. 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…

  16. 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…

  17. 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…

  18. 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…

  19. 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.

  20. Increasing Minority Research Participation Through Community Organization Outreach

    PubMed Central

    Alvarez, Roger A.; Vasquez, Elias; Mayorga, Carla C.; Feaster, Daniel J.; Mitrani, Victoria B.

    2008-01-01

    Recruitment is one of the most significant challenges in conducting research with ethnic minority populations. Establishing relationships with organizations that serve ethnic minority communities can facilitate recruitment. To create a successful recruitment process, a strategic plan of action is necessary prior to implementing community outreach efforts. For this study population of women who were HIV+ and recovering from substance abuse disorder, the authors found that establishing trust with community organizations that serve these women allows for a productive referral relationship. Although the majority of women in this study are African American, the authors were particularly challenged in recruiting Hispanic women. This article presents a recruitment process model that has facilitated our recruitment efforts and has helped the authors to organize, document, and evaluate their community outreach strategies. This model can be adopted and adapted by nurses and other health researchers to enhance engagement of minority populations. PMID:16829637

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

    ERIC Educational Resources Information Center

    Hall, Budd L.

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

  2. 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

  3. 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

  4. 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

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

    PubMed

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

    2016-09-01

    Background Conceptual frameworks are important to ensure a clear underpinning research philosophy. Further, the use of conceptual frameworks can support structured research processes. Aim To present a partnership model for a reflective narrative for researcher and participant. Discussion This paper positions the underpinning philosophical framework of the model in social constructionism (the idea that jointly constructed understandings form the basis for shared assumptions) and narrative enquiry. The model has five stages - study design, invitation to share a research space and partnership, a metaphorical research space, building a community story, and reading the community story to others. Core principles of the partnership model are continual reflection by the researcher, potential reflections by participants, reciprocal sharing, and partnership in research. Conclusion A 'trajectory of self' for both participants and researchers can be enhanced within reflective partnerships. Implications for practice This model can be applied to studies that use narrative enquiry and are seeking a humanistic approach with participant engagement. PMID:27641703

  6. Moving beyond good intentions: indigenous participation in aboriginal and Torres Strait islander health research.

    PubMed

    Kowal, Emma; Anderson, Ian; Bailie, Ross

    2005-10-01

    Indigenous participation in every aspect of health research is increasingly recognised as an important element of any research project that aims to improve Indigenous health. Despite the acceptance of its importance, when the concept of 'Indigenous participation' is mentioned, authors are often imprecise as to the nature and purpose of participation, and its relationship to improved health outcomes. This report attempts to bring some clarity to the variety of meanings we might give Indigenous participation in research. For the purposes of stimulating further debate, we identify four distinct, but overlapping, rationales: pragmatic, moral, interventionist, and epistemological. Each has different implications for how Indigenous participation should be implemented and evaluated. More debate on the meanings and purposes of Indigenous participation will contribute to a refined understanding of its potential benefits to health research.

  7. 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

  8. Attitudes towards clinical research among cancer trial participants and non-participants: an interview study using a Grounded Theory approach.

    PubMed

    Madsen, S M; Holm, S; Riis, P

    2007-04-01

    The attitudes of women patients with cancer were explored when they were invited to participate in one of three randomised trials that included chemotherapy at two university centres and a satellite centre. Fourteen patients participating in and 15 patients declining trials were interviewed. Analysis was based on the constant comparative method. Most patients voiced positive attitudes towards clinical research, believing that trials are necessary for further medical development, and most spontaneously argued that participation is a moral obligation. Most trial decliners, however, described a radical change in focus as they faced the actual personal choice. Almost no one got an impression of clinical equipoise between treatments in the trials, and most patients expressed discomfort with randomisation. A patient's choice to participate was mainly determined by whether the primary focus was on treatment effect or on adverse effects. Both knowledge about and feelings towards trials originated mostly from the media, although paradoxically the media were largely seen as untrustworthy. Mistrust was shown towards the pharmaceutical industry, and although most patients originally trusted that doctors primarily pursued the interest of patients, they did not trust the adequacy of doctors or industry in maintaining self-regulation. Thus, public control measures were judged to be essential.

  9. ‘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

  10. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ..., 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 foreign participants to lecture, teach, and engage in research. A...

  11. 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...

  12. 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...

  13. 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…

  14. 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…

  15. 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.…

  16. 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…

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

    PubMed

    Cox, Susan M; McDonald, Michael

    2013-12-01

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

  18. 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.

  19. Offering Aggregate Results to Participants in Genomic Research: Opportunities and Challenges

    PubMed Central

    Beskow, Laura M.; Burke, Wylie; Fullerton, Stephanie M.; Sharp, Richard R.

    2013-01-01

    Although issues involved in offering individual results to participants in genomic research have received considerable attention, communication of aggregate results has been the subject of relatively little ethical analysis. Offering participants aggregate results is typically assumed to be a good thing, and studies have found that a significant majority of biobank research participants, when asked about their interest in aggregate results, say that access to such information would be important. Even so, return of aggregate results remains a relatively uncommon practice. In this paper, we explore the opportunities involved in communicating aggregate results to participants in genomic research, including affirming the value of research participation, informing participants about research being conducted based on broad consent for future unspecified research, educating participants and the public about the research process, and building trust in the research enterprise. We also explore some of the challenges, including the complex intersection between individual and aggregate results, as well as practical hurdles. We conclude by offering our preliminary recommendations concerning the provision of aggregate results and an agenda for much-needed future research. PMID:22261761

  20. 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

  1. 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

  2. Policies of Academic Medical Centers for Disclosing Conflicts of Interest to Potential Research Participants

    PubMed Central

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

    2007-01-01

    Many professional organizations and governmental bodies recommend disclosing financial conflicts of interest to potential research participants. Three possible goals of such disclosures are to inform the decision making of potential research participants, to protect against liability, and to deter conflicts of interest. We reviewed US academic medical centers' policies regarding the disclosure of conflicts of interest in research. Forty-eight percent mentioned disclosing conflicts to potential research participants. Of those, 58% included verbatim language that could be used in informed consent documents. Considerable variability exists concerning the specific information that should be disclosed. Most of the institutions' policies are consistent with the goal of protection from legal liability. PMID:16436571

  3. Key Stakeholders’ Perceptions of Motivators for Research Participation among Individuals who are Incarcerated

    PubMed Central

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

    2015-01-01

    Understanding motivations of research participants is crucial for developing ethical research protocols, especially for research with vulnerable populations. Through interviews with 92 IRB 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 healthcare, 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

  4. 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

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

    PubMed

    Kerasidou, Angeliki

    2015-12-01

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

  6. Let’s Get Healthy! Health Awareness Through Public Participation in an Education and Research Exhibit

    PubMed Central

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

    2013-01-01

    Background Health information technology (HIT) offers a resource for public empowerment through tailored information. Objective Use interactive community health events to improve awareness of chronic disease risk factors while collecting data to improve health. Methods Let’s Get Healthy! is an education and research program in which participants visit interactive research stations to learn about their own health (diet, body composition, blood chemistry). HIT enables computerized data collection that presents participants with immediate results and tailored educational feedback. An anonymous wristband number links collected data in a population database. Results and Lessons Learned Communities tailor events to meet community health needs with volunteers trained to conduct research. Participants experience being a research participant and contribute to an anonymous population database for both traditional research purposes and open-source community use. Conclusions By integrating HIT with community involvement, health fairs become an interactive method for engaging communities in research and raising health awareness. PMID:22982846

  7. 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

  8. Latino beliefs about biomedical research participation: a qualitative study on the U.S.-Mexico border.

    PubMed

    Ceballos, Rachel M; Knerr, Sarah; Scott, Mary Alice; Hohl, Sarah D; Malen, Rachel C; Vilchis, Hugo; Thompson, Beti

    2014-10-01

    Latinos are under-represented in biomedical research conducted in the United States, impeding disease prevention and treatment efforts for this growing demographic group. We gathered perceptions of biomedical research and gauged willingness to participate through elicitation interviews and focus groups with Latinos living on the U.S.-Mexico border. Themes that emerged included a strong willingness to participate in biomedical studies and suggested that Latinos may be under-represented due to limited formal education and access to health information, not distrust. The conflation of research and clinical care was common and motivated participation. Outreach efforts and educational interventions to inform Latinos of participation opportunities and clarify harms and benefits associated with biomedical research participation will be essential to maintain trust within Latino communities.

  9. Latino Beliefs about Biomedical Research Participation: A Qualitative Study on the US-Mexico Border

    PubMed Central

    Ceballos, Rachel; Knerr, Sarah; Scott, Mary Alice; Hohl, Sarah; Malen, Rachel; Vilchis, Hugo; Thompson, Beti

    2015-01-01

    Latinos are under-represented in biomedical research conducted in the United States (US), impeding disease prevention and treatment efforts for this growing demographic group. We gathered perceptions of biomedical research and gauged willingness to participate through elicitation interviews and focus groups with Latinos living on the US-Mexico border. Themes that emerged included a strong willingness to participate in biomedical studies and suggested that Latinos may be under-represented due to limited formal education and access to health information, not distrust. The conflation of research and clinical care was common and motivated participation. Outreach efforts and educational interventions to inform Latinos of participation opportunities and clarify harms and benefits associated with biomedical research participation will be essential to maintain trust within Latino communities. PMID:25747293

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

    PubMed

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

    2011-09-01

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

  11. Incidental Computer Tomography Radiologic Findings through Research Participation in the North Texas Healthy Heart Study

    PubMed Central

    Espinoza, Anna; Malone, Kendra; Balyakina, Elizabeth; Fulda, Kimberly G.; Cardarelli, Roberto

    2014-01-01

    Background Although variation exists in the classification and practice of managing clinical findings in research, emerging views suggest that researchers bear some responsibility in the management of incidental findings. This study contributes to the documentation of the population characteristics and prevalence of medical findings incidental to research participation, specifically findings related to coronary calcium scores and computed tomography (CT) scans that investigated cardiovascular disparities in an asymptomatic population. Methods A total of 571 asymptomatic adult participants were recruited in the North Texas Healthy Heart Study. Participants completed a 16-slice CT scan of the heart and abdomen. Findings of radiology reports and 3 years of follow-up documentation were reviewed. Results A total of 246 clinically apparent findings were identified in 169 asymptomatic participants (32.9% of participants who completed a CT scan). Another 245 participants (48%) had findings of unknown significance, a total of 307 findings. At least 4 cases in this study led to a clinically significant intervention. Conclusion Although CT scans were completed for research purposes, study procedures resulted in the diagnosis and treatment of individuals who were previously asymptomatic. Potential clinical benefits in imaging research are moderated by considerations regarding possible harm and costs resulting from uncertain findings and the use of CT scans for nonclinical purposes. The continued development of protocols for the handling of incidental findings in research and the establishment of guidelines are needed to ensure that research procedures mirror the best interests of participants. PMID:24808109

  12. 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

  13. 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

  14. Paleoclimate of the Southern San Joaquin Valley, CA: Research Participation Opportunities for Improving Minority Participation and Achievement in the Geosciences

    NASA Astrophysics Data System (ADS)

    Baron, D.; Negrini, R.; Palacios-Fest, M. R.

    2004-12-01

    Numerous studies have shown that one of the best ways to draw students into geoscience programs is to expose them and their teachers to research projects designed to investigate issues relevant to their lives and communities. To be most effective, involvement in these projects should begin at the pre-college level and continue throughout their college career. Recognizing the importance of genuine research experiences, the Department of Geology at California State University, Bakersfield (CSUB), with support from the National Science Foundation's Opportunities for Enhancing Diversity in the Geosciences program, provides research participation opportunities for teachers and students from the Bakersfield City School District and the Kern High School District. Both districts have a high percentage of low-income and minority students that normally would not consider a degree or career in the geosciences. The project centers around a four-week summer research program and follow-up activities during the school year. The research investigates the climate history of the southern San Joaquin Valley as well as the frequency of flooding in the valley. Many teachers and students are familiar with periodic flooding from personal experience and are aware of the larger issue of climate change in the past and present from news reports. Thus, they can directly relate to the relevance of the research. The project draws on the faculty's expertise in paleoclimatology and geochemistry and takes advantage of CSUB's existing research facilities. Sediments in the dry lake basins of Buena Vista Lake and Kern Lake preserve a record of the regional climate history and flooding of the Kern River and its tributaries. In the first year of the project, 6 teachers and 10 high school students worked with CSUB faculty and students. Three cores from the lake basins were collected. The cores were analyzed using established geophysical, geochemical, lithological, and micropaleontological techniques

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

    PubMed

    Sofaer, Neema

    2014-11-01

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

  16. 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

  17. 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

  18. 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…

  19. 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…

  20. Effects of Arts Education on Participation in the Arts. Research Division Report 36.

    ERIC Educational Resources Information Center

    Bergonzi, Louis; Smith, Julia

    Using data from the 1992 Survey of Public Participation in the Arts (SPPA92), research focused on the question: "Does arts education make arts participation more accessible to Americans?" The effects of both school-based arts education and community-based arts education were considered and compared. Art forms considered in this investigation were…

  1. 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…

  2. 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…

  3. 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…

  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. 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…

  6. 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.

  7. 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

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

    PubMed

    Steingrimsdottir, Hanna Steinunn; Arntzen, Erik

    2015-01-01

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

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

    PubMed Central

    Steingrimsdottir, Hanna Steinunn; Arntzen, Erik

    2015-01-01

    Within-participant research designs are frequently used within the field of behavior analysis to document changes in behavior before, during, and after treatment. The purpose of the present article is to show the utility of within-participant research designs when working with older adults with neurocognitive disorders. The reason for advocating for these types of experimental designs is that they provide valid information about whether the changes that are observed in the dependent variable are caused by manipulations of the independent variable, or whether the change may be due to other variables. We provide examples from published papers where within-participant research design has been used with patients with neurocognitive disorders. The examples vary somewhat, demonstrating possible applications. It is our suggestion that the within-participant research design may be used more often with the targeted client group than is documented in the literature at the current date. PMID:26229453

  10. 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

  11. Using animation as an information tool to advance health research literacy among minority participants.

    PubMed

    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.

  12. 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.

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

    PubMed

    Fisher, Celia B

    1994-01-01

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

  14. 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

  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.

  16. 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

  17. Do East Asian and Euro-Canadian women differ in sexual psychophysiology research participation?

    PubMed

    Woo, Jane S T; Brotto, Lori A; Yule, Morag A

    2010-07-01

    Evidence from studies of ethnic differences in sexual conservativeness and Papanicolaou (Pap) testing behaviors suggests that there may be culture-linked differences in rates of participation in physically invasive sexuality studies, resulting in volunteer bias. The effects of ethnicity and acculturation on participation in female psychophysiological sexual arousal research were investigated in a sample of Euro-Canadian (n = 50) and East Asian (n = 58) women. Participants completed a battery of questionnaires and were given either course credits or $10 for their participation. Participants were then informed about the opportunity to participate in a second phase of the study, which involved psychophysiological sexual arousal testing and which was completely optional. Contrary to expectations, the results showed that the East Asian women were more likely to participate in Phase 2 than the Euro-Canadian women. Among the East Asian women, greater heritage acculturation and lower mainstream acculturation predicted a lower likelihood of Phase 2 participation. The findings suggest the need to be wary of overgeneralizing female psychophysiological sexual arousal research results and may have implications for improving Pap testing behaviors in East Asian women.

  18. 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…

  19. Patient participation in psychiatric services: a literature review and proposal for a research strategy.

    PubMed

    Glenister, D

    1994-04-01

    There is a trend in nursing policy and practice towards patients participating actively in their treatments and the services they use. Nursing theorists often attempt to describe the phenomena of patient participation from a psychological perspective while neglecting sociological issues, such as power, ideology and moral status. This paper commences by examining policy and ethical issues in relation to patient participation. Studies examining immediate patient participation, for example active participation in treatments, and distant patient participation, namely participation in psychiatric service planning, are then reviewed. Various settings of psychiatric services are examined, including the initial interview, primary health care, hospitalization and clinical innovation, in order to uncover common themes. These studies often fail to pay attention to the patient's experience of participation, even when clinically innovative schemes are being described, and also fail to develop hypotheses and theories about participation. The importance of a sociological perspective in future studies is indicated. The author concludes that psychiatric patients want a more active role in treatments and service planning, and that psychiatric clinicians, including nurses, find more active patient participation threatening. Nevertheless, there is evidence of more rewarding alliances being formed between patients and nurses in some settings. The nurse's role in democratizing psychiatric services, thus permitting greater patient participation, while fulfilling statutory obligations is a considerable challenge to nursing practice in the future. This paper concludes by discussing some current limitations of nursing research and the value of some ideas taken from critical theory, in particular reflection, dialogue and praxis, as a practical basis for social action and nursing research.

  20. Patient participation in psychiatric services: a literature review and proposal for a research strategy.

    PubMed

    Glenister, D

    1994-04-01

    There is a trend in nursing policy and practice towards patients participating actively in their treatments and the services they use. Nursing theorists often attempt to describe the phenomena of patient participation from a psychological perspective while neglecting sociological issues, such as power, ideology and moral status. This paper commences by examining policy and ethical issues in relation to patient participation. Studies examining immediate patient participation, for example active participation in treatments, and distant patient participation, namely participation in psychiatric service planning, are then reviewed. Various settings of psychiatric services are examined, including the initial interview, primary health care, hospitalization and clinical innovation, in order to uncover common themes. These studies often fail to pay attention to the patient's experience of participation, even when clinically innovative schemes are being described, and also fail to develop hypotheses and theories about participation. The importance of a sociological perspective in future studies is indicated. The author concludes that psychiatric patients want a more active role in treatments and service planning, and that psychiatric clinicians, including nurses, find more active patient participation threatening. Nevertheless, there is evidence of more rewarding alliances being formed between patients and nurses in some settings. The nurse's role in democratizing psychiatric services, thus permitting greater patient participation, while fulfilling statutory obligations is a considerable challenge to nursing practice in the future. This paper concludes by discussing some current limitations of nursing research and the value of some ideas taken from critical theory, in particular reflection, dialogue and praxis, as a practical basis for social action and nursing research. PMID:8021403

  1. Researcher and Teacher-Participant Found Poetry: Collaboration in Poetic Transcription

    ERIC Educational Resources Information Center

    Burdick, Melanie

    2011-01-01

    Different ways of writing and seeing can jointly provide a more multidimensional discussion of inquiry in education. This paper, which reports on findings of a qualitative study focused on action research with practicing teachers, describes and analyzes the ways poetic transcription of interview texts by both researcher and participant can provide…

  2. 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…

  3. 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…

  4. 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…

  5. 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…

  6. 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…

  7. 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…

  8. 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…

  9. 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…

  10. 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…

  11. 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…

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

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ..., teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY... EXCHANGE PROGRAM § 63.4 Grants to foreign participants to lecture, teach, and engage in research. A citizen or national of a foreign country who has been awarded a grant to lecture, teach, and engage...

  13. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ..., teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY... EXCHANGE PROGRAM § 63.4 Grants to foreign participants to lecture, teach, and engage in research. A citizen or national of a foreign country who has been awarded a grant to lecture, teach, and engage...

  14. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ..., teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY... EXCHANGE PROGRAM § 63.4 Grants to foreign participants to lecture, teach, and engage in research. A citizen or national of a foreign country who has been awarded a grant to lecture, teach, and engage...

  15. Non-participant observation: using video tapes to collect data in nursing research.

    PubMed

    Caldwell, Kay; Atwal, Anita

    2005-01-01

    Observation is a highly valued and effective research method, as well as being an essential part of nursing practice. The authors explore the way in which non-participant observation as a research method might be enhanced by the use of video recording. The utility, ethical considerations and constraints of video recording as a data collection tool are discussed, with examples from a research study. The authors argue that the use of videos can enhance the credibility of non-participant observation studies through the minimisation of selectivity and bias and the opportunity to employ more rigorous strategies for ensuring reliability.

  16. Participants' recall and understanding of genomic research and large-scale data sharing.

    PubMed

    Robinson, Jill Oliver; Slashinski, Melody J; Wang, Tao; Hilsenbeck, Susan G; McGuire, Amy L

    2013-10-01

    As genomic researchers are urged to openly share generated sequence data with other researchers, it is important to examine the utility of informed consent documents and processes, particularly as these relate to participants' engagement with and recall of the information presented to them, their objective or subjective understanding of the key elements of genomic research (e.g., data sharing), as well as how these factors influence or mediate the decisions they make. We conducted a randomized trial of three experimental informed consent documents (ICDs) with participants (n = 229) being recruited to genomic research studies; each document afforded varying control over breadth of release of genetic information. Recall and understanding, their impact on data sharing decisions, and comfort in decision making were assessed in a follow-up structured interview. Over 25% did not remember signing an ICD to participate in a genomic study, and the majority (54%) could not correctly identify with whom they had agreed to share their genomic data. However, participants felt that they understood enough to make an informed decision, and lack of recall did not impact final data sharing decisions or satisfaction with participation. These findings raise questions about the types of information participants need in order to provide valid informed consent, and whether subjective understanding and comfort with decision making are sufficient to satisfy the ethical principle of respect for persons.

  17. Improving subject recruitment, retention, and participation in research through Peplau's theory of interpersonal relations.

    PubMed

    Penckofer, Sue; Byrn, Mary; Mumby, Patricia; Ferrans, Carol Estwing

    2011-04-01

    Recruitment and retention of persons participating in research is one of the most significant challenges faced by investigators. Although incentives are often used to improve recruitment and retention, evidence suggests that the relationship of the patient to study personnel may be the single, most important factor in subject accrual and continued participation. Peplau's theory of interpersonal relations provides a framework to study the nurse-patient relationship during the research process. In this paper the authors provide a brief summary of research strategies that have been used for the recruitment and retention of subjects and an overview of Peplau's theory of interpersonal relations including its use in research studies. In addition, a discussion of how this theory was used for the successful recruitment and retention of women with type 2 diabetes who participated in a clinical trial using a nurse-delivered psychoeducational intervention for depression is addressed.

  18. 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.

  19. Participant [correction of Patient] observation in nursing home research: who was that masked woman?

    PubMed

    Bland, Marian

    2002-02-01

    Undertaking fieldwork in nursing home environments can present researchers with many challenges, particularly when the researcher also happens to be a registered nurse. This article discusses the issues that one nurse researcher faced during participant observation in three New Zealand nursing homes. These include the complexity of the nurse researcher role, the blurring of role boundaries, and various ethical concerns that arose, including the difficulties of ensuring that all those who were involved in the study were kept informed as to the researcher's role and purpose. Strategies used to maintain ethical and role integrity are outlined, with further debate and discussion around fieldwork issues and experiences for nurse researchers called for.

  20. 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

  1. Ecology and Ethics in Participatory Collaborative Action Research: An Argument for the Authentic Participation of Students in Educational Research

    ERIC Educational Resources Information Center

    Collins, Steve

    2004-01-01

    A conception of action research is offered that is collaborative, participatory, targets ethical issues and includes students. Collaboration is "organic" in that all members share the goal of the research and are interdependent in pursuing that goal. Participation is authentic, requiring a continuing negotiation of planning, roles, power…

  2. Pharmacists' participation in research: a case of trying to find the time.

    PubMed

    Cvijovic, Kosta; Boon, Heather; Jaeger, Walter; Vohra, Sunita

    2010-12-01

    Objective  The objective of this case study was to explore how pharmacists involved in the Pharmacy Study Of Natural Health Product Adverse Reactions (SONAR) project perceived the barriers and facilitators to participating in clinical research. Methods  A total of 19 semi-structured interviews were completed with pharmacy staff members who had recently completed data collection in the SONAR study which involved asking patients if they had experienced any unwanted effects while taking natural products. Other data sources included detailed field notes and interviews with SONAR researchers. Basic content analysis with multiple coders was used to analyse the data and triangulation was used to highlight areas of consistency and contrasting view points across the data types. Key findings  None of the participating pharmacies was able to collect as much data as expected by the SONAR team. Lack of time was stated as the main reason why pharmacy staff had trouble with the data collection. However, observational data and detailed probing in interviews confirmed that data collection itself took very little time (seconds per patient). Lack of time was provided as a socially acceptable excuse that masked deeper issues related to fears associated with challenges modifying established work routines and perceived lack of value associated with research participation. Conclusion  To successfully engage pharmacists in practice-based natural health product research it is necessary to establish the direct and indirect benefits of participation because those that believe in the value of the research will make the time for participation.

  3. 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.

  4. 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

  5. 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

  6. 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.

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

    PubMed Central

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

    2014-01-01

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

  8. Ethical perspectives of children's assent for research participation: deontology and on utilitarianism.

    PubMed

    Pieper, Pam

    2008-01-01

    Is a child's assent to participate in research that does not have the potential to directly benefit the child ethically mandated? Analysis of this particular dilemma of health care research in children using two competing theories results in different answers. Deontology (principle-based ethics) will be contrasted with utilitarianism (consequentialism). Historical cases of research with children will be used as exemplars of these two theoretical positions.

  9. 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

  10. 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

  11. 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.

  12. Should patients be allowed to veto their participation in clinical research?

    PubMed Central

    Evans, H

    2004-01-01

    Patients participating in the shared benefits of publicly funded health care enjoy the benefits of treatments tested on previous patients. Future patients similarly depend on treatments tested on present patients. Since properly designed research assumes that the treatments being studied are—so far as is known at the outset—equivalent in therapeutic value, no one is clinically disadvantaged merely by taking part in research, provided the research involves administering active treatments to all participants. This paper argues that, because no other practical or moral considerations count decisively against so doing, we could and should oblige patients to agree to receive indicated treatment within the terms of any concurrent research protocols. This ensures their treatment will benefit not only themselves but also future patients through contributing to new knowledge. By analogy with the paying of income tax, patients should not be allowed to "veto" their social responsibility to take part in clinical research. PMID:15082818

  13. The nurse clinician as research participant recruiter: experience from a longitudinal intervention study.

    PubMed

    Morrison-Beedy, D; Aronowitz, T; Dyne, J; Mkandawire, L; Murphy, C; Martin, J

    2001-01-01

    One of the most critical phases involved in carrying out a research project is participant recruitment. Recruitment into clinical trials and health programs is a primary public health challenge, particularly among adolescents. Special skills and abilities are needed to successfully recruit participants from this developmental age group. This paper describes the similarities found between the recruitment process developed for a randomized controlled trial with adolescents and the steps of the nursing process, and demonstrates that knowledge of the nursing process can assist in successfully recruiting individuals for a research study. Even without research training, clinical nurses can play a significant role in research studies because of their skills and experiences with the nursing process. Thus, nurse scientists and clinicians can work together successfully to conduct research studies and health projects that involve challenging recruitment efforts. PMID:16052902

  14. 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…

  15. 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…

  16. Legal Barriers to Adolescent Participation in Research About HIV and Other Sexually Transmitted Infections.

    PubMed

    Moore, Quianta L; Paul, Mary E; McGuire, Amy L; Majumder, Mary A

    2016-01-01

    Whether adolescents can participate in clinical trials of pharmacologic therapies for HIV prevention, such as preexposure prophylaxis, without parental permission hinges on state minor consent laws. Very few of these laws explicitly authorize adolescents to consent to preventive services for HIV and other sexually transmitted infections. Unclear state laws may lead to research cessation. We have summarized legal, ethical, and policy considerations related to adolescents' participation in HIV and sexually transmitted infection prevention research in the United States, and we have explored strategies for facilitating adolescents' access.

  17. Differences Between Participants and Non-Participants in Campus Demonstrations at the University of Maryland. Research Report #2-71.

    ERIC Educational Resources Information Center

    Kimball, Ronald L.; Sedlacek, William E.

    Differences between background characteristics and attitudes of participants and nonparticipants in campus demonstrations were studied. An anonymous questionnaire was administered to 5,671 University of Maryland, College Park, undergraduates during fall registration, 1970. Results show that 50 percent of the sample had participated in some campus…

  18. 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…

  19. Biobank Participation and Returning Research Results: Perspectives from a Deliberative Engagement in South Side Chicago

    PubMed Central

    Lemke, Amy A.; Halverson, Colin; Ross, Lainie Friedman

    2011-01-01

    To be respectful of the public, biobank guiding principles and operations should be responsive to and inclusive of the values and beliefs of their participants. In an effort to increase knowledge and inform institutional policies, we conducted a deliberative engagement of individuals from two healthcare facilities in South Side Chicago that serve different socioeconomic communities to consider biobank policies regarding return of research results. We recruited primary caregivers of children receiving care at either a Federally Qualified Health Center or a university-based practice to attend two full-day deliberative engagement sessions, which included four educational presentations followed by focus group discussions. Surveys were administered to assess attitudes before and after the engagement, and an evaluation was conducted to assess the deliberative engagement process. All 45 participants self-identified as African American. Focus group themes included: 1) overall interest in biobank participation, broad consent, and recontact; 2) root causes of distrust and potential biobank strategies to facilitate trust; 3) perceived positive and negative aspects of receiving research results; and 4) strong interest in receiving and managing their children’s research results. Survey data indicated the same degree of interest in receiving results about themselves as about their children. Pre- and post-session findings showed mainly non-significant attitudinal changes in level of interest in biobank participation and return of research results, although there was a decrease in level of concern regarding identification from research data. Our findings reveal shared community insights important in facilitating relationships and policy discussions between biobank researchers and research participants. PMID:22438108

  20. 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

  1. Decisions to participate in research: views of underserved minority drug users with or at risk for HIV.

    PubMed

    Slomka, Jacquelyn; Ratliff, Eric A; McCurdy, Sheryl A; Timpson, Sandra; Williams, Mark L

    2008-11-01

    Under-representation of minority populations, particularly African Americans, in HIV/AIDS research is problematic because African Americans bear a greater disease burden from HIV/AIDS. Studies of motivations for participating in research have emphasized factors affecting individuals' willingness to participate and barriers to participation, especially in regard to HIV vaccine research. Little is known about how underserved minority drug users perceive research and their decisions to participate. This study describes African American drug users' perceptions of research participation and their decisions to participate based on three kinds of hypothetical HIV/AIDS-related clinical studies. In-depth, qualitative interviews were conducted with 37 underserved, African American crack cocaine users, recruited from participants already enrolled in three different behavioral HIV prevention studies. Interviews were recorded, transcribed, coded for themes and sub-themes and analyzed using directed and conventional content analysis. Participants' decisions to take part in research often involved multiple motivations for participating. In addition, decisions to participate were characterized by four themes: a desire for information; skepticism and mistrust of research and researchers; perceptions of medical care and monitoring within a study; and participant control in decisions to participate or decline participation. Lack of adequate information and/or medical care and monitoring within a study were related to mistrust, while the provision of information was viewed by some individuals as a right and acknowledgement of the participant's contribution to the study. Participants perceived, rightly or wrongly, that medical monitoring would control some of the risks of a study. Participants also described situations of exerting control over decisions to enter or withdraw from a research study. Preliminary findings suggest that continuous communication and provision of information

  2. 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

  3. 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.

  4. 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

  5. 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

  6. [Research with participants suffering from dementia. Ethical and legal considerations in research involving human subjects].

    PubMed

    Schüßler, N; Schnell, M W

    2014-12-01

    Using case reports from the health services research project Action Alliance Pain-Free City Muenster, fundamental issues of research ethics, data protection and legal guardianship are shown and explained. A plan of important aspects to be considered while planning, conducting and recruiting for research with nursing home inhabitants suffering from dementia in a legally correct and safe manner is presented.

  7. 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

  8. The influence of risk and monetary payment on the research participation decision making process

    PubMed Central

    Bentley, J; Thacker, P

    2004-01-01

    Objectives: To determine the effects of risk and payment on subjects' willingness to participate, and to examine how payment influences subjects' potential behaviours and risk evaluations. Methods: A 3 (level of risk) x 3 (level of monetary payment), between subjects, completely randomised factorial design was used. Students enrolled at one of five US pharmacy schools read a recruitment notice and informed consent form for a hypothetical study, and completed a questionnaire. Risk level was manipulated using recruitment notices and informed consent documents from hypothetical biomedical research projects. Payment levels were determined using the payment models evaluated by Dickert and Grady as a guide. Five dependent variables were assessed in the questionnaire: willingness to participate, willingness to participate with no payment, propensity to neglect to tell about restricted activities, propensity to neglect to tell about negative effects, and risk rating. Results: Monetary payment had positive effects on respondents' willingness to participate in research, regardless of the level of risk. However, higher monetary payments did not appear to blind respondents to the risks of a study. Payment had some influence on respondents' potential behaviours regarding concealing information about restricted activities. However, payment did not appear to have a significant effect on respondents' propensity to neglect to tell researchers about negative effects. Conclusions: Monetary payments appear to do what they are intended to do: make subjects more willing to participate in research. Concerns about payments blinding subjects to risks could not be substantiated in the present study. However, the findings do raise other concerns—notably the potential for payments to diminish the integrity of a study's findings. Future research is critical to make sound decisions about the payment of research subjects. PMID:15173366

  9. Participatory action research: practical strategies for actively engaging and maintaining participation in immigrant and refugee communities.

    PubMed

    van der Velde, Jeannette; Williamson, Deanna L; Ogilvie, Linda D

    2009-09-01

    In this research we examined the processes involved in implementing and maintaining a participatory action research (PAR) project by uncovering how theoretical PAR tenets hold up in the reality of a community-based project addressing immigrants' and refugees' mental health needs. Qualitative data from focus groups with these newcomers were analyzed for thematic content. Findings reveal that active participation is seen as the gateway into a PAR project, whereas knowledge attainment and empowerment are the stimuli for continued participation. The data also suggest that newcomers' motivations to participate in a PAR-oriented project might vary across ethno-cultural groups. Practitioners working in community-based initiatives would do well to appeal to the diversity of motivational factors, while endorsing individual and group strengths.

  10. 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…

  11. A Collaborative Action Research Project on Assessment and the Implications for the Pre-Service Participant.

    ERIC Educational Resources Information Center

    Seda, Ileana; Mamana, Lisa A.

    A study focused on a university-school collaborative research project on language assessment in the classroom context and the benefits of preservice teacher participation. Personnel from the Pennsylvania State University (including 20 preservice teacher education students), intermediate unit (Pennsylvania's regional service centers), and four…

  12. Working with Teachers to Promote Children's Participation through Pupil-Led Research

    ERIC Educational Resources Information Center

    Burton, Debbie; Smith, Margaret; Woods, Kevin

    2010-01-01

    Enabling children and young people to act as researchers is increasingly viewed as useful in supporting their increased "participation" within settings where they live, work or receive services. This paper reports upon a project conducted by two educational psychologists (EPs) with two primary school class groups, in which the children and their…

  13. 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…

  14. Why Adults Participate in Education: Some Implications for Program Development of Research on Motivational Orientations.

    ERIC Educational Resources Information Center

    Darkenwald, Gordon G.

    While recent research on why adults participate in continuing education programs does not provide educational planners with any easy prescriptions for programing success, it does suggest some broad directions for more effective program development, particularly in relation to needs assessment, the promotional aspect of marketing, and the design…

  15. 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.

  16. 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

  17. 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…

  18. Program Participation and Academic Progress of Second Language Learners: Texas Middle School Update. Policy Research Report.

    ERIC Educational Resources Information Center

    Texas Education Agency, Austin. Div. of Research and Evaluation.

    This study examined program participation and academic progress of second language learners, following a cohort of Texas public school students from the school years, 1992-93 to 1999-00 as they progressed through the elementary and middle grades. Researchers examined the following: changes in Texas policy related to students with limited English…

  19. 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…

  20. Reflections on the researcher-participant relationship and the ethics of dialogue.

    PubMed

    Yassour-Borochowitz, Dalit

    2004-01-01

    Research concerned with human beings is always an interference of some kind, thus posing ethical dilemmas that need justification of procedures and methodologies. It is especially true in social work when facing mostly sensitive populations and sensitive issues. In the process of conducting a research on the emotional life histories of Israeli men who batter their partners, some serious ethical questions were evoked such as (a) Did the participants really give their consent? (b) What are the limits of the researcher-participants relationship and who decides them? (c) For whom is the study beneficial? and (d) To what degree did the methodology fit with the participants? In this article, I discuss the Socratic idea of truth revealed through dialogue and the idea of reciprocity that was developed in Buber's (1949) ethics of dialogue and Habermas' (1990) communicative ethics. The 3 essential conclusions drawn from the ethical questions raised and the discussion of the thinkers that are mentioned previously are (a) dialogical methodology is ethically justified; (b) dynamic interactions give a more holistic perspective of the human nature, thus enriching the field; and (c) through dialogical methodology both researcher and participant profit from growth of knowledge, which is a key for empowerment and change.

  1. 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…

  2. What Research Says: About the Correlation between Athletic Participation and Academic Achievement.

    ERIC Educational Resources Information Center

    Ballantine, Robert J.

    Research has differing things to say about the effects of athletic participation on the academic achievement of athletes. Interest in this relationship has generated a number of studies at the high school and college levels, although little has been done at the junior high school level. A review, done in 1934, of 41 studies found that non-athletes…

  3. 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…

  4. 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…

  5. 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

  6. 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.

  7. Participation in biomedical research is an imperfect moral duty: a response to John Harris

    PubMed Central

    Shapshay, Sandra; Pimple, Kenneth D

    2007-01-01

    In his paper “Scientific research is a moral duty”, John Harris argues that individuals have a moral duty to participate in biomedical research by volunteering as research subjects. He supports his claim with reference to what he calls the principle of beneficence as embodied in the “rule of rescue” (the moral obligation to prevent serious harm), and the principle of fairness embodied in the prohibition on “free riding” (we are obliged to share the sacrifices that make possible social practices from which we benefit). His view that biomedical research is an important social good is agreed upon, but it is argued that Harris succeeds only in showing that such participation and support is a moral good, among many other moral goods, while failing to show that there is a moral duty to participate in biomedical research in particular. The flaws in Harris's arguments are detailed here, and it is shown that the principles of beneficence and fairness yield only a weaker discretionary or imperfect obligation to help others in need and to reciprocate for sacrifices that others have made for the public good. This obligation is discretionary in the sense that the individuals are free to choose when, where, and how to help others in need and reciprocate for earlier sacrifices. That Harris has not succeeded in claiming a special status for biomedical research among all other social goods is shown here. PMID:17601870

  8. 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.

  9. The Adoption of Alcohol Pharmacotherapies in the Clinical Trials Network: The Influence of Research Network Participation

    PubMed Central

    Abraham, Amanda J.; Knudsen, Hannah K.; Rothrauff, Tanja C.; Roman, Paul M.

    2010-01-01

    Organizational participation in clinical research may lead to adoption of the intervention by treatment agencies, but it is not known whether research involvement enhances innovativeness beyond the specific interventions that are tested. The National Institute on Drug Abuse’s (NIDA) Clinical Trial Network (CTN) is a platform for considering this research question. To date, the CTN has not conducted research on medications for alcohol use disorders (AUDs), so greater adoption of innovative AUD pharmacotherapies by CTN-affiliated programs would suggest an added value of research network participation. Using longitudinal data from a pooled sample of CTN and non-CTN publicly funded treatment programs, we investigate adoption of tablet naltrexone and acamprosate over a two-year period. CTN-affiliated programs were more likely to have adopted tablet naltrexone and acamprosate at 24-month follow-up, net of the effects of a range of organizational characteristics. Research network participation may thus enhance organizational innovativeness to include interventions beyond the scope of the network. PMID:20117908

  10. Participative mental health consumer research for improving physical health care: An integrative review.

    PubMed

    Happell, Brenda; Ewart, Stephanie B; Platania-Phung, Chris; Stanton, Robert

    2016-10-01

    People with mental illness have a significantly lower life expectancy and higher rates of chronic physical illnesses than the general population. Health care system reform to improve access and quality is greatly needed to address this inequity. The inclusion of consumers of mental health services as co-investigators in research is likely to enhance service reform. In light of this, the current paper reviews mental health consumer focussed research conducted to date, addressing the neglect of physical health in mental health care and initiatives with the aim of improving physical health care. The international literature on physical healthcare in the context of mental health services was searched for articles, including mental health consumers in research roles, via Medline, CINAHL and Google Scholar, in October 2015. Four studies where mental health consumers participated as researchers were identified. Three studies involved qualitative research on barriers and facilitators to physical health care access, and a fourth study on developing technologies for more effective communication between GPs and patients. This review found that participatory mental health consumer research in physical health care reform has only become visible in the academic literature in 2015. Heightened consideration of mental health consumer participation in research is required by health care providers and researchers. Mental health nurses can provide leadership in increasing mental health consumer research on integrated care directed towards reducing the health gap between people with and without mental illness.

  11. Federal interpretation and enforcement of protections for vulnerable participants in human research.

    PubMed

    Iltis, Ana S; Wall, Anji; Lesandrini, Jason; Rangel, Erica K; Chibnall, John T

    2009-03-01

    REGULATIONS AND POLICIES GOVERNING research, codes of ethics, and the research ethics literature reflect the need to provide special protections to vulnerable research participants. Nevertheless, there is disagreement about who is vulnerable and why, what protections are appropriate, and when to disallow research involving vulnerable persons. The Common Rule (CR) governs much of the human research conducted in the United States and the Office for Human Research Protections (OHRP) oversees much of this research. The CR requires special protections for pregnant women, fetuses, neonates, prisoners, and children. Although it also requires that researchers employ "additional safeguards" to protect other vulnerable persons, it does not define vulnerability or identify appropriate "safeguards." Very little is known about how OHRP interprets the "additional safeguards" requirement. We examined all letters of determination posted on the OHRP website between July 1, 2000 and December 31, 2006 (n = 636) to study the extent to which OHRP addressed, in its audits and investigations, the requirement to protect vulnerable persons. The letters did not reveal guidance on understanding vulnerability, determining whether a study includes vulnerable persons or protecting vulnerable participants. If institutions and investigators are to fulfill the ethical obligation to provide appropriate safeguards when conducting research on vulnerable persons, they must develop and implement mechanisms to identify and address vulnerability. PMID:19374484

  12. Ethical issues in identifying and recruiting participants for familial genetic research.

    PubMed

    Beskow, Laura M; Botkin, Jeffrey R; Daly, Mary; Juengst, Eric T; Lehmann, Lisa Soleymani; Merz, Jon F; Pentz, Rebecca; Press, Nancy A; Ross, Lainie Friedman; Sugarman, Jeremy; Susswein, Lisa R; Terry, Sharon F; Austin, Melissa A; Burke, Wylie

    2004-11-01

    Family-based research is essential to understanding the genetic and environmental etiology of human disease. The success of family-based research often depends on investigators' ability to identify, recruit, and achieve a high participation rate among eligible family members. However, recruitment of family members raises ethical concerns due to the tension between protecting participants' privacy and promoting research quality, and guidelines for these activities are not well established. The Cancer Genetics Network Bioethics Committee assembled a multidisciplinary group to explore the scientific and ethical issues that arise in the process of family-based recruitment. The group used a literature review as well as expert opinion to develop recommendations about appropriate approaches to identifying, contacting, and recruiting family members. We conclude that there is no single correct approach, but recommend a balanced approach that takes into account the nature of the particular study as well as its recruitment goals. Recruitment of family members should be viewed as part of the research protocol and should require appropriate informed consent of the already-enrolled participant. Investigators should inform prospective participants why they are being contacted, how information about them was obtained, and what will happen to that information if they decide not to participate. The recruitment process should also be sensitive to the fact that some individuals from families at increased genetic risk will have no prior knowledge of their risk status. These recommendations are put forward to promote further discussion about the advantages and disadvantages of various approaches to family-based recruitment. They suggest a framework for considering alternative recruitment strategies and their implications, as well as highlight areas in need of further empirical research.

  13. RESEARCH TRAINING INSTITUTE FOR PERSONS IN VOCATIONAL EDUCATION PARTICIPATING IN RESEARCH AND DEVELOPMENT ACTIVITIES (JUNE 13-AUGUST 12, 1966).

    ERIC Educational Resources Information Center

    LAMAR, CARL F.

    THIRTY SECONDARY AND COLLEGE TEACHERS, SUPERVISORS, AND TEACHER EDUCATORS FROM AGRICULTURE, HOME ECONOMICS, BUSINESS AND OFFICE EDUCATION, DISTRIBUTIVE EDUCATION, HEALTH, AND TRADE AND INDUSTRIAL EDUCATION PARTICIPATED IN AN INSTITUTE DESIGNED TO INCREASE THE RESEARCH COMPETENCE OF PERSONS IN POSITIONS OF LEADERSHIP. ALL EXCEPT ONE WERE ENROLLED…

  14. 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

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

    PubMed

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

    2015-06-01

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

  16. 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

  17. 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

  18. 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

  19. 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

  20. 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

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

    PubMed

    2015-11-01

    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.

  2. 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.

  3. 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.

  4. 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.

  5. Psychometric Properties of a Decisional Capacity Screening Tool for Individuals Contemplating Participation in Alzheimer's disease Research

    PubMed Central

    Seaman, Jennifer Burgher; Terhorst, Lauren; Gentry, Amanda; Hunsaker, Amanda; Parker, Lisa S.; Lingler, Jennifer Hagerty

    2016-01-01

    Background With the growing population of individuals affected by Alzheimer's disease (AD) and related disorders, there is a pressing demand for research on late life cognitive disorders. However, the high risk for decisional incapacity in this population necessitates the evaluation of capacity to consent to research participation, adding to the cost and complexity of the research process. The University of California, San Diego Brief Assessment of Capacity to Consent (UBACC) was initially validated in a sample of persons with schizophrenia and healthy controls. Objective To assess the psychometric properties of the UBACC when used in a sample of individuals contemplating participation in research on AD. Methods The UBACC was administered to a convenience sample (n=132) consisting of individuals with mild to moderate cognitive impairment (n=52), their study partners (n= 52) and healthy older adults control subjects (n=30), as part of a broader study to evaluate perceived burden of research participation. Reliability tests, correlational analyses, and exploratory factor analytic methods were used to examine the psychometric properties of the instrument. Results UBACC scores were significantly associated with both global cognition (rs = .564, p < .001) and verbal fluency (rs = .511, P <.001), indicating concurrent validity with related constructs. The resulting factor structure differed from that reported by the developers in their initial testing. Items clustered almost entirely on one factor, and items reflecting the construct of understanding accounted for 32.12% of the total variance, with no evidence for distinct reasoning or appreciation scales. Conclusion The UBACC shows promise when used to screen for decisional capacity among those considering participation in AD research. PMID:25765917

  6. Regulating tissue research: do we need additional rules to protect research participants?

    PubMed

    Wright, Jessica; Ploem, Corrette; Sliwka, Marcin; Gevers, Sjef

    2010-12-01

    This article explores whether additional rules are needed for the regulation of tissue research in Europe. A human rights-based approach (referring to international documents and illustrative examples from national legislation) is taken to address the question: what is so special about tissue, in particular when compared to personal data? The existing regimes in Europe on data protection and clinical trials are presented and examined for their suitability to govern tissue research, taking into account the differences between data and tissue. Six recommendations are outlined, highlighting important points future legislation on tissue research must take into account.

  7. Consent Procedures and Participation Rates in School-Based Intervention and Prevention Research: Using a Multi-Component, Partnership-Based Approach to Recruit Participants

    PubMed Central

    Leff, Stephen S.; Franko, Debra L.; Weinstein, Elana; Beakley, Kelly; Power, Thomas J.

    2009-01-01

    Evaluations of school-based interventions and prevention programs typically require parental consent for students to participate. In school-based efforts, program evaluators may have limited access to parents and considerable effort is required to obtain signed consent. This issue is particularly salient when conducting research in under-resourced, urban schools, where parent involvement in the school setting may be somewhat limited. The aims of this article were to (a) examine the published school-based prevention and intervention literature to assess the state of the field in terms of consent procedures and participation rates; and (b) describe two examples of health promotion studies that used multi-component, partnership-based strategies in urban schools to encourage communication among children, their parents, and researchers. The purpose of the case studies was to generate hypotheses to advance the science related to school-based participant recruitment for research studies. Of nearly 500 studies reviewed, only 11.5% reported both consent procedures and participation rates. Studies using active consent procedures had a mean participation rate of 65.5% (range: 11–100%). This article highlights the need for researchers to report consent procedures and participation rates and describes partnership-based strategies used to enroll students into two urban, school-based health promotion studies. PMID:19834586

  8. 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

  9. 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

  10. 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.

  11. "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.…

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

    PubMed Central

    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

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

    PubMed

    Hoerger, Michael

    2010-12-01

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

  14. 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

  15. 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

  16. Benefits and payments for research participants: Experiences and views from a research centre on the Kenyan coast

    PubMed Central

    2012-01-01

    Background There is general consensus internationally that unfair distribution of the benefits of research is exploitative and should be avoided or reduced. However, what constitutes fair benefits, and the exact nature of the benefits and their mode of provision can be strongly contested. Empirical studies have the potential to contribute viewpoints and experiences to debates and guidelines, but few have been conducted. We conducted a study to support the development of guidelines on benefits and payments for studies conducted by the KEMRI-Wellcome Trust programme in Kilifi, Kenya. Methods Following an initial broad based survey of cash, health services and other items being offered during research by all programme studies (n = 38 studies), interviews were held with research managers (n = 9), and with research staff involved in 8 purposively selected case studies (n = 30 interviewees). Interviews explored how these ‘benefits’ were selected and communicated, experiences with their administration, and recommendations for future guidelines. Data fed into a consultative workshop attended by 48 research staff and health managers, which was facilitated by an external ethicist. Findings The most commonly provided benefits were medical care (for example free care, and strengthened quality of care), and lunch or snacks. Most cash given to participants was reimbursement of transport costs (for example to meet appointments or facilitate use of services when unexpectedly sick), but these payments were often described by research participants as benefits. Challenges included: tensions within households and communities resulting from lack of clarity and agreement on who is eligible for benefits; suspicion regarding motivation for their provision; and confusion caused by differences between studies in types and levels of benefits. Conclusions Research staff differed in their views on how benefits should be approached. Echoing elements of international benefit

  17. 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

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

    PubMed

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

    2014-03-01

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

  19. 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.

  20. 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

  1. 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.

  2. 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.

  3. 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

  4. 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

  5. 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

  6. Methods for characterizing participants' nonmainstream dialect use in child language research.

    PubMed

    Oetting, Janna B; McDonald, Janet L

    2002-06-01

    Three different approaches to the characterization of research participants' nonmainstream dialect use can be found in the literature. They include listener judgment ratings, type-based counts of nonmainstream pattern use, and token-based counts. In this paper, we examined these three approaches, as well as shortcuts to these methods, using language samples from 93 children previously described in J. Oetting and J. McDonald (2001). Nonmainstream dialects represented in the samples included rural Louisiana versions of Southern White English (SWE) and Southern African American English (SAAE). Depending on the method and shortcut used, correct dialect classifications (SWE or SAAE) were made for 88% to 97% of the participants; however, regression algorithms had to be applied to the type- and token-based results to achieve these outcomes. For characterizing the rate at which the participants produced the nonmainstream patterns, the token-based methods were found to be superior to the others, but estimates from all approaches were moderately to highly correlated with each other. When type- and/or token-based methods were used to characterize participants' dialect type and rate, the number of patterns included in the analyses could be substantially reduced without significantly affecting the validity of the outcomes. These findings have important implications for future child language studies that are done within the context of dialect diversity.

  7. Participation in research program: A Novel Course in Undergraduate Education of Life Science.

    PubMed

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

    2007-09-01

    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 methodologies that have been proven to be successful at each institution to participants. Through disciplines crossing, students were trained theoretically and practically about modern techniques, facilitating the efficient commutation of general laboratory skills and modern laboratory skills, and the possession of higher research ability. Therefore, during some basic training (e.g., usage and maintenance of equipments, designing and completing experiments, analyzing data and reporting results, etc.), a series of capabilities are strengthened, such as basic experimental skills, searching appropriate methods, explaining unknown biological phenomena, and the capacity of solving problems. To determine the efficiency of these strategies, we carefully examined students' performance and demonstrated the progress in students' basic abilities of scientific research in their training.

  8. 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

  9. 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.

  10. 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

  11. 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

  12. [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

  13. Assessment of a decision aid to assist genetic testing research participants in the informed consent process.

    PubMed

    Sorenson, J R; Lakon, C; Spinney, T; Jennings-Grant, T

    2004-01-01

    Limited attention has been given to applying decision-making theories from psychology to the content and process of informed consent in genetic testing research. Data are presented from a study that developed and assessed a psychological theory-based decision aid as part of the informed consent process. This innovative approach assisted at-risk women in assessing the consequences of participating in a research project that offered them free hemophilia A genetic carrier testing. Results suggest: (1) the decision aid can be incorporated into the consent process with few problems; (2) women of varying educational backgrounds can complete the decision aid; (3) while women consider many consequences of genetic testing, their primary focus is on the implications for their family; and (4) this is in marked contrast to the typical benefit-harm statements prepared by researchers for genetic testing.

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

    PubMed

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

    2012-01-01

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

  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. 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

    ..., lecture, teach, engage in research, demonstrate special skills, or engage in specialized programs. 63.7... BEHALF OF PARTICIPANTS IN THE INTERNATIONAL EDUCATIONAL AND CULTURAL EXCHANGE PROGRAM § 63.7 Grants to United States participants to consult, lecture, teach, engage in research, demonstrate special skills,...

  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.

  19. Public Interest in Medical Research Participation: Differences by Volunteer Status and Study Type

    PubMed Central

    Cobb, Enesha M.; Singer, Dianne C.; Davis, Matthew M.

    2014-01-01

    Purpose We assessed national levels of public interest in medical research participation (MRP) and factors associated with interest as a healthy volunteer; as a diagnosed volunteer; and in seven study types. Method Cross-sectional, web-based survey of the US population in June 2012. Descriptive statistics estimated interest in MRP and multivariable logistic regression determined associations between respondent-level predictors and interest in MRP. Results Of 2,668 respondents (response rate=61%), 41% were interested in MRP as healthy volunteers and 60% as diagnosed volunteers. Respondents with some college (OR=1.54, 1.09–2.19) or higher education (OR=1.86, 1.29–2.70) had higher adjusted odds of interest as healthy volunteers. Non-Hispanic black race (OR=0.56, 0.37–0.86) and education below high school (OR=0.57, 0.35–0.92) were associated with lower adjusted odds of interest as diagnosed volunteers. Non-Hispanic black race was associated with lower odds of interest in medication trials as diagnosed volunteers (OR=0.61, 0.40–0.93). Conclusions We found high levels of interest in MRP that contrast with low levels of prior research participation. Interest is higher in medical research involving noninvasive designs. Comparatively lower levels of interest in MRP among non-Hispanic blacks and those with less education raise concerns about disparities in future study enrollment. PMID:24456538

  20. 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.

  1. 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

  2. Mentoring in Clinical-Translational Research: A Study of Participants in Master's Degree Programs.

    PubMed

    McGinn, Aileen P; Lee, Linda S; Baez, Adriana; Zwanziger, Jack; Anderson, Karl E; Seely, Ellen W; Schoenbaum, Ellie

    2015-12-01

    Research projects in translational science are increasingly complex and require interdisciplinary collaborations. In the context of training translational researchers, this suggests that multiple mentors may be needed in different content areas. This study explored mentoring structure as it relates to perceived mentoring effectiveness and other characteristics of master's-level trainees in clinical-translational research training programs. A cross-sectional online survey of recent graduates of clinical research master's program was conducted. Of 73 surveys distributed, 56.2% (n = 41) complete responses were analyzed. Trainees were overwhelmingly positive about participation in their master's programs and the impact it had on their professional development. Overall the majority (≥75%) of trainees perceived they had effective mentoring in terms of developing skills needed for conducting clinical-translational research. Fewer trainees perceived effective mentoring in career development and work-life balance. In all 15 areas of mentoring effectiveness assessed, higher rates of perceived mentor effectiveness was seen among trainees with ≥2 mentors compared to those with solo mentoring (SM). In addition, trainees with ≥2 mentors perceived having effective mentoring in more mentoring aspects (median: 14.0; IQR: 12.0-15.0) than trainees with SM (median: 10.5; IQR: 8.0-14.5). Results from this survey suggest having ≥2 mentors may be beneficial in fulfilling trainee expectations for mentoring in clinical-translational training.

  3. 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

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

    PubMed

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

    2000-05-01

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

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

    PubMed

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

    2014-12-01

    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

  7. 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

  8. 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

  9. 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

  10. 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.

  11. 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

  12. Balancing access to participation in research and protection from risks: applying the principle of justice.

    PubMed

    Kiskaddon, Sarah H

    2005-04-01

    The problem for Institutional Review Boards (IRBs) of balancing access to participation in research with protection of research subjects has always been a difficult one. IRBs, charged with applying the "Common Rule," as well as the Belmont Principles, in their review of clinical research, are given little guidance on approaching this problem. This article argues that the third Belmont Principle, the Justice Principle, may provide a useful framework for considering this balance. The changing research environment is discussed in an historical context, and the Justice Principle is considered both in the context of individual rights, as well as the potential benefit to classes of people. The author further suggests that application of the Justice Principle be driven by findings derived from an analysis of the first 2 principles. This feedback model will enable a more formal application of the Justice Principle and less ambiguous, more transparent, decisions regarding the equitable selection of subjects. The author calls for more systematic attention to the Justice Principle by IRBs, and proposes a model that includes incorporating the deliberation of the other Belmont Principles into the Justice Principle.

  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. Taking stock of four decades of quantitative research on stakeholder participation and evaluation use: a systematic map.

    PubMed

    Daigneault, Pierre-Marc

    2014-08-01

    Stakeholder participation and evaluation use have attracted a lot of attention from practitioners, theorists and researchers. A common hypothesis is that participation is positively associated with evaluation use. Whereas the number of empirical studies conducted on this topic is impressive, quantitative research has held a minority position within this scientific production. This study mobilizes systematic review methods to 'map' the empirical literature that has quantitatively studied participation and use. The goal is to take stock and assess the strength of evidence of this literature (but not to synthesize the findings) and, based on this assessment, to provide directions for future research.

  15. 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

  16. Investigating the Experiences of Childhood Cancer Patients and Parents Participating in Optional Nontherapeutic Clinical Research Studies in the UK

    PubMed Central

    Errington, Julie; Malik, Ghada; Evans, Julie; Baston, Jenny; Parry, Annie; Price, Lisa; Johnstone, Hina; Peters, Selena; Oram, Victoria; Howe, Karen; Whiteley, Emma; Tunnacliffe, Jane

    2016-01-01

    Background While the majority of childhood cancer clinical trials are treatment related, additional optional research investigations may be carried out that do not directly impact on treatment. It is essential that these studies are conducted ethically and that the experiences of families participating in these studies are as positive as possible. Methods A questionnaire study was carried out to investigate the key factors that influence why families choose to participate in optional nontherapeutic research studies, the level of understanding of the trials involved, and the experiences of participation. Results A total of 100 participants from six UK centers were studied; 77 parents, 10 patients >16 years, and 13 patients aged 8–15 years. Ninety‐seven percent of parents and 90% of patients felt that information provided prior to study consent was of the right length, with 52% of parents and 65% of patients fully understanding the information provided. Seventy‐four percent of parents participated in research studies in order to “do something important”, while 74% of patients participated “to help medical staff”. Encouragingly, <5% of participants felt that their clinical care would be negatively affected if they did not participate. Positive aspects of participation included a perception of increased attention from medical staff. Negative aspects included spending longer periods in hospital and the requirement for additional blood samples. Ninety‐six percent of parents and 87% of patients would participate in future studies. Conclusions The study provides an insight into the views of childhood cancer patients and their parents participating in nontherapeutic clinical research studies. Overwhelmingly, the findings suggest that participation is seen as a positive experience. PMID:26928983

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

    PubMed

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

    2014-01-01

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

  18. Using Biometrics for Participant Identification in a Research Study: a Case Report

    PubMed Central

    Corby, Patricia M.; Schleyer, Titus; Spallek, Heiko; Hart, Thomas C.; Weyant, Robert J.; Corby, Andrea L.; Bretz, Walter A.

    2006-01-01

    This paper illustrates the use of biometrics through the application of an iris-based biometrics system for identifying twins and their parents in a longitudinal research study. It explores the use of biometrics (science of measuring physical or anatomical characteristics of individuals) as a technology for correct identification of individuals during longitudinal studies to help ensure data fidelity. Examples of these circumstances include longitudinal epidemiological and genetic studies, clinical trials, and multicenter collaborative studies where accurate identification of subjects over time can be difficult when the subject may be young or an unreliable source of identification information. The use of technology can automate the process of subject identification thereby reducing the need to depend on subject recall during repeated visits thus helping to ensure data quality. This case report provides insights that may serve as useful hints for those responsible for planning system implementation that involves participants' authentication that would require a more secure form of identification. PMID:16357359

  19. 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

  20. 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

  1. 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…

  2. 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…

  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. 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

    ..., 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...

  5. 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

    ..., 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...

  6. 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

    ..., 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...

  7. Awareness and interest in biospecimen donation for cancer research: views from gatekeepers and prospective participants in the Latino community.

    PubMed

    Rodriguez, Elisa Marie; Torres, Essie T; Erwin, Deborah O

    2013-10-01

    Latinos are one of the fastest-growing population groups in the USA, and are underrepresented in scientific research and even more so in genetic research. The disproportionately lower number of certain subpopulations participating in biomedical research has a significant impact on the representativeness of scientific outcomes. We established a collaboration with scientists at a designated National Cancer Institute comprehensive cancer center to test the feasibility of community-based approaches for engaging Latinos in biospecimen donation for cancer genomic research. A methods triangulation approach was applied to gain a deeper understanding from the community, that included key informant interviews with Latino community leaders (N = 6), four focus groups (N = 22) with members of the Latino community, and the use of an audience response system within the focus groups to capture quantitative data. Overall, the majority of participants had never participated in biospecimen donation; however, despite being unaware of the biobank, they expressed willingness to participate as a way to help advance research. Themes included: Confusion on what biospecimen donation process entails; Barriers to and incentives for participation; Strategies and locations for reaching the Latino community. Clear communication of the "public good" as it relates to biospecimen donation by healthy/non-patient participants is a less clearly conceptualized message; yet, the significance of delivering this message is important to gaining participation and increasing the diversity of samples available for cancer genomic studies from a broader community context.

  8. 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…

  9. 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

  10. 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

  11. 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

  12. 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

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

    PubMed

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

    2011-01-01

    In this brief investigation, the informational needs of research participants [n = 62; mothers who had breastfed, taken codeine, and participated in a pharmacogenetic study] were probed during a counselling session in which they received their CYP2D6 pharmacogenetic research results and overall study results. In addition to the standard information, developed by a multidisciplinary team and provided to the participants, 38% of individuals had further questions related to potential adverse effects in babies, future codeine or medication use, heredity, and consequences for policies and programmes. The diversity and complexity of the questions raised support the need to communicate the results in the context of personalized genetic counselling information sessions. PMID:21467605

  14. Multiple co-morbidities and interest in research participation among clients of a nonprofit food distribution site

    PubMed Central

    Higashi, Robin T.; Craddock Lee, Simon J.; Leonard, Tammy; Cuate, Erica L.; Cole, Jay; Pruitt, Sandi L.

    2015-01-01

    Background Persons accessing food from nonprofit distribution sites face numerous challenges and typically have significant unmet health needs. However, given limited and intermittent healthcare system engagement, this vulnerable population is under-represented in clinical research. We sought to better understand the health needs of a non-clinical population to inform future research and interventions. Methods Focus groups were conducted in English (n=4) and Spanish (n=4) with clients of Crossroads Community Services (CCS), the largest distributor of North Texas Food Bank. Discussions probed participants' health status, healthcare utilization, understanding and utilization of mammography, and attitudes toward participation in research. Results Participants included 42 CCS clients, primarily Hispanic or African-American women. Participants reported multiple co-morbid conditions among household members, yet utilization of health services was often limited by cost. The majority expressed interest in participating in research to communicate their health concerns and obtain emotional support. Conclusion CCS clients represent a high-need, under-reached population willing to engage in health-related research that affords them opportunity to connect with peers in group settings and obtain information to improve management of daily life challenges. The Community Assistance Research (CARe) Initiative, a community-academic collaboration, establishes a much-needed opportunity for ongoing clinical research and intervention among this underserved population. PMID:26277918

  15. The effects of scope condition-based participant exclusion on experimental outcomes in expectation states research: A meta-analysis.

    PubMed

    Dippong, Joseph

    2012-03-01

    Expectation states theory employs several scope statements to specify the situational conditions that must be met for any test of the theory to be considered valid (Foschi, 1997). Collective orientation and task orientation are two scope conditions that researchers frequently implement as selection criteria for a participant's inclusion in an analytic sample. Although excluding participants who fail to meet scope conditions is theoretically consistent, researchers have yet to establish how this practice affects experimental outcomes. I employ meta-analysis to compare studies within the expectation states tradition in which participants are excluded for failure to meet scope conditions to studies in which no similar exclusions are made. Results suggest that studies that exclude participants for scope violations demonstrate a decreased baseline tendency to reject influence. I contend that adopting a more universal approach to the measurement and application of scope conditions would be methodologically and theoretically beneficial to expectation states research.

  16. [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.

  17. The Vulnerabilities of Orphaned Children Participating in Research: A Critical Review and Factors for Consideration for Participation in Biomedical and Behavioral Research

    PubMed Central

    Thompson, Rachel T.; Meslin, Eric M.; Braitstein, Paula K. A.; Nyandiko, Winstone M.; Ayaya, Samuel O.; Vreeman, Rachel C.

    2013-01-01

    Orphans are a subpopulation with a unique set of additional vulnerabilities. Increasing focus on children’s rights, pediatric global health, and pediatric research makes it imperative to recognize and address unique vulnerabilities of orphaned children. This paper describes the unique vulnerabilities of the orphaned pediatric population and offers a structured set of factors that require consideration when including orphans in biomedical research. Pediatric orphans are particularly vulnerable due to decreased economic resources, psychosocial instability, increased risk of abuse, and delayed/decreased access to healthcare. These vulnerabilities are significant. By carefully considering each issue in a population in a culturally specific and study-specific manner, researchers can make valuable contributions to the overall health and well-being of this uniquely vulnerable population. PMID:23086048

  18. 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…

  19. 34 CFR 350.65 - What level of participation is required of trainees in an Advanced Rehabilitation Research...

    Code of Federal Regulations, 2011 CFR

    2011-07-01

    ... SERVICES, DEPARTMENT OF EDUCATION DISABILITY AND REHABILITATION RESEARCH PROJECTS AND CENTERS PROGRAM What... 34 Education 2 2011-07-01 2010-07-01 true What level of participation is required of trainees in an Advanced Rehabilitation Research Training Project? 350.65 Section 350.65 Education Regulations...

  20. 34 CFR 350.65 - What level of participation is required of trainees in an Advanced Rehabilitation Research...

    Code of Federal Regulations, 2012 CFR

    2012-07-01

    ... SERVICES, DEPARTMENT OF EDUCATION DISABILITY AND REHABILITATION RESEARCH PROJECTS AND CENTERS PROGRAM What... 34 Education 2 2012-07-01 2012-07-01 false What level of participation is required of trainees in an Advanced Rehabilitation Research Training Project? 350.65 Section 350.65 Education Regulations...

  1. 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

    ... SERVICES, DEPARTMENT OF EDUCATION DISABILITY AND REHABILITATION RESEARCH PROJECTS AND CENTERS PROGRAM What... 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...

  2. 34 CFR 350.65 - What level of participation is required of trainees in an Advanced Rehabilitation Research...

    Code of Federal Regulations, 2013 CFR

    2013-07-01

    ... SERVICES, DEPARTMENT OF EDUCATION DISABILITY AND REHABILITATION RESEARCH PROJECTS AND CENTERS PROGRAM What... 34 Education 2 2013-07-01 2013-07-01 false What level of participation is required of trainees in an Advanced Rehabilitation Research Training Project? 350.65 Section 350.65 Education Regulations...

  3. 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…

  4. 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.

  5. 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

  6. Physical Activity Participation of Disabled Children: A Systematic Review of Conceptual and Methodological Approaches in Health Research

    PubMed Central

    Ross, Samantha Mae; Bogart, Kathleen R.; Logan, Samuel W.; Case, Layne; Fine, Jeremiah; Thompson, Hanna

    2016-01-01

    Physical activity (PA) participation is widely recognized as a critical component of health and development for disabled and non-disabled children. Emergent literature reflects a paradigm shift in the conceptualization of childhood PA as a multi-dimensional construct, encompassing aspects of physical performance, and self-perceived engagement. However, ambiguity remains around how participation as a health construct is integrated into PA research. The primary objective of the present mini-review is to critically examine current conceptual and methodological approaches to evaluating PA participation among disabled children. We conducted a systematic review of contemporary literature (published between 2000 and 2016). Seventeen articles met inclusion criteria, and their research approach was classified into guiding framework, definition of the key construct, and measurement used. The primary guiding framework was the international classification of functioning, disability and health. An explicit definition of PA participation was absent from all studies. Eight studies (47%) operationalized PA and participation as independent constructs. Measurements included traditional performance-based aspects of PA (frequency, duration, and intensity), and alternative participation measures (subjective perception of involvement, inclusion, or enjoyment). Approximately 64% of included articles were published in the past 2 years (2014–2016) indicating a rising interest in the topic of PA participation. Drawing from the broader discussion of participation in the literature, we offer a working definition of PA participation as it pertains to active, health-associated behaviors. Further description of alternative approaches to framing and measuring PA participation are offered to support effective assessment of health status among disabled children. PMID:27656639

  7. Physical Activity Participation of Disabled Children: A Systematic Review of Conceptual and Methodological Approaches in Health Research.

    PubMed

    Ross, Samantha Mae; Bogart, Kathleen R; Logan, Samuel W; Case, Layne; Fine, Jeremiah; Thompson, Hanna

    2016-01-01

    Physical activity (PA) participation is widely recognized as a critical component of health and development for disabled and non-disabled children. Emergent literature reflects a paradigm shift in the conceptualization of childhood PA as a multi-dimensional construct, encompassing aspects of physical performance, and self-perceived engagement. However, ambiguity remains around how participation as a health construct is integrated into PA research. The primary objective of the present mini-review is to critically examine current conceptual and methodological approaches to evaluating PA participation among disabled children. We conducted a systematic review of contemporary literature (published between 2000 and 2016). Seventeen articles met inclusion criteria, and their research approach was classified into guiding framework, definition of the key construct, and measurement used. The primary guiding framework was the international classification of functioning, disability and health. An explicit definition of PA participation was absent from all studies. Eight studies (47%) operationalized PA and participation as independent constructs. Measurements included traditional performance-based aspects of PA (frequency, duration, and intensity), and alternative participation measures (subjective perception of involvement, inclusion, or enjoyment). Approximately 64% of included articles were published in the past 2 years (2014-2016) indicating a rising interest in the topic of PA participation. Drawing from the broader discussion of participation in the literature, we offer a working definition of PA participation as it pertains to active, health-associated behaviors. Further description of alternative approaches to framing and measuring PA participation are offered to support effective assessment of health status among disabled children. PMID:27656639

  8. Physical Activity Participation of Disabled Children: A Systematic Review of Conceptual and Methodological Approaches in Health Research

    PubMed Central

    Ross, Samantha Mae; Bogart, Kathleen R.; Logan, Samuel W.; Case, Layne; Fine, Jeremiah; Thompson, Hanna

    2016-01-01

    Physical activity (PA) participation is widely recognized as a critical component of health and development for disabled and non-disabled children. Emergent literature reflects a paradigm shift in the conceptualization of childhood PA as a multi-dimensional construct, encompassing aspects of physical performance, and self-perceived engagement. However, ambiguity remains around how participation as a health construct is integrated into PA research. The primary objective of the present mini-review is to critically examine current conceptual and methodological approaches to evaluating PA participation among disabled children. We conducted a systematic review of contemporary literature (published between 2000 and 2016). Seventeen articles met inclusion criteria, and their research approach was classified into guiding framework, definition of the key construct, and measurement used. The primary guiding framework was the international classification of functioning, disability and health. An explicit definition of PA participation was absent from all studies. Eight studies (47%) operationalized PA and participation as independent constructs. Measurements included traditional performance-based aspects of PA (frequency, duration, and intensity), and alternative participation measures (subjective perception of involvement, inclusion, or enjoyment). Approximately 64% of included articles were published in the past 2 years (2014–2016) indicating a rising interest in the topic of PA participation. Drawing from the broader discussion of participation in the literature, we offer a working definition of PA participation as it pertains to active, health-associated behaviors. Further description of alternative approaches to framing and measuring PA participation are offered to support effective assessment of health status among disabled children.

  9. 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…

  10. Participation in Education and Training, 1980-1994. Longitudinal Surveys of Australian Youth. Research Report.

    ERIC Educational Resources Information Center

    Long, Michael; Carpenter, Peter; Hayden, Martin

    This report draws on the Youth in Transition surveys to present educational participation rates for various categories of Australian youth. The focus is on how educational experiences differ among the categories and on the way in which such differences may have changed over time. Chapter 2 describes the way in which educational participation of…

  11. Turning On and Tuning In: Media Participation in the Arts. Research Division Report #33.

    ERIC Educational Resources Information Center

    Gray, Charles M.

    Data gleaned from the 1982, 1985, and 1992 Surveys of Public Participation in the Arts (SPPAs) were used in this analysis of participation in the arts via television, radio, and sound recordings. The arts examined were jazz, classical music, opera, musicals and operettas, plays, dance, and the visual arts. Selected findings are as follows: (1)…

  12. 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

  13. Research participation among Asian American women at risk for cervical cancer: exploratory pilot of barriers and enhancers.

    PubMed

    Giarelli, Ellen; Bruner, Deborah Watkins; Nguyen, Ethan; Basham, Sarah; Marathe, Priya; Dao, Diane; Huynh, To Nhu; Cappella, Joseph; Nguyen, Giang

    2011-12-01

    The purposes of this exploratory pilot were to describe perceived barriers to participation in cervical cancer prevention research, and identify culturally-appropriate communication strategies to recruit Asian women into cancer prevention research. This thematic analysis of transcripts, from focus groups and in-depth interviews, was conducted in English, Vietnamese, and Mandarin Chinese, at a community clinic in Philadelphia, Pennsylvania. Thirty participants were either Vietnamese (35%) or Chinese (65%). Mean age was 36.8 (SD 9.9 years). Reasons for non-participation were: lack of time, inconvenience, mistrust of institutions and negative experiences, lack of translated materials, feeling intimidated by English, and the lack of translation of key words or terms. Enhancers of participation were: endorsement by a spouse, monetary compensation, and a personalized approach that offers a benefit for Asian women. To increase participation, first one must remove language barriers and, preferably, use specific dialects. Second, one must specify if benefits are indirectly or directly related to the family or cultural group. Asian research participants in our study consistently expressed that a significant motivator was their desire to be of help, in some way, to a family member or to the Asian community in general.

  14. 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

    2015-05-19

    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.

  15. Obtaining family consent for participation in Alzheimer's research in a Cuban-American population: strategies to overcome the barriers.

    PubMed

    Williams, C L; Tappen, R; Buscemi, C; Rivera, R; Lezcano, J

    2001-01-01

    Cultural values and beliefs affect family attitudes toward participation in research. Significant resistance to allowing their elders with dementia to participate in clinical research was encountered in Cuban-American families. These families expressed concern about disturbing the elder's comfort (tranquilidad) and solitude (soledad). Furthermore, most believed that intervention would be futile. Feelings of guilt associated with nursing home placement may have been exacerbated by the suggestion that active intervention could be effective. Strategies to overcome these barriers included reduced emphasis on the potential superiority of the intervention to be tested, reassurance that contact with research staff was usually appreciated by participants, arrangements to talk with the family as a group about the study, and increased use of Spanish-language consent forms. PMID:11398568

  16. Obtaining family consent for participation in Alzheimer's research in a Cuban-American population: strategies to overcome the barriers.

    PubMed

    Williams, C L; Tappen, R; Buscemi, C; Rivera, R; Lezcano, J

    2001-01-01

    Cultural values and beliefs affect family attitudes toward participation in research. Significant resistance to allowing their elders with dementia to participate in clinical research was encountered in Cuban-American families. These families expressed concern about disturbing the elder's comfort (tranquilidad) and solitude (soledad). Furthermore, most believed that intervention would be futile. Feelings of guilt associated with nursing home placement may have been exacerbated by the suggestion that active intervention could be effective. Strategies to overcome these barriers included reduced emphasis on the potential superiority of the intervention to be tested, reassurance that contact with research staff was usually appreciated by participants, arrangements to talk with the family as a group about the study, and increased use of Spanish-language consent forms.

  17. 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.

  18. 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…

  19. 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

  20. 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

  1. 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.

  2. 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

  3. 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…

  4. 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…

  5. 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…

  6. What happens after participants complete a Union-MSF structured operational research training course?

    PubMed

    Guillerm, N; Tayler-Smith, K; Berger, S D; Bissell, K; Kumar, A M V; Ramsay, A; Reid, A J; Zachariah, R; Harries, A D

    2014-06-21

    Contexte : Huit cours de recherche opérationnelle (OR) structurée achevés de L'Union et Médecins sans Frontières pour des participants de pays à revenu faible ou intermédiaire. On ignore si les participants continuent à pratiquer la recherche opérationnelle après avoir suivi le cours.Objectifs : Déterminer 1) les activités de recherche des participants et de leurs institutions après la fin du cours ; 2) l'influence des bourses de recherche sur ces activités ; et 3) les activités des collègues n'ayant pas assisté au cours, stratifiées par sexe, région et statut professionnel.Schéma : Une enquête par questionnaire auto-administré envoyée par e-mail.Résultats : Sur 83 participants qui ont terminé le cours, 76 (92%) ont répondu au questionnaire. Après la fin du cours, 47 (62%) participants ont réalisé de nouveaux projets de recherche, 38 (50%) ont publié des articles (comparés à 25 [33%] qui en avaient publié avant le cours), 42 (55%) ont exposé des affiches ou présenté des résumés oraux lors de conférences, 33 (43%) ont été facilitateurs lors de cours suivants, 29 (38%) ont revu des articles scientifiques, 25 (33%) ont obtenu un financement ultérieur pour le recherche opérationnelle et 55 (72%) ont affirmé que leurs institutions étaient impliquées dans la mise en œuvre de recherche ou de renforcement des capacités. Les participants au cours ont eu une meilleure performance que les autres. Parmi ces derniers, les hommes et les participants venant d'Asie ont eu de meilleurs résultats que les femmes et les participants venant d'Afrique (P < 0,05).Conclusion : Une proportion significative de participants a continué à réaliser des recherches opérationnelles après la fin du cours. Ces constatations sont encourageantes en termes d'impact à long terme de ce modèle de renforcement des capacités.

  7. 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)…

  8. 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…

  9. 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…

  10. 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…

  11. Research participation by low-income and racial/ethnic minority groups: how payment may change the balance.

    PubMed

    Walter, Jennifer K; Burke, James F; Davis, Matthew M

    2013-10-01

    Minorities are underenrolled in clinical research trials, and one-third of trials are underenrolled overall. The role of payment has not been studied at the national level as an explanation for enrollment patterns. Our objective was to examine the distribution of self-reported previous research participation across different sociodemographic groups; to assess the public's perception of fair payment for a low-risk medicine trial and the association between requested payment and sociodemographic characteristics; to estimate the amount of payment for a medication trial to achieve proportional representation of minorities and different socioeconomic groups. This was a cross-sectional study with nationally representative data collected in 2011 by the C.S. Mott Children's Hospital National Poll on Children's Health. To determine the relationship between perceived fair payment and individual-level characteristics, we used multivariable linear regression. With 60% participation rate, in a sample of 2,150 respondents 11% (n = 221) of the sample had previously participated in medical research. Requested payment differed significantly by racial/ethnic group with Hispanics requesting more payment than non-Hispanic whites (0.37 [95%CI 0.02, 0.72]) In contrast to payment at $49, $149, and $249, payment at $349 yielded proportional representation of racial/ethnic minority groups. Hispanics requested higher payment for research participation, suggesting a possible explanation for their underenrollment.

  12. 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…

  13. 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…

  14. 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.

  15. 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.

  16. Enhancing Latinas' participation in research on sexual assault: cultural considerations in the design and implementation of research in the Latino community.

    PubMed

    Ahrens, Courtney E; Isas, Libier; Viveros, Monica

    2011-02-01

    To provide a more complete picture of the prevalence, impact, and treatment of sexual assault among Latinas, researchers must begin to develop and employ culturally competent recruitment and data-collection procedures that can facilitate participation and disclosure. In this article, we sought to synthesize recommendations from research with Latino populations, community-based and participatory action research, and research on sexual assault to provide a list of suggestions for conducting culturally competent research about sexual assault with Latino populations. Innovative examples from our own focus group study with Latinas are provided throughout.

  17. 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.

  18. Payments to Normal Healthy Volunteers in Phase 1 Trials: Avoiding Undue Influence While Distributing Fairly the Burdens of Research Participation

    PubMed Central

    2009-01-01

    Clinical investigators must engage in just subject recruitment and selection and avoid unduly influencing research participation. There may be tension between the practice of keeping payments to participants low to avoid undue influence and the requirements of justice when recruiting normal healthy volunteers for phase 1 drug studies. By intentionally keeping payments low to avoid unduly influenced participation, investigators, on the recommendation or insistence of institutional review boards, may be targeting or systematically recruiting healthy adult members of lower socio-economic groups for participation in phase 1 studies. Investigators are at risk of routinely failing to fulfill the obligation of justice, which prohibits the systematic targeting and recruiting of subjects for reasons unrelated to the nature of the study. Insofar as we take seriously the obligation to engage in just subject recruitment and selection, I argue that we must acknowledge the implications low payments might have for subject recruitment and selection and examine the effect of low payments. If low payments de facto target the less well-off for phase 1 studies, we must defend the priority ranking of the obligation to avoid undue influence over the obligation of justice or adopt an alternative recruitment approach. This paper identifies a number of alternatives to the current system of low-value payments to research participants. PMID:19190076

  19. 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…

  20. Parent Participation Reading Clinic--A Research-Demonstration Project. Final Report.

    ERIC Educational Resources Information Center

    Wise, James H.

    The general purpose of this study was to explore the possibility of developing a Parent Participation Reading Clinic home-based instructional model for assisting in the teaching of reading to economically disadvantaged elementary school children. Working within a community-based child health care agency in Washington, D.C., the Parent…

  1. 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,…

  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. 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…

  4. 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…

  5. 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…

  6. 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…

  7. 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…

  8. "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

  9. "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.

  10. Physican Perspectives on Incentives to Participate in Practice-Based Research: A Greater Rochester Practice-Based Research Network (GR-PBRN) Study

    PubMed Central

    Gibson, Karen; Szilagyi, Peter; Swanger, Carlos M.; Campbell, Thomas; McInerny, Thomas; Duckett, Joseph; Guido, Joseph J.; Fiscella, Kevin

    2010-01-01

    Objectives To understand factors associated with primary care physician research participation in a practice-based research network (PBRN), and to compare perspectives by specialty. Methods We surveyed primary care internists, family physicians, and pediatricians in Monroe County, New York, regarding their past experience with research and incentives to participating in practice-based research. We performed descriptive and tabular analyses to assess perceptions and used chi-square and ANOVA to compare perceptions across the three specialties. Results Response rate was 33%. The most frequently endorsed aspects of collaboration were: the opportunity to enact quality improvement (78%), contribution to clinical knowledge (75%), and intellectual stimulation (65%). Significant differences among the primary care specialties were found in two aspects: internists were more likely to endorse additional source of income as “important”, and family medicine physicians were more likely to cite the opportunity to shape research questions, projects and journal articles as “important.” Conclusion Physicians across all three specialties cited the opportunity to enact quality improvement and contribution to clinical knowledge as important incentives to participating in practice-based research. This supports the importance of strengthening the interface between research and quality improvement in PBRN projects. Further study is needed to assess reasons for specialty differences if PBRNs are to become successful in research involving adult patients. PMID:20616287

  11. 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.

  12. 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

  13. 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

  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. Educational Needs of Patients Undergoing Total Joint Arthroplasty

    PubMed Central

    MacKay, Crystal; Saryeddine, Tina; Davis, Aileen M.; Flannery, John F.; Jaglal, Susan B.; Levy, Charissa; Mahomed, Nizar

    2010-01-01

    ABSTRACT Purpose: To identify the educational needs of adults who undergo total hip and total knee replacement surgery. Methods: A qualitative research design using a semi-standardized interviewing method was employed. A purposive sampling technique was used to recruit participants, who were eligible if they were scheduled to undergo total hip or total knee replacement or had undergone total hip or total knee replacement in the previous 3 to 6 months. A comparative contrast method of analysis was used. Results: Of 22 potential participants who were approached, 15 participated. Five were booked for upcoming total hip or total knee replacement and 10 had undergone at least one total hip or total knee replacement in the previous 3 to 6 months. Several themes related to specific educational needs and factors affecting educational needs, including access, preoperative phase, surgery and medical recovery, rehabilitation process and functional recovery, fears, and expectations counterbalanced with responsibility, emerged from the interviews. Conclusions: Educational needs of adults who undergo total hip and knee replacement surgery encompass a broad range of topics, confirming the importance of offering an all-inclusive information package regarding total hip and total knee replacement. PMID:21629598

  16. 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…

  17. 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

  18. 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.

  19. 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

  20. 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

  1. 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.

  2. 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

  3. 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

  4. 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…

  5. 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…

  6. 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…

  7. 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…

  8. 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…

  9. 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…

  10. 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…

  11. 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…

  12. 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…

  13. 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…

  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. Ethical Challenges and Complexities of Including People with Intellectual Disability as Participants in Research

    ERIC Educational Resources Information Center

    Iacono, Teresa

    2006-01-01

    The aim of this article is to consider the implications for research involving people with intellectual disability--a vulnerable group--of ethics committees' attempts to apply these guidelines. The issue explored is whether committees such as Human Research Ethics Committees (HRECS) and Institutional Review Boards (IRBs) are becoming increasingly…

  16. 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,…

  17. 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…

  18. 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

  19. The limitations of "vulnerability" as a protection for human research participants.

    PubMed

    Levine, Carol; Faden, Ruth; Grady, Christine; Hammerschmidt, Dale; Eckenwiler, Lisa; Sugarman, Jeremy

    2004-01-01

    Vulnerability is one of the least examined concepts in research ethics. Vulnerability was linked in the Belmont Report to questions of justice in the selection of subjects. Regulations and policy documents regarding the ethical conduct of research have focused on vulnerability in terms of limitations of the capacity to provide informed consent. Other interpretations of vulnerability have emphasized unequal power relationships between politically and economically disadvantaged groups and investigators or sponsors. So many groups are now considered to be vulnerable in the context of research, particularly international research, that the concept has lost force. In addition, classifying groups as vulnerable not only stereotypes them, but also may not reliably protect many individuals from harm. Certain individuals require ongoing protections of the kind already established in law and regulation, but attention must also be focused on characteristics of the research protocol and environment that present ethical challenges.

  20. 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…

  1. 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…

  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. Timing invitations to participate in clinical research: preliminary versus informed consent.

    PubMed

    Iltis, Ana Smith

    2005-02-01

    This article addresses the impact of the potential conflict between the roles of physicians who are both clinicians and researchers on the recruitment of persons into research trials. It has been proposed (1) that a physician breaches inter-role confidentiality when he or she uses information gathered in his or her clinical role to inform patients about trials for which they may be eligible and (2) that clinician-researchers should adopt a model of preliminary consent to be approached about research prior to commencing a clinical relationship. This article argues that even if we grant the legitimacy of inter-role confidentiality (which is open to question), there are circumstances in which other obligations physicians bear override the obligation of inter-role confidentiality. Moreover, it is argued that the practice of preliminary consent is morally suspect and that such consent cannot be deemed valid. The article concludes with a series of recommendations of ways in which the legitimate concern regarding the conflicting roles of clinician-researchers can be addressed in the recruitment stage of research.

  4. Factors influencing parental consent for participation in clinical research involving their children in Egypt.

    PubMed

    Nasef, N; Shabaan, A; Mohammed, S; Kandel, S; Settin, A; Zedan, M; Fouda, A

    2014-04-03

    Factors affecting parents' decision to involve their children in clinical research have not been studied in all cultural backgrounds. We aimed to explore the attitudes and beliefs influencing parents' decision to involve their children in clinical research in Mansoura, Egypt. Of 523 families approached, 357 filled the questionnaire. Only 98 (27.5%) parents consented to involve their child in clinical research. The children of consenters were significantly older than refusers: 8.6 (SD 7.2) versus 2.6 (SD 1.2) years. Factors favouring consent were: research of benefit to child (84.7%), enough explanation about the benefits (40.8%) and to learn more about child's condition (29.6%). Factors favouring refusal were: use of new drugs or vaccines (89.6%) and invasive procedures (84.2%). Parents' rate of consent was positively correlated with the research being non-invasive and the belief that research was of benefit to their child and negatively correlated with belief that refusal may negatively affect the care provided to their child.

  5. 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

  6. 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.

  7. 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

  8. 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

  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. Why we should not seek individual informed consent for participation in health services research

    PubMed Central

    Cassell, J; Young, A

    2002-01-01

    Ethics committees now require that individuals give informed consent to much health services research, in the same way as for clinical research. This is misguided. Existing ethical guidelines do not help us decide how to seek consent in these cases, and have allowed managerial experimentation to remain largely unchecked. Inappropriate requirements for individual consent can institutionalise health inequalities and reduce access to services for vulnerable groups. This undermines the fundamental purpose of the National Health Service (NHS), and ignores our rights and duties as its members, explored here. Alternative forms of community consent should be actively pursued. PMID:12356960

  11. Why we should not seek individual informed consent for participation in health services research.

    PubMed

    Cassell, J; Young, A

    2002-10-01

    Ethics committees now require that individuals give informed consent to much health services research, in the same way as for clinical research. This is misguided. Existing ethical guidelines do not help us decide how to seek consent in these cases, and have allowed managerial experimentation to remain largely unchecked. Inappropriate requirements for individual consent can institutionalise health inequalities and reduce access to services for vulnerable groups. This undermines the fundamental purpose of the National Health Service (NHS), and ignores our rights and duties as its members, explored here. Alternative forms of community consent should be actively pursued.

  12. 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

  13. 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…

  14. 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…

  15. 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…

  16. 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…

  17. An Analysis of Student Attitudes in an Eight Week Research Participation Program for Exceptional Secondary Students

    ERIC Educational Resources Information Center

    Bottcher, Lon E.

    1971-01-01

    Presents the results of a study designed to determine what high school students thought of an eight week summer science research program held during the summer of 1968 at the University of Iowa. Includes a list of program objectives and the two questionnaires used for this study. (PR)

  18. "They Discluded Me": Possibilities and Limitations of Children's Participation in Inclusion Research in South Africa

    ERIC Educational Resources Information Center

    Walton, Elizabeth

    2011-01-01

    Beyond realising the right of children and young people to be heard in routine interactions, there is much scope for research with (rather than on) children. This is particularly pertinent in the field of inclusive education where there is potential for the voice of children and young people to be a lever for change and to promote inclusive…

  19. 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…

  20. 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…

  1. 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…

  2. 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…

  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. 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…

  5. 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…

  6. 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…

  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

    2016-01-01

    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. Governance of stem cell research: public participation and decision-making in China, Japan, South Korea and Taiwan.

    PubMed

    Sleeboom-Faulkner, Margaret; Hwang, Seyoung

    2012-10-01

    This article compares and explores forms of 'public' participation in the development of bioethical governance of human embryonic stem cell research (hESR) in four Asian societies, and in doing so it contributes to the wider discussions on expertise and public inclusion. The article aims to add nuance to the concept of 'public consultation' by focusing on the contested meanings and relationships through which public roles and public debates are defined. The analysis seeks to go beyond a straightforward comparison by interpreting public discussions of hESR as being influenced by both local conditions and interconnected global science institutions. An adequate understanding of the public participation in debates on science requires the analysis of (a) particular reasons for scientific issues to require public discussion; (b) pressures of transnational forces; (c) variability of publics relevant to bioethical regulation; and, (d) the effects of institutionalization of bioethics. This study uses data from fieldwork conducted between 2006 and 2010 in four Asian countries. Most of the interviews were conducted in the local languages and concerned various kinds of public participation in bioethics activities, as well as the views of stem cell scientists on the need to involve the public in discussions on the acceptability of their research.

  9. 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.

  10. Developing guidance for pregnancy testing of adolescents participating in research: ethical, legal and practical considerations.

    PubMed

    Larcher, Vic; Brierley, Joe

    2016-10-01

    Adolescents need safe effective drugs that have undergone ethically approved testing in clinical trials; such studies often require pregnancy testing in 'women of childbearing age' which includes children/adolescents. There is a lack of consistent standard operating procedures for pregnancy testing in these individuals, in either research or clinical (ie, both preprocedure and clinical emergency) settings. Some harmonisation between a selective or universal testing approach based on a risk analysis of the trial drug or procedure would seem sensible. The need for pregnancy testing and the reasons for the method chosen (universal or selective) should be clearly defined in the research protocol. Research ethics committees (RECs) need to satisfy themselves that the selection of subjects to be tested, the procedures for obtaining consent and the respecting of the young person's confidentiality are appropriate and that management of any positive tests are in accord with local safeguarding policies and procedures. Researchers should have core competencies necessary to manage sensitive questioning and child safeguarding training. Clinical trials of medicinal product (CTIMP) pregnancy testing in females 13-15 years of age requires parental consent and the child's active involvement in the decision-making process ('assent') the implications of a positive test should be discussed in advance Children under 13 years should not normally be subject to pregnancy testing in CTIMPs, unless there are exceptional circumstances, for example, a trial of contraceptive agents of a high teratogenicity risk, as reviewed by a specialist paediatric REC. We analyse the ethical, legal and practical aspects of this issues and supply guidance to support those involved.

  11. 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

  12. 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

  13. Research participation by people with intellectual disability and mental health issues: an examination of the processes of consent.

    PubMed

    Taua, Chris; Neville, Christine; Hepworth, Julie

    2014-12-01

    Balancing the demands of research and ethics is always challenging, and even more so when recruiting vulnerable groups. Within the context of current legislation and international human rights declarations, it is strongly advocated that research can and must be undertaken with all recipients of health-care services. Research in the field of intellectual disability presents particular challenges in regards to consenting processes. This paper is a reflective overview and analysis of the complex processes undertaken, and events that occurred in gaining informed consent from people with intellectual disability to participate in a study exploring their experiences of being an inpatient in mental health hospitals within Aotearoa/New Zealand. A framework based on capacity, information, and voluntariness is presented, with excerpts from the field provided to explore consenting processes. The practical implications of the processes utilized are then discussed in order to stimulate debate regarding clearer and enhanced methods of gaining informed consent from people with intellectual disability.

  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. Birth order, sibling sex ratio, handedness, and sexual orientation of male and female participants in a BBC internet research project.

    PubMed

    Blanchard, Ray; Lippa, Richard A

    2007-04-01

    This study investigated the relations among sexual orientation, fraternal birth order (number of older brothers), and hand-preference. The participants were 87,798 men and 71,981 women who took part in a Web-based research project sponsored by the British Broadcasting Corporation (BBC). The results yielded some evidence confirming prior findings that non-right-handedness is associated with homosexuality in men and women, that older brothers increase the odds of homosexuality in men, and that the effect of older brothers on sexual orientation is limited to right-handed men. The evidence was weaker than in previous studies, however, probably because the usual relations among the variables of interest were partially obscured by the effects of other factors. Thus, the homosexual men and women had higher rates of non-right-handedness than their heterosexual counterparts, but the strongest handedness finding for both sexes was a marked tendency for participants who described themselves as ambidextrous also to describe themselves as bisexual. The birth order data were strongly affected by a tendency for the male participants to report an excess of older sisters, and the female participants to report an excess of older brothers. Statistical analyses confirmed that this was an artifact of the parental stopping rule, "Continue having children until you have offspring of both sexes." In subsequent analyses, participants were divided into those who did and did not have younger siblings, on the grounds that the data of the former would be less contaminated by the stopping rule. In the former subsample, the right-handed homo/bisexual males showed the typical high ratio of older brothers to older sisters, whereas the non-right-handed homo/bisexual males did not.

  16. Use of next generation sequencing technologies in research and beyond: are participants with mental health disorders fully protected?

    PubMed Central

    2012-01-01

    Background Next Generation Sequencing (NGS) is expected to help find the elusive, causative genetic defects associated with Bipolar Disorder (BD). This article identifies the importance of NGS and further analyses the social and ethical implications of this approach when used in research projects studying BD, as well as other psychiatric ailments, with a view to ensuring the protection of research participants. Methods We performed a systematic review of studies through PubMed, followed by a manual search through the titles and abstracts of original articles, including the reviews, commentaries and letters published in the last five years and dealing with the ethical and social issues raised by NGS technologies and genomics studies of mental disorders, especially BD. A total of 217 studies contributed to identify the themes discussed herein. Results The amount of information generated by NGS renders individuals suffering from BD particularly vulnerable, and increases the need for educational support throughout the consent process, and, subsequently, of genetic counselling, when communicating individual research results and incidental findings to them. Our results highlight the importance and difficulty of respecting participants’ autonomy while avoiding any therapeutic misconception. We also analysed the need for specific regulations on the use and communication of incidental findings, as well as the increasing influence of NGS in health care. Conclusions Shared efforts on the part of researchers and their institutions, Research Ethics Boards as well as participants’ representatives are needed to delineate a tailored consent process so as to better protect research participants. However, health care professionals involved in BD care and treatment need to first determine the scientific validity and clinical utility of NGS-generated findings, and thereafter their prevention and treatment significance. PMID:23256847

  17. 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

  18. 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

  19. Barriers to medical research participation as perceived by clinical trial investigators: communicating with rural and african american communities.

    PubMed

    Tanner, Andrea; Kim, Sei-Hill; Friedman, Daniela B; Foster, Caroline; Bergeron, Caroline D

    2015-01-01

    Clinical trials help advance public health and medical research on prevention, diagnosis, screening, treatment, and quality of life. Despite the need for access to quality care in medically underserved areas, clinical trial participation remains low among individuals in rural and African American communities. This study assessed clinical trial research in South Carolina's five main academic medical centers, focusing specifically on clinical trial investigators' perceived barriers to recruitment in the general population and in rural and African American communities. Online survey responses (N = 119) revealed that it was most difficult for investigators to recruit from rural areas and that rural residents were least likely to be represented in medical research, behind both the general public and African Americans. Barriers focusing on communication or awareness proved to be the biggest hurdles to finding potential participants in both the general public and rural communities. Psychological barriers to recruitment were perceived to be most prevalent in African American communities. Study findings provide important insights from the perspective of the clinical trial investigator that will aid in the development of effective communication and education strategies for reaching rural and African American residents with information about clinical trials. PMID:25204763

  20. 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.