Science.gov

Sample records for research participants undergoing

  1. 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.

  2. Participants' responsibilities in clinical research.

    PubMed

    Resnik, David B; Ness, Elizabeth

    2012-12-01

    Discussions on the ethics and regulation of clinical research have a great deal to say about the responsibilities of investigators, sponsors, research institutions and institutional review boards, but very little about the responsibilities of research participants. In this article, we discuss the responsibilities of participants in clinical research. We argue that competent adult participants are responsible for complying with study requirements and fulfilling other obligations they undertake when they make an informed choice to enroll in a study. These responsibilities are based on duties related to promise-keeping, avoiding harm to one's self or others, beneficence and reciprocity. Investigators and research staff should inform participants about their responsibilities during the consent process, and should stress the importance of fulfilling study requirements. They should address any impediments to compliance, and they may provide participants with financial incentives for meeting study requirements. In very rare cases, coercive measures may be justified to prevent immanent harm to others resulting from non-compliance with study requirements.

  3. 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.

  4. Optimizing Clinical Research Participant Selection with Informatics.

    PubMed

    Weng, Chunhua

    2015-11-01

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

  5. Protecting participants in family medicine research: a consensus statement on improving research integrity and participants' safety in educational research, community-based participatory research, and practice network research.

    PubMed

    Hueston, William J; Mainous, Arch G; Weiss, Barry D; Macaulay, Ann C; Hickner, John; Sherwood, Roger A

    2006-02-01

    Recent events that include the deaths of research subjects and the falsification of data have drawn greater scrutiny on assuring research data integrity and protecting participants. Several organizations have created guidelines to help guide researchers working in the area of clinical trials and ensure that their research is safe and valid. However, family medicine researchers often engage in research that differs from a typical clinical trial. Investigators working in the areas of educational research, community-based participatory research, and practice-based network research would benefit from similar recommendations to guide their own research. With funding from the US Office of Research Integrity and the Association of American Medical Colleges, we convened a panel to review issues of data integrity and participant protection in educational research, community-based participatory research, and research conducted by practice-based networks. The panel generated 11 recommendations for researchers working in these areas. Three key recommendations include the need for (1) all educational research to undergo review and approval by an institutional review board (IRB), (2) community-based participatory research to be approved not just by an IRB but also by appropriate community representatives, and (3) practice-based researchers to undertake only valid and meaningful studies that can be reviewed by a central IRB, rather than separate IRBs for each participating practice.

  6. 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…

  7. Promoting research participation: why not advertise altruism?

    PubMed

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

    2008-04-01

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

  8. The Obligation to Participate in Biomedical Research

    PubMed Central

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

    2009-01-01

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

  9. Ethical research with participants who are deaf.

    PubMed

    Dixon, Roz

    2005-04-01

    When conducting research with participants who are deaf there is a range of potential issues to be considered: issues relating to language and communication, participants' past experience and culture, and the potential power imbalance between researcher and participant. From an ethical perspective these may compromise informed consent and confidentiality, may inadvertently result in deception and may interfere with the validity of the data. The consequences may be negative for both the deaf population and the research community. This paper highlights the issues that arose in four studies with participants who were deaf and discusses the extent to which the measures taken were effective.

  10. 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…

  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. Reported Benefits of Participation in a Research Study

    PubMed Central

    Castillo, Anabella G.; Jandorf, Lina; Thélémaque, Linda D.; King, Sheba; Duhamel, Katherine

    2015-01-01

    Racial and ethnic minorities are significantly underrepresented in clinical research trials. Several socio-cultural and systemic barriers, ranging from discrimination by the health care system, medical mistrust, to low physician referral rates and lack of knowledge of research studies have been identified as impacting participation. One hundred and fifteen participants were culturally matched and were interviewed followed by up to an additional four interviews over a 12 month period. Responses were analyzed to understand the perceived benefits to participating in a prospective, randomized, longitudinal clinical research trial about screening colonoscopy. Over two-thirds (64.4%) of participants reported “knowledge, awareness, and/or information about colonoscopy and general health” as being the greatest benefit they received. Desire to undergo the screening and the pride of completing the study was ranked second and third, respectively. Understanding the reasons that participants choose to participate in research studies will ultimately assist researchers close the gap in minority representation, allowing for greater generaliz-ability of research findings. PMID:21644025

  13. 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…

  14. Popular Participation, Research and New Alliances.

    ERIC Educational Resources Information Center

    MacCall, Brian

    1981-01-01

    Suggests the need for more emphasis upon popular participation as a means of rural development. Proposes alliances between governments and people's organizations to cooperate in research, education and training, and mobilization. Describes contributions of international organizations toward this goal. (SK)

  15. 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.

  16. Factors influencing nurses' participation in clinical research.

    PubMed

    Jacobson, Ann F; Warner, Andrea M; Fleming, Eileen; Schmidt, Bruce

    2008-01-01

    Clinical research is necessary for developing nursing's body of knowledge and improving the quality of gastroenterology nursing care. The support and participation of nursing staff are crucial to conducting interventional research. Identification of characteristics of nurses and their work settings that facilitate or impede participation in research is needed. The purpose of this descriptive correlational study was to examine the effect of personal and professional characteristics and attitudes about nursing research on staff nurses' participation in a clinical nursing research project. A questionnaire measuring nurses' attitudes, perceptions of availability of support, and research use was distributed to staff nurses working on an endoscopy lab and two same-day surgery units where a nursing research study had recently been conducted. Investigator-developed items measured nurses' attitudes about the utility and feasibility of the interventions tested in the original study. A total of 36 usable questionnaires comprised the sample. Factor analysis of the two questionnaires resulted in three-factor (Importance of Research, Interest in Research, and Environment Support of Research) and two-factor (Value of Cognitive-Behavioral Interventions [CBIs] and Participation in Study) solutions, respectively. There were no statistically significant differences in mean scores for the five factors between nurses who did (n = 19) and those who did not (n = 17) participate in the original study. The Participation in Research Factor was significantly negatively correlated with years in nursing (r = -.336, p < .05) and positively correlated with the importance of research factor (r = .501, p < .01). Importance of research was negatively correlated with years in nursing (r = -.435, p < .01) and positively correlated with value of CBI (r = .439, p < .01) and participation in study (r = .501, p < .01). Findings from the study will contribute to the body of knowledge about factors that

  17. Recruiting participants for research from online communities.

    PubMed

    Mendelson, Cindy

    2007-01-01

    Increasing numbers of people use the Internet for information and support about health and illness experiences. Likewise, researchers are increasingly turning to Internet communities as recruitment sites for research participants. Based on the use of online recruitment for a study of women living with lupus, the challenges and strategies associated with this method are discussed. How participants were obtained through posts on Web sites, the role of gatekeepers in accessing online communities, issues associated with list lurkers and posters, and challenges to authenticity when working with a sample recruited from this environment are covered, as are strategies for addressing identified problems.

  18. Patient participation as dialogue: setting research agendas

    PubMed Central

    Abma, Tineke A.; Broerse, Jacqueline E. W.

    2010-01-01

    Abstract Background  Collaboration with patients in healthcare and medical research is an emerging development. We aimed to develop a methodology for health research agenda setting processes grounded in the notion of participation as dialogue. Methods  We conducted seven case studies between 2003 and 2007 to develop and validate a Dialogue Model for patient participation in health research agenda setting. The case studies related to spinal cord injury, neuromuscular diseases, renal failure, asthma/chronic obstructive pulmonary disease, burns, diabetes and intellectual disabilities. Results  The Dialogue Model is grounded in participatory and interactive approaches and has been adjusted on the basis of pilot work. It has six phases: exploration; consultation; prioritization; integration; programming; and implementation. These phases are discussed and illustrated with a case description of research agenda setting relating to burns. Conclusions  The dialogue model appeared relevant and feasible to structure the process of collaboration between stakeholders in several research agenda setting processes. The phase of consultation enables patients to develop their own voice and agenda, and prepares them for the broader collaboration with other stakeholder groups. Challenges include the stimulation of more permanent changes in research, and institutional transitions. PMID:20536537

  19. 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.

  20. Federal Restrictions on Educational Research: Protection for Research Participants.

    ERIC Educational Resources Information Center

    Michael, John; Weinberger, Jo Ann

    1977-01-01

    There are differences between biomedical and educational research. The procedures associated with the protection of research participants cannot be transplanted from the medical setting into the educational setting in unmodified fashion without dislocation of many segments of educational research and development. (Author/EB)

  1. 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

  2. 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.

  3. The Perspective of Undergraduate Research Participant Pool Nonparticipants

    ERIC Educational Resources Information Center

    Rocchi, Meredith; Beaudry, Simon G.; Anderson, Craig; Pelletier, Luc G.

    2016-01-01

    Undergraduate research participant pools play an essential role in facilitating research, and many universities rely on them for participant recruitment. There is an abundance of information about those who do elect to participate in research through these recruitment systems but very little about those who do not. The present study examines both…

  4. 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,…

  5. 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…

  6. 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…

  7. 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.

  8. Patients' refusal to participate in clinical research.

    PubMed

    van den Berg, L; Lobatto, R M; Zuurmond, W W; de Lange, J J; Wagemans, M F; Bezemer, P D

    1997-05-01

    The number of protocol-eligible patients, refusing to participate in a clinical trial is often not mentioned. The aim of this study is to report the number of refusers and to evaluate the reasons for not participating in a clinical study concerning post-operative pain relief and to assess the potential influence on the final study results. Patients refusing to participate in the study were recorded and evaluated for reasons of refusal. The post-operative pain relief techniques applied in this trial are commonly used, but nevertheless the refusal rate was higher than expected. When it was mentioned that an epidural technique was a part of the trial, 16.7% of the total protocol-eligible group refused. The responses of those offered an epidural could be divided into two groups: the adamant pros and cons to this technique. It can be concluded that in order to be able to judge the validity of results and thus for good clinical practice, the number of patients refusing to participate in a clinical trial and their reasons, should be mentioned in all publications.

  9. 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…

  10. 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…

  11. De-identified genomic data sharing: the research participant perspective.

    PubMed

    Goodman, Deborah; Johnson, Catherine O; Bowen, Deborah; Smith, Megan; Wenzel, Lari; Edwards, Karen

    2017-04-05

    Combining datasets into larger and separate datasets is becoming increasingly common, and personal identifiers are often removed in order to maintain participant anonymity. Views of research participants on the use of de-identified data in large research datasets are important for future projects, such as the Precision Medicine Initiative and Cancer Moonshot Initiative. This quantitative study set in the USA examines participant preferences and evaluates differences by demographics and cancer history. Study participants were recruited from the Northwest Cancer Genetics Registry and included cancer patients, their relatives, and controls. A secure online survey was administered to 450 participants. While the majority participants were not concerned about personal identification when participating in a genetic study using de-identified data, they expressed their concern that researchers protect their privacy and information. Most participants expressed a desire that their data should be available for as many research studies as possible, and in doing so, they would increase their chance of receiving personal health information. About 20% of participants felt that a link should not be maintained between the participant and their de-identified data. Reasons to maintain a link included an ability to return individual health results and an ability to support further research. Knowledge of participants' attitudes regarding the use of data into a research repository and the maintenance of a link to de-identified data is critical to the success of recruitment into future genomic research projects.

  12. 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.

  13. 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.

  14. Research Internships: Students as Participants in Science.

    ERIC Educational Resources Information Center

    Hoerter, James D.

    1980-01-01

    A research internship program for undergraduate college students is described. The program, which emphasizes "hands on" experiences for women students, is evaluated by the use of a follow-up study of the graduates. (SA)

  15. Participation levels in 25 Community-based participatory research projects.

    PubMed

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

    2016-10-01

    This analysis describes the nature of community participation in National Institutes of Health and Centers for Disease Control and Prevention funded community-based participatory research (CBPR) projects, and explores the scientific and social implications of variation in community participation. We conducted in-depth interviews in 2012 with professional and community researchers from 25 CBPR projects in the Southeast US. Interview topics focused on participants' experiences with the nature and conduct of their CBPR project. Projects were rated on community participation in 13 components of research. Projects varied substantially in community participation. Some projects had community participation in only two to three components; others had participation in every component. Some professional researchers were deliberate in their inclusion of community participation in all aspects of research, others had community participation in some aspects, and others were mainly concerned that community members had the opportunity to participate in the study. Findings suggest a need for a standardized rubric for community-based research that facilitates delineation of approaches and procedures that are effective and efficient. Little actual community participation may also result in negative social impacts for communities.

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

    PubMed Central

    2009-01-01

    Background This paper provides a brief overview of the Canadian physical activity communications and social marketing organization "ParticipACTION"; introduces the "new" ParticipACTION; describes the research process leading to the collection of baseline data on the new ParticipACTION; and outlines the accompanying series of papers in the supplement presenting the detailed baseline data. Methods Information on ParticipACTION was gathered from close personal involvement with the organization, from interviews and meetings with key leaders of the organization, from published literature and from ParticipACTION archives. In 2001, after nearly 30 years of operation, ParticipACTION ceased operations because of inadequate funding. In February 2007 the organization was officially resurrected and the launch of the first mass media campaign of the "new" ParticipACTION occurred in October 2007. The six-year absence of ParticipACTION, or any equivalent substitute, provided a unique opportunity to examine the impact of a national physical activity social marketing organization on important individual and organizational level indicators of success. A rapid response research team was established in January 2007 to exploit this natural intervention research opportunity. Results The research team was successful in obtaining funding through the new Canadian Institutes of Health Research Intervention Research (Healthy Living and Chronic Disease Prevention) Funding Program. Data were collected on individuals and organizations prior to the complete implementation of the first mass media campaign of the new ParticipACTION. Conclusion Rapid response research and funding mechanisms facilitated the collection of baseline information on the new ParticipACTION. These data will allow for comprehensive assessments of future initiatives of ParticipACTION. PMID:19995455

  17. Parents' perspectives on participating in genetic research in autism.

    PubMed

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

    2013-03-01

    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, promotes awareness, and may be used to tailor interventions and for family planning. The act of participating was distinctly significant, as it provided personal control, a connection to autism experts, networking with families, and hope for the future. The results of this study highlight complex factors involved in families' decisions to participate in autism genetic research and provide points to consider for this population of research participants.

  18. 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.…

  19. 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.

  20. Challenging Assumptions About Minority Participation in US Clinical Research

    PubMed Central

    Kalbaugh, Corey A.

    2011-01-01

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

  1. 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.

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

    PubMed Central

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

    2011-01-01

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

  3. 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…

  4. Bioethical Issues in Providing Financial Incentives to Research Participants.

    PubMed

    Resnik, David B

    2015-06-24

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

  5. 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.

  6. 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

  7. (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

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

    PubMed

    Wertheimer, Alan

    2014-06-01

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

  9. Hypothetical and factual willingness to participate in biobank research.

    PubMed

    Johnsson, Linus; Helgesson, Gert; Rafnar, Thorunn; Halldorsdottir, Ingibjorg; Chia, Kee-Seng; Eriksson, Stefan; Hansson, Mats G

    2010-11-01

    In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. However, surveys on willingness to participate in research may not always predict actual participation rates. We compared hypothetical willingness as estimated in 11 surveys conducted in Sweden, Iceland, United Kingdom, Ireland, United States and Singapore to factual participation rates in 12 biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, 12 suggest that factual willingness to participate in biobank research is greater than hypothetical, six indicate the converse relationship, and four are inconclusive. Factual donors, in particular when recruited in health care or otherwise face-to-face with the researcher, are possibly motivated by factors that are less influential in a hypothetical context, such as altruism, trust, and sense of duty. The value of surveys in assessing factual willingness may thus be limited.

  10. Hypothetical and factual willingness to participate in biobank research

    PubMed Central

    Johnsson, Linus; Helgesson, Gert; Rafnar, Thorunn; Halldorsdottir, Ingibjorg; Chia, Kee-Seng; Eriksson, Stefan; Hansson, Mats G

    2010-01-01

    In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. However, surveys on willingness to participate in research may not always predict actual participation rates. We compared hypothetical willingness as estimated in 11 surveys conducted in Sweden, Iceland, United Kingdom, Ireland, United States and Singapore to factual participation rates in 12 biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, 12 suggest that factual willingness to participate in biobank research is greater than hypothetical, six indicate the converse relationship, and four are inconclusive. Factual donors, in particular when recruited in health care or otherwise face-to-face with the researcher, are possibly motivated by factors that are less influential in a hypothetical context, such as altruism, trust, and sense of duty. The value of surveys in assessing factual willingness may thus be limited. PMID:20648060

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

    ERIC Educational Resources Information Center

    Munte, Ariadna; Serradell, Olga; Sorde, Teresa

    2011-01-01

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

  12. 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…

  13. 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…

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

    PubMed

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

    2006-01-01

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

  15. 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

  16. Cultural barriers to African American participation in anxiety disorders research.

    PubMed

    Williams, Monnica T; Beckmann-Mendez, Diana A; Turkheimer, Eric

    2013-01-01

    Anxiety disorders are understudied, underdiagnosed, and undertreated in African Americans. Research focused on the phenomenology, etiology, and treatment of anxiety in African Americans has been hampered by lack of inclusion of this population in clinical research studies. The reason for exclusion is not well understood, although cultural mistrust has been hypothesized as a major barrier to research participation. This article reviews the relevant literature to date and examines the experience of 6 African American adults who participated in a larger clinical assessment study about anxiety. Drawing upon in-depth semistructured interviews about their subjective experiences, we examined participant perspectives about the assessment process, opinions about African American perception of anxiety studies, and participant-generated ideas about how to improve African American participation. Based on a qualitative analysis of responses, feelings of mistrust emerged as a dominant theme. Concerns fell under 6 categories, including not wanting to speak for others, confidentiality, self and group presentation concerns, repercussions of disclosure, potential covert purposes of the study, and the desire to confide only in close others. Suggestions for increasing African American participation are discussed, including assurances of confidentiality, adequate compensation, and a comfortable study environment.

  17. Attitudes of pregnant women towards participation in perinatal epidemiological research.

    PubMed

    Nechuta, Sarah; Mudd, Lanay M; Biery, Lynette; Elliott, Michael R; Lepkowski, James M; Paneth, Nigel

    2009-09-01

    We assessed attitudes of a multi-ethnic sample of pregnant women in regard to participation in five data collection procedures planned for use in the National Children's Study. A cross-sectional survey was conducted in nine prenatal clinics in Kent County, Michigan between April and October 2006. Women were approached in clinic waiting rooms at the time of their first prenatal visit and 311 (91.0%) participated. Women were asked about their willingness to participate, and the smallest amount of compensation required for participation in a 45-min in-person interview, a 15-min telephone interview, maternal and infant medical record abstraction, and an infant physical examination. Percentages for willingness to participate were highest for telephone interview (83%), followed by in-person interview (60%), infant examination (57%), and maternal (56%) and infant medical records (54%). About 34-48% of women reported that no compensation would be required for participation by data procedure. Some women reported unwillingness to participate in telephone (9%) or personal (17%) interview, record abstraction (34%) or infant examination (26%), even with compensation. Education greater than high school was associated with increased odds of refusal for infant physical examination, adjusted odds ratio 2.44 [95% confidence interval 1.41, 4.23]. In conclusion, 9-34% of pregnant women, depending on procedure, stated they would not participate in non-invasive research procedures such as medical record abstraction and infant examination, even with compensation. Resistance to these research procedures was especially noted among more highly educated women. Planning for the National Children's Study will have to address potential resistance to research among pregnant women.

  18. 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.

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

    PubMed

    Eide, Phyllis; Kahn, David

    2008-03-01

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

  20. The Efficacy of Sham Tension-Free Vaginal Tape® Incisions in Randomized Participants Undergoing Vaginal Prolapse Surgery

    PubMed Central

    BRUBAKER, Linda; NAGER, Charles W.; RICHTER, Holly E.; WEIDNER, Alison C.; HSU, Yvonne; WAI, Clifford Y.; PARAISO, Marie; NOLEN, Tracy L.; WALLACE, Dennis; MEIKLE, Susan

    2015-01-01

    Objective This planned secondary analysis of the Outcomes Following Vaginal Prolapse Repairs and Midurethral Sling (OPUS) trial assessed whether treatment knowledge differed between randomized groups at 12 months and whether treatment success was affected by treatment perception. Study Design Sham suprapubic TVT incisions were made in masked OPUS participants randomized to no-TVT. Primary surgical outcomes and maintenance of blinding was assessed at 12 months. Knowledge of treatment assignment was compared between groups, and the relationship with treatment success rates assessed. Results Prior to the 12-month post-operative visit, only 4% (13/336) of treated participants formally reported unmasking. At 12 months, 94% (315/336) randomized participants provided treatment knowledge data. Sixteen (10%) TVT participants reported treatment knowledge; most (15, 94%) were correct; 17 (11%) of sham participants reported treatment knowledge; half (8, 47%) were correct (p=0.004). Similar proportions of unmasked participants who reported no treatment knowledge correctly guessed/perceived treatment assignment [sham 46 (33%) vs TVT 44 (33%)]. We did not detect significant differences in treatment success rates based on perception within and across received treatment groups [perceived sham vs. TVT overall (p=0.76)]. Of those receiving TVT, more participants perceiving TVT had treatment success compared to those that perceived sham (84% versus 74%; p=0.29). Among sham participants, more participants perceiving sham had success compared to those that perceived receiving TVT (65% vs. 56%; 0.42). Conclusion Sham surgical incisions effectively mask TVT randomization. These findings may help to inform future surgical trial designs. PMID:25019487

  1. 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…

  2. 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…

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

    ERIC Educational Resources Information Center

    Hinckley, Robert A.; McGuire, John P.

    2015-01-01

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

  4. The Past, Present and Future of Widening Participation Research

    ERIC Educational Resources Information Center

    Kettley, Nigel

    2007-01-01

    The provisions of the Higher Education Act (2004) have renewed interest in widening participation research. Therefore, this paper explores the development of this scholarly field, primarily in the United Kingdom, by examining major trends in the study of higher education. Political debates related to higher education, the prevailing structure of…

  5. 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…

  6. 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…

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

    ERIC Educational Resources Information Center

    Kennedy, Brianna L.

    2009-01-01

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

  8. 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

  9. 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.

  10. 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.

  11. 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.

  12. 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.

  13. Returning genome sequences to research participants: Policy and practice

    PubMed Central

    2017-01-01

    Despite advances in genomic science stimulating an explosion of literature around returning health-related findings, the possibility of returning entire genome sequences to individual research participants has not been widely considered. Through direct involvement in large-scale translational genomics studies, we have identified a number of logistical challenges that would need to be overcome prior to returning individual genome sequence data, including verifying that the data belong to the requestor and providing appropriate informatics support. In addition, we identify a number of ethico-legal issues that require careful consideration, including returning data to family members, mitigating against unintended consequences, and ensuring appropriate governance. Finally, recognising that there is an opportunity cost to addressing these issues, we make some specific pragmatic suggestions for studies that are considering whether to share individual genomic datasets with individual study participants. If data are shared, research should be undertaken into the personal, familial and societal impact of receiving individual genome sequence data. PMID:28317033

  14. Reactions to research participation in victims of childhood sexual abuse.

    PubMed

    Massey, Christina; Widom, Cathy Spatz

    2013-10-01

    We examined whether adults with a documented or self-reported history of childhood sexual abuse (CSA) report more emotional reactions and negative responses to research participation and whether psychiatric symptoms play a moderating role in their reactions. Using a prospective cohort design, individuals with documented histories of CSA and non-abused matched controls were followed up and interviewed in adulthood (n = 460). Reactions to research participation were measured with a brief questionnaire. Concurrent symptoms of depression, anxiety, and PTSD were assessed via standardized measures. Results showed that those with a history of CSA, documented or self-reported, experienced similar reactions compared to controls. Psychiatric symptoms predicted stronger emotional reactions and more negative responses, but also greater personal benefit, regardless of CSA history.

  15. 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

  16. 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

  17. 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

  18. 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

  19. 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.

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

    PubMed Central

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

    2015-01-01

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

  1. Examining the Social Benefits Principle in Research with Human Participants.

    PubMed

    Resnik, David B

    2016-07-04

    The idea that research with human participants should benefit society has become firmly entrenched in various regulations, policies, and guidelines, but there has been little in-depth analysis of this ethical principle in the bioethics literature. In this paper, I distinguish between strong and weak versions and the social benefits principle and examine six arguments for it. I argue that while it is always ethically desirable for research with human subjects to offer important benefits to society (or the public), the reasonable expectation of substantial public benefit should be a necessary condition for regarding research as ethical only when (a) it imposes more than minimal risks on non-consenting subjects; or (b) it is supported by public resources.

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

    PubMed

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

    2014-01-01

    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.

  3. Gaining and sustaining minority participation in longitudinal research projects.

    PubMed

    Gauthier, M A; Clarke, W P

    1999-01-01

    African-Americans are often not enthusiastic about participating in Alzheimer disease research due to past exploitation from medical and public health studies. To assure adequate representation from the African-American community, and to investigate the health needs of this population, strategies to recognize the problems and address the issues have been developed. The recruitment approach used existing connections in an urban community using culturally sensitive strategies. These strategies recruited elderly patients from an existing relationship with the Boston University Medical Center Geriatric Service. They built on the researchers' association with a neighborhood health center located in one of the Boston communities and utilized the services of an outreach worker. The outreach worker was from the community, aware of the health care needs of the elderly, and had a relationship with existing elderly community groups. Several methods were used to recruit patients. These included one-on-one discussions, posters, existing relationships with elderly groups, and direct phone calls. To develop trust carefully with the community's elders, multiple trust-building strategies were used. A multifaceted recruitment approach and strong linkages between the research team and the community were essential to successful recruitment and retention of participants.

  4. Regulating hematology/oncology research involving human participants.

    PubMed

    Kapp, Marshall B

    2002-12-01

    The conduct of hematology/oncology research, particularly clinical trials involving human participants, is an extensively regulated enterprise. Professionals in the specialty of hematology/oncology have important stakes in the success of biomedical research endeavors. Knowledge about and compliance strategies regarding the pertinent regulatory parameters are essential for avoiding negative legal repercussions for involved professionals. At the same time, there is a need to be aware of and actively resist the danger that strong [legal] protectionism might inadvertently result in undermining physician investigators' sense of personal moral responsibility in the conduct of human experiments. For all the limitations of that virtue in the protection of human subjects, it is surely not one that we would want medical scientists to be without [47]. Members of the potential participant pool, financial sponsors, and the general public must be convinced that everyone involved in the research enterprise is committed to operating within acceptable legal and ethical boundaries if the atmosphere of confidence and trust that is indispensable to the continued process and progress of investigation aimed at extending and improving quality of life for all of us in the future is to continue and flourish [48].

  5. 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.

  6. Can Lay Community Advisors Improve the Clarity of Research Participant Recruitment Materials and Increase the Likelihood of Participation?

    PubMed

    Bowers, Barbara; Jacobson, Nora; Krupp, Anna

    2017-02-01

    Despite decades of effort, lower income people and ethnic minorities continue to be underrepresented as participants in health research. A group of racially and ethnically diverse, lower income community members (Community Advisors on Research Design and Strategies: CARDS®) was trained to review study designs and procedures and provide recommendations to researchers for increasing participation and making research materials more understandable to members of underrepresented communities. In this mixed methods study, one participant group (n = 55) was shown research materials (recruitment documents and a consent form) developed by a research team and approved by the local IRB. A second group (n = 45) was shown the same materials after they had also been reviewed and revised by CARDS. Interviews, which included both fixed-response and open-ended questions, were used to assess reactions of participants in both groups to the materials, including their hypothetical willingness to volunteer for the research described. Group differences were examined using the Chi-square distribution test. Proportional difference effect sizes were estimated using arcsine transformation. The qualitative data were subjected to conventional content analysis. Participants in the group shown the recruitment materials revised by CARDS were more likely to say they understood the documents, more likely to ask for more information about the study, and more likely to say they would participate in the research. Results of content analysis suggested a four-phase sequential process for deciding whether to participate in the research. © 2016 Wiley Periodicals, Inc.

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

    PubMed

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

    2005-06-01

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

  8. 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…

  9. 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…

  10. 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.

  11. 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.

  12. 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.

  13. Can we assume that research participants are utility maximisers?

    PubMed

    Griffith, Gethin L; Morrison, Val; Williams, J Mark G; Edwards, Rhiannon Tudor

    2009-05-01

    The objective of this study was to experimentally examine by means of an information manipulation if respondents are adhering to the utility theory axiom of utility maximisation. A repeated measure experimental design was used. Assessments were conducted pre- and post-intervention with self-administered questionnaires. The study participants were 158 (142 after exclusions) first year undergraduate students, Bangor University (UK). The intervention-information manipulation-did not induce the hypothesised changes in the perceived pros and cons of, or desire for, genetic testing and counselling for breast cancer; correlation revealed a weak relationship between the pros and cons of and desire for testing and counselling. We conclude that there was no evidence of utility maximisation-the key tenet of utility theory-being used. Given the contradiction between the findings of this study and others, there is a need to conduct further research into utility maximisation.

  14. 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.

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

    PubMed Central

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

    2016-01-01

    Introduction Technology has transformed our lifestyles in dramatic and significant ways, including new and less expensive options for recruiting study participants. This study examines cost and participant differences between two recruitment sources, Craigslist (CL), and print newspapers (PNs). This paper also reviewed and compared studies involving clinical trials published since 2010 that recruited participants using CL alone or in combination with other methods. Method Secondary data analyses from a parent study involving a randomized controlled trial of a mail-based intervention to promote self-change with problem drinkers. Results Significant differences were found between CL and PN participants on most demographic and pretreatment drinking variables. While all participants had AUDIT scores suggestive of an alcohol problem and reported drinking at high-risk levels, CL participants had less severe drinking problem histories, were considerably younger, and had a higher socioeconomic status than PN participants. The total advertising costs for the 65 CL ads ($275) were significantly less than the 69 PN ads ($33, 311). The recruiting cost per eligible participant was vastly less expensive using CL ($1.46) compared to print newspaper ads ($116.88). Conclusions Using CL is a viable recruitment method for soliciting participants, particularly those that are younger, for alcohol intervention studies. It is also less expensive than newspaper ads. When CL participants were recruited, they reported being slightly more confident to change their drinking than PN participants. Limitations of using CL are discussed, including that some initial ad responders gave inconsistent answers to similar questions and a few tried to enter the study more than once. PMID:26675247

  16. Embedding research in clinical practice: differences in attitudes to research participation among clinicians in a tertiary teaching hospital.

    PubMed

    Paget, S P; Lilischkis, K J; Morrow, A M; Caldwell, P H Y

    2014-01-01

    Despite a drive to increase research in healthcare settings, clinician participation in research remains infrequent. This paper describes an online survey comparing attitudes with research participation among clinicians (doctors, nurses and allied health professionals) at an Australian tertiary children's hospital. Differences between professional groups support the existence of different professional cultures surrounding research, suggesting that multiple strategies are required to improve participation in research.

  17. 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.

  18. Commentary: The Relative Research Unit: An Approach to Measuring and Encouraging Clinician Participation in Research Activities

    PubMed Central

    Embi, Peter J.; Tsevat, Joel

    2013-01-01

    Recent nationwide initiatives to accelerate clinical and translational research, including comparative effectiveness research, increasingly will require clinician participation in research-related activities at the point-of-care, activities such as participant recruitment for clinical research studies and systematic data collection. A key element to the success of such initiatives that has not yet been adequately addressed is how to provide incentives to clinicians for the time and effort that such participation will require. Models to calculate the value of clinical care services are commonly used to compensate clinicians, and similar models have been proposed to calculate and compensate researchers’ efforts. However, to the authors’ knowledge, no such model has been proposed for calculating the value of research-related activities performed by non-investigator clinicians, be they in academic or community settings. In this commentary, the authors propose a new model for doing just that. They describe how such a relative research unit model could be used to provide both direct and indirect incentives for clinician participation in research activities. Direct incentives could include financial compensation, while indirect incentives could include credit towards promotion and tenure and towards the maintenance of specialty board certification. The authors discuss the principles behind this relative research unit approach as well as ethical, funding, and other considerations to fully developing and deploying such a model, across academic environments first and then more broadly across the health care community. PMID:22201633

  19. 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…

  20. 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…

  1. Next generation sequencing in psychiatric research: what study participants need to know about research findings.

    PubMed

    Mathieu, Ghislaine; Groisman, Iris Jaitovich; Godard, Beatrice

    2013-10-01

    The use of next generation sequencing (NGS) technologies in psychiatric genetics research and its potential to generate individual research results will likely have far reaching implications for predictive and diagnostic practices. The extent of this impact may not be easily understood by psychiatric research participants during the consent process. The traditional consent process for studies involving human subjects does not address critical issues specific to NGS research, such as the return of results. We examined which type of research findings should be communicated, how this information should be conveyed during the consent process and what guidance is required by researchers and IRBs to help psychiatric research participants understand the peculiarities, the limits and the impact of NGS. Strong standards are needed to ensure appropriate use of data generated by NGS, to meet participants' expectations and needs, and to clarify researchers' duties regarding the disclosure of data and their subsequent management. In the short term, researchers and IRBs need to be proactive in revising current consent processes that deal with the disclosure of research findings.

  2. 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

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

    PubMed

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

    2016-04-01

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

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

    PubMed

    McClain, Natalie; Amar, Angela Frederick

    2013-07-01

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

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

    PubMed

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

    2009-04-01

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

  6. 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

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

    PubMed Central

    2013-01-01

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

  8. 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…

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

    PubMed

    Oliveira, M A

    1991-07-01

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

  10. 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.

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

    PubMed Central

    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

  12. 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.

  13. Understanding Motivations to Participate in an Observational Research Study: Why do Patients Enroll?

    PubMed Central

    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

  14. An activist's argument that participant values should guide risk–benefit ratio calculations in HIV cure research

    PubMed Central

    Evans, David

    2017-01-01

    The patient empowerment movement, spurred by AIDS activism in the 1980s, quickly evolved to encompass how study participants are considered and treated in clinical research. Initially, people fearing death of AIDS sought early access to experimental medications that had not undergone rigorous testing in hopes of extending their lives. Thirty years on, scientists are asking a different set of ethical questions about clinical research, this time in the pursuit of either a sterilising cure or long-term remission for HIV. Instead of hastening access to experimental drugs for the sickest, researchers are now testing interventions for eradicating or controlling the virus in typically very healthy HIV-positive individuals who have the most to lose from such interventions if something goes wrong. While clinical researchers and ethicists debate the merits and limits of this type of research they should avoid discounting altruistic motivations as a powerful factor in a prospective study participant's decisions to assume risks. My conversations with four men who participated in HIV cure studies confirmed the capacity of these people to make carefully considered decisions about risks and the sometimes substantial influence/sway of non-clinical benefits that may come from participation in cure-oriented research. Studies must undergo ethical and clinical review before proceeding, and not all participants of such studies will be able to weigh or understand risks and benefits as those profiled here. But respecting the self-agency of people living with HIV should be a goal in the design and conduct of cure research. PMID:28062651

  15. 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…

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

    ERIC Educational Resources Information Center

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

    2014-01-01

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

  17. Perceptions of Financial Payment for Research Participation among African-American Drug Users in HIV Studies

    PubMed Central

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

    2007-01-01

    BACKGROUND Financial compensation for participating in research is controversial, especially when participants are recruited from economically disadvantaged and/or marginalized populations such as drug users. Little is known about these participants’ own views regarding payment for research participation. OBJECTIVE The objective of the study was to elicit underserved minority drug users’ views about monetary payments for participating in research. DESIGN Semi-structured in-depth interview study of motivations for and perceptions of participation in research was used. PARTICIPANTS Thirty-seven adult, economically disadvantaged African-American crack cocaine smokers were the participants of the study. APPROACH Participants were recruited from among those taking part in three HIV prevention studies. Interviews were conducted at one of 2 research field offices located in underserved minority neighborhoods in Houston, Texas. Interviews lasting 30–45 min were recorded, transcribed, coded, and analyzed for categories and themes using both conventional and directed qualitative content analysis. This report addresses themes under the broad category of financial motivations for participating in research. RESULTS Participants viewed monetary payment for research as essential to attract participation and desirable to provide optional income. Payment for research participation was perceived as one potential income source among others. Participants considered self-determination a prerogative for themselves and others. They rejected the notion of payment for participation as encouraging drug use or as inducing risk taking. CONCLUSIONS Research regulators should consider participants’ views of their desires and capacity for autonomous decisions about financial compensation for research rather than assume participants’ diminished capacity due to poverty and/or drug use. Payment for research participation appears to be part of the “informal economy” that has been

  18. The Participant-Observer Approach to Research in Mental Retardation.

    ERIC Educational Resources Information Center

    Edgerton, Robert B.

    1984-01-01

    Participant-observation which calls for long-term immersion in the world of the persons being studied yet disciplined detachment from that world, allows investigators to learn how mentally retarded people a actually behave in a variety of contexts and to grasp the meaning these activities have for them. (Author/CL)

  19. 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…

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

    NASA Astrophysics Data System (ADS)

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

    2015-12-01

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

  1. 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…

  2. Perceptions of risk in research participation among underserved minority drug users.

    PubMed

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

    2008-01-01

    Research with underserved minority drug users is essential to quality health care and prevention. Understanding how participants perceive risk in research is necessary to inform research regulators so that research protections are neither lax, exposing participants to harm, nor overly stringent, thereby denying access to beneficial research. Data from 37 semistructured interviews of underserved, African-American crack cocaine users, collected from February to May 2006 in a large, urban setting, were analyzed using content analysis. In three hypothetical studies, participants recognized risks as relative and articulated and evaluated specific risks. Research regulators may enhance the accuracy of risk assessment in research by incorporating the views of participants. Study implications and limitations are noted. Future research on risk perception in research participation is suggested.

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

    PubMed

    Brear, Michelle; Hammarberg, Karin; Fisher, Jane

    2017-03-18

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

  4. 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…

  5. 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…

  6. 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…

  7. 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…

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

    ERIC Educational Resources Information Center

    Mack, Lindsay

    2012-01-01

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

  9. 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…

  10. The START Collaboratory: Broadening Participation in Astronomy Research

    NASA Astrophysics Data System (ADS)

    Pennypacker, C. R.; Raddick, M. J.; Greenberg, G. J.; Hoette, V.; Meredith, K.

    2005-12-01

    The START Collaboratory is a three-year, NSF-funded project to create a Web-based national astronomy research collaboratory for high school students that will bring authentic scientific research to classrooms across the country. The project brings together the resources and experience of Hands-On Universe at the University of California at Berkeley, the Sloan Digital Sky Survey / National Virtual Observatory at Johns Hopkins University and the Northwestern University Collaboratory Project. START Collaboratory documents enable students to create, share and discuss Web-based astronomy research notebooks and research reports. These documents include seamless access to gigabytes of searchable data from the SDSS and the NVO. The START Collaboratory also supports observation requests to a "Telescope Request Broker" that automatically coordinates access to telescopes around the world, and a Web Visualization Tool for visualization and measurement of FITS files from professional observatories or user observations. The project has developed a set of research scenarios that use real astronomical problems to introduce students to the resources and tools available through the START Collaboratory. These scenarios also introduce a model for network-based collaboration that engages students, teachers and professional scientists. Great attention has been paid to ensuring that the research scenarios result in accurate and authentic research products that are of real interest to working astronomers. With the START Collaboratory, students will study science by doing science, generating useful scientific results just as professional astronomers do. As the third and last year of the project finalizes integrating tools and resources, an NSF-funded two-year CI-TEAM project with the Adler Planetarium will begin to create a professional development program for high school teachers interested in learning how to use the START Collaboratory to engage their students in astrophysical research

  11. 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.

  12. Does it hurt to ask? A meta-analysis of participant reactions to trauma research.

    PubMed

    Jaffe, Anna E; DiLillo, David; Hoffman, Lesa; Haikalis, Michelle; Dykstra, Rita E

    2015-08-01

    Institutional Review Boards (IRBs) are sometimes hesitant to approve trauma-related research due to concerns that asking participants about traumatic experiences will induce extreme distress. Despite the growing empirical literature examining participants' reactions to trauma-related research, no quantitative reviews have been conducted. The present multilevel meta-analysis was undertaken to quantify: (1) how participants react to trauma-related research overall; (2) to what extent reactions to trauma-related research differ by participant characteristics, including personal history of trauma, PTSD symptoms, and gender; and (3) to what extent (a) type of traumatic experience and (b) mode of administration moderate these effects. Studies examining adult participants' reactions to trauma assessments in the context of research were included. Results from 73,959 participants across 70 samples suggest that although trauma-related research can lead to some immediate psychological distress, this distress is not extreme. This distress is greater for individuals with a trauma history or PTSD, particularly in studies involving interviews. However, individuals generally find research participation to be a positive experience and do not regret participation, regardless of trauma history or PTSD. There were no gender differences in reactions. Present findings, which suggest that trauma-related research can continue without harming participants, may help inform IRB decisions on trauma research.

  13. 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.

  14. Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice?

    PubMed

    Prince, Anya E R; Conley, John M; Davis, Arlene M; Lázaro-Muñoz, Gabriel; Cadigan, R Jean

    2015-01-01

    In genomics research, it is becoming common practice to return individualized primary and incidental findings to participants and several ongoing major studies have begun to automatically transfer these results to a participant's clinical medical record. This paper explores who should decide whether to place genomic research findings into a clinical medical record. Should participants make this decision, or does a researcher's duty to place this information in a medical record override the participant's autonomy? We argue that there are no clear ethical, legal, professional, or regulatory duties that mandate placement without the consent of the participant. We conclude that informing participants of results, together with a clear explanation, relevant recommendations and referral sources, and the option to consent to placement in the medical records will best discharge researchers' ethical and legal duties towards participants.

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

    PubMed

    Pike, Elizabeth R

    2014-03-01

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

  16. 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…

  17. 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…

  18. 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…

  19. 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…

  20. 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…

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

    ERIC Educational Resources Information Center

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

    2008-01-01

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

  2. 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

  3. Base rate of performance invalidity among non-clinical undergraduate research participants.

    PubMed

    Silk-Eglit, Graham M; Stenclik, Jessica H; Gavett, Brandon E; Adams, Jason W; Lynch, Julie K; Mccaffrey, Robert J

    2014-08-01

    Neuropsychological research frequently uses non-clinical undergraduate participants to evaluate neuropsychological tests. However, a recent study by An and colleagues (2012, Archives of Clinical Neuropsychology, 27, 849-857) called into question that the extent to which the interpretation of these participants' performance on neuropsychological tests is valid. This study found that in a sample of 36 participants, 55.6% exhibited performance invalidity at an initial session and 30.8% exhibited performance invalidity at a follow-up session. The current study attempted to replicate these findings in a larger, more representative sample using a more rigorous methodology. Archival data from 133 non-clinical undergraduate research participants were analyzed. Participants were classified as performance invalid if they failed any one PVT. In the current sample, only 2.26% of participants exhibited performance invalidity. Thus, concerns regarding insufficient effort and performance invalidity when using undergraduate research participants appear to be overstated.

  4. 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.

  5. 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

  6. ESRO/ESA and Denmark. Participation by research and industry

    NASA Astrophysics Data System (ADS)

    Gudmandsen, Preben

    2003-09-01

    These notes are prepared to give an impression of considerations and activities in Denmark related to ESRO and ESA, roughly in the period 1964 to 1990. In a number of chapters we consider early space-related research in Denmark, the initial phase of the ESRO era and the following period, including the phase of transition from ESRO to ESA when Denmark seriously considered leaving the space co-operation. A chapter gives examples of activities in the ESA era within space science and astronomy, Earth Observation and microgravity, followed by a final one dealing with the national management of optional programmes and the involvement by industry. In drafting the notes we have taken advantage of the work carried out in the Introductory Studies carried out to secure and place in order the archives of the Danish Space Research Advisory Committee. In this connection excerpts of individual documents (mostly minutes of meetings, letters and reports) were taken. To a great extent they form the basis for many of the points made in the notes.

  7. 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…

  8. 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…

  9. 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.…

  10. 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…

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

    ERIC Educational Resources Information Center

    Thomas, Gail; Kroese, Biza Stenfert

    2005-01-01

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

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

    ERIC Educational Resources Information Center

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

    2009-01-01

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

  14. 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.

  15. 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.

  16. 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

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

    PubMed

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

    2013-09-01

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

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

    PubMed

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

    2016-04-25

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

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

    PubMed

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

    2015-10-01

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

  20. 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

  1. 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

  2. Impact of Participation in Community-Based Research Among Undergraduate and Graduate Students.

    PubMed

    George, Cheryl L; Wood-Kanupka, Jennifer; Oriel, Kathryn N

    2017-01-01

    Participation in community-based research provides college students with a high-impact experience involving both research and service learning. Presently, the impact of participation in community-based research projects has been measured most often through the use of post-learning course evaluations and case studies. The authors describe the impact of participation in community-based research, at a small liberal arts college, on undergraduate education students and graduate physical therapy students using the Community-Based Research Student Learning Outcomes Survey. Results from 2 years of survey responses and open-ended responses suggest that participation in such an experience may impact professional and personal growth, educational experiences, and civic engagement. This study provides support for universities and colleges to continue offering high-impact learning experiences for students by utilizing community-based research experiences while collaborating between academic departments.

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

    PubMed

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

    2015-01-01

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

  4. 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.

  5. 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.

  6. 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

  7. DECISION-MAKING AND MOTIVATION TO PARTICIPATE IN BIOMEDICAL RESEARCH IN SOUTHWEST NIGERIA

    PubMed Central

    OSAMOR, PAULINE E.; KASS, NANCY

    2012-01-01

    Motivations and decision-making styles that influence participation in biomedical research vary across study types, cultures, and countries. While there is a small amount of literature on informed consent in non-western cultures, few studies have examined how participants make the decision to join research. This study was designed to identify the factors motivating people to participate in biomedical research in a traditional Nigerian community, assess the degree to which participants involve others in the decision-making process, and examine issues of autonomy in decision-making for research. A descriptive cross-sectional study was conducted with 100 adults (50 men, 50 women) in an urban Nigerian community who had participated in a biomedical research study. Subjects were interviewed using a survey instrument. Two-thirds of the respondents reported participating in the biomedical study to learn more about their illness, while 30% hoped to get some medical care. Over three-quarters (78%) of participants discussed the enrolment decision with someone else and 39% reported obtaining permission from a spouse or family member to participate in the study. Women were more than twice as likely as men to report obtaining permission from someone else before participating. More specifically, half of the female participants reported seeking permission from a spouse before enrolling. The findings suggest that informed consent in this community is understood and practised as a relational activity that involves others in the decision making process. Further studies are needed in non-Western countries concerning autonomy, decision-making, and motivation to participate in research studies. PMID:22708614

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

    PubMed

    Osamor, Pauline E; Kass, Nancy

    2012-08-01

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

  9. 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

  10. 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

  11. Awareness of the Tuskegee syphilis study: impact on offenders' decisions to decline research participation.

    PubMed

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

    2011-01-01

    Ethnic and racial minorities are often under-represented in research. There is considerable speculation that Blacks, in particular, are discouraged from research participation because of researcher improprieties in the U.S. Public Health Service (USPHS) Syphilis Study at Tuskegee (aka the Tuskegee Syphilis Study [TSS]), a 40-year (1932-1972) study in which investigators withheld medical treatment from African-American men infected with syphilis. We debriefed 281 offenders who declined participation in a research study to assess the extent to which knowledge of the TSS impacted their decisions not to enroll. Relatively few (44/281; 15.6%) reported awareness of the TSS. Half (n = 22) of these "aware" individuals could cite factually accurate information about the TSS, and only four individuals indicated that awareness of TSS had "somewhat" influenced their decision to not participate. Findings suggest that the legacy of the TSS played a relatively minor role in these offenders' decisions to decline research participation.

  12. 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

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

    PubMed Central

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

    2017-01-01

    Purpose: Internet-based technologies are increasingly being used for research studies. However, it is not known whether Internet-based approaches will effectively engage participants from diverse racial and socioeconomic backgrounds. Methods: A total of 967 participants were recruited and offered genetic ancestry results. We evaluated viewing Internet-based genetic ancestry results among participants who expressed high interest in obtaining the results. Results: Of the participants, 64% stated that they were very or extremely interested in their genetic ancestry results. Among interested participants, individuals with a high school diploma (n = 473) viewed their results 19% of the time relative to 4% of the 145 participants without a diploma (P < 0.0001). Similarly, 22% of participants with household income above the federal poverty level (n = 286) viewed their results relative to 10% of the 314 participants living below the federal poverty level (P < 0.0001). Among interested participants both with a high school degree and living above the poverty level, self-identified Caucasians were more likely to view results than self-identified African Americans (P < 0.0001), and females were more likely to view results than males (P = 0.0007). Conclusion: In an underserved population, engagement in Internet-based research was low despite high reported interest. This suggests that explicit strategies should be developed to increase diversity in Internet-based research. Genet Med 19 2, 240–243. PMID:27467456

  14. Research Knowledge among Parents of Children Participating in a Randomized Clinical Trial.

    ERIC Educational Resources Information Center

    Vitiello, Benedetto; Aman, Michael G.; Scahill, Lawrence; McCracken, James T.; McDougle, Christopher J.; Tierney, Elaine; Davies, Mark; Arnold, L. Eugene

    2005-01-01

    Objective: Parental permission is required for child research, but parents' understanding of research aims and procedures has not been well documented. Parental research knowledge was assessed during a clinical trial in autism. Method: Parents of 101 children (age 5-17 years) with autism participating in a placebo-controlled trial of risperidone…

  15. 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,…

  16. 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…

  17. 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 at a…

  18. 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…

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

    PubMed

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

    2013-04-01

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

  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…

  1. Research on Control and Participation in Community Colleges, 1976-1977.

    ERIC Educational Resources Information Center

    Tannenbaum, Arnold S.; And Others

    Four papers are presented in this research report. Cooke and Tannenbaum present the theoretical background, methodology, and results of a study exploring the relation of formal and informal participation to the distribution of control in community colleges. Data, collected from students, faculty, and administrators of five "formally participative"…

  2. 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…

  3. 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…

  4. 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…

  5. 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.

  6. The adoption of alcohol pharmacotherapies in the Clinical Trials Network: the influence of research network participation.

    PubMed

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

    2010-04-01

    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 Clinical Trials 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 2-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.

  7. Gatekeepers of science: attitudes toward the research participation of adults with intellectual disability.

    PubMed

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

    2008-11-01

    Researchers and Institutional Review Board (IRB) members' attitudes influence scientific knowledge about individuals with intellectual disability. We recruited 260 intellectual disability researchers and IRB members to develop a measure of attitudes toward the research participation of adults with intellectual disability, the Participation in Research Attitude Scale. Findings suggest three conceptual domains: Opportunity and Choice, Help in Decision Making, and Beneficence. We also examined individual differences in attitudes and the relationships between general and specific attitudes. In general, intellectual disability researchers and those with closer relationships to individuals with disabilities had attitudes consistent with disability-rights principles. Some dimensions of global attitudes toward adults with intellectual disability predictedmore specific attitudes toward their research participation. Implications are discussed.

  8. 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.

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

    PubMed

    Czarkowski, Marek; Sieczych, Alicja

    2013-07-01

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

  10. 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

    2014-06-05

    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.

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

    PubMed

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

    2017-04-01

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

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

    PubMed Central

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

    2017-01-01

    Objective In 2001, the National Institute for Health Research Cancer Research Network (NCRN) was established, leading to a rapid increase in clinical research activity across the English NHS. Using colorectal cancer (CRC) as an example, we test the hypothesis that high, sustained hospital-level participation in interventional clinical trials improves outcomes for all patients with CRC managed in those research-intensive hospitals. Design Data for patients diagnosed with CRC in England in 2001–2008 (n=209 968) were linked with data on accrual to NCRN CRC studies (n=30 998). Hospital Trusts were categorised by the proportion of patients accrued to interventional studies annually. Multivariable models investigated the relationship between 30-day postoperative mortality and 5-year survival and the level and duration of study participation. Results Most of the Trusts achieving high participation were district general hospitals and the effects were not limited to cancer ‘centres of excellence’, although such centres do make substantial contributions. Patients treated in Trusts with high research participation (≥16%) in their year of diagnosis had lower postoperative mortality (p<0.001) and improved survival (p<0.001) after adjustment for casemix and hospital-level variables. The effects increased with sustained research participation, with a reduction in postoperative mortality of 1.5% (6.5%–5%, p<2.2×10−6) and an improvement in survival (p<10−19; 5-year difference: 3.8% (41.0%–44.8%)) comparing high participation for ≥4 years with 0 years. Conclusions There is a strong independent association between survival and participation in interventional clinical studies for all patients with CRC treated in the hospital study participants. Improvement precedes and increases with the level and years of sustained participation. PMID:27797935

  13. 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

  14. Participant diaries as a source of data in research with older adults.

    PubMed

    Jacelon, Cynthia S; Imperio, Kristal

    2005-09-01

    Solicited participant diaries are an excellent source of data that has not been given sufficient attention as a data collection strategy for qualitative research. In a recent grounded theory study designed to explore strategies used by older adults to manage their chronic health problems, solicited diaries, when combined with an initial and follow-up interview, provided a rich source of data about day-to-day activities of participants. There were three options for maintaining the diary: written, audiotaped, or telephone conversation. The solicited diaries were guided by a set of open-ended questions designed to encourage participants to focus on daily activities and reflect on their values. The authors provide examples of data from participant diaries and suggestions for incorporating solicited participant diaries into data collection strategies for qualitative research.

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

    PubMed Central

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

    2012-01-01

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

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

    PubMed Central

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

    2012-01-01

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

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

    PubMed Central

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

    2012-01-01

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

  18. The Risk of Partner Aggression Research: Impact of Laboratory Couples Conflict Protocols on Participants

    PubMed Central

    Owen, Daniela J.; Heyman, Richard E.; Smith Slep, Amy M.

    2006-01-01

    The impact of male-to-female intimate partner violence (IPV) research on participants is unknown. A measure of impact was given to participants in an IPV study to assess systematically the impact of completing questionnaires, engaging in conflict conversations, and being interviewed individually about anger escalation and de-escalation during the conversations. Participants completed the six question, Likert-scaled, impact measure. Both male and female participants rated the impact of the study as helpful to them personally and to their relationships. Female participants rated different segments of the study as more helpful to themselves and their relationships, while male participants did not find any segment of the study to have a different impact than other segments. PMID:16897915

  19. Participation in psychosocial oncology and quality-of-life research: a systematic review.

    PubMed

    Wakefield, Claire E; Fardell, Joanna E; Doolan, Emma L; Aaronson, Neil K; Jacobsen, Paul B; Cohn, Richard J; King, Madeleine

    2017-03-01

    Quality-of-life and psychosocial oncology studies that have low participation might have less precision, less statistical power, and can have non-response bias. In this systematic Review, we searched MEDLINE, Embase, and PsycInfo, for paediatric studies published in 2010-15 and adults studies published 2014-15. Studies were eligible if they were original studies published in a peer-reviewed journal; recruited children (aged 0-18 years at diagnosis) with cancer or their parents, or adult patients with cancer; and assessed psychosocial outcomes, including quality of life, depression, anxiety, wellbeing, distress, coping, or adjustment as a primary or secondary outcome. We assessed participation reporting quality, calculated percentages of participation achieved, and measured the influence of study design and participant characteristics. We reviewed 311 studies including a total of 87 240 adults, children, and parents. Mean participation across studies was more than 70% (paediatric participation was 72% and adult participation was 74%). Many studies did not report data essential for the assessment of participation, especially for non-respondents. Studies using a longitudinal cohort design had higher participation than randomised trials. In paediatric studies, recruitment of participants at diagnosis, face to face, and with the use of short questionnaires yielded higher participation. Other study design characteristics (method of data collection, who enrolled the participants, and incentives) and patient characteristics (cancer type, patient or parent age, and sex) did not affect participation in either paediatric or adult studies. Researchers can use these data to improve reporting quality and make evidence-based choices to maximise participation in future studies.

  20. Relationships and communication in minority participation in research: multidimensional and multidirectional.

    PubMed Central

    Corbie-Smith, Giselle; Williams, Ishan Canty; Blumenthal, Connie; Dorrance, Jessica; Estroff, Sue E.; Henderson, Gail

    2007-01-01

    We examined the range and nature of investigators' communication and relationship building as they recruit minority participants in their research. Semistructured, in-depth interviews were conducted with 33 investigators conducting research with human participants. The response rate was 77%. Investigators described several kinds of relationships that are formed or called upon when including minority participants in research. The relationships ranged from study-related, short-term interactions geared solely to facilitate recruitment to others that were longer term, extending beyond a particular project. The data suggest that a range of relationships is important as investigators seek to include minority populations in research. These relationships can both facilitate the recruitment process as well as aid in the interpretation of research findings. PMID:17534006

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

    PubMed Central

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

    2014-01-01

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

  2. 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.

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

    PubMed

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

    2014-01-01

    The aim of this study is to estimate the ratio of male and female participants in Sports and Exercise Medicine research. Original research articles published in three major Sports and Exercise Medicine journals (Medicine and Science in Sports and Exercise, British Journal of Sports Medicine and American Journal of Sports Medicine) over a three-year period were examined. Each article was screened to determine the following: total number of participants, the number of female participants and the number of male participants. The percentage of females and males per article in each of the journals was also calculated. Cross tabulations and Chi-square analysis were used to compare the gender representation of participants within each of the journals. Data were extracted from 1382 articles involving a total of 6,076,580 participants. A total of 2,366,968 (39%) participants were female and 3,709,612 (61%) were male. The average percentage of female participants per article across the journals ranged from 35% to 37%. Females were significantly under-represented across all of the journals (χ(2) = 23,566, df = 2, p < 0.00001). In conclusion, Sports and Exercise Medicine practitioners should be cognisant of sexual dimorphism and gender disparity in the current literature.

  4. 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…

  5. 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…

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

    ERIC Educational Resources Information Center

    Marsh, Jackie; Bishop, Julia C.

    2014-01-01

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

  7. 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…

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

    ERIC Educational Resources Information Center

    Muwanga-Zake, J. W. F.

    2009-01-01

    This paper discusses how Ubuntu as a philosophy and a methodology was used among Bantu in South Africa together with participative Western paradigms in evaluating an educational computer game. The paper argues that research among Bantu has to articulate research experiences within Ubuntu paradigms if valid outcomes are to be realised. (Contains 1…

  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. Low participation rates amongst Asian women: implications for research in reproductive medicine.

    PubMed

    Talaulikar, V S; Hussain, S; Perera, A; Manyonda, I T

    2014-03-01

    The last two decades have witnessed tremendous advances in the field of reproductive medicine, especially assisted reproductive technology and stem cell research. As research continues in future, it is vital to ensure that individuals from all ethnic backgrounds are represented in the study populations so that the findings of the research can be generalised for the benefit of all. Many studies, however, have noted a trend of low participation rates amongst Asian women in reproductive research. Inequalities in the ethnicity of research participants can be a source of substantial bias, and have major ethical and scientific ramifications. Several factors such as educational status, fear of wrong-doing, communication barriers, and socio-cultural beliefs have been suggested to play a role. There is a need for further exploration of the factors influencing Asian women's decision to accept or decline participation in reproductive research and for development of effective targeted strategies for research recruitment with the aim of encouraging research participation as well as donation of cryopreserved embryos or other reproductive tissues.

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

    ERIC Educational Resources Information Center

    Yarbrough, Jamie L.; Thompson, Charles L.

    2002-01-01

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

  12. 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…

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

    ERIC Educational Resources Information Center

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

    2009-01-01

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

  14. 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…

  15. 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…

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

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ..., 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...

  17. 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...

  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. Improving Subject Recruitment, Retention, and Participation in Research through Peplau’s Theory of Interpersonal Relations

    PubMed Central

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

    2013-01-01

    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. PMID:21471039

  20. 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.

  1. Beyond Data Points and Research Contributions: The Personal Meaning and Value Associated with Public Participation in Scientific Research

    ERIC Educational Resources Information Center

    Haywood, Benjamin K.

    2016-01-01

    As public participation in scientific research (PPSR) initiatives have expanded rapidly among private, public, and non-profit science research communities over the past decade, program managers and scholars regularly promote, evaluate, and manage such programs with a focus on the value and impact of PPSR efforts on the practice and relevancy of…

  2. 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.

  3. New governance arrangements for research ethics committees: is facilitating research achieved at the cost of participants' interest

    PubMed Central

    Cave, E; Holm, S

    2002-01-01

    This paper examines the UK's response to a recent European Clinical Trials Directive, namely the Department of Health, Central Office for Research Ethics Committee guidance, Governance Arrangements for NHS Research Ethics Committees. The revisions have been long awaited by researchers and research ethics committee members alike. They substantially reform the ethical review system in the UK. We examine the new arrangements and argue that though they go a long way toward addressing the uncertainty surrounding ethics committee function, the system favours the facilitation of research over the protection of the dignity and welfare of research participants. PMID:12356961

  4. 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.

  5. [10 theses of the disabled persons' organizations - why participation research with a social perspective is needed].

    PubMed

    Hinz, T

    2012-12-01

    The 5 professional associations for the disabled and the self-help organisations of disabled people state that in Germany a general concept for "participation research" is needed. This concept should address expectations and processes in developing aid services and improve self-determined participation of people with disabilities according to the human rights postulated in the UN Convention on the Rights of People with Disabilities (2006). A concept of "participation research" will go beyond the objectives and methods of i. e., disability studies - it is a focus in the context of which the social and equal participation of the disabled (especially those with multiple and/or intellectual handicaps) has to be addressed. In this context the 5 professional associations for the disabled have drafted 10 theses which are presented in the following article.

  6. 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.

  7. Cohort profile: the Scottish Research register SHARE. A register of people interested in research participation linked to NHS data sets

    PubMed Central

    McKinstry, Brian; Sullivan, Frank M; Vasishta, Shobna; Armstrong, Roma; Hanley, Janet; Haughney, John; Philip, Sam; Smith, Blair H; Wood, Amanda; Palmer, Colin N A

    2017-01-01

    Purpose Recruitment to trials is often difficult. Many trials fail to meet recruitment targets resulting in underpowered studies which waste resources and the time of those who participated. While there is evidence that many people are willing to take part in research, particularly if it involves a condition from which they suffer, researchers are unable to easily contact such people often relying on busy clinicians to identify them. Many clinicians perceive themselves as too busy to take part in research activities. The Scottish Health Research Register SHARE adopts an approach which asks the public to consent to their data held in National Health Service databases to be used to determine their suitability for research projects. Additionally, participants can consent for spare blood, left after routine venepuncture to be automatically identified in the laboratory and stored for future research studies. Participants Anyone over the age of 16 years in Scotland can participate. Participants are approached through a range of methods including directly at outpatient clinics and general practitioners practices, leaflets with hospital letters and personal email from employers. Findings to date SHARE has recruited around 130 000 people. SHARE has demonstrated that it can quickly and efficiently recruit to studies, over 20 until now. In addition, it can be used to administer questionnaire studies by email and recruit to patient and public involvement groups. Future plans SHARE continues to steadily recruit with the ambition of eventually achieving 1 000 000 people in Scotland. We are steadily increasing the number of data sets we use for identifying participants. We are adding a mobile app which will facilitate dissemination about research and allow the collection of physiological and activity data if desired. We anticipate that SHARE will soon become the main source of health research recruitment in Scotland. PMID:28148535

  8. 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

  9. Experiences and Lessons Learned in Using Community-Based Participatory Research to Recruit Asian American Immigrant Research Participants

    PubMed Central

    Katigbak, Carina; Foley, Meghan; Robert, Lauren; Hutchinson, M. Katherine

    2017-01-01

    Purpose By 2050, the number of international migrants is expected to double from 214 million people. Of these, Asian immigrants are projected to comprise the largest foreign-born population in the United States by the year 2065. Asian American immigrants experience numerous health disparities, but remain under-represented in health research. The purpose of this article is to examine the experiences and lessons learned in applying community-based participatory research (CBPR) principles to access and recruit a sample of Asian American research participants. Approach This article reviews unique barriers to research participation among Asian Americans, describes the principles of CBPR, and provides examples of how these principles were employed to bridge recruitment challenges within a qualitative study. Findings and Conclusions CBPR facilitated greater research participation among a group of immigrant Asian Americans. Researchers must be additionally mindful of the importance of building trusting relationships with their community partners, understanding the significance of shared experiences, considering fears around immigration status, and considering ongoing challenges in identifying and reaching hidden populations. Clinical Relevance Clinicians and researchers can employ CBPR principles to guide their work with Asian immigrant communities and other under-represented groups to facilitate access to the population, improve participant recruitment, and foster engagement and collaboration. PMID:26836035

  10. Enacting a theory of caring to recruit and retain vulnerable participants for sensitive research.

    PubMed

    Kavanaugh, Karen; Moro, Teresa T; Savage, Teresa; Mehendale, Ramkrishna

    2006-06-01

    The recruitment and retention of research participants always presents challenges to researchers. This process is made more complicated when the research being undertaken is socially sensitive and the populations of interest are considered vulnerable. The purpose of this article is to illustrate how Swanson's middle-range theory of caring can be used as a framework for recruitment and retention for studies on sensitive topics that involve vulnerable participants. We provide an overview of the theory as well as illustrations from three separate studies that involved in-depth interviews with vulnerable participants. These studies included parents who had either experienced the death of their infant or were involved in life support decisions because of potentially giving birth to an extremely premature infant (22-25 weeks gestation).

  11. 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.

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

    PubMed

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

    2014-01-01

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

  13. Recruiting Adolescent Research Participants: In-Person Compared to Social Media Approaches.

    PubMed

    Moreno, Megan A; Waite, Alan; Pumper, Megan; Colburn, Trina; Holm, Matt; Mendoza, Jason

    2017-01-01

    Recruiting adolescent participants for research is challenging. The purpose of this study was to compare traditional in-person recruitment methods to social media recruitment. We recruited adolescents aged 14-18 years for a pilot physical activity intervention study, including a wearable physical activity tracking device and a Facebook group. Participants were recruited (a) in person from a local high school and an adolescent medicine clinic and (b) through social media, including Facebook targeted ads, sponsored tweets on Twitter, and a blog post. Data collected included total exposure (i.e., reach), engagement (i.e., interaction), and effectiveness. Effectiveness included screening and enrollment for each recruitment method, as well as time and resources spent on each recruitment method. In-person recruitment reached a total of 297 potential participants of which 37 enrolled in the study. Social media recruitment reached a total of 34,272 potential participants of which 8 enrolled in the study. Social media recruitment methods utilized an average of 1.6 hours of staff time and cost an average of $40.99 per participant enrolled, while in-person recruitment methods utilized an average of 0.75 hours of staff time and cost an average of $19.09 per participant enrolled. Social media recruitment reached more potential participants, but the cost per participant enrolled was higher compared to traditional methods. Studies need to consider benefits and downsides of traditional and social media recruitment methods based on study goals and population.

  14. 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

  15. 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

  16. Engaging research participants to inform the ethical conduct of mobile imaging, pervasive sensing, and location tracking research.

    PubMed

    Nebeker, Camille; Lagare, Tiffany; Takemoto, Michelle; Lewars, Brittany; Crist, Katie; Bloss, Cinnamon S; Kerr, Jacqueline

    2016-12-01

    Researchers utilize mobile imaging, pervasive sensing, social media, and location tracking (MISST) technologies to observe and intervene with participants in their natural environment. The use of MISST methods and tools introduces unique ethical issues due to the type and quantity of data, and produces raising new challenges around informed consent, risk assessment, and data management. Since MISST methods are relatively new in behavioral research, there is little documented evidence to guide institutional review board (IRB) risk assessment and inform appropriate risk management strategies. This study was conducted to contribute the participant perspectives when considering ethical and responsible practices. Participants (n = 82) enrolled in an observational study where they wore several MISST devices for 1 week completed an exit survey. Survey items focused on the following: 1-device comfort, 2-informed consent, 3-privacy protections, and 4-bystander engagement. The informed consent process reflected participant actual experience. Device comfort and privacy were raised as concerns to both the participants and bystanders. While the majority of the participants reported a positive experience, it is important to note that the participants were volunteers who were not mandated to wear tracking devices and that persons who are mandated may not have a similar response. Findings support strategies proposed in the Kelly et al. (2013) ethical framework, which emphasizes procedures to improve informed consent, protect privacy, manage data, and respect bystander rights when using a wearable camera.

  17. 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…

  18. 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…

  19. Using the Internet to prescreen participants for research on interpersonal violence: experimental design considerations.

    PubMed

    Cornelius, Tara L; Truba, Natalie; Bell, Kathryn M

    2011-01-01

    Internet-based testing has become increasingly popular in recent years due largely to the availability of computers and the Web to research participants. For researchers studying interpersonal violence, Internet-based methodologies can also be used as a prescreening device to identify a population of interest, such as individuals reporting violence in their relationships. However, several challenges exist with this approach. This article evaluates the use of an Internet-based prescreening device to identify potential participants for a study on interpersonal violence, highlighting challenges encountered with this methodology, and offers suggestions for improvement in experimental design when conducting Internet-based screenings of interpersonal violence.

  20. 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…

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

    PubMed Central

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

    2011-01-01

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

  2. 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…

  3. 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

  4. Recruiting Participants into Pilot Trials: Techniques for Researchers with Shoestring Budgets

    PubMed Central

    Joseph, Rodney P.; Keller, Colleen; Ainsworth, Barbara E.

    2016-01-01

    Limited research has focused on recruitment strategies for health promotion researchers conducting small-scale pilot studies. Such research is important because small studies often have limited funding streams and personnel resources. Accordingly, many techniques implemented by large-scale studies are of limited use to smaller research projects. This article provides an overview effective participant recruitment techniques for pilot studies with limited funds and personnel resources. Recruitment techniques were derived from the first author’s experience in recruiting participants during his doctoral and postdoctoral studies, the over 25 years of research experience of each of the co-authors, and an extensive review of the literature. Five key recruitment techniques are discussed: 1) leverage existing social networks and personal contacts, 2) identify and foster collaborations with community gatekeepers, 3) develop a comprehensive list of potential recruitment platforms and venues, 4) create recruitment materials that succinctly describe the purpose of the study, and 5) build respectful and trusting relationships with potential participants. Implementation of the proposed techniques can lead to enhanced recruitment, as well as retention among study participants. PMID:28090193

  5. Ethics review of health research on human participants in South Africa.

    PubMed

    van Wyk, Christa

    2010-06-01

    In terms of South African legislation, all health research on human participants must be submitted to an accredited research ethics committee for independent ethics review. Health research covers a broad spectrum of research, including clinical trials. This article sets out the ethical-legal framework for the functioning and composition of such committees. It also deals with the newly created National Health Research Ethics Council, which registers and audits health research ethics committees. Special attention is given to the conduct of clinical trials. In conclusion, it is submitted that the National Health Act, the Draft Regulations Relating to Research on Human Subjects, and two sets of ethical guidelines adopted by the Department of Health provide a much needed and coherent ethical-legal framework for research in South Africa.

  6. 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

  7. 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

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

    PubMed

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

    2016-02-01

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

  9. 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

  10. Training Future Scientists: Predicting First-year Minority Student Participation in Health Science Research

    PubMed Central

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

    2013-01-01

    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 participation in health science research programs are students’ reliance on peer networks and whether campuses provide structured opportunities for first-year students even though only 12% of freshmen in the sample engaged in this activity. These experiences are particularly important for Black students. The findings inform efforts to orient students at an early stage, particularly under-represented minorities, toward biomedical and behavioral science research careers. PMID:23503996

  11. 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

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

    PubMed

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

    2016-04-01

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

  13. Looking at research consent forms through a participant-centered lens: the PRISM readability toolkit.

    PubMed

    Ridpath, Jessica R; Wiese, Cheryl J; Greene, Sarah M

    2009-01-01

    Communicating in lay language is an underdeveloped skill among many researchers-a limitation that contributes to low readability among research consent forms and may hinder participant understanding of study procedures and risks. We present the Project to Review and Improve Study Materials (PRISM) and its centerpiece, the PRISM Readability Toolkit. The toolkit provides strategies for creating study materials that are readable and participant centered, focusing on consent forms but also addressing other participant materials. Based on plain language principles, this free resource includes a flexible menu of tools, such as an editing checklist, before and after examples, easy-to-read template language, and a list of alternative words. Among PRISM's ongoing goals is to test the toolkit with populations groups.

  14. 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.

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

    PubMed Central

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

    2016-01-01

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

  16. 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…

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

    ERIC Educational Resources Information Center

    Brock, Colin; Cammish, Nadine

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

  18. In-Service Teachers' Sense of Agency after Participation in a Research Master Course

    ERIC Educational Resources Information Center

    Impedovo, Maria Antonietta

    2016-01-01

    In this paper, we investigate the in-service teachers "sense of agency" after their participation in a research master course. A semi-structured interview was administrated to nine in-service science teachers, coming from three different African countries: Zimbabwe, Lesotho, and Burkina Faso. All of them attended a European master course…

  19. 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…

  20. 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…

  1. The Use of SYMLOG as an Interpretive Foil for Participant Observer Research in Organizations.

    ERIC Educational Resources Information Center

    Savage, Grant T.

    In addition to assessing observed communication behaviors, this paper suggests that SYMLOG--a System for the Multiple Level Observation of Groups--can be used by participant-observers as a foil for interpreting how their own value orientations affect their data collecting and theorizing. The first section of the paper examines the research role…

  2. 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…

  3. 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…

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

    ERIC Educational Resources Information Center

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

    2010-01-01

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

  5. 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…

  6. 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…

  7. 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…

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

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... 20 Employees' Benefits 2 2010-04-01 2010-04-01 false Participation in research and demonstration projects. 404.1629 Section 404.1629 Employees' Benefits SOCIAL SECURITY ADMINISTRATION FEDERAL OLD-AGE, SURVIVORS AND DISABILITY INSURANCE (1950- ) Determinations of Disability Administrative Responsibilities...

  9. 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…

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

    ERIC Educational Resources Information Center

    Cartrette, David P.; Miller, Matthew L.

    2013-01-01

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

  11. Domestic violence among adolescents in HIV prevention research in Tanzania: participant experiences and measurement issues.

    PubMed

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

    2015-01-01

    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. 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. Nineteen CFR participants experienced physical and/or 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. 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.

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

    PubMed

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

    2015-01-01

    Objective We sought to determine the prevalence of college laboratory research apprenticeship (CLRA) participation among students considering medical careers and to examine the relationship between CLRA participation and medical-school acceptance among students who applied to medical school. Methods We used multivariate logistic regression to identify predictors of: 1) CLRA participation in a national cohort of 2001-2006 Pre-Medical College Admission Test (MCAT) Questionnaire (PMQ) respondents and 2) among those PMQ respondents who subsequently applied to medical school, medical-school acceptance by June 2013, reporting adjusted odds ratios (aOR) and 95% confidence intervals (95% CI). Results Of 213,497 PMQ respondents in the study sample (81.2% of all 262,813 PMQ respondents in 2001-2006), 72,797 (34.1%) reported CLRA participation. Each of under-represented minorities in medicine (URM) race/ethnicity (vs. white, aOR: 1.04; 95% CI: 1.01-1.06), Asian/Pacific Islander race/ethnicity (vs. white, aOR: 1.20; 95% CI: 1.17-1.22), and high school summer laboratory research apprenticeship (HSLRA) participation (aOR: 3.95; 95% CI: 3.84-4.07) predicted a greater likelihood of CLRA participation. Of the 213,497 PMQ respondents in the study sample, 144,473 (67.7%) had applied to medical school and 87,368 (60.5% of 144,473 medical-school applicants) had been accepted to medical school. Each of female gender (vs. male, aOR: 1.19; 95% CI: 1.16-1.22), URM race/ethnicity (vs. white, aOR: 3.91; 95% CI: 3.75-4.08), HSLRA participation (aOR: 1.11; 95% CI: 1.03-1.19), CLRA participation (aOR: 1.12; 95% CI: 1.09-1.15), college summer academic enrichment program participation (aOR: 1.26; 95% CI: 1.21-1.31), and higher MCAT score (per point increase, aOR: 1.31; 95% CI: 1.30-1.31) predicted a greater likelihood of medical-school acceptance. Conclusions About one-third of all PMQ respondents had participated in CLRAs prior to taking the MCAT, and such participation was one of the several

  13. 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

  14. Community College Student Participation in Undergraduate Research: An Explanatory Case Study for Faculty and Research Mentors

    ERIC Educational Resources Information Center

    Peterson, Dana L.

    2009-01-01

    This study adapted the current model of science undergraduate research experiences (URE's) and applied this novel modification to include community college students. Numerous researchers have examined the efficacy of URE's in improving undergraduate retention and graduation rates, as well as matriculation rates for graduate programs. However, none…

  15. Deconstructing Service-Learning: Research Exploring Context, Participation, and Impacts. Advances in Service-Learning Research.

    ERIC Educational Resources Information Center

    Billig, Shelley H., Ed.; Eyler, Janet, Ed.

    This book presents service-learning research that focuses on units of analysis ranging from the individual student to the community partnership. It contains the following chapters/articles: "Enhancing Theory-Based Research on Service-Learning" (Robert G. Bringle); "The Missing Link: Exploring the Content of Learning in Service-Learning" (Deborah…

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

    NASA Astrophysics Data System (ADS)

    Oluseyi, Hakeem M.; Urama, Johnson

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

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

    NASA Astrophysics Data System (ADS)

    Oluseyi, Hakeem M.; Urama, Johnson

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

  20. 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.

  1. Connecting patients, researchers and clinical genetics services: the experiences of participants in the Australian Ovarian Cancer Study (AOCS).

    PubMed

    Crook, Ashley; Plunkett, Loren; Forrest, Laura E; Hallowell, Nina; Wake, Samantha; Alsop, Kathryn; Gleeson, Margaret; Bowtell, David; Mitchell, Gillian; Young, Mary-Anne

    2015-02-01

    Population-based genetic research may produce information that has clinical implications for participants and their family. Researchers notify participants or their next of kin (NoK) about the availability of genetic information via a notification letter; however, many subsequently do not contact a family cancer centre (FCC) to clarify their genetic status. Therefore, the purpose of this study was to examine research participants' experience of receiving a notification letter and the factors that influenced contact with an FCC. Twenty-five semi-structured interviews were conducted with research participants (n=10) or their NoK (n=15) who had received a notification letter following participation in the Australian Ovarian Cancer Study. There were a number of factors which impacted participants' access to genetic counselling at an FCC. Some participants had unmet information and support needs, which were addressed by their participation in this psychosocial interview study. Recruitment and participation in this study therefore inadvertently increased a number of participants' intention to contact an FCC. For others, participation in this study facilitated access to an FCC. Recommendations are proposed regarding future notification as well as implications for clinical practice. An approach that also provides opportunity to address research participants' support and informational needs before contacting a clinical genetics service as well as practical guidance for accessing genetic services would facilitate timely and smooth access for research participants who are interested in following up clinically relevant genetic test results.

  2. 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.

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

    PubMed Central

    Williams, John R; Sprumont, Dominique; Hirtle, Marie; Adebamowo, Clement; Braunschweiger, Paul; Bull, Susan; Burri, Christian; Czarkowski, Marek; Te Fan, Chien; 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

    2015-01-01

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

  4. One thing leads to another: the cascade of obligations when researchers report genetic research results to study participants.

    PubMed

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

    2012-08-01

    Even as debate continues about the putative obligation to proactively report genetic research results to study participants, there is an increasing need to attend to the obligations that might cascade from any initial report. We conducted an international, quasi-experimental survey of researchers involved in autism spectrum disorders (ASD) and cystic fibrosis (CF) genetics to explore perceived obligations to ensure updated information or relevant clinical care subsequent to any initial communication of research results, and factors influencing these attitudes. 5-point Likert scales of dis/agreement were analyzed using descriptive and multivariate statistics. Of the 343 respondents (44% response rate), large majorities agreed that in general and in a variety of hypothetical research contexts, research teams that report results should ensure that participants gain subsequent access to updated information (74-83%) and implicated clinical services (79-87%). At the same time, researchers perceived barriers restricting access to relevant clinical care, though this was significantly more pronounced (P<0.001) for ASD (64%) than CF (34%). In the multivariate model, endorsement of cascading obligations was positively associated with researcher characteristics (eg, clinical role/training) and attitudes (eg, perceived initial reporting obligation), and negatively associated with the initial report of less scientifically robust hypothetical results, but unaffected by perceived or hypothetical barriers to care. These results suggest that researchers strongly endorse information and care-based obligations that cascade from the initial report of research results to study participants. In addition, they raise challenging questions about how any cascading obligations are to be met, especially where access challenges are already prevalent.

  5. 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

  6. Researcher readiness for participating in community-engaged dissemination and implementation research: a conceptual framework of core competencies.

    PubMed

    Shea, Christopher M; Young, Tiffany L; Powell, Byron J; Rohweder, Catherine; Enga, Zoe K; Scott, Jennifer E; Carter-Edwards, Lori; Corbie-Smith, Giselle

    2017-03-24

    Participating in community-engaged dissemination and implementation (CEDI) research is challenging for a variety of reasons. Currently, there is not specific guidance or a tool available for researchers to assess their readiness to conduct CEDI research. We propose a conceptual framework that identifies detailed competencies for researchers participating in CEDI and maps these competencies to domains. The framework is a necessary step toward developing a CEDI research readiness survey that measures a researcher's attitudes, willingness, and self-reported ability for acquiring the knowledge and performing the behaviors necessary for effective community engagement. The conceptual framework for CEDI competencies was developed by a team of eight faculty and staff affiliated with a university's Clinical and Translational Science Award (CTSA). The authors developed CEDI competencies by identifying the attitudes, knowledge, and behaviors necessary for carrying out commonly accepted CE principles. After collectively developing an initial list of competencies, team members individually mapped each competency to a single domain that provided the best fit. Following the individual mapping, the group held two sessions in which the sorting preferences were shared and discrepancies were discussed until consensus was reached. During this discussion, modifications to wording of competencies and domains were made as needed. The team then engaged five community stakeholders to review and modify the competencies and domains. The CEDI framework consists of 40 competencies organized into nine domains: perceived value of CE in D&I research, introspection and openness, knowledge of community characteristics, appreciation for stakeholder's experience with and attitudes toward research, preparing the partnership for collaborative decision-making, collaborative planning for the research design and goals, communication effectiveness, equitable distribution of resources and credit, and

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

    PubMed

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

    2014-01-01

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

  8. Development and initial validation of the Therapeutic Misunderstanding Scale for use with clinical trials research participants.

    PubMed

    Chou, Pak Hei Benedito; O'Rourke, Norm

    2012-01-01

    Therapeutic misconception is evident when clinical trials participants conflate research and treatment, erroneously believing that every aspect of the research is intended to be for their direct benefit. We developed the 20-item Therapeutic Misunderstanding Scale (TMU) based on responses from 464 community-dwelling adults 50+ years of age (Study 1). A three-factor solution based on Horng and Grady's (2003) three-facets definition was identified using both exploratory and confirmatory factor analyses (EFA and CFA; these analyses were performed on separate samples). CFA results point to a second-order solution where each of Horng and Grady's three facets contribute significantly to the measurement of a higher-order therapeutic misunderstanding latent construct. Internal consistency of TMU responses (full scale) as well as the therapeutic misconception, misestimation, and optimism subscales were calculated as α = 0.88, α = 0.83, α = 0.79, and α = 0.75, respectively. These results were subsequently supported with responses from former clinical trials participants (Study 2). This TMU provides applied researchers a brief measure for use in future studies as well as a screening instrument for clinicians to more fully assess informed consent for participation in clinical trials research.

  9. 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.

  10. 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

  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. 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.

  13. Barriers and Motivators to Participating in mHealth Research Among African American Men.

    PubMed

    James, Delores C S; Harville, Cedric

    2015-12-03

    Most African American (AA) men own a smartphone, which positions them to be targeted for a variety of programs, services, and health interventions using mobile devices (mHealth). The goal of this study was to assess AA men's use of technology and the barriers and motivators to participating in mHealth research. A self-administered survey was completed by 311 men. Multinomial logistic regression examined associations between three age groups (18-29 years, 30-50 years, and 51+ years), technology access, and motivators and barriers to participating in mHealth research. Sixty-five percent of men owned a smartphone and a laptop. Men aged 18 to 29 years were more likely willing to use a health app and smartwatch/wristband monitor than older men (p < .01). Men aged 18 to 29 years were also more likely than older men to be motivated to participate for a free cell phone/upgraded data plan and contribution to the greater good (p < .05). Older men were more likely than younger ones to be motivated to become more educated about the topic (p < .05). Younger men were more likely than older ones to report lack of interest in the topic as a barrier to participating (p < .01), while older men were more likely than younger ones to cite lack of research targeted to minority communities as a barrier (p < .05). This study suggests that culturally tailored mHealth research using smartphones may be of interest to AA men interested in risk reduction and chronic disease self-management. Opportunities also exist to educate AA men about the topic at hand and why minority men are being targeted for the programs and interventions.

  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.

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

    PubMed

    Moreno-Fergusson, Marìa Elisa; Grace, Pamela J

    2016-01-01

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

  17. 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.

  18. 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.

  19. 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.

  20. 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

  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. Early Career Development in Academic Pediatrics of Participants in the APS-SPR Medical Student Research Program

    PubMed Central

    Smith, William H.; Rogers, Jessica G.; Hansen, Thomas N.; Smith, Charles V.

    2009-01-01

    To recruit and train the next generations of pediatric clinician-scientists, the American Pediatric Society (APS) and Society for Pediatric Research (SPR) initiated a program in 1991 to support medical students with interests in research and pediatrics to conduct research at institutions other than their respective medical schools. Since 1991, the APS-SPR Medical Student Research Program (MSRP) has funded 732 of 2209 applicants from 132 U.S. or Canadian medical schools for 8 to 12 weeks of research under the direction of experienced investigators. PubMed-attributable publications tabulated in 2001 for MSRP applicants through 2000 indicated that participants had published more actively than had non-participant applicants. Male non-participants exhibited greater publication activities than did female non-participants, but female and male participants published equally. Of all MSRP participants between 1991 and 1996, as of 2008, 36% were in pediatrics, and a remarkable 29% were in academic pediatrics. PMID:19092716

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

    PubMed

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

    2016-02-01

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

  6. 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

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

    PubMed

    Gennet, Éloïse; Andorno, Roberto; Elger, Bernice

    2015-07-01

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

  8. 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.

  9. Doing more good than harm? The effects of participation in sex research on young people in the Netherlands.

    PubMed

    Kuyper, Lisette; de Wit, John; Adam, Philippe; Woertman, Liesbeth

    2012-04-01

    Ethical guidelines for research with human participants stress the importance of minimizing risks and maximizing benefits. In order to assist Institutional Review Boards (IRBs) and researchers to make more informed risk/benefit analyses with regard to sex research among adolescents, the current study examined the effects of participation in sex research among 899 young people (15-25 years old). Participants completed three questionnaires on a wide range of sexuality-related measures. They also completed scales measuring their levels of distress, need for help, and positive feelings due to their research participation. In general, negative effects of research participation seemed limited, while benefits of participation appeared substantial. Several differences with regard to sociodemographic characteristics were found (e.g., females experienced more distress then males and younger or lower educated participants experienced more positive feelings). In addition, victims of sexual coercion reported more distress and need for help due to their participation, but also experienced more positive feelings. No significant differences were found in relation to experience with sexual risk behaviors (e.g., experience with one-night-stands). Several limitations of the study were discussed, as were implications for future research. Overall, the findings caution IRBs and researchers against being overly protective regarding the inclusion of young people in sex 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. Examining barriers and supports to community living and participation after a stroke from a participatory action research approach.

    PubMed

    Hammel, Joy; Jones, Robin; Gossett, Andrea; Morgan, Elizabeth

    2006-01-01

    This participatory action research study focused on identifying community participation goals, barriers, and supports/strategies in partnership with people who have experienced a stroke. Goals demonstrate that participation is more than activity performance in context; instead, it relates to "being a part of" the community and having access to participation opportunities and supports. Results of community site audits from the first 20 participants document environmental (physical, cognitive, social) and system level barriers, as well as effective strategies for promoting participation via environmental modification and systems level changes. A consumer-directed, Web-based tool for documenting participation barriers and sharing strategies is discussed.

  13. Structural and Interpersonal Benefits and Risks of Participation in HIV Research: Perspectives of Female Sex Workers in Guatemala

    PubMed Central

    Goldenberg, Shira M.; Mindt, Monica Rivera; Jimenez, Teresita Rocha; Brouwer, Kimberly C.; Miranda, Sonia Morales; Fisher., Celia B.

    2016-01-01

    This study explored perceived benefits and risks of participation in HIV research among 33 female sex workers in Tecun Uman, Guatemala. Stigma associated with sex work and HIV was a critical barrier to research participation. Key benefits of participation included access to HIV/STI prevention and testing, as well as positive and trusting relationships between sex workers and research teams. Control exerted by managers had mixed influences on perceived research risks and benefits. Results underscore the critical need for HIV investigators to develop population-tailored procedures to reduce stigma, engage managers, and reinforce trusting, reciprocal relationships between sex work communities and researchers. PMID:27840564

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

    PubMed

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

    2011-02-01

    Despite extensive debate, there is no consensus on whether individual genetic data should be disclosed to research participants. The emergence of whole-genome sequencing methods is increasingly generating unequalled amounts of genetic data, making the need for a clear feedback policy even more urgent. In this debate two positions can be broadly discerned: a restrictive disclosure policy ('no feedback except life-saving data') and an intermediate policy of qualified disclosure ('feedback if the results meet certain conditions'). We explain both positions and present the principal underlying arguments. We suggest that the debate should no longer address whether genetic research results should be returned, but instead how best to make an appropriate selection and how to strike a balance between the possible benefits of disclosure and the harms of unduly hindering biomedical research.

  15. A silent conspiracy?: some ethical issues of participant observation in nursing research.

    PubMed

    Johnson, M

    1992-05-01

    In this paper I suggest that too little attention has been paid to ethical problems underlying health care research, particularly that which uses covert participant observation. Some of the chief arguments surrounding the use of deception in data collection in health care settings are evaluated, and a study by Field (1989) [Nursing the Dying. Routledge, Tavistock] in which covert observation was used is examined in relation to two moral principles--human rights and general utility. Conclusions include the responsibility of researchers to explicitly justify their approach in terms rather more than mere technical advantage, and the need to encourage the teaching and use of non-deceptive methods of data collection at this most crucial developmental stage in the evolution of nursing and health care research.

  16. 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.

  17. Predictors of parental consent for adolescent participation in sexual health-related research.

    PubMed

    Moilanen, Kristin L

    2015-04-01

    The purpose of the present study was to describe the degree to which parents of adolescents were willing to grant consent for their teenagers' participation in sexually themed research, and to link the likelihood of consent to parents' demographics, personality traits, parenting, attitudes, and their children's characteristics. A total of 203 parents of adolescents ages 13 to 18 years anonymously responded to an internet survey (81.7% mothers; 87% European American). Approximately 40% of respondents were possibly willing and 36% were definitely willing to provide consent for a hypothetical study covering all included sexual health topics. Parents were more likely to give consent if they were highly extraverted, viewed science positively, were not highly conservative about sexuality, and if they thought their teenager was already sexually experienced. Overall, many parents appear to be quite open to adolescent survey participation.

  18. Participation of Asian-American women in cancer treatment research: a pilot study.

    PubMed

    Nguyen, Tung T; Somkin, Carol P; Ma, Yifei; Fung, Lei-Chun; Nguyen, Thoa

    2005-01-01

    Few Asian-American women participate in cancer treatment trials. In a pilot study to assess barriers to participation, we mailed surveys to 132 oncologists and interviewed 19 Asian-American women with cancer from Northern California. Forty-four oncologists responded. They reported as barriers language problems, lack of culturally relevant cancer information, and complex protocols. Most stated that they informed Asian-American women about treatment trials. Only four women interviewed knew about trials. Other patient-identified barriers were fear of side effects, language problems, competing needs, and fear of experimentation. Family decision making was a barrier for both oncologists and patients. Compared to non-Asian oncologists, more Asian oncologists have referred Asian-American women to industry trials and identified barriers similar to patients' reports. Our findings indicate that Asian-American women need to be informed about cancer treatment trials, linguistic barriers should be addressed, and future research should evaluate cultural barriers such as family decision making.

  19. 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

  20. 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

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

    NASA Astrophysics Data System (ADS)

    Ellins, K.; Perry, E.

    2005-12-01

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

  2. 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.

  3. 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

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

    PubMed

    Moyer, Anne; Franklin, Nancy

    2011-03-01

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

  5. 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.

  6. 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

  7. Interest of individuals from BRCA families to participate in research studies focused on male BRCA carriers.

    PubMed

    Pal, Tuya; Vadaparampil, Susan; Kim, Jongphil; Xu, Yan; Friedman, Sue; Narod, Steven A; Metcalfe, Kelly

    2013-12-01

    Although men and women are equally likely to carry a mutation in the BRCA1 and BRCA2 (BRCA) genes, the clinical significance of mutations in men remains incompletely defined. We sought evaluate interest of individuals from BRCA families to participate in a research study focused on men from BRCA families. Through an anonymous survey posted on the website of the BRCA patient advocacy organization, facing our risk of cancer empowered (FORCE), data was collected over a 21 month period (August 2010-June 2012) from members of BRCA families. The survey was completed by 405 individuals with known BRCA mutations, including 150 males and 232 females. The median age of survey respondents was 49 years (50 years for males and 48 years for females). Overall, 84% of survey respondents indicated prior BRCA mutation testing (95.2% females, 67.3% males). For the overall group of survey respondents, 84% (86% females, 84% males) indicated they would tell their male relatives about a research study focused on high risk men from BRCA families, and 53% (39% females, 74% males) thought that their male relatives would be interested in participating in such a study. Despite limited studies focused on men from BRCA mutation positive families, our survey suggests that both male and female family members are highly interested in focused on male BRCA mutation carriers. The importance of further studying this topic is underscored by emerging literature that suggest cancer surveillance and treatment decisions may improve outcomes in men with BRCA mutations.

  8. Participant reactions to survey research in the general population after terrorist attacks.

    PubMed

    Galea, Sandro; Nandi, Arijit; Stuber, Jennifer; Gold, Joel; Acierno, Ron; Best, Connie L; Bucuvalas, Mike; Rudenstine, Sasha; Boscarino, Joseph A; Resnick, Heidi

    2005-10-01

    There remains concern that survey research after a disaster can precipitate or exacerbate distress among study participants. The authors surveyed 5,774 persons in three random-digit-dial telephone surveys of the general population of New York City conducted 1-2 months, 4-5 months, and 6-9 months after the terrorist attack on September 11, 2001. Overall, 746 (12.9%) people who finished the surveys said that the survey questions were upsetting but only 57 (1.0% overall) were still upset at the end of the interview, and 19 (0.3%) wanted assistance from a counselor. Ten persons who did not finish the survey also received counselor assistance. Persons with mental health symptoms were more likely to find the survey questions emotionally upsetting as were participants who lacked salutary resources, including health insurance and a regular health care provider. Although relatively few of those interviewed found the survey assessment disturbing, the presence of a small number of respondents who wanted mental health assistance suggests the need for a mental health backup system for research conducted soon after exposure to large-scale traumatic events.

  9. 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

  10. 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

  11. Views of academic and community partners regarding participant protections and research integrity: a pilot focus group study.

    PubMed

    Anderson, Emily E

    2013-02-01

    When community partners have direct interaction with human research participants, it is important to consider potential threats to participant protections and research integrity. Few studies have directly compared the views of academic and community partners. This pilot focus group study explores the views of academic partners (APs) and community partners (CPs) regarding challenges to the protection of research participants and research integrity in community-engaged research (CEnR). Data are analyzed to understand how APs and CPs define and think about ethical problems and how meaning and analysis may differ between the two groups. Findings have implications for the development of research ethics training materials for academic-community research partnerships and IRBs; best practices for CEnR; and future research on ethical issues in CEnR.

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

    PubMed

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

    2016-01-01

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

  13. 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.

  14. Beliefs about participating in research among a sample of minority persons living with HIV/AIDS in New York City.

    PubMed

    Floyd, Tiffany; Patel, Shilpa; Weiss, Elisa; Zaid-Muhammad, Soye; Lounsbury, David; Rapkin, Bruce

    2010-06-01

    Despite substantial data documenting the challenges in recruiting racial and ethnic minorities into research studies, relatively little is known about the attitudes and beliefs toward research that are held by racial and ethnic minorities living with HIV/AIDS. The present study assessed the research attitudes and beliefs of a racially and ethnically diverse group of persons living with HIV/AIDS, with research broadly defined as either psychosocial, behavioral, or clinical. Also assessed were factors that would encourage or discourage them from participating in a research study. Six hundred twenty-two participants were recruited from 22 points of service in New York City; data were gathered through a single in-person structured interview conducted in Spanish or English. Findings from a series of quantitative analyses indicated that attitudes about research were primarily neutral or positive, and different attitude and belief patterns were associated with different preferences regarding what would or would not incline one to participate in a research study. Results suggest that minorities with HIV/AIDS are open to the possibility participating in research; however, they also suggest that receptivity to research may not be uniform and indicated a variety of specific research design and implementation options that investigators should consider in order to ensure sufficient access and interest in participation.

  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. Research participant compensation: A matter of statistical inference as well as ethics.

    PubMed

    Swanson, David M; Betensky, Rebecca A

    2015-11-01

    The ethics of compensation of research subjects for participation in clinical trials has been debated for years. One ethical issue of concern is variation among subjects in the level of compensation for identical treatments. Surprisingly, the impact of variation on the statistical inferences made from trial results has not been examined. We seek to identify how variation in compensation may influence any existing dependent censoring in clinical trials, thereby also influencing inference about the survival curve, hazard ratio, or other measures of treatment efficacy. In simulation studies, we consider a model for how compensation structure may influence the censoring model. Under existing dependent censoring, we estimate survival curves under different compensation structures and observe how these structures induce variability in the estimates. We show through this model that if the compensation structure affects the censoring model and dependent censoring is present, then variation in that structure induces variation in the estimates and affects the accuracy of estimation and inference on treatment efficacy. From the perspectives of both ethics and statistical inference, standardization and transparency in the compensation of participants in clinical trials are warranted.

  17. 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...

  18. 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...

  19. 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...

  20. 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...

  1. 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... 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...

  2. 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…

  3. 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…

  4. 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

  5. Development and Evaluation of the Barriers to Nurses' Participation in Research Questionnaire at a Large Academic Pediatric Hospital.

    PubMed

    Hagan, Joseph; Walden, Marlene

    2017-04-01

    The purposes of this study were to survey nurses at a large pediatric hospital to examine barriers to nursing research and to develop the Barriers to Nurses' Participation in Research Questionnaire (BNPRQ) in preparation for its use at other institutions. The BNPRQ was created and refined through iterative pilot testing. Exploratory factor analysis was applied, and composite scores were computed for the identified factors. The two latent factors "Research Resources" and "Personal Relevance of Research" were extracted. The independent item "lack of time to do research" represented the largest barrier to research. Factor and item scores differed according to subject characteristics. Findings from this study will be used to create targeted interventions to reduce barriers to research participation prevalent in specific groups of nurses. By using the BNPRQ developed in this study, researchers and administrators at other institutions can identify and address barriers to research among their nurses.

  6. 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

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

    PubMed Central

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

    2011-01-01

    Despite many efforts aimed to ensure that research participation is autonomous and not coerced, there exists no reliable and valid measure of perceived coercion for the doubly vulnerable population of substance-abusing offenders. The current study describes the development and initial validation of an instrument measuring perceived coercion to participate in research among substance-abusing offenders. The results indicated that a substantial number of individuals report feeling coerced to participate in the study. In addition, the instrument has adequate levels of internal consistency, a one-dimensional factor structure, and evidence of discriminative validity. This study provides initial support for the instrument’s validity and clinical utility. PMID:20235867

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

    PubMed

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

    2010-03-01

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

  9. Registry-based analysis of participator representativeness: a source of concern for sickness absence research?

    PubMed Central

    Knapstad, Marit; Löve, Jesper; Holmgren, Kristina; Hensing, Gunnel; Øverland, Simon

    2016-01-01

    Objectives Selective participation can bias results in epidemiological surveys. The importance of health status is often suggested as a possible explanation for non-participation but few empirical studies exist. In a population-based study, explicitly focused on sickness absence, health and work, we examined whether a history of high levels of sickness absence was associated with non-participation. Design The study is based on data from official sickness absence registers from participants, non-participants and the total target population of the baseline survey of the Health Assets Project (HAP). Setting HAP is a population-based cohort study in the Västra Götaland region in South Western Sweden. Participants HAP included a random population cohort (n=7984) and 2 cohorts with recent sickness absence (employees (n=6140) and non-employees (n=990)), extracted from the same overall general working-age population. Primary outcome measures We examined differences in participation rates between cohorts (2008), and differences in previous sickness absence (2001–2008) between participants (individual-level data) and non-participants or the target population (group-level data) within cohorts. Results Participants had statistically significant less registered sickness absence in the past than non-participants and the target population for some, but not all, of the years analysed. Yet these differences were not of substantial size. Other factors than sickness absence were more important in explaining differences in participation, whereby participants were more likely to be women, older, born in Nordic countries, married and have higher incomes than non-participants. Conclusions Although specifically addressing sickness absence, having such experience did not add any substantial layer to selective participation in the present survey. Detailed measures are needed to gain a better understanding for health selection in health-related surveys such as those addressing sickness

  10. 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.

  11. Research in Danish cancer rehabilitation: social characteristics and late effects of cancer among participants in the FOCARE research project.

    PubMed

    Høybye, Mette Terp; Dalton, Susanne Oksbjerg; Christensen, Jane; Larsen, Lone Ross; Kuhn, Katrin Gaardbo; Jensen, Jette Nygaard; Carlsen, Kathrine; Johansen, Christoffer

    2008-01-01

    Worldwide, the number of cancer survivors is increasing, owing to improvements in cancer therapy, resulting in an increased need to address the physical and mental sequelae of cancer. This paper introduces a Danish psychosocial cancer intervention and presents the baseline characteristics of the cancer survivors with respect to cancer site, sociodemographic variables, social network, lifestyle, self-rated health and the prevalence of cancer-related late effects. The study is part of the FOCARE research project, in which the long-term effects of the rehabilitation programme are evaluated systematically. The study is based on data from a self-administered baseline questionnaire filled in by 2 174 cancer survivors who registered for a 1-week, publicly paid rehabilitation retreat and were invited to participate in the FOCARE study in the period 25 November 2002 to 31 December 2005. The response rate at baseline was 86% (n = 1876). Most participants were younger women with breast cancer. They were generally well educated and working. The cancer survivors reported having comprehensive social networks and being physically active. Several cancer-related symptoms were reported by women with cancers at selected sites, of which fatigue was the most prevalent. More than half reported good-to-excellent self-rated health, while fair-to-poor health was reported by 40%, most of whom were survivors of lung (56%) and haematological (48%) cancers. The results indicate that Danish cancer survivors experience considerably reduced physical health, possibly as late physical effects of treatment. The problems reported by the cancer survivors suggest that cancer rehabilitation should include these aspects of living after cancer and take account of differences among cancer survivors with regard to cancer site, sex, age, family, working status and social position. These challenges might be addressed optimally in multi-dimensional rehabilitation programmes.

  12. The 'empty choice': A sociological examination of choosing medical research participation in resource-limited Sub-Saharan Africa.

    PubMed

    Kingori, Patricia

    2015-09-01

    This article explores the views of frontline research staff in different Sub-Saharan African contexts on the notion of choice in biomedical research. It argues that the current emphasis on individual choice, in the conduct of biomedical research, ignores significant structural and contextual factors in resource-limited settings. These factors severely constrain individual options and often make biomedical research enrolment the most amenable route to healthcare for the world's poorest. From the position of frontline research staff, local contextual factors and structural issues narrowly frame the parameters within which many prospective participants are asked to choose, to such an extent that individuals are effectively presented with an 'empty choice'. The article draws on ethnographic and interview data and insights gained through graphic elucidation techniques. It demonstrates that for frontline research staff, macro-level structural factors and their bearing on everyday realities shape what choice in biomedical research participation means in practice.

  13. What Makes Small-Scale Farmers Participate in Financing Agricultural Research and Extension? Analysis of Three Case Studies from Benin

    ERIC Educational Resources Information Center

    Moumouni, Ismail M.; Vodouhe, Simplice D.; Streiffeler, Friedhelm

    2009-01-01

    This paper analyses the organizational, financial and technological incentives that service organizations used to motivate farmers to finance agricultural research and extension in Benin. Understanding the foundations and implications of these motivation systems is important for improving farmer financial participation in agricultural research and…

  14. The Neighborhood Voice: evaluating a mobile research vehicle for recruiting African Americans to participate in cancer control studies.

    PubMed

    Alcaraz, Kassandra I; Weaver, Nancy L; Andresen, Elena M; Christopher, Kara; Kreuter, Matthew W

    2011-09-01

    The Neighborhood Voice is a vehicle customized for conducting health research in community settings. It brings research studies into neighborhoods affected most by health disparities and reaches groups often underrepresented in research samples. This paper reports on the experience and satisfaction of 599 African American women who participated in research on board the Neighborhood Voice. Using bivariate, psychometric, and logistic regression analyses, we examined responses to a brief post-research survey. Most women (71%) reported that they had never previously participated in research, and two-thirds (68%) rated their Neighborhood Voice experience as excellent. Satisfaction scores were highest among first-time research participants (p < .05). Women's ratings of the Neighborhood Voice on Comfort (OR = 4.9; 95% CI = 3.0, 7.9) and Convenience (OR = 1.8; 95% CI = 1.2, 2.9) significantly predicted having an excellent experience. Mobile research facilities may increase participation among disadvantaged and minority populations. Our brief survey instrument is a model for evaluating such outreach.

  15. Development of an informational web site for recruiting research participants: process, implementation, and evaluation.

    PubMed

    Hershberger, Patricia E; Kavanaugh, Karen; Hamilton, Rebekah; Klock, Susan C; Merry, Lisa; Olshansky, Ellen; Pierce, Penny F

    2011-10-01

    Internet-based research is increasing, yet there is little known about recruitment approaches that target the Internet. Investigators have been slow to discuss how to plan, develop, and enhance recruitment using the Internet when well-concealed or disparate populations, sensitive topics, or qualitative methods are interspersed into the aims of the study. The twofold purpose of this article was to (1) highlight the major steps and strategies undertaken to develop and implement an innovative Web site for recruiting high-genetic-risk couples who were considering preimplantation genetic diagnosis use, and (2) present the recruitment results and lessons learned based on enrollment, self-evaluation, and descriptive data. The Web site was developed using a five-step process designed by the investigators. A significant step in the process was determining the Web site objectives, which were enacted through contextual and design decisions, and also by incorporating a brief video and study logo into the Web site. The recruitment results indicate that, of the 22 participant couples, ∼82% were recruited via the Internet versus traditional recruitment approaches (ie, clinics, newsletters) and that the majority of couples viewed the Web site prior to enrolling in the study. In conclusion, developing a Web site using the five-step process can facilitate recruitment.

  16. Clinician and Staff Perspectives on Participating in Practice-based Research: A Report from the Wisconsin Research and Education Network (WREN)

    PubMed Central

    Hoffmann, Amanda E.; Leege, Erin K.; Plane, Mary Beth; Judge, Katherine A.; Irwin, Amy L.; Vidaver, Regina M.; Hahn, David L.

    2016-01-01

    Background The success of practice-based research (PBR) depends on the willingness of clinicians and staff to incorporate meaningful and useful research protocols into already demanding clinic schedules. The impact of participation on those who implement multiple projects and how to address the issues that arise during this complex process remain incompletely described. This article reports on a qualitative evaluation of the experiences of primary care clinicians and clinic staff who participated in multiple PBR projects with the Wisconsin Research and Education Network (WREN). Also included are their suggestions to researchers and clinicians for future collaborations. Methods For program evaluation purposes, WREN conducted four focus groups at its 2014 annual meeting. The main focus group question was: “How has participation in PBR impacted you and your clinic?” Twenty-seven project members from 13 clinics participated in 4 groups (physicians, nurses, managers, and other clinical staff). The two-hour sessions were recorded, transcribed, and analyzed by the authors to identify recurring themes. Results Five major focus group themes emerged: receptivity to research; outcomes as a result of participation; barriers to implementation; facilitators of success; and advice to researchers and colleagues. Focus group members find research valuable and enjoy participating in projects that are relevant to their practice, even though many barriers exist. They indicated that research participation produces clinical changes that they believe result in improved patient care. They offered ways to improve the research process, with particular emphasis on collaborative early planning, project development, and communication before, during, and after a project. Conclusions Clinics that participate in WREN projects remain willing to risk potential work constraints because of immediate or impending benefits to their clinical practice and/or patient population. Including a broader

  17. Enhancing labour force participation for people living with HIV: a multi-perspective summary of the research evidence.

    PubMed

    Worthington, Catherine; O'Brien, Kelly; Zack, Elisse; McKee, Eileen; Oliver, Brent

    2012-01-01

    Labour force participation has been identified as a critical social and health issue facing people living with HIV/AIDS (PHAs). We conducted a scoping study (a form of literature synthesis that summarizes research findings, research activity, and identifies literature strengths and gaps) on labour force participation for PHAs, guided by a community advisory committee. We summarized information from 243 peer-reviewed articles and 42 reports from the grey literature, and synthesized the evidence into a preliminary conceptual framework with five components: (1) the meaning of work, (2) key factors (barriers and facilitators) influencing labour force participation, (3) factors affecting vulnerable populations, (4) strategies and supports for returning to or sustaining work, and (5) outcomes (benefits and risks) of labour force participation for individuals and employers. The framework supports the development of labour force initiatives requiring collaborative efforts in multiple domains (health, employment, community) by PHAs, rehabilitation professionals, employers, insurers, and policy makers.

  18. 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

  19. 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.

  20. Accept or Refuse? A Pilot Study of Patients' Perspective on Participating as Imaginary Research Subjects in Schizophrenia

    PubMed Central

    Kim, Jin Hun; Kim, Daeho; Park, Sung-Hyouk

    2009-01-01

    Objective The goal of the present study was to evaluate demographic and clinical factors that affect the intention to participate in commonly-conducted research in patients with schizophrenia. Methods Thirty-four outpatients with a diagnosis of schizophrenia were enrolled in this study. They were asked whether they would have any intention to participate in four imaginary studies: a simple questionnaire, a genetic study, a study of complex tasks and a risky study. We analyzed the differences in general psychopathology, insight and demographic characteristics of the participants according to their responses (acceptance or refusal) to the four proposed studies. Results Younger and better-educated patients tended to decline participation in a risky study. Patients with a longer duration of regular psychiatric follow-ups tended to willingly participate in the simple questionnaire. There were no overall statistical differences in general psychopathology and insight between patients who agreed or declined to participate in studies. Conclusion Age and education level may be factors that influence decisions to participate in schizophrenia studies. Further research is needed to confirm and expand on the current findings. PMID:20046377

  1. Age and Arts Participation, with a Focus on the Baby Boom Cohort. Research Division Report #34.

    ERIC Educational Resources Information Center

    Peterson, Richard A.; And Others

    Using data taken from the National Endowment for the Arts' Surveys of Public Participation in the Arts (SPPA) which were conducted in 1982 and 1992, this report looks at the effect of age on adult arts participation in seven benchmark or core art forms: classical music, opera, ballet, musicals, jazz, plays, and art museums. The report examines the…

  2. Knowledge Translation from Research to Clinical Practice: Measuring Participation of Children with Disabilities.

    PubMed

    Jeong, Yunwha; Law, Mary; DeMatteo, Carol; Stratford, Paul; Kim, Hwan

    2016-10-01

    This knowledge translation project was conducted to increase occupational therapy practitioners' awareness of the importance of measuring participation of children with disabilities. The Knowledge to Action process framework (KTA framework) guided knowledge translation via a web-based seminar (webinar) to practitioners working with children and educators teaching in occupational therapy programs in South Korea. Two hundred and seventy six views of the webinar were recorded within a month and 15 practitioners and 13 educators completed the online evaluation survey. The participants indicated that the webinar helped them understand the participation concept and its associated measures and raised awareness of practitioners' current use of measurement and intervention that do not focus on participation of children with disabilities. This project led practitioners and educators to realize the importance of measuring participation of children with disabilities and contributes to inform the importance of knowledge translation science to facilitate the evidence-based practice.

  3. 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.

  4. 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.

  5. Learning from Recruitment Challenges: Barriers to Diagnosis, Treatment, and Research Participation for Latinos with Symptoms of Alzheimer's Disease

    PubMed Central

    Gelman, Caroline Rosenthal

    2014-01-01

    This paper discusses barriers to diagnosis and treatment of Alzheimer's disease (AD) and concomitantly to participation in AD research as elicited from 29 potential Latino participants who ultimately did not enroll in a study evaluating a caregiver intervention. Nearly half of all individuals contacting the researcher about the intervention study failed to meet criteria stipulating an existing AD diagnosis. Barriers to obtaining a diagnosis include lack of knowledge about AD, perceptions of memory loss as normal aging, and structural barriers to accessing care. A quarter of caregivers contacting the researcher felt too overwhelmed to participate. Many of these barriers have been previously identified as challenges to treatment, suggesting this is not just a methodological research problem but inextricably tied to larger issues of AD knowledge and service accessibility. Engaging Latino communities equitably in the assessment of needs and the process of addressing them, thus ensuring the validity and applicability of the research and findings, is important both for increasing this group's participation in relevant studies and for addressing existing health disparities. PMID:20029704

  6. Research With Adolescent Victims of Child Sexual Abuse: Evaluation of Emotional Impact on Participants.

    PubMed

    Guerra, Cristóbal; Pereda, Noemí

    2015-01-01

    The aim of this study was to evaluate the emotional impact on adolescent victims of sexual abuse from participating in a study addressing the consequences of their abuse. A total of 114 adolescents between 12 and 17 years old participated (54 sexually abused adolescents and 60 nonabused students). Both groups responded to a battery of scales to determine their coping strategies and some psychological consequences linked to stressful experiences and two questions about the emotional impact of participating in the study. Sexually abused adolescents reported fewer unpleasant emotions after participating than did nonvictim students (mean difference = .45, t[109] = -2.934; p < .01). Adolescents who had more symptoms reported more discomfort (rS scores between .35 and .49; p < .01). These results suggest that when ethical guidelines are followed, it is possible to survey adolescent victims of sexual abuse on aspects related to their experience without causing them significant distress.

  7. 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…

  8. 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

  9. Using a Virtual Research Environment to Support New Models of Collaborative and Participative Research in Scottish Education

    ERIC Educational Resources Information Center

    Wilson, Alastair; Rimpilainen, Sanna; Skinner, Don; Cassidy, Claire; Christie, Donald; Coutts, Norman; Sinclair, Christine

    2007-01-01

    Drawing on research supported within the Scottish "Applied Educational Research Scheme" this paper explores the use of the Virtual Research Environment (VRE) in developing "communities of enquiry" in Scottish education and research. It focuses on the role of VREs in influencing collaborative working and educational research.…

  10. Nurse Practitioners' attitudes about cancer clinical trials and willingness to recommend research participation

    PubMed Central

    Ulrich, Connie M.; Zhou, Quiping; Ratcliffe, Sarah J.; Ye, Lichuan; Grady, Christine; Watkins-Bruner, Deborah

    2016-01-01

    Background Recruitment and retention of human participants in cancer clinical trials remains challenging for all investigators. Nurse Practitioners (NPs) are in a prime position to discuss, educate and refer patients to clinical trials as many NPs work in ethnically and geographically diverse primary care settings in the U.S., yet they remain an untapped resource. We examined NPs' general attitudes toward cancer clinical trial recommendations and assessed their willingness to recommend such trials. Methods We randomly surveyed 455 primary care NPs in the state of Pennsylvania during 2008 with an adjusted response rate of 55.3%. Descriptive statistics were used to characterize NPs' demographic and practice characteristics, and logistic regression was used to assess the relative influence of the various attitudes and beliefs on the likelihood that the NP would bring up clinical trials as a treatment option. Results NPs were more likely to bring up the topic of clinical trials with at least some patients if they were comfortable discussing treatment options with their cancer patients (OR = 4.29, p = 0.001), were comfortable discussing options of entering a clinical trial for treatment (OR = 3.54, p = 0.003), had adequate time during patients' visit to explain clinical trials (OR = 3.40, p = 0.008), and if they believed that patients in clinical trials were receiving the best medical treatment (OR = 3.34, p = 0.019). NPs who were comfortable discussing cancer clinical trials were almost 5 times more likely to think clinical trials were useful (OR = 4.70; 95% CI = 1.81–12.19; p = 0.001). Nearly three-quarters (72.6%) of the entire responder sample reported three or more ethical concerns associated with clinical trials, including issues of randomization, informed consent, and patient burden. Conclusions NPs are willing to recommend clinical trials but need more education about the benefits and burdens of clinical trials, the associated ethical concerns, and evidence

  11. 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

  12. Patient participation in psoriasis and psoriatic arthritis outcome research: a report from the GRAPPA 2013 Annual Meeting.

    PubMed

    de Wit, Maarten; Campbell, Willemina; FitzGerald, Oliver; Gladman, Dafna D; Helliwell, Phillip S; James, Jana; Lindsay, Chris; MacDonald, Roland; McHugh, Neil J; Mease, Philip J; Orbai, Ana-Maria; Palominos, Penélope; Parkinson, Andrew; Tillett, William; Goel, Niti

    2014-06-01

    For the first time, 8 patients with psoriatic arthritis (PsA) participated as full delegates at the 2013 Annual Meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA). Patients were invited to provide their perspective for different sessions of the conference program. Before the conference, the patient delegates had a separate meeting to familiarize themselves with the conference program and to gain a better understanding of the vision and objectives of GRAPPA. During the conference, the patient group discussed options for increased involvement in research projects. Herein we summarize the presentations on patient participation in research, the experiences of the patient group, and plans to enhance the patient perspective in psoriasis and PsA research.

  13. Evaluation of a team-based learning tutor training workshop on research and publication ethics by faculty and staff participants.

    PubMed

    Ju, Young-Su

    2009-12-20

    A team-based Learning (TBL) tutor training workshop on research and publication ethics was offered to 8 faculty members and 3 staff at Hallym University in 2009. To investigate the effect of the workshop and any attitude changes, a questionnaire survey was performed after the 8-hr course. Questions in four categories-general course content, change in attitudes toward research and publication ethics, the TBL format, and an open-ended question about the course--were included. Participants responded positively to all items on general course content. There was a positive change in attitude on research and publication ethics. Participants also responded positively to six items on team-based learning. The overall positive response to the workshop on research and publication ethics suggested the effectiveness of this kind of TBL tutor training course for university faculty and staff.

  14. A Systematic Review of Barriers and Facilitators to Minority Research Participation Among African Americans, Latinos, Asian Americans, and Pacific Islanders

    PubMed Central

    Duran, Nelida; Norris, Keith

    2014-01-01

    To assess the experienced or perceived barriers and facilitators to health research participation for major US racial/ethnic minority populations, we conducted a systematic review of qualitative and quantitative studies from a search on PubMed and Web of Science from January 2000 to December 2011. With 44 articles included in the review, we found distinct and shared barriers and facilitators. Despite different expressions of mistrust, all groups represented in these studies were willing to participate for altruistic reasons embedded in cultural and community priorities. Greater comparative understanding of barriers and facilitators to racial/ethnic minorities’ research participation can improve population-specific recruitment and retention strategies and could better inform future large-scale prospective quantitative and in-depth ethnographic studies. PMID:24328648

  15. 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

  16. 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…

  17. 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…

  18. 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…

  19. 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.

  20. Reactions to "Ethical Challenges and Complexities of Including People with Intellectual Disability as Participants in Research" by Dr Teresa Iacono

    ERIC Educational Resources Information Center

    Aman, Michael G.; Handen, Benjamin

    2006-01-01

    The authors' reaction to Dr Teresa Iacono's article "Ethical challenges and complexities of including people with intellectual disability as participants in research" is presented. Among other things, they find that Dr Iacono has done an outstanding job of describing creative solutions for obtaining appropriate informed consent from people with…

  1. 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.

  2. 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…

  3. Voices in the Park: Researching the Participation of Young Children in Outdoor Play in Early Years Settings

    ERIC Educational Resources Information Center

    Waller, Tim

    2014-01-01

    This article critically reflects on the participation of young children aged 3-4 years in an ongoing outdoor learning project started in 2004. The aims of the research are to investigate children's dispositions within the outdoor environment, to elicit children's perspectives of their outdoor experiences and to investigate the relationship between…

  4. Coordinating research and practice: challenges testing messages to increase medical reserve corps participation in local health department activities.

    PubMed

    Klaiman, Tamar; Higdon, Melissa; Galarce, Ezequiel

    2013-04-01

    Local health departments (LHDs) increasingly depend on volunteers, often Medical Reserve Corps (MRC) volunteers, to assist with a variety of functions. While LHDs have extensive lists of volunteers, only about 10 % are actively involved in LHD activities. Psychological literature has shown that well-designed messages can motivate behavior among individuals. Key to this theory is the concept of "framing," defined as the influence the characterization of an issue can have on its understanding. Research has been conducted on how to frame and disseminate both political and public health messages to alter individual behavior. We aimed to design and test appropriate evidence-based messages to increase volunteer participation rates in LHD flu clinics. After inviting over 900 MRC units to participate during the 2011-2012 influenza season, five were able to collect and report data to the research team. Using a randomized trial design, we tested messages among the five participating MRC units consisting of a total of 2,020 volunteers. Chi Square analysis showed no difference in attendance between those who received either of the test messages versus the control message (p = .305). Our small sample size of MRC units likely biased our sample and reduced the external validity of our study. Our experience in conducting research with MRC coordinators and volunteers highlights the challenges of conducting research with practitioners who lack the time, infrastructure and resources necessary to work with researchers. There is a strong need for more supportive infrastructure for conducting research with practitioners.

  5. 'Relief of oppression': An organizing principle for researchers' obligations to participants in observational studies in the developing world

    PubMed Central

    2010-01-01

    Background A central question in the debate about exploitation in international research is whether investigators and sponsors from high-income countries (HIC) have obligations to address background conditions of injustice in the communities in which they conduct their research, beyond the healthcare and other research-related needs of participants, to aspects of their basic life circumstances. Discussion In this paper, we describe the Majengo sexually transmitted disease (STD) Cohort study, a long-term prospective, observational cohort of sex workers in Nairobi, Kenya. Despite important scientific contributions and a wide range of benefits to the women of the cohort, most of the women have remained in the sex trade during their long-standing participation in the cohort, prompting allegations of exploitation. The Majengo STD cohort case extends the debate about justice in international research ethics beyond clinical trials into long-term observational research. We sketch the basic features of a new approach to understanding and operationalizing obligations of observational researchers, which we call 'relief of oppression'. 'Relief of oppression' is an organizing principle, analogous to the principle of harm reduction that is now widely applied in public health practice. Relief of oppression aims to help observational researchers working in conditions of injustice and deprivation to clarify their ethical obligations to participants. It aims to bridge the gap between a narrow, transaction-oriented account of avoiding exploitation and a broad account emphasizing obligations of reparation for historic injustices. We propose that relief of oppression might focus researchers' consideration of benefits on those that have some relevance to background conditions of injustice, and so elevate the priority of these benefits, in relation to others that might be considered and negotiated with participants, according to the degree to which the participating communities are

  6. [Changes in labor market participation of older employees in Germany: the perspective of labor market research].

    PubMed

    Brussig, M

    2009-08-01

    For many years, Germany has been regarded in international comparisons as an example of a generous early retirement culture, resulting in a low labor market participation of older employees. Recently, however, employment rates of older employees have increased remarkably. Reasons are the demographic structure of older persons in Germany, a long-term trend of increasing female labor market participation, and reforms in labor-market policies and pension policies during the last 10 years. Despite an increasing labor market participation of older employees, traditional labor market risks for older persons partly remained, but some new risks evolved as well. Therefore, social differentiation among older employees increased.Although detailed macro descriptions exist, the causes of labor market developments cannot be fully understood with cross-sectional data alone. An important stimulus is to be expected from individual longitudinal data which reflect employment histories and labor market transitions such as employment exit and retirement.

  7. 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.

  8. 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.

  9. 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…

  10. 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…

  11. Pedagogies of Participation in Higher Education: A Case for Research-Based Learning

    ERIC Educational Resources Information Center

    Lambert, Cath

    2009-01-01

    This article addresses the question of the role and function of contemporary higher education in western industrialised nations through a focus on the participation of undergraduate students. The discussion examines some of the dramatic changes brought about by neo-liberal educational policy, in particular the hierarchical division of teaching and…

  12. 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…

  13. 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.

  14. 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…

  15. 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,…

  16. 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…

  17. Situated Ethics: Possibilities for Young Children as Research Participants in the South African Context

    ERIC Educational Resources Information Center

    Ebrahim, Hasina Banu

    2010-01-01

    The ethics of engaging in sociological research involving children has primarily been shaped by a set of general principles and codes that are applied to all situations. Whilst this has been a crucial guideline for researching children's experiences, it is inadequate in addressing the moral complexities that confront researchers in specific…

  18. 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…

  19. 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

  20. Enhancing Junior Faculty Research Productivity through Multiinstitution Collaboration: Participants' Impressions of the School Psychology Research Collaboration Conference

    ERIC Educational Resources Information Center

    Rush, S. Craig; Wheeler, Joanna

    2011-01-01

    In addition to teaching and service responsibilities, junior faculty members are required to be productive researchers. Despite the demand on junior faculty to produce published research, studies suggest that they often do not receive adequate assistance with their research endeavors. Mentoring is an effective form of support for junior faculty…

  1. 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…

  2. 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.

  3. 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

  4. Eliminating Health Disparities Through Transdisciplinary Research, Cross-Agency Collaboration, and Public Participation

    PubMed Central

    Spengler, Robert F.; Wagner, Robin M.; Melanson, Cindi; Skillen, Elizabeth L.; Mays, Robert A.; Heurtin-Roberts, Suzanne; Long, Judith A.

    2009-01-01

    Despite efforts to the contrary, disparities in health and health care persist in the United States. To solve this problem, federal agencies representing different disciplines and perspectives are collaborating on a variety of transdisciplinary research initiatives. The most recent of these initiatives was launched in 2006 when the Centers for Disease Control and Prevention's Office of Public Health Research and the Department of Health and Human Services’ Office of Minority Health brought together federal partners representing a variety of disciplines to form the Federal Collaboration on Health Disparities Research (FCHDR). FCHDR collaborates with a wide variety of federal and nonfederal partners to support and disseminate research that aims to reduce or eliminate disparities in health and health care. Given the complexity involved in eliminating health disparities, there is a need for more transdisciplinary, collaborative research, and facilitating that research is FCHDR's mission. PMID:19762652

  5. 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

  6. A Case Study of Engaging Hard-to-Reach Participants in the Research Process: Community Advisors on Research Design and Strategies (CARDS)®.

    PubMed

    Kaiser, Betty L; Thomas, Gay R; Bowers, Barbara J

    2017-02-01

    Lack of diversity among study participants in clinical research limits progress in eliminating health disparities. The engagement of lay stakeholders, such as patient or community advisory boards (CABs), has the potential to increase recruitment and retention of underrepresented groups by providing a structure for gathering feedback on research plans and materials from this target population. However, many CABs intentionally recruit prominent stakeholders who are connected to or comfortable with research and academia and thus may not accurately represent the perspectives of underrepresented groups who have been labeled hard-to-reach, including racial minorities and low-income or low-literacy populations. We developed a partnership between the University of Wisconsin-Madison School of Nursing and two community centers to deliberately engage hard-to-reach people in two lay advisory groups, the Community Advisors on Research Design and Strategies (CARDS)®. Community center staff recruited the CARDS from center programs, including parenting and childcare programs, women's support groups, food pantries, and senior meal programs. The CARDS model differs from other CABs in its participants, processes, and outcomes. Since 2010, the CARDS have met monthly with nurses and other researchers, helping them understand how research processes and the language, tone, appearance, and organization of research materials can discourage people from enrolling in clinical studies. We have successfully used the CARDS model to bring hard-to-reach populations into the research process and have sustained their participation. The model represents a promising strategy for increasing the diversity of participants in clinical research. © 2016 Wiley Periodicals, Inc.

  7. 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

  8. Facebook Enables Disaster Research Studies: The Use of Social Media to Recruit Participants in a Post-Disaster Setting

    PubMed Central

    Hugelius, Karin; Adolfsson, Annsofie; Gifford, Mervyn; Örtenwall, Per

    2017-01-01

    Introduction: Disaster research entails several methodological challenges, given the context of a disaster. This article aims to describe and evaluate the use of Facebook as a tool to recruit participants for a self-selected Internet sample using a web-based survey in a post-disaster setting in the Philippines after the Haiyan typhoon hit parts of the country in November 2013. Method: An invitation to a web-based survey about health was posted on several Facebook pages during a ten-day period. Results: In total, 443 individuals who had survived the Haiyan typhoon participated in the study. The demographics of the study sample were similar to the general demographics in the Philippines, considering gender, age distribution and level of education. Discussion: The study showed that the use of social media to recruit participants for disaster research could limit several of the practical and ethical challenges connected to disaster research. However, the method demands access to the Internet and requires several strategic considerations, particularly concerning non-probability sample biases and generalization as well as an active approach from the researcher. PMID:28228976

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

    PubMed

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

    2015-02-01

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

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

    PubMed Central

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

    2017-01-01

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

  11. The Ethical Maze: Finding an Inclusive Path towards Gaining Children's Agreement to Research Participation

    ERIC Educational Resources Information Center

    Cocks, Alison J.

    2006-01-01

    In the UK, the ethics of engaging in sociological research directly involving children have primarily been shaped by definitions of "competence". While this has been a crucial guideline for researchers in shaping the concept of informed consent, it has also acted, perhaps inadvertently, as a way of excluding particular children from the…

  12. 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…

  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. 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…

  15. 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…

  16. 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…

  17. 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…

  18. 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…

  19. 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…

  20. 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…

  1. 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…

  2. 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…

  3. You Must Participate: Violating Research Ethical Principles through Role-Play

    ERIC Educational Resources Information Center

    Kraus, Rachel

    2008-01-01

    The author discusses the use of role-play to teach research ethics in three semesters of a research methods class. Small groups of students were assigned one of nine ethical norms discussed in the course textbook and the American Sociological Association Code of Ethics. Each group role-played the violation of their assigned ethic to the class. The…

  4. 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

  5. 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…

  6. 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…

  7. Increasing the Participation of Women in Scientific Research. Summary of a Conference Proceedings, October 1977, and Research Study Project Report, March 1978.

    ERIC Educational Resources Information Center

    National Science Foundation, Washington, DC.

    This publication contains highlights from a report on the participation of women in scientific research which was prepared by the Office of Opportunities in Science (OOS), American Association for the Advancement of Science (AAAS) with the support of the National Science Foundation (NSF). The report, issued March 1978, includes both the findings…

  8. Current status of the institutional review boards in Korea: constitution, operation, and policy for protection of human research participants.

    PubMed Central

    Kim, Ock-Joo; Park, Byung-Joo; Sohn, Dong-Ryul; Lee, Seung-Mi; Shin, Sang-Goo

    2003-01-01

    The institutional review board is crucial to ensure the scientific and ethical quality of human participant research. This paper analyzes a survey on the current constitution and operation of institutional review boards (IRBs) in Korea, conducted by the Korean Association of Institutional Review Boards in April 2002. Out of 74 IRBs, 63 responded to the survey (85.1% response rate). IRB membership has a male-to-female ratio of approximately 80:20, a predominance of male clinicians (60%) and an underrepresentation of community people unaffiliated to the institutions (less than 10%). Most IRBs (around 80%) confine the scope of their reviews to the clinical evaluation of drugs or devices, leaving the remaining areas of research involving human participants untouched. As their role is limited, the majority of IRBs do not operate actively: 72% of responding IRBs reviewed less than one protocol per month in 2001. Sixty two percent of institutions have never discussed the need for insuring research participants' risks or making indemnity arrangements. This survey reveals many shortcomings and points for improvement by the institutional support bodies, including the need to establish regular education programs for IRB members and investigators. PMID:12589079

  9. To stop or not to stop: dissent and undue burden as reasons to stop participation in paediatric research.

    PubMed

    Bos, Wendy; Westra, Anna; de Beaufort, Inez; van de Vathorst, Suzanne

    2016-12-01

    Children participating in clinical research may show signs of discomfort, discontent, dissent and so on, that cannot be solved by comforting the child. When, and on what ground, should such signs lead to the decision to withdraw the child from the trial? In order to adequately protect children participating in clinical research, it is important to know how to determine during the course of a trial whether participation is still justified. Yet to date, legislation, ethical guidelines and medical ethical literature do not provide sufficient guidance. Therefore, in this paper we aim to provide the required clarity. We identify two types of reasons for taking signs of discomfort, discontent, dissent and so on, very seriously: (1) the principle of respect for the growing autonomy of the child, in those cases where a child expresses a clear, explicit and persistent wish to be withdrawn from the study; and (2) the principle of non-maleficence, in those cases where for an individual child, the research burden appears to be higher than acceptable. We recommend to closely monitor each child during the course of the study, thereby being vigilant to whether the child still wants to continue and to whether the actual burden the child experiences is still acceptable in relation to the permitted levels of burden.

  10. The Effect of Message Framing on African American Women's Intention to Participate in Health-Related Research.

    PubMed

    Balls-Berry, Joyce E; Hayes, Sharonne; Parker, Monica; Halyard, Michele; Enders, Felicity; Albertie, Monica; Pinn, Vivian; Radecki Breitkopf, Carmen

    2016-05-01

    This study examined the effect of message framing on African American women's intention to participate in health-related research and actual registration in ResearchMatch (RM), a disease-neutral, national volunteer research registry. A community-engaged approach was used involving collaboration between an academic medical center and a volunteer service organization formed by professional women of color. A self-administered survey that contained an embedded message framing manipulation was distributed to more than 2,000 African American women attending the 2012 national assembly of The Links, Incorporated. A total of 391 surveys were completed (381 after exclusion: 187 containing the gain-framed message and 194 containing the loss-framed message). The majority (57%) of women expressed favorable intentions to participate in health-related research, and 21% subsequently enrolled in RM. The effect of message framing on intention was moderated by self-efficacy. There was no effect of message framing on RM registration; however, those with high self-efficacy were more than 2 times as likely as those with low self-efficacy to register as a potential study volunteer in RM (odds ratio = 2.62, 95% confidence interval [1.29, 5.33]). This investigation makes theoretical and practical contributions to the field of health communication and informs future strategies to meaningfully and effectively include women and minorities in health-related research.

  11. 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

  12. Anticipating risk for human subjects participating in clinical research: application of Failure Mode and Effects Analysis.

    PubMed

    Cody, Robert J

    2006-03-01

    Failure Mode and Effects Analysis (FMEA) is a method applied in various industries to anticipate and mitigate risk. This methodology can be more systematically applied to the protection of human subjects in research. The purpose of FMEA is simple: prevent problems before they occur. By applying FMEA process analysis to the elements of a specific research protocol, the failure severity, occurrence, and detection rates can be estimated for calculation of a "risk priority number" (RPN). Methods can then be identified to reduce the RPN to levels where the risk/benefit ratio favors human subject benefit, to a greater magnitude than existed in the pre-analysis risk profile. At the very least, the approach provides a checklist of issues that can be individualized for specific research protocols or human subject populations.

  13. 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

  14. A review of patient and carer participation and the use of qualitative research in the development of core outcome sets

    PubMed Central

    2017-01-01

    Background To be meaningful, a core outcome set (COS) should be relevant to all stakeholders including patients and carers. This review aimed to explore the methods by which patients and carers have been included as participants in COS development exercises and, in particular, the use and reporting of qualitative methods. Methods In August 2015, a search of the Core Outcomes Measures in Effectiveness Trials (COMET) database was undertaken to identify papers involving patients and carers in COS development. Data were extracted to identify the data collection methods used in COS development, the number of health professionals, patients and carers participating in these, and the reported details of qualitative research undertaken. Results Fifty-nine papers reporting patient and carer participation were included in the review, ten of which reported using qualitative methods. Although patients and carers participated in outcome elicitation for inclusion in COS processes, health professionals tended to dominate the prioritisation exercises. Of the ten qualitative papers, only three were reported as a clear pre-designed part of a COS process. Qualitative data were collected using interviews, focus groups or a combination of these. None of the qualitative papers reported an underpinning methodological framework and details regarding data saturation, reflexivity and resource use associated with data collection were often poorly reported. Five papers reported difficulty in achieving a diverse sample of participants and two reported that a large and varied range of outcomes were often identified by participants making subsequent rating and ranking difficult. Conclusions Consideration of the best way to include patients and carers throughout the COS development process is needed. Additionally, further work is required to assess the potential role of qualitative methods in COS, to explore the knowledge produced by different qualitative data collection methods, and to evaluate

  15. 76 FR 18553 - Agency Forms Undergoing Paperwork Reduction Act Review

    Federal Register 2010, 2011, 2012, 2013, 2014

    2011-04-04

    ... HUMAN SERVICES Centers for Disease Control and Prevention Agency Forms Undergoing Paperwork Reduction... in clients' self-reported HIV transmission risk behaviors after participating in the intervention... participant will complete a 20 minute, self administered, computer based interview prior to...

  16. Elucidating the power in empowerment and the participation in participatory action research: a story about research team and elementary school change.

    PubMed

    Dworski-Riggs, Deanne; Langhout, Regina Day

    2010-06-01

    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.

  17. 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

  18. 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…

  19. 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…

  20. 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…

  1. 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…

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

    ERIC Educational Resources Information Center

    Magnussen, Rikke; Hansen, Sidse Damgaard; Planke, Tilo; Sherson, Jacob Friis

    2014-01-01

    This paper presents results from the design and testing of an educational version of Quantum Moves, a Scientific Discovery Game that allows players to help solve authentic scientific challenges in the effort to develop a quantum computer. The primary aim of developing a game-based platform for student-research collaboration is to investigate if…

  3. Building Environmental Literacy through Participation in GIS and Multimedia Assisted Field Research

    ERIC Educational Resources Information Center

    Lo, C. P.; Affolter, James M.; Reeves, Thomas C.

    2002-01-01

    A Learning Support System (LSS) that emphasizes experiential research in natural environments using the cutting-edge technologies of GIS and multimedia has been developed for teaching environmental literacy to undergraduate students at the University of Georgia. Computers are used as cognitive tools to create a context in which students become…

  4. 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…

  5. The Reality of Child Participation in Research: Experience from a Capacity-Building Programme.

    ERIC Educational Resources Information Center

    Kefyalew, Firew

    1996-01-01

    Examined feasibility of using observation, interviews, focus groups, questionnaires, checklists, essay writing, drawing, ranking, activities mapping, and participatory rural appraisal with disadvantaged children. Feedback was provided by children from a capacity-building program on child-centered research, psychologists, and program trainees.…

  6. "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…

  7. 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…

  8. 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…

  9. Enabling Students to Participate in School Improvement through a Students as Researchers Programme

    ERIC Educational Resources Information Center

    Roberts, Amanda; Nash, Judith

    2009-01-01

    This article explores students' potential to make a difference to their school through a Students as Researchers programme. It begins by discussing the impetus for the current increase in student voice initiatives in schools. It continues the debate around issues of student empowerment and students' identity as change agents through an analysis of…

  10. Undocumented Research Participants: Ethics and Protection in a Time of Fear

    ERIC Educational Resources Information Center

    Lahman, Maria K. E.; Mendoza, Bernadette M.; Rodriguez, Katrina L.; Schwartz, Jana L.

    2011-01-01

    President Obama characterized Arizona's recent immigration law as undermining "basic notions of fairness that we cherish as Americans." The authors' extend the national discussion regarding immigration to ethics and research. Therefore, the purpose of this methodological article is to advance areas for ethical consideration when researching…

  11. 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…

  12. Research understanding, attitude and awareness towards biobanking: a survey among Italian twin participants to a genetic epidemiological study

    PubMed Central

    Toccaceli, Virgilia; Fagnani, Corrado; Nisticò, Lorenza; D'Ippolito, Cristina; Giannantonio, Lorenzo; Brescianini, Sonia; Stazi, Maria Antonietta

    2009-01-01

    Background The Italian Twin Registry (ITR) has been carrying out several genetic-epidemiological studies. Collection and storage of biological material from study participants has recently increased in the light of biobanking development. Within this scenario, we aimed at investigating understanding, awareness and attitude towards blood/DNA donation of research participants. About these quite unknown dimensions more knowledge is needed from ethical and social perspectives. Methods Cross-sectional mail survey to explore three dimensions: (i) understanding of aims and method of a specific study, (ii) attitude (three ideas for donation: "moral duty", "pragmatism", "spontaneity") and (iii) awareness (i.e. the recall of having been asked to donate) towards blood/DNA donation for research, among all the Italian twins who had participated in Euroclot (n = 181), a large international genetic-epidemiological study. Multivariate models were applied to investigate the association of sex, age, education and modality of Euroclot recruitment (twins enrolled in the ITR and volunteers) with the targeted dimensions. Pair-wise twin concordance for the "pragmatic" attitude was estimated in monozygotic and dizygotic pairs. Results Response rate was 56% (99 subjects); 75.8% understood the Euroclot method, only 33.3% correctly answered about the study aim. A significantly better understanding of aim and method was detected in "volunteers". Graduated subjects were more likely to understand study aim. In the overall sample, the "pragmatic" attitude to blood donation reached 76.8%, and biobanking awareness 89.9%. The latter was significantly higher among women. Monozygotic twins were more concordant than dizygotic twins for the "pragmatic" attitude towards blood/DNA donation for research. Conclusion Level of understanding of aims and methods of a specific research project seems to vary in relation to modalities of approaching research; most of the twins are well aware of having been asked

  13. Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada

    PubMed Central

    2013-01-01

    Background Although there is extensive information about why people participate in clinical trials, studies are largely based on quantitative evidence and typically focus on single conditions. Over the last decade investigations into why people volunteer for health research have become increasingly prominent across diverse research settings, offering variable based explanations of participation patterns driven primarily by recruitment concerns. Therapeutic misconception and altruism have emerged as predominant themes in this literature on motivations to participate in health research. This paper contributes to more recent qualitative approaches to understanding how and why people come to participate in various types of health research. We focus on the experience of participating and the meanings research participation has for people within the context of their lives and their health and illness biographies. Methods This is a qualitative exploratory study informed by grounded theory strategies. Thirty-nine participants recruited in British Columbia and Manitoba, Canada, who had taken part in a diverse range of health research studies participated in semi-structured interviews. Participants described their experiences of health research participation including motivations for volunteering. Interviews were recorded, transcribed, and analyzed using constant comparisons. Coding and data management was supported by Nvivo-7. Results A predominant theme to emerge was 'participation in health research to access health services.’ Participants described research as ways of accessing: (1) Medications that offered (hope of) relief; (2) better care; (3) technologies for monitoring health or illness. Participants perceived standard medical care to be a “trial and error” process akin to research, which further blurred the boundaries between research and treatment. Conclusions Our findings have implications for recruitment, informed consent, and the dichotomizing of medical

  14. 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.

  15. Enhancing Participation in the U.S. Global Change Research Program

    SciTech Connect

    Washington, Warren; Lee, Kai; Arent, Doug; Avery, Susan; Chakos, Arrietta; Daszak, Peter; Dietz, Thomas; Ebi, Kristie L.; Fischhoff, Baruch; Grimm, Nancy B.; Jacoby, Henry; Janetos, Anthony C.; Kheshgi, Haroon S.; Moss, Richard H.; Noble, Ian; Oge, Margo; Segerson, Kathleen; Tierney, Kathleen; Vorosmarty, Charles J.

    2016-02-29

    The US Global Change Research Program (USGCRP) is a collection of 13 Federal entities charged by law to assist the United States and the world to understand, assess, predict, and respond to human-induced and natural processes of global change. As the understanding of global change has evolved over the past decades and as demand for scientific information on global change has increased, the USGCRP has increasingly focused on research that can inform decisions to cope with current climate variability and change, to reduce the magnitude of future changes, and to prepare for changes projected over coming decades. Overall, the current breadth and depth of research in these agencies is insufficient to meet the country's needs, particularly to support decision makers. This report provides a rationale for evaluating current program membership and capabilities and identifying potential new agencies and departments in the hopes that these changes will enable the program to more effectively inform the public and prepare for the future. It also offers actionable recommendations for adjustments to the methods and procedures that will allow the program to better meet its stated goals.

  16. Using action research to investigate and improve hospice staff participation in workplace education.

    PubMed

    Griffith, Sue

    2013-06-01

    Finding ways to make good quality education available to all staff in an expanding and increasingly busy hospice organisation is a real challenge. Constantly providing learning opportunities that are then poorly attended owing to the pressure of work is equally disappointing, and leads to questions of cost-effectiveness. An action research project was undertaken to investigate the reasons for low attendance rates at learning events in one hospice. Having identified time and conflict with patient need as major issues, a second cycle of research using literature review and a survey methodology was conducted to find a contemporary and innovative solution to this problem in an attempt to establish a vibrant learning culture. As a result a virtual learning environment--ORACLE (Online Research and Care Learning Environment)--was created to augment the face-to-face sessions and provide staff with access to appropriate learning materials 24 hours per day, 365 days per year.Although unique to this organisation, ORACLE has potential application to any other work environment.

  17. 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

  18. Why do rape survivors volunteer for face-to-face interviews? A meta-study of victims' reasons for and concerns about research participation.

    PubMed

    Campbell, Rebecca; Adams, Adrienne E

    2009-03-01

    There is growing interest in understanding how different research methods are perceived by victims of violence and what survivors will reveal to researchers (termed meta-research or meta-studies). The purpose of this project was to conduct a qualitative meta-study on why rape survivors chose to participate in community-based, face-to-face interviews. Participants mentioned four primary reasons for why they decided to participate in this study: (a) to help other survivors, (b) to help themselves, (c) to support research on rape/sexual assault, and (d) to receive financial compensation. Implications for designing research recruitment protocols are discussed.

  19. Improving participation rates for women of color in health research: the role of group cohesion.

    PubMed

    Smith-Ray, Renae L; Mama, Scherezade; Reese-Smith, Jacqueline Y; Estabrooks, Paul A; Lee, Rebecca E

    2012-02-01

    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.

  20. 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.

  1. Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project

    PubMed Central

    Sanderson, Saskia C; Linderman, Michael D; Suckiel, Sabrina A; Diaz, George A; Zinberg, Randi E; Ferryman, Kadija; Wasserstein, Melissa; Kasarskis, Andrew; Schadt, Eric E

    2016-01-01

    Whole exome/genome sequencing (WES/WGS) is increasingly offered to ostensibly healthy individuals. Understanding the motivations and concerns of research participants seeking out personal WGS and their preferences regarding return-of-results and data sharing will help optimize protocols for WES/WGS. Baseline interviews including both qualitative and quantitative components were conducted with research participants (n=35) in the HealthSeq project, a longitudinal cohort study of individuals receiving personal WGS results. Data sharing preferences were recorded during informed consent. In the qualitative interview component, the dominant motivations that emerged were obtaining personal disease risk information, satisfying curiosity, contributing to research, self-exploration and interest in ancestry, and the dominant concern was the potential psychological impact of the results. In the quantitative component, 57% endorsed concerns about privacy. Most wanted to receive all personal WGS results (94%) and their raw data (89%); a third (37%) consented to having their data shared to the Database of Genotypes and Phenotypes (dbGaP). Early adopters of personal WGS in the HealthSeq project express a variety of health- and non-health-related motivations. Almost all want all available findings, while also expressing concerns about the psychological impact and privacy of their results. PMID:26036856

  2. 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.

  3. [The role of bioethics committees in the systems protecting scientific biomedical research participants in France and in Poland].

    PubMed

    Czarkowski, Marek; Sieczych, Alicja

    2013-08-01

    Bioethics committees are along with ethic regulations and rules of law one of three main pillars in the system of protection of scientific biomedical research participants. Although principal directives for bioethics committees are established by international guidelines, detailed regulations may differ in particular states. The aim of this article was to compare two bioethic committees systems: French and Polish one. Historical beginnings of the bioethics committees system in France and in Poland are briefly mentioned, Subsequently, the networks of bioethics committees in both countries are compared. Although the number of bioethics committees (Research Ethic Committees) in both countries is comparable, the procedure of their establishment varies. French committees are based on administrative division of the country and divide on regional and interregional committees. In Poland, bioethics committees are established by medical universities, medical research and development units or regional chambers of physicians and dentists. In France there is no equivalent of Appeal Bioethics Committee, however one could appeal from the negative bioethics committee's opinion. The composition of French bioethics committees is more diverse and half of the members are not related to medical professions. Members of French committees are named on indefinite term by headmaster of Regional Health Agency after having been chosen in competition for the post. In Poland members are called on three-year-term but the rotation of members is not overwhelming since there is no limit of terms for one member. French legal solutions seems more secure for scientific bioethics research participants. For this reason, a detailed research on legislation in other countries is necessary before introducing any new regulations in Polish law.

  4. Arts Education in America: What the Declines Mean for Arts Participation. Based on the 2008 Survey of Public Participation in the Arts. Research Report #52

    ERIC Educational Resources Information Center

    Rabkin, Nick; Hedberg, E. C.

    2011-01-01

    The Surveys of Public Participation in the Arts (SPPAs), conducted for the National Endowment for the Arts, have shown a steady decline in the rates of adult attendance at most "benchmark" arts events--specifically, classical music and jazz concerts, musical and non-musical plays, opera, and ballet performances--as well as declines in other forms…

  5. Contrasting views of risk perception and influence of financial compensation between adolescent research participants and their parents.

    PubMed

    Wiener, Lori; Viola, Adrienne; Wilfond, Benjamin S; Wendler, David; Grady, Christine

    2015-02-01

    U.S. regulations governing pediatric research do not specify the assent process. To identify best practices, it is important to examine parents' and adolescents' views. The present study focuses on parents' and adolescents' views regarding possible research risks and the influence of financial compensation on their willingness to accept research procedures. Interviews were conducted with 177 adolescents participating in clinical research for a medical or psychiatric illness, or as healthy volunteers, and a parent. Significant discordance was found between how bothered the teen would feel from research-related side effects and procedures compared with parental report. Most teens were willing to accept non-beneficial procedures without compensation. Payment had significantly greater influence on healthy volunteers and their parents compared with those with a medical or psychiatric illness. Discordance between adolescent and parental views about risks recommends obtaining direct input from adolescents during the assent process. Modest payments should not raise concerns of undue inducement, especially in teens with pre-existing conditions.

  6. How Are the Interests of Incapacitated Research Participants Protected through Legislation? An Italian Study on Legal Agency for Dementia Patients

    PubMed Central

    Gainotti, Sabina; Fusari Imperatori, Susanna; Spila-Alegiani, Stefania; Maggiore, Laura; Galeotti, Francesca; Vanacore, Nicola; Petrini, Carlo; Raschetti, Roberto; Mariani, Claudio; Clerici, Francesca

    2010-01-01

    Background Patients with dementia may have limited capacity to give informed consent to participate in clinical research. One possible way to safeguard the patients' interests in research is the involvement of a proxy in the recruitment process. In Italy, the system of proxy is determined by the courts. In this study we evaluate the timing for appointment of a legal proxy in Italy and identify predictive variables of appointment. Methodology/Principal Findings Subjects were recruited among the outpatients seeking medical advice for cognitive complaints at the Centre for Research and Treatment of Cognitive Dysfunctions, University of Milan, “Luigi Sacco” Hospital. The Centre was participating to the AdCare Study, a no-profit randomised clinical trial coordinated by the Italian National Institute of Health. The requirement that informed consent be given by a legal representative dramatically slowed down the recruitment process in AdCare, which was prematurely interrupted. The Centre for Research and Treatment of Cognitive Dysfunctions collected data on the timing required to appoint the legal representatives. Patients diagnosed with dementia and their caregivers were provided information on the Italian law on legal agency (law 6/2004). At each scheduled check-up the caregiver was asked whether she/he had applied to appoint a legal proxy for the patient and the time interval between the presentation of the law, the registration of the application at the law court chancellery and the sentence of appointment was registered. The study involved 169 demented patients. Seventy-eight patients (46.2%) applied to appoint a legal proxy. These subjects were usually younger, had been suffering from dementia for a longer time, had less than two children and made more use of memantine. The mean interval time between the presentation of the law and the patients' application to the law court chancellery was two months. The mean interval time between the patient's application to

  7. Participants' use of enacted scenes in research interviews: A method for reflexive analysis in health and social care.

    PubMed

    James, Deborah Michelle; Pilnick, Alison; Hall, Alex; Collins, Luke

    2016-02-01

    In our study of a workforce intervention within a health and social care context we found that participants who took part in longitudinal research interviews were commonly enacting scenes from their work during one-to-one interviews. Scenes were defined as portions of the interviews in which participants directly quoted the speech of at least two actors. Our analysis in this paper focuses on these enacted scenes, and compares the content of them before and after the intervention. We found that, whilst the tensions between consistency and change, and change management, were common topics for scene enactment in both pre and post-intervention data, following the intervention participants were much more likely to present themselves as active agents in that change. Post-intervention enacted scenes also showed participants' reports of taking a service user perspective, and a focus on their interactions with service users that had been absent from pre-intervention data. In addition, descriptions of positive feeling and emotions were present in the post-intervention enacted scenes. We suggest that this analysis confirms the importance of enacted scenes as an analytic resource, and that this importance goes beyond their utility in identifying the impact of this specific intervention. Given the congruence between the themes prominent in enacted scenes, and those which emerged from a more extensive qualitative analysis of these data, we argue that enacted scenes may also be of wider methodological importance. The possibility of using scene enactment as an approach to the validation of inductive analysis in health and social care settings could provide a useful methodological resource in settings where longitudinal ethnographic observation of frontline care staff is impossible or impractical.

  8. The Importance of Long-Term Social Research in Enabling Participation and Developing Engagement Strategies for New Dengue Control Technologies

    PubMed Central

    McNaughton, Darlene

    2012-01-01

    Background In recent years, new strategies aimed at reducing the capacity of mosquito vectors to transmit dengue fever have emerged. As with earlier control methods, they will have to be employed in a diverse range of communities across the globe and into the main settings for disease transmission, the homes, businesses and public buildings of residents in dengue-affected areas. However, these strategies are notably different from previous methods and draw on technologies that are not without controversy. Public engagement and authorization are critical to the future success of these programs. Methodology/Principal Findings This paper reports on an Australian case study where long-term social research was used to enable participation and the design of an engagement strategy tailored specifically to the sociopolitical setting of a potential trial release site of Wolbachia-infected Aedes aegytpi mosquitoes. Central themes of the social research, methods used and conclusions drawn are briefly described. Results indicate that different communities are likely to have divergent expectations, concerns and cultural sensibilities with regard to participation, engagement and authorization. Conclusions/Significance The findings show that a range of issues need to be understood and taken into account to enable sensitive, ethical and effective engagement when seeking public support for new dengue control methods. PMID:22953011

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

    NASA Astrophysics Data System (ADS)

    Buskey, E. J.; Erdner, D.

    2011-12-01

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

  10. Conducting Community Research in Rural China -Addressing the Methodological Challenges of Recruiting Participants in Rapidly Changing Social Environments.

    PubMed

    Dai, Jing; Chiu, Helen F K; Hou, Zai-Jin; Caine, Eric D

    2012-06-01

    BACKGROUND: The paper addressed a unique challenge for public health and community research in rural China, i.e., the very large percentage of young adults that comprises a highly mobile working population that has been an essential component of the country's economic transformation. Fluid local demographic patterns potentially have a substantial impact on sample representativeness and data validity. METHODS: This report is based upon a cross sectional survey with face-to-face interviews of residents aged 16-34 years in rural communities of Mianyang, Sichuan Province, China. Two waves of fieldwork and other strategies were adopted in response to recruitment challenges. RESULTS: 1654 of 3008 potential participants took part in the study; this constituted 98% of those individuals approached and 55% of the persons enumerated in the local household registration system (hukou). Analyses revealed substantial differences among those who were interviewed during September and October 2005, versus those seen during the Chinese Lunar New Year of 2006 when many migrant workers and students returned to their homes. Both groups together differed from those who were unavailable during either recruiting episode. DISCUSSION AND CONCLUSIONS: We discuss potential responses to associated methodological challenges, including, (1) permanent hukou mismatches; (2) temporary hukou mismatches; (3) difficulties faced by potential participants to fully understand the purpose of research, the informed consent process, and specific research questions; and (4) appreciation of the importance of local social networks, as they pertain in particular to rural China. These findings underscore that there may be a need to make "on-the-ground" adjustments to varying local conditions to maximize sample representativeness and data validity.

  11. Why Do Rape Survivors Volunteer for Face-to-Face Interviews? A Meta-Study of Victims' Reasons for and Concerns about Research Participation

    ERIC Educational Resources Information Center

    Campbell, Rebecca; Adams, Adrienne E.

    2009-01-01

    There is growing interest in understanding how different research methods are perceived by victims of violence and what survivors will reveal to researchers (termed "meta-research" or "meta-studies"). The purpose of this project was to conduct a qualitative meta-study on why rape survivors chose to participate in community-based, face-to-face…

  12. Multi-criteria decision making in flood risk management: research progress and the challenge of handling uncertainty and stakeholder participation

    NASA Astrophysics Data System (ADS)

    Madruga de Brito, Mariana; Evers, Mariele

    2016-04-01

    Multi-Criteria Decision Making (MCDM) methods have received much attention from researchers and practitioners for solving flood risk management problems in the last decades due to its capacity to deal with multiple criteria, conflicting objectives as well as the knowledge arising from the participation of several actors. In order to consolidate recent research conducted in this area, this study presents a state-of-the-art literature review of MCDM applications to flood risk management, seeking to provide a better understanding of the current status of how participatory MCDM is being conducted and the way uncertainties are included in the decision-making process. Totally, 128 peer-reviewed papers published from 1995 to June 2015 in 72 different journals were systematically analyzed. Results indicated that the number of flood MCDM publications has exponentially grown during this period, with over 82% of all papers published since 2009. A wide range of application areas was identified, with most papers focusing on ranking alternatives for flood mitigation (22.78% of the total) followed by risk (21.11%) and vulnerability assessment (15%). The Analytical Hierarchy Process (AHP) was the most popular MCDM method (42.72%) followed by Technique for Order Preference by Similarity to an Ideal Solution (TOPSIS) (13.33%) and Weighted Sum Method (WSM) (12.73%). Although significant improvements have been made over the last decades, shortcomings remain in handling the uncertainty. Only eight papers (6.25%) have conducted uncertainty analysis, suggesting that a general procedure for performing it in MCDM does not yet exist. Researchers have applied the Monte Carlo simulation, Taylor's series error propagation method or assessed the uncertainty in qualitative ways, by describing its main sources or analyzing the stakeholders' degree of confidence. In addition, 35 articles (27.34%) have performed a sensitivity analysis of the criteria weights. Three distinct approaches were

  13. Underrepresented Minority High School and College Students Report STEM-Pipeline Sustaining Gains After Participating in the Loma Linda University Summer Health Disparities Research Program

    PubMed Central

    Salto, Lorena M.; Riggs, Matt L.; Delgado De Leon, Daisy; Casiano, Carlos A.; De Leon, Marino

    2014-01-01

    An urgent need exists for graduate and professional schools to establish evidence-based STEM (science, technology, engineering, and math) pipeline programs to increase the diversity of the biomedical workforce. An untapped yet promising pool of willing participants are capable high school students that have a strong STEM interest but may lack the skills and the guided mentoring needed to succeed in competitive STEM fields. This study evaluates and compares the impact of the Loma Linda University (LLU) Summer Health Disparities Research Program on high school (HS) and undergraduate (UG) student participants. The primary focus of our summer research experience (SRE) is to enhance the research self-efficacy of the participants by actively involving them in a research project and by providing the students with personalized mentoring and targeted career development activities, including education on health disparities. The results of our study show that our SRE influenced terminal degree intent and increased participant willingness to incorporate research into future careers for both the HS and the UG groups. The quantitative data shows that both the HS and the UG participants reported large, statistically significant gains in self-assessed research skills and research self-efficacy. Both participant groups identified the hands-on research and the mentor experience as the most valuable aspects of our SRE and reported increased science skills, increased confidence in science ability and increased motivation and affirmation to pursue a science career. The follow-up data indicates that 67% of the HS participants and 90% of the UG participants graduated from college with a STEM degree; for those who enrolled in graduate education, 61% and 43% enrolled in LLU, respectively. We conclude that structured SREs can be highly effective STEM strengthening interventions for both UG and HS students and may be a way to measurably increase institutional and biomedical workforce

  14. Underrepresented minority high school and college students report STEM-pipeline sustaining gains after participating in the Loma Linda University Summer Health Disparities Research Program.

    PubMed

    Salto, Lorena M; Riggs, Matt L; Delgado De Leon, Daisy; Casiano, Carlos A; De Leon, Marino

    2014-01-01

    An urgent need exists for graduate and professional schools to establish evidence-based STEM (science, technology, engineering, and math) pipeline programs to increase the diversity of the biomedical workforce. An untapped yet promising pool of willing participants are capable high school students that have a strong STEM interest but may lack the skills and the guided mentoring needed to succeed in competitive STEM fields. This study evaluates and compares the impact of the Loma Linda University (LLU) Summer Health Disparities Research Program on high school (HS) and undergraduate (UG) student participants. The primary focus of our summer research experience (SRE) is to enhance the research self-efficacy of the participants by actively involving them in a research project and by providing the students with personalized mentoring and targeted career development activities, including education on health disparities. The results of our study show that our SRE influenced terminal degree intent and increased participant willingness to incorporate research into future careers for both the HS and the UG groups. The quantitative data shows that both the HS and the UG participants reported large, statistically significant gains in self-assessed research skills and research self-efficacy. Both participant groups identified the hands-on research and the mentor experience as the most valuable aspects of our SRE and reported increased science skills, increased confidence in science ability and increased motivation and affirmation to pursue a science career. The follow-up data indicates that 67% of the HS participants and 90% of the UG participants graduated from college with a STEM degree; for those who enrolled in graduate education, 61% and 43% enrolled in LLU, respectively. We conclude that structured SREs can be highly effective STEM strengthening interventions for both UG and HS students and may be a way to measurably increase institutional and biomedical workforce

  15. Recruiting African American Churches to Participate in Research: The Learning and Developing Individual Exercise Skills for a Better Life Study

    PubMed Central

    Whitt-Glover, Melicia C.; Borden, Shanice L.; Alexander, Dayna S.; Kennedy, Betty M.; Goldmon, Moses V.

    2016-01-01

    Physical activity among African Americans (AA) is low; effective intervention strategies are needed. Community-based settings are useful for delivering health-related interventions in racial/ethnic minority communities. This article describes strategies used to recruit churches for participation in a 22-month intervention designed to increase physical activity levels in AA women. Initial recruitment efforts, led by AA study staff, included direct mailers, phone calls, and in-person meetings with church representatives. After 10 months, only five churches were enrolled. Seven community members with existing partnerships/contacts in the faith community were subsequently hired and an additional 26 churches were enrolled within 6 months. Overall response rate was 45%, and churches required 3.5 ± 3.0 months of multiple contacts prior to enrollment. The main primary contacts within churches were individuals with personal interest in the program and pastors. Prior relationship between the research team and churches did not appear to influence church enrollment as much as community member recruiters. The current study identifies several potential strategies that may be useful for increasing success in efforts to recruit AA churches into studies. Additional research is warranted that tests and compares a variety of recruitment strategies to determine the most successful strategies for recruitment in different populations. PMID:26724311

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

    NASA Astrophysics Data System (ADS)

    Freed, R.

    2015-12-01

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

  17. A Systematic Review of Consent Procedures, Participation Rates, and Main Findings of Health-Related Research in Alternative High Schools From 2010 to 2015.

    PubMed

    Johnson, Karen E; Morris, Marian; Rew, Lynn; Simonton, Amanda J

    2016-02-01

    There is a well-established link between educational attainment and health. Alternative high schools (AHSs) serve students who are at risk for school dropout. Health-related research conducted in AHSs has been sparse. Achieving high participation rates is critical to producing generalizable results and can be challenging in research with adolescents for reasons such as using active consent. These challenges become greater when working with vulnerable populations of adolescents. In this systematic review, we examined health-related studies conducted in AHSs between 2010 and 2015. Results indicated that (1) health-related research in AHSs has increased over the past 5 years, (2) AHS students continue to experience significant disparities, (3) active consent is commonly used with AHS students, (4) 42% of studies reported participation rates or provided enough information to calculate participation rates, and (5) school nurses are missing from health-related research conducted in AHSs. Implications for future research and school nursing are discussed.

  18. Factors Related to the Learning of Participants in the Ohio Pesticide Private Applicators Instructional Program. Summary of Research 77.

    ERIC Educational Resources Information Center

    Okoro, Daniel; Miller, Larry E.

    A study determined the learning (achievement) of 151 participants in the 1992-93 Ohio pesticide applicator training (PAT) program. It assessed the intended level of cognition of instruction and the actual cognition level achieved by the participants. All participants were pre- and posttested using questions adapted from Hall and Prochaska (1991),…

  19. "It's for a good cause, isn't it?" - Exploring views of South African TB research participants on sample storage and re-use

    PubMed Central

    2012-01-01

    Background The banking of biological samples raises a number of ethical issues in relation to the storage, export and re-use of samples. Whilst there is a growing body of literature exploring participant perspectives in North America and Europe, hardly any studies have been reported in Africa. This is problematic in particular in light of the growing amount of research taking place in Africa, and with the rise of biobanking practices also on the African continent. In order to investigate the perspectives of African research participants, we conducted a study with research participants in a TB study in the Western Cape, South Africa. Methods Semi-structured interviews were conducted using an interview guide which drew on the most prominent themes expressed in current literature on sample storage, re-use and exportation. Interviews were conducted in Afrikaans and subsequently translated into English by the same interviewer. Interviews were transcribed verbatim and analysed qualitatively. Results The results of our study indicate that the majority of participants were supportive of giving one-time consent to the storage and re-use of their samples. The concept of research being for a “good cause” was a central prerequisite. Additionally, a significant minority requested that they be re-contacted if a future use was not stipulated on the original consent. There was also considerable variation in how participants understood the concept of a ‘good cause’, with participants describing three distinct categories of research, of which two were generally thought to constitute ‘good cause’ research. Research that was for-profit was considered to fall outside the spectrum of ‘good cause’ research. Participants displayed confidence in the abilities of the researchers to make future decisions regarding sample use, but seemed unaware of the role of ethics committees in either this process or more generally. Conclusions Participants expressed a wide and complex

  20. Women in medical physics: a preliminary analysis of workforce and research participation in Australia and New Zealand.

    PubMed

    Crowe, S B; Kairn, T

    2016-06-01

    Although the participation of women within the science, technology, engineering and mathematics workforces has been widely discussed over recent decades, the recording and analysis of data pertaining to the gender balance of medical physicists in Australia and New Zealand remains rare. This study aimed to provide a baseline for evaluating future changes in workforce demographics by quantifying the current level of representation of women in the Australasian medical physics workforce and providing an indication of the relative contribution made by those women to the local research environment. The 2015 Australasian College of Physical Scientists and Engineers in Medicine (ACPSEM) member directory and list of chief physicists at ACPSEM-accredited radiation oncology and diagnostic imaging training centres were interrogated to identify the gender balance of medical physicists working in Australia and New Zealand. A specific investigation of the employment levels of all medical physicists in Queensland was undertaken to provide an example of the gender balance at different levels of seniority in one large Australian state. Lists of authors of medical physics presentations at ACPSEM annual conferences and authors of publications in the ACPSEM's official journal, were used to provide an indication of the gender balance in published research within Australia and New Zealand. The results of this study showed that women currently constitute approximately 28 % of the medical physics workforce in Australia and New Zealand, distributed disproportionally in junior roles; there is a decrease in female participation in the field with increasing levels of seniority, which is particularly apparent in the stratified data obtained for the Queensland workforce. Comparisons with older data suggest that this situation has changed little since 2008. Examination of ACPSEM conference presentations suggested that there are similar disparities between the gender-balance of proffered and

  1. The ‘empty choice’: A sociological examination of choosing medical research participation in resource-limited Sub-Saharan Africa

    PubMed Central

    Kingori, Patricia

    2015-01-01

    This article explores the views of frontline research staff in different Sub-Saharan African contexts on the notion of choice in biomedical research. It argues that the current emphasis on individual choice, in the conduct of biomedical research, ignores significant structural and contextual factors in resource-limited settings. These factors severely constrain individual options and often make biomedical research enrolment the most amenable route to healthcare for the world’s poorest. From the position of frontline research staff, local contextual factors and structural issues narrowly frame the parameters within which many prospective participants are asked to choose, to such an extent that individuals are effectively presented with an ‘empty choice’. The article draws on ethnographic and interview data and insights gained through graphic elucidation techniques. It demonstrates that for frontline research staff, macro-level structural factors and their bearing on everyday realities shape what choice in biomedical research participation means in practice. PMID:27182072

  2. Feasibility Test of a Community-Relevant Intervention Designed to Promote African American Participation in Translational, Breast Cancer Disparities Research: Know About Health Options for Women (Know HOW).

    PubMed

    Yeary, Karen Hye-Cheon Kim; Moore, Page; Turner, Jerome; Dawson, Leah; Heo, Seongkum; Greene, Paul

    2016-04-16

    There are marked racial differences in breast cancer, the second leading cause of death among US women. Understanding the causes of these differences is essential to eliminate breast cancer inequities. More prevalent in African American than in Caucasian women, metabolic syndrome has been associated with breast cancer outcomes. Further research is needed to understand metabolic syndrome's role in breast cancer disparities, thus novel strategies to increase minority participation in research are important. We embedded two approaches (comprehensive, focused) to increase African American participation in breast cancer research in a state-wide service program and pilot tested both approaches in rural African American women. We conducted three comprehensive and three focused outreach programs (n = 48) and assessed research participation through consent and actual provision of data for four types of data: survey, anthropometric, blood, and mammography records. The majority of participants provided written consent for all data collection procedures (96 % survey; 92 % anthropometric; 94 %, blood; 100 % mammography). There were no between group differences in consent rates. There was variation in the overall proportion of participants who provided data (96 % survey; 92 % anthropometric; 73 % blood; 40 % mammography). Women in the comprehensive approach were less likely to return for a scheduled mammogram than women in the focused approach (19 % vs 64 %, p = 0.0236). Both outreach programs promoted African American engagement in research. Differences in the provision of data by type may have been due to participant burden (i.e., time required to provide data). Study designs that embed research in service programs have promise to increase minority research participation.

  3. 'Silent voices' in health services research: ethnicity and socioeconomic variation in participation in studies of quality of life in childhood visual disability.

    PubMed

    Tadic, Valerie; Hamblion, Esther Louise; Keeley, Sarah; Cumberland, Phillippa; Lewando Hundt, Gillian; Rahi, Jugnoo Sangeeta

    2010-04-01

    Purpose. To investigate patterns of participation of visually impaired (VI) children and their families in health services research. Methods. The authors compared clinical and sociodemographic characteristics of children and their families who participated with those who did not participate in two studies of quality of life (QoL) of VI children. In Study 1, the authors interviewed VI children and adolescents, aged 10 to 15 years, about their vision-related quality of life (VRQoL) as the first phase of a program to develop a VRQoL instrument for this population. One hundred seven children with visual impairment (visual acuity in the better eye LogMar worse than 0.51) were invited to participate in the interviews. Study 2 investigated health-related quality of life (HRQoL) of VI children using an existing generic instrument, administered in a postal survey. 151 VI children and adolescents, aged 2 to 16 years, with hereditary retinal disorders were invited to participate in the survey. Results. The overall participation level was below 50%. In both studies, participants from white ethnic and more affluent socioeconomic backgrounds were overrepresented. Participation did not vary by age, sex, or clinical characteristics. Conclusions. The authors suggest that there are barriers to participation in child- and family-centered research on childhood visual disability for children from socioeconomically deprived or ethnic minority groups. They urge assessment and reporting of participation patterns in further health services research on childhood visual disability. Failure to recognize that there are "silent voices" is likely to have important implications for equitable and appropriate service planning and provision for VI children.

  4. A Systematic Review of Consent Procedures, Participation Rates, and Main Findings of Health-Related Research in Alternative High Schools from 2010 to 2015

    ERIC Educational Resources Information Center

    Johnson, Karen E.; Morris, Marian; Rew, Lynn; Simonton, Amanda J.

    2016-01-01

    There is a well-established link between educational attainment and health. Alternative high schools (AHSs) serve students who are at risk for school dropout. Health-related research conducted in AHSs has been sparse. Achieving high participation rates is critical to producing generalizable results and can be challenging in research with…

  5. The Relationship of Researcher and Participant in Qualitative Inquiry: From "Self and Other" Binaries to the Poststructural Feminist Perspective of Subjectivity

    ERIC Educational Resources Information Center

    Varga-Dobai, Kinga

    2012-01-01

    Whether approached from a positivist perspective or a more comprehensive postpositivist theoretical and philosophical grounding, the relationship between researcher and participant entails the strong binary opposition of the I-Thou (Buber, 1971) or Self and Other (Bhabha, 2004) within which I or Self is associated with the researcher and Thou or…

  6. Public Participation in Scientific Research: Defining the Field and Assessing Its Potential for Informal Science Education. A CAISE Inquiry Group Report

    ERIC Educational Resources Information Center

    Bonney, Rick; Ballard, Heidi; Jordan, Rebecca; McCallie, Ellen; Phillips, Tina; Shirk, Jennifer; Wilderman, Candie C.

    2009-01-01

    Despite the growing number of collaborations between volunteers and professional scientists, research efforts investigating the impacts of such collaborations, which we have termed Public Participation in Scientific Research (PPSR), have been very limited. Examples of PPSR projects include citizen science, volunteer monitoring, and participatory…

  7. A Qualitative Study of How Cultural Capital Affects Low-Income Undergraduate Students' Decisions to Participate in Highly Ranked Research Institutions in the State of Texas

    ERIC Educational Resources Information Center

    Walker, Gloria Jean

    2014-01-01

    The purpose of this basic qualitative study was to understand how cultural capital affected low-income undergraduate students' decisions to participate in higher education at highly ranked research institutions in the State of Texas. To fulfill this purpose, four research questions were formulated as the foundation for this investigation: a/ What…

  8. "So Often They Do Not Get Recruited": Exploring Service User and Staff Perspectives on Participation in Learning Disability Research and the Barriers That Inhibit It

    ERIC Educational Resources Information Center

    Crook, Bradley; Tomlins, Rose; Bancroft, Ann; Ogi, Laura

    2016-01-01

    The importance of making research participation accessible for people with learning disabilities is emphasised in government and NHS research strategies. This evaluation explored the realities of this goal from the perceptions of people with learning disabilities and clinicians within an NHS learning disability service. People with learning…

  9. REGIONAL DIFFERENCES IN ATTITUDES THAT MAY AFFECT HEALTH BEHAVIOR AND WILLINGNESS TO PARTICIPATE IN RESEARCH AMONG BLACK SEVENTH-DAY ADVENTISTS

    PubMed Central

    Lampkin, Andy; Yancey, Antronette; Wilson, Colwick; Fraser, Gary E.

    2012-01-01

    Objective To identify the attitudes and perceptions of Black Seventh-day Adventists regarding health research and the healthcare system in two regions of the United States. Design Church members were selected from those who participated in the Adventist Health Study-2 (AHS-2) and those who chose not to participate. Participants were selected from two regions of the United States. Setting Participants were interviewed in their churches, in their homes, and in the research study office at Loma Linda University. Interviews were done in the Western and Southern regions of the United States. Participants 384 Black Seventh-day Adventists, aged >30 years. Main Outcome Measures Responses to the structured interviews from those in the Western region were compared to those in the Southern region. Results Those in the Southern region included more elderly subjects; they were more likely to own their home despite earning less; and were more likely to be married. Compared to the Western region participants, we found Southern participants to have greater participation in church activities, greater mistrust of the healthcare system and particular concerns about racial inequalities in care. In contrast, they also reported more positive experiences with their personal healthcare provider than Western participants. Southerners felt that they had greater control over their own health, perhaps in part due to a greater identification with the health teachings of the Adventist church. Conclusions A number of clear differences were found between Black Adventist subjects living in either the Western or Southern regions of the United States. These factors should be considered carefully when planning the promotion for a research study. PMID:20073146

  10. Cognitive Processes of Students Participating in Two Approaches to Technology Education. Research in Engineering and Technology Education

    ERIC Educational Resources Information Center

    Kelley, Todd R.; Hill, Roger B.

    2007-01-01

    The purpose of this study was to better understand cognitive strategies used by high school technology education students who have participated in technology education instruction with an engineering design focus. Specifically, this study evaluated the cognitive strategies of students participating in "Project Lead the Way" curriculum…

  11. Obtaining family consent for participation in Alzheimer’s research in a Cuban-American population: Strategies to overcome the barriers

    PubMed Central

    Williams, Christine L.; Tappen, Ruth; Buscemi, Charles; Rivera, Richard; Lezcano, Jennifer

    2007-01-01

    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

  12. What Non-science Majors Gain from Participating in Authentic Scientific Research: The Results from a Decade-long Assessment Program

    NASA Astrophysics Data System (ADS)

    Wooten, Michelle; Rector, T. A.; Puckett, A. W.; Coble, K. A.

    2013-06-01

    The results of pre- post- analysis of students’ responses to assessments based on their participation in "Research-Based Science Education" (RBSE) curriculum will be presented. Students participating in RBSE curriculum are non-science majors who participate in authentic scientific research as part of laboratory instruction. The results of this study comprise students’ responses from four universities from 2003 - 2013. To gauge changes in students’ perception of the process of scientific research and their confidence in their skills in performing science-oriented tasks, a variety of assessments were used: concept maps (n=130), attitudinal surveys (n=130), journal responses (n =50), and interviews (n=17). Analyses of matching pre- post- responses reveal significant gains in some predicted forms, but not in others. Possible reasons for students’ changes in response, or lack thereof, will be discussed.

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

    PubMed Central

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

    2016-01-01

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

  14. An analysis of scientific self-efficacy as a benefit of summer research participation for underrepresented minorities in science, technology, engineering, and mathematics (STEM) fields

    NASA Astrophysics Data System (ADS)

    Carter, Frances D.

    2011-12-01

    Low participation and performance in science, technology, engineering, and mathematics (STEM) fields by U.S. citizens are widely recognized as major problems with substantial economic, political, and social ramifications. Studies of collegiate interventions designed to broaden participation in STEM fields suggest that participation in undergraduate research is a key program component that enhances such student outcomes as undergraduate GPA, graduation, persistence in a STEM major, and graduate school enrollment. However, little is known about the mechanisms that are responsible for these positive effects. The current study hypothesizes that undergraduate research participation increases scientific self-efficacy and scientific research proficiency. This hypothesis was tested using data obtained from a survey of minority students from several STEM intervention programs that offer undergraduate research opportunities. Students were surveyed both prior to and following the summer of 2010. Factor analysis was used to examine the factor structure of participants' responses on scientific self-efficacy and scientific research proficiency scales. Difference-in-difference analysis was then applied to the resulting factor score differences to estimate the relationship of summer research participation with scientific self-efficacy and scientific research proficiency. Factor analytic results replicate and further validate previous findings of a general scientific self-efficacy construct (Schultz, 2008). While the factor analytic results for the exploratory scientific research proficiency scale suggest that it was also a measureable construct, the factor structure was not generalizable over time. Potential reasons for the lack of generalizability validity for the scientific research proficiency scale are explored and recommendations for emerging scales are provided. Recent restructuring attempts within federal science agencies threaten the future of STEM intervention programs

  15. Uniting postcolonial, discourse, and linguistic theory to explore participation of African Americans in cancer research as an effect of social and historical race relationships.

    PubMed

    Somayaji, Darryl; Cloyes, Kristin Gates

    2014-01-01

    This article uses a historical framework of postcolonialism; discourse analytic concepts (significance, identity, and relationships); and 5 social and cultural linguistic principles of emergence, positionality, indexicality, relationality, and partialness as a theoretical and methodological triangulation approach to data analysis of focus group discussion. Exemplars of focus group data from a study exploring African American participation in research demonstrate the application of this combined framework as a useful tool for analysis. This approach allows for examination of identity and interaction and generates a more rigorous and complete understanding of how individuals use language to construct identity as participants or nonparticipants in research.

  16. eHealth Literacy, Online Help-Seeking Behavior, and Willingness to Participate in mHealth Chronic Disease Research Among African Americans, Florida, 2014–2015

    PubMed Central

    Harville, Cedric

    2016-01-01

    Introduction The high rate of ownership of smartphones among African Americans provides researchers with opportunities to use digital technologies to reduce the prevalence of chronic diseases in this population. This study aimed to assess the association between eHealth literacy (EHL) and access to technology, health information–seeking behavior, and willingness to participate in mHealth (mobile health) research among African Americans. Methods A self-administered questionnaire was completed by 881 African American adults from April 2014 to January 2015 in north central Florida. EHL was assessed by using the eHealth Literacy Scale (eHEALS) with higher scores (range, 8–40) indicating greater perceived skills at using online health information to help solve health problems. Results Overall eHEALS scores ranged from 8 to 40, with a mean of 30.4 (standard deviation, 7.8). The highest score was for the item “I know how to find helpful health resources on the Internet,” and the lowest score was for “I can tell high quality from low quality health resources on the Internet.” Most respondents owned smartphones (71%) and searched online for health information (60%). Most were also willing to participate in health research that used text messages (67%), smartwatches/health tracking devices (62%), and health apps (57%). We found significantly higher eHEALS scores among women, smartphone owners, those who use the Internet to seek health information, and those willing to participate in mHealth research (P < .01 for all). Conclusion Most participants owned smartphones, used the Internet as a source of information, and were willing to participate in mHealth research. Opportunities exist for improving EHL and conducting mHealth research among African Americans to reduce the prevalence of chronic diseases. PMID:27854421

  17. Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the "Resilience in Adolescents and Young Adults With Cancer" Study.

    PubMed

    Rosenberg, Abby R; Bona, Kira; Wharton, Claire M; Bradford, Miranda; Shaffer, Michele L; Wolfe, Joanne; Baker, Kevin Scott

    2016-04-01

    Conducting patient-reported outcomes research with adolescents and young adults (AYAs) is difficult due to low participation rates and high attrition. Forty-seven AYAs with newly diagnosed cancer at two large hospitals were prospectively surveyed at the time of diagnosis and 3-6 and 12-18 months later. A subset participated in 1:1 semistructured interviews. Attrition prompted early study closure at one site. The majority of patients preferred paper-pencil to online surveys. Interview participants were more likely to complete surveys (e.g., 93% vs. 58% completion of 3-6 month surveys, P = 0.02). Engaging patients through qualitative methodologies and using patient-preferred instruments may optimize future research success.

  18. Empirically Based Analysis of Methodological and Ethical Challenges in Research with Children as Participants: The Case of Bullying in Kindergarten

    ERIC Educational Resources Information Center

    Lund, Ingrid; Helgeland, Anne; Kovac, Velibor Bobo

    2016-01-01

    When conducting research with children it is essential to consider not only the data, which have been produced as a result of the research, but also the research process itself. This article represents an attempt to contribute the accumulation of knowledge regarding methodological and ethical issues concerning research with children. The data in…

  19. An Assessment of the NATO Advanced Research Workshop on Environmental Psychology and Its Participants Held in Lisbon, Portugal on 22-26 September, 1986.

    DTIC Science & Technology

    1987-07-10

    Its Participants in II 1 William 1). Crano 004 AUN 0 4 i98sr Approwd, IMr public iclciiwc distrihulion unlimited U.S. Office of Naval Research, London...GSCHEULEApproved for public release; Zb DCLASIFICTIONI WNGRDINGSCHEULEdlstrfbut ion unliimi ted 4. PERFORMING ORGANIZATION REPORT NUMBER(S) 5 MONITORING...Research OIf applild Branch Office, London jONRL 6c. ADDRESS (City, State , and ZIP Code) 7b. ADDRESS (City; State , and ZIPCcde) Box 39 FPO, NY 09510 Ba

  20. No News is Bad News: Characteristics of Adolescents Who Provide Neither Parental Consent nor Refusal for Participation in School-Based Survey Research

    ERIC Educational Resources Information Center

    Unger, Jennifer B.; Gallaher, Peggy; Palmer, Paula H.; Baezconde-Garbanati, Lourdes; Trinidad, Dennis R.; Cen, Steven; Johnson, C. Anderson

    2004-01-01

    Schools offer a convenient setting for research on adolescents. However, obtaining active written parental consent is difficult. In a 6th-grade smoking study, students were recruited with two consent procedures: active consent (parents must provide written consent for their children to participate) and implied consent (children may participate…