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Sample records for research participants undergoing

  1. Children's Participation in Research

    ERIC Educational Resources Information Center

    Brostrom, Stig

    2012-01-01

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

  2. Researching participant recruitment times.

    PubMed

    O'Brien, Rachel; Black, Polly

    2015-11-01

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

  3. Children's Participation Rights in Research

    ERIC Educational Resources Information Center

    Powell, Mary Ann; Smith, Anne B.

    2009-01-01

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

  4. Research participation as a contract.

    PubMed

    Lawson, Craig

    1995-01-01

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

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

    PubMed

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

    2011-12-01

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

  6. Employers' concerns regarding research participation.

    PubMed

    Johnson, Alicia M; Dale, Ann Marie; Strickland, Jaime R; Venditti, Pat; Evanoff, Bradley A

    2008-01-01

    Occupational health research depends on the cooperation and participation of employers. The authors describe employers' reasons for non-participation in a prospective study examining risk factors for carpal tunnel syndrome (CTS) and the usefulness of preplacement, post-offer nerve conduction screening. Companies were contacted to solicit participation. Non-participation explanations were reviewed. Of 73 eligible employers, 58 declined participation (participation rate: 20.5%). Reasons for non-participation included lack of interest (32.8%), liability concerns (awareness of CTS may increase workers' compensation claims) (22.4%), time constraints (19%), lack of direct benefit to the employer (8.6%), and company policy restraints (6.9%). Data from one employer were reviewed to determine whether workers' compensation claims for upper extremity disorders increased as a result of study participation. Claim rates showed no change in trend pre- and post-study inception. Expanding much-needed research to prevent occupational injuries and illnesses requires addressing employers' concerns and promoting research benefits.

  7. 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.

  8. 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.

  9. 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.

  10. 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.

  11. Fathers' and Mothers' Participation in Research.

    ERIC Educational Resources Information Center

    Phares, Vicky

    1995-01-01

    Investigated the participation rates of fathers, as compared to mothers, in research related to parent and older adolescent psychological symptoms, drinking behavior, and perceived competence. Fathers and mothers did not differ in their rates of participation in the research. Additionally, few differences were found between participating and…

  12. 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…

  13. 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…

  14. 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.

  15. 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

  16. 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.

  17. 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…

  18. 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…

  19. 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…

  20. 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…

  1. Promoting the participation of minorities in research.

    PubMed

    Garber, Mandy; Arnold, Robert M

    2006-01-01

    The current policy of the National Institute of Health designed to increase the participation of women and minorities is radically different from previous policies designed to protect minorities from abuses in research studies. The principal arguments to support this policy are twofold: 1) Increased representation of minorities and women in research would increase the generalizability of research data and allow for valid analyses of differences in subpopulations; and 2) being in a clinical research study is advantageous to participants regardless of the final research study results. It remains unclear whether minorities find these arguments compelling. Instead of telling minorities that participation in research is good for them, the research community should focus on understanding what minority communities want from clinical research and then tailoring the message to meet this need. Persuasive arguments to promote long-term increased representation of minorities in clinical research must come from within minority communities.

  2. Children's knowledge and degree of participation in decision making when undergoing a clinical diagnostic procedure.

    PubMed

    Runeson, Ingrid; Mårtenson, Eva; Enskär, Karin

    2007-01-01

    Twenty-three children, (6-11 years, 9 boys and 14 girls), admitted to a pediatric day care department for a planned diagnostic procedure were interviewed with the aim of investigating their level of knowledge regarding a current diagnostic procedure, and the level of participation in discussions and decision making relating to their hospitalization. While the children were being interviewed, their attendant parent completed a questionnaire. The children's level of knowledge was documented and graded. The children's statements and their parents' evaluation of the information given to the child were sorted into groups and compared. The children's descriptions of their participation in discussions and decision-making were assessed and summarized. Finally, the children's and their parents' experiences of the children's anxiety and fear before the hospital visit were compared. The children were undergoing different kinds of diagnostic procedures and they had received information from different people. They were prepared for their admission in different ways, and had participated in discussions and decisions to various degrees. Despite this preparation, it would be safe to state that the participants as a group were not very well informed nor did they participate fully. More knowledge is needed regarding how to prepare each child prior to admission, before, during, and after the hospital visit and which additional factors, e.g., trust and a familiar environment, have influence on the child's experience.

  3. 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

  4. 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…

  5. 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…

  6. 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)

  7. 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.

  8. 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

  9. Why do people participate in epidemiological research?

    PubMed

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

    2015-06-01

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

  10. 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.

  11. Indigenous Participation in VET: Understanding the Research

    ERIC Educational Resources Information Center

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

    2017-01-01

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

  12. Challenges to participation in action research.

    PubMed

    de Toledo, Renata Ferraz; Giatti, Leandro Luiz

    2015-03-01

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

  13. Children's participation in vaccine research: parents' views.

    PubMed

    Jay, Fabienne; Chantler, Tracey; Lees, Amanda; Pollard, Andrew J

    2007-10-01

    Vaccine studies that evaluate the persistence of protection following immunisation require subjects to continue participation in a research protocol over many years. As parents' attitudes and opinions may change over time, and with experience of research, it is important to consider the factors influencing parents' decision-making about their child's continued participation in such prolonged vaccine studies. Parental views about participation of their child in a one-year follow-up vaccine study were explored by means of a self-administered questionnaire. Of the 254 eligible parents, 187 took part (74 per cent). Parents who provided consent were more likely to agree that having a home visit to take blood was very helpful (p=0.005) and that information obtained during the earlier part of the study influenced their decision to take part in a follow-up study (p<0.0001). Parents who did not consent to their child's participation were more likely to report the presence of personal reasons as a variable influencing their decision (p<0.0001). The relationship between study staff and parents is the cornerstone for success in performing studies involving vaccines and children. Provision of clear study information (oral and written) and offering the convenience of home visits are important in retaining participants in paediatric vaccine trials.

  14. 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

  15. 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)

  16. Inappropriate hospital admissions: patient participation in research.

    PubMed

    Glasby, J; Littlechild, R

    Although political interest in reducing the number of inappropriate hospital admissions is mounting, methods for researching the rate of inappropriate admissions have several major limitations. Whereas traditional studies have tended to be predominantly subjective, more recent studies using clinical review instruments also have a number of limitations. Chief among these is the failure to consider the potential input of the individual patient. To illustrate some of the possible benefits of patient participation, this article cites findings from a study in Birmingham, which sought to involve individual older people in a research study into emergency hospital admissions.

  17. 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.

  18. 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

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

    ERIC Educational Resources Information Center

    Franks, Myfanwy

    2011-01-01

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

  20. Students as vital participants in research projects.

    PubMed

    Liddell, Patty W; Heuertz, Rita M

    2011-01-01

    Inclusion of research coursework into a medical technology or clinical laboratory science program is currently viewed as a mark of a good degree program. Examples of this type of coursework are evaluation of scientific papers, techniques of scientific writing, application and performance of statistical analysis and introduction to research ethics (e.g., Institutional Review Board approval process). While many programs have the ability to recruit experienced scientists into research mentorship of medical technology/clinical laboratory science students, it is recognized that not all programs have this ability. It is also recognized that clinical laboratorians are performing critical diagnostic tests and, in this capacity, have the ability to identify research projects that are necessary, evidence-based and timely. It is hereby proposed that clinical laboratorians take advantage of this innate ability and create rich teaching experiences for students by including them in performance of research projects. Because of the fact that students are armed with up-to-date knowledge, have willing and enthusiastic spirits and are highly motivated to learn, they are vital participants in research. The students receive an invaluable active learning experience and possibly a future job; the clinical laboratorians meet and possibly exceed the research and scholarship expectations of their institutions; and the scientific community benefits by the science being shared through publication in scientific journals.

  1. 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.

  2. Participation of healthy volunteers in research projects.

    PubMed

    Macrae, F A; Mackay, I R; Fraser, J R

    1989-03-20

    Research that involves healthy normal volunteers frequently is performed. This article examines ethical guide-lines for the recruitment of healthy volunteers in research projects. Ethical decisions on projects that are based on patient-volunteers or healthy normal volunteers should balance the risk to the volunteer and the collective benefit to the community. For healthy normal volunteers that risk should be minimal or trivial. Investigators should follow recruitment practices that avoid approaches to persons who are dependent upon them in some way, and should carry the day-to-day ethical responsibility even after institutional ethical approval has been granted. Pilot studies and self-experimentation readily can transgress ethical guide-lines. Compensation for mishaps or injuries that occur during research in which there is no question of negligence (for example, an unforeseeable reaction in a phase-1 drug trial) is an unresolved issue which should be addressed by the research community. It is recommended that action be taken to ensure that healthy volunteers who participate in approved research have redress in the rare event of an accident, whether this is a result of negligence, chance or misadventure. Hospitals/institutions or other bodies that sponsor research should extend their insurance to cover specifically such unforeseeable events in which there may be liability, and to have the facility for a payment of beneficence in the case of accidents in which liability cannot be established.

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

    PubMed

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

    2006-12-01

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

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

    PubMed

    Parikh, Yasha; Mason, Maryann; Williams, Karen

    2016-12-01

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

  5. Through the Eyes of the Participant: Making Connections between Researcher and Subject with Participant Viewpoint Ethnography

    ERIC Educational Resources Information Center

    Wilhoit, Elizabeth D.; Kisselburgh, Lorraine G.

    2016-01-01

    In this article, we introduce participant viewpoint ethnography (PVE), a phenomenological video research method that combines reflexive, interview-based data with video capture of actual experiences. In PVE, participants wear a head-mounted camera to record the phenomena of study from their point of view. The researcher and participant then review…

  6. 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,…

  7. 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,…

  8. 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…

  9. Effective dose assessment for participants in the National Lung Screening Trial undergoing posteroanterior chest radiographic examinations.

    PubMed

    Kruger, Randell; Flynn, Michael J; Judy, Phillip F; Cagnon, Christopher H; Seibert, J Anthony

    2013-07-01

    The National Lung Screening Trial (NLST) is a multicenter randomized controlled trial comparing low-dose helical CT with chest radiography in the screening of older current and former heavy smokers for early detection of lung cancer. Recruitment was launched in September 2002 and ended in April 2004, when 53,454 participants had been randomized at 33 screening sites. The objective of this study was to determine the effective radiation dose associated with individual chest radiographic screening examinations. A total of 73,733 chest radiographic examinations were performed with 92 chest imaging systems. The entrance skin air kerma (ESAK) of participants' chest radiographic examinations was estimated and used in this analysis. The effective dose per ESAK for each examination was determined with a Monte Carlo-based program. The examination effective dose was calculated as the product of the examination ESAK and the Monte Carlo estimate of the ratio of effective dose per ESAK. This study showed that the mean effective dose assessed from 66,157 postero-anterior chest examinations was 0.052 mSv. Additional findings were a median effective dose of 0.038 mSv, a 95th percentile value of 0.136 mSv, and a fifth percentile value of 0.013 mSv. The effective dose for participant NLST chest radiographic examinations was determined and is of specific interest in relation to that associated with the previously published NLST low-dose CT examinations conducted during the trial.

  10. Learning from Participants in Field Based Research

    ERIC Educational Resources Information Center

    Francis, Dawn

    2004-01-01

    This paper takes a critically reflective look at field research done in the early career of an academic and in so doing uncovers the dilemmas of a novice researcher that are rarely acknowledged in texts that address qualitative methods. It addresses issues of power in research associations surrounding different paradigms and the ways in which the…

  11. 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.

  12. 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…

  13. 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…

  14. 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.

  15. 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…

  16. 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…

  17. Participation in Supervised Agricultural Experience Programs: A Synthesis of Research.

    ERIC Educational Resources Information Center

    Dyer, James E.; Osborne, Edward W.

    1995-01-01

    A research synthesis found that supervised agricultural experience programs lack definition and focus. Teacher attitudes and expectations strongly influence participation, and many teachers fail to implement it fully, limiting participation. There is a lack of empirical research supporting the benefits of participation. (SK)

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

    PubMed

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

    2010-08-01

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

  19. 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)

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

    PubMed Central

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

    2010-01-01

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

  1. 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.

  2. Researching Educational Praxis: Spectator and Participant Perspectives

    ERIC Educational Resources Information Center

    Kemmis, Stephen

    2012-01-01

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

  3. College Students' Participation in Fundamental Scientific Research

    ERIC Educational Resources Information Center

    Shmuratko, D. V.

    2014-01-01

    Russian university students need to be involved in research as part of their educational experience. An example of how this may be done, and the issues that need to be addressed in such an approach, are provided by the program at Perm State University of Pedagogical Humanities. [This article was translated by Kim Braithwaite.

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

    PubMed Central

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

    2014-01-01

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

  5. 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…

  6. 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…

  7. 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…

  8. 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…

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

    PubMed

    Iltis, Ana S

    2013-06-01

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

  10. 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.

  11. 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. © The Author 2016. Published by Oxford University Press. All rights reserved. For permissions, please email: journals.permissions@oup.com.

  12. 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.

  13. 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.…

  14. 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.…

  15. 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

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

    PubMed

    Tremblay, Mark S; Craig, Cora L

    2009-12-09

    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. 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. 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. 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.

  17. 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.

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

    PubMed

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

    2010-08-01

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

  19. 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

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

    PubMed

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

    2014-01-01

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

  1. 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

  2. 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.

  3. Attitudes and views of the general public towards research participation.

    PubMed

    Burns, K E A; Magyarody, N; Jiang, D; Wald, R

    2013-05-01

    While the challenges of recruitment into clinical trials are well described, little is known about the public's perceptions towards research. We sought to describe the attitudes, beliefs and knowledge of the public towards research and research participation, focusing on clinical trials, contrast these attributes among individuals with different relationships with the healthcare system and to identify predictors of willingness to participate. We conducted a self-administered cross-sectional survey of patients and their significant others in two clinics and two intensive care unit waiting rooms and in three public venues. We analysed responses from 417 respondents (102 and 105 in dialysis and oncology clinics, and 106 in intensive care unit (ICU) waiting rooms, 104 in public locations). While most (68.3%) respondents favoured the use of humans in clinical trials, 53% felt that trial participants always or almost always receive the best quality of care, only 30.4% had participated in clinical research. Approximately 70% felt that subjects are always advised of the risks and benefits of participation, and 30% expressed ambiguity regarding whether participants are informed of their involvement. Oncology and dialysis respondents were the most and least informed regarding research methods and ethics. The perceived risks and benefits associated with clinical circumstances influence research participation decisions and vary with healthcare experiences. We identified six predictors of willingness to participate. Attitudes of the public towards research participation are beleaguered by misconceptions. Stakeholders in clinical research must educate the general public regarding research methods and ethics. © 2011 The Authors; Internal Medicine Journal © 2011 Royal Australasian College of Physicians.

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

    PubMed Central

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

    2011-01-01

    The rapid development of new drugs, therapies, and devices has created a dramatic increase in the number of clinical research studies that highlights the need for greater participation in research by physicians as well as patients. Furthermore, the potential of clinical research is unlikely to be reached without greater participation of physicians in research. Physicians face a variety of barriers with regard to participation in clinical research. These barriers are system-or organization-related as well as research-and physician-related. To encourage physician participation, appropriate organizational and operational infrastructures are needed in health care institutes to support research planning and management. All physicians should receive education and training in the fundamentals of research design and methodology, which need to be incorporated into undergraduate medical education and postgraduate training curricula and then reinforced through continuing medical education. Medical schools need to analyze current practices of teaching–learning and research, and reflect upon possible changes needed to develop a ‘student-focused teaching–learning and research culture’. This article examines the barriers to and benefits of physician participation in clinical research as well as interventions needed to increase their participation, including the specific role of undergraduate medical education. The main challenge is the unwillingness of many physicians and patients to participate in clinical trials. Barriers to participation include lack of time, lack of resources, trial-specific issues, communication difficulties, conflicts between the role of clinician and scientist, inadequate research experience and training for physicians, lack of rewards and recognition for physicians, and sometimes a scientifically uninteresting research question, among others. Strategies to encourage physician participation in clinical research include financial and nonfinancial

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

    PubMed

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

    2012-11-01

    For paediatric medicine to advance, research must be conducted specifically with children. Concern about poor recruitment has led to debate about payments to child research participants. Although concerns about undue influence by such 'compensation' have been expressed, it is useful to determine whether children can relate the time and inconvenience associated with participation to the value of payment offered. This study explores children's ability to determine fair remuneration for research participation, and reviews payments to children participating in research. Forty children were interviewed before outpatient visits at two London Hospitals: Great Ormond Street Children's Hospital and the Whittington Hospital District General Hospital. Children were asked to value their involvement in two hypothetical research scenarios - the first an 'additional blood sample', the second also involving daily oral oil capsules taken for a fortnight before further venesection. Background knowledge about familiarity with money, and experience with hospitalisation was assessed. The mean valuation of involvement in the second scenario (£13.18) was higher than in the first (£2.84) (p<0.001). This higher valuation persisted when children were categorised into groups 'aged 12+' and 'below 12'. Those undergoing a blood test on the day placed a higher valuation on participation in the second scenario (£10.43, £21.67, p=0.044). These children aged 8-16 demonstrated the capacity to discern a fair valuation for participation in medical research. The monetary sums are influenced by the time and inconvenience involved in the research, and by the extent of recent experience with hospital procedures. The authors review current ethical thinking regarding payments to child research participants and suggest that a fair wage model might be an ethically acceptable way to increase participation of children in research.

  6. 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.

  7. 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

  8. 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.

  9. 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…

  10. Bioethical Issues in Providing Financial Incentives to Research Participants

    PubMed Central

    Resnik, David B.

    2015-01-01

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

  11. (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

  12. (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.

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

    ERIC Educational Resources Information Center

    Dodge, Martin; Bogdan, Robert

    1974-01-01

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

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

    PubMed Central

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

    2014-01-01

    Respecting the confidentiality of personal data contributed to genomic studies is an important issue for researchers using genomic sequencing in humans. Although most studies adhere to rules of confidentiality, there are different conceptions of confidentiality and why it is important. The resulting ambiguity obscures what is at stake when making tradeoffs between data protection and other goals in research, such as transparency, reciprocity, and public benefit. Few studies have examined why participants in genomic research care about how their information is used. To explore this topic, we conducted semi-structured phone interviews with 30 participants in two National Institutes of Health research protocols using genomic sequencing. Our results show that research participants value confidentiality as a form of control over information about themselves. To the individuals we interviewed, control was valued as a safeguard against discrimination in a climate of uncertainty about future uses of individual genome data. Attitudes towards data sharing were related to the goals of research and details of participants' personal lives. Expectations of confidentiality, trust in researchers, and a desire to advance science were common reasons for willingness to share identifiable data with investigators. Nearly, all participants were comfortable sharing personal data that had been de-identified. These findings suggest that views about confidentiality and data sharing are highly nuanced and are related to the perceived benefits of joining a research study. PMID:24281371

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

    PubMed

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

    2014-08-01

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

  16. Attitudes to perinatal postmortem: parental views about research participation.

    PubMed

    Breeze, Andrew C G; Statham, Helen; Hackett, Gerald A; Jessop, Flora A; Lees, Christoph C

    2011-06-01

    To study parental attitudes to participating in questionnaire research about perinatal postmortem immediately after late miscarriage, stillbirth and termination for fetal abnormality. Prospective self-completion questionnaire. UK fetal medicine and delivery unit. 35 women and their partners after second or third trimester pregnancy loss, making decisions about having a postmortem. Participants were asked to complete a questionnaire about postmortem decision-making which included questions about their attitudes to taking part in research. Prior to giving full approval for the study, the Research Ethics Committee (REC) requested feedback after 10 questionnaires had been returned. Responses from the first 10 participants were positive about the research and the REC allowed the study to continue. 31 questionnaires were received from parents of 17 babies (49% of those asked; 16 from mothers, 15 from fathers). Of the 22 participants who answered a question about the impact of participating in this research, 73% stated that completing the questionnaire had helped them feel better about the decision whether or not to consent to postmortem and none reported any adverse effect of completing the questionnaire. Additional comments made by 19 participants supported this finding. Research into this sensitive area of perinatal medicine where there is a poor outcome is possible and is indeed well received by many parents. RECs should not automatically take a negative stance towards studies of this type.

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

    NASA Astrophysics Data System (ADS)

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

    2016-12-01

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

  18. Consumer participation: ensuring suicide postvention research counts for end users.

    PubMed

    Wilson, Anne

    2010-02-01

    Primary health-care research is about working with those who have a vested interest in the outcomes of that research, including consumers, service providers and service organizations. This article describes how consumers were included in the research processes of a South Australian study into suicide postvention services, and illustrates important principles to consider when including consumers in research. A concurrent mixed-method approach facilitated the collection of mixed data through the application of questionnaires. The study was conducted in an Australian metropolitan area. Because of media releases, a large number of people rang to enquire and volunteer their participation. From over 200 expressions of interest, 161 individuals participated. The participation of consumers in the research process ensured the findings were relevant for end users. A number of recommendations for the care and support of those bereaved through suicide were developed as a result.

  19. 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.

  20. 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

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

    PubMed

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

    2017-05-01

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

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

    PubMed

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

    2017-05-01

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

  3. 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…

  4. 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…

  5. 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…

  6. 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…

  7. 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…

  8. 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…

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

    PubMed

    Miller, Felicia; Schertzer, Susan

    2014-12-01

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

  10. 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.

  11. 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

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

    ERIC Educational Resources Information Center

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

    2017-01-01

    Background: This article presents the results of evaluating a research training programme aimed at developing the skills of people with intellectual disabilities to actively participate in inclusive research. Methods: The present authors opted for a responsive approach to evaluation, using a combination of interviews, questionnaires and focus…

  13. 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.

  14. Conceptual, holistic, and pragmatic considerations for interviewing research participants.

    PubMed

    Gardner, Marcia R

    2010-01-01

    Interviews are commonly used as data collection method in many types of studies. Interviewers and researchers may be challenged to take a holistic view of the interviewing process and to acknowledge participants' perspectives and experiences, understand the implications of dialogue between interviewers and participants, guide data collection to address research questions and aims of a study, and ensure that high-quality data is collected for analysis. This article addresses the need to integrate a holistic perspective into data collection and reviews general and specific interviewing considerations, including assessment and conceptualization of potential research vulnerability of participants, factors that may influence the quality of data collected through interviews, interviewing strategies, interview facilitation, and specific strategies to acknowledge a specialized population in terms of vulnerability, dialogue, power, and study rigor. Data and exemplars from a grounded theory study of mothers of medically fragile infants are used to illustrate some of the challenges inherent in the use of interviews for data collection.

  15. 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.

  16. Paying research participants: a study of current practices in Australia.

    PubMed

    Fry, C L; Ritter, A; Baldwin, S; Bowen, K J; Gardiner, P; Holt, T; Jenkinson, R; Johnston, J

    2005-09-01

    To examine current research payment practices and to inform development of clearer guidelines for researchers and ethics committees. Exploratory email based questionnaire study of current research participant reimbursement practices. A diverse sample of organisations and individuals were targeted. Australia. Contacts in 84 key research organisations and select electronic listservers across Australia. A total of 100 completed questionnaires were received with representations from a variety of research areas (for example, market, alcohol and drug, medical, pharmaceutical and social research). Open-ended and fixed alternative questions about type of research agency; type of research; type of population under study; whether payment is standard; amounts and mechanisms of payment; factors taken into account when deciding on payment practices; and whether payment policies exist. Reimbursement practice is highly variable. Where it occurs (most commonly for drug dependent rather than health professional or general population samples) it is largely monetary and is for time and out-of-pocket expenses. Ethics committees were reported to be often involved in decision making around reimbursement. Research subject payment practices vary in Australia. Researchers who do provide payments to research participants generally do so without written policy and procedures. Ethics committees have an important role in developing guidelines in this area. Specific guidelines are needed considering existing local policies and procedures; payment models and their application in diverse settings; case study examples of types and levels of reimbursement; applied definitions of incentive and inducement; and the rationale for diverse payment practices in different settings.

  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. Schools as Sites for Recruiting Participants and Implementing Research.

    PubMed

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

    2017-01-01

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

  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. Money for research participation: does in jeopardize informed consent?

    PubMed

    Grady, C

    2001-01-01

    Some are concerned about the possibility that offering money for research participation can constitute coercion or undue influence capable of distorting the judgment of potential research subjects and compromising the voluntariness of their informed consent. The author recognizes that more often than not there are multiple influences leading to decisions, including decisions about research participation. The concept of undue influence is explored, as well as the question of whether or not there is something uniquely distorting about money as opposed to a chance for treatment or medical care. An amount of money that is not excessive and is calculated on the basis of time or contribution may, rather than constitute an undue inducement, be an indication of respect for the time and contribution that research subjects make.

  1. Paying research participants: a study of current practices in Australia

    PubMed Central

    Fry, C; Ritter, A; Baldwin, S; Bowen, K; Gardiner, P; Holt, T; Jenkinson, R; Johnston, J

    2005-01-01

    Objective: To examine current research payment practices and to inform development of clearer guidelines for researchers and ethics committees. Design: Exploratory email based questionnaire study of current research participant reimbursement practices. A diverse sample of organisations and individuals were targeted. Setting: Australia. Participants: Contacts in 84 key research organisations and select electronic listservers across Australia. A total of 100 completed questionnaires were received with representations from a variety of research areas (for example, market, alcohol and drug, medical, pharmaceutical and social research). Main measurements: Open-ended and fixed alternative questions about type of research agency; type of research; type of population under study; whether payment is standard; amounts and mechanisms of payment; factors taken into account when deciding on payment practices; and whether payment policies exist. Results: Reimbursement practice is highly variable. Where it occurs (most commonly for drug dependent rather than health professional or general population samples) it is largely monetary and is for time and out-of-pocket expenses. Ethics committees were reported to be often involved in decision making around reimbursement. Conclusions: Research subject payment practices vary in Australia. Researchers who do provide payments to research participants generally do so without written policy and procedures. Ethics committees have an important role in developing guidelines in this area. Specific guidelines are needed considering existing local policies and procedures; payment models and their application in diverse settings; case study examples of types and levels of reimbursement; applied definitions of incentive and inducement; and the rationale for diverse payment practices in different settings. PMID:16131558

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

    PubMed

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

    2016-01-29

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

  3. [Strategies to recruit immigrant women to participate in qualitative research].

    PubMed

    Pons-Vigués, Mariona; Puigpinós, Rosa; Rodríguez, Dolors; Fernández de Sanmamed, M José

    2009-12-01

    The present article aims to describe the process of selecting and recruiting women from distinct sociocultural backgrounds who participated in a qualitative research project and to outline the difficulties encountered according to the women's origin. Research was carried out in Barcelona from 2007 to 2008 to identify how culture influences participation in a breast cancer early detection program. The study population consisted of native women and immigrant women from developing countries aged 40 to 69 years old resident in Barcelona. Participants were recruited through multiple strategies: key informants, cultural mediators, healthcare professionals, associations, religious institutions, the media, posters, adult education and language schools, and the population census. The recruitment process cannot be confined to a single source and associations, religion institutions and cultural mediators are the most effective resources.

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

    PubMed

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

    2017-04-01

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

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

    ERIC Educational Resources Information Center

    Jung, Charles; And Others

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

  6. 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…

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

    PubMed

    Adamowicz, Sarah J; Steinke, Dirk

    2015-12-01

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

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

    ERIC Educational Resources Information Center

    Herrmann, Andrea W.

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

  9. 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…

  10. 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…

  11. 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…

  12. 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…

  13. 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…

  14. 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…

  15. 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…

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

    ERIC Educational Resources Information Center

    Haywood, Benjamin K.

    2014-01-01

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

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

    PubMed

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

    2006-01-01

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

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

    PubMed

    Hutchinson, Anastasia; Rubinfeld, Abe R

    2008-08-18

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

  19. Research participant interest in primary, secondary and incidental genomic findings

    PubMed Central

    Loud, Jennifer T.; Bremer, Renee C.; Mai, Phuong L.; Peters, June A.; Giri, Neelam; Stewart, Douglas R.; Greene, Mark H.; Alter, Blanche P.; Savage, Sharon A.

    2016-01-01

    Purpose To define the frequency with which adult research participants consent to be offered clinically-validated research genetic test results (RR) and incidental findings (IF). Methods Consents were obtained from 506 adults enrolled in one of three studies within NCI’s Clinical Genetics Branch’s Familial Cancer Research Program. A cross-sectional analysis was performed on the choices indicated on study consents regarding receipt of RR and IF. Results Ninety-seven percent opted to receive RR and IF. Participants who declined (N=16) included: 2 cancer survivors who were mutation positive (1=RR and 1=both), 8 who knew their primary mutation status (3=RR; 4=IF; 1= both), 3 non-bloodline relatives (1=RR; 2=both), 1 untested but with the syndromic phenotype (1=IF), and 2 parents of an affected child (2=both). We speculate that these individuals either already had sufficient information, were not prepared to learn more, or felt that the information wouldn’t change their personal healthcare decision-making. Conclusions Adult research participants from families at high genetic risk of cancer overwhelmingly indicated their preference to receive both RR and IF. Future research will seek to identify the reasons for declining RR and IF and to study the impact of receipt of RR and IF on personal medical decision-making. PMID:27101135

  20. Why participating in (certain) scientific research is a moral duty.

    PubMed

    Stjernschantz Forsberg, Joanna; Hansson, Mats G; Eriksson, Stefan

    2014-05-01

    Our starting point in this article is the debate between John Harris and Iain Brassington on whether or not there is a duty to take part in scientific research. We consider the arguments that have been put forward based on fairness and a duty to rescue, and suggest an alternative justification grounded in a hypothetical agreement: that is, because effective healthcare cannot be taken for granted, but requires continuous medical research, and nobody knows what kind of healthcare they will need, participating in research should be viewed from the perspective of a social contract, based on our mutual need for medical advances.

  1. 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.

  2. 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. Copyright © 2012 Elsevier Ltd. All rights reserved.

  3. Propofol vs pentobarbital for sedation of children undergoing magnetic resonance imaging: results from the Pediatric Sedation Research Consortium.

    PubMed

    Mallory, Michael D; Baxter, Amy L; Kost, Susanne I

    2009-06-01

    Pentobarbital and propofol are commonly used to sedate children undergoing magnetic resonance imaging (MRI). The Pediatric Sedation Research Consortium (PSRC) was created in 2003 to improve pediatric sedation process and outcomes. To use PSRC records to compare the effectiveness, efficiency and adverse events of propofol vs pentobarbital for sedation of children undergoing MRI. Pediatric Sedation Research Consortium records of children aged 6 months to 6 years who were primarily sedated with either i.v. pentobarbital or propofol were included. Participating PSRC investigators obtained institutional review board approval before data collection. Of 11 846 sedations for MRI, 7079 met inclusion criteria (propofol: n = 5072; pentobarbital: n = 2007). Demographic details were similar between the two groups. Ideal sedation was produced in 96.45% of the pentobarbital group and in 96.8% of the propofol group (P = 0.478), but pentobarbital was more likely to result in poor sedation cancelling the procedure (OR 5.88; CI 2.24, 15.40). Propofol resulted in physiologic changes more frequently than did pentobarbital (OR 5.69; CI 1.35, 23.97). Pentobarbital was associated with prolonged recovery (OR 16.82; CI 4.98, 56.8), unplanned admission (OR 5.60; CI 1.02, 30.82), vomiting (OR 36.76; CI 4.84, 279.2) and allergic complication (OR 9.15; CI 1.02, 82.34). The incidence of airway complications was not significantly different between the two. The median recovery time for patients receiving propofol was 30 min, whereas for pentobarbital it was 75 min (P < 0.001). Among institutions contributing data to the PSRC, it is found that propofol provides more efficient and effective sedation than pentobarbital for children undergoing MRI. Although apnea occurred with a greater frequency in patients who received propofol, the rate of apnea and airway complications for propofol was not statistically different from that seen in patients who received pentobarbital.

  4. 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.

  5. 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.

  6. [Clinical research and prisoners: coercion and grounds to participate].

    PubMed

    García-Guerrero, Julio; Vera-Remartínez, Enrique J

    2012-01-01

    To assess the coercion perceived, the quality of the information, and the reasons that lead prisoners to participate in clinical research. Descriptive and multicenter study. Information was gathered on the social, demographic and penitentiary characteristics, perceived coercion, kind of information received and reasons that lead prisoners to take part in research. Both univariate and bivariate analyses were performed. Quantitative variables are expressed as mean or median, and qualitative ones as absolute numbers or percentages. Comparison between means is performed by a Student T-test, and between medians by a Mann-Whitney U-test. The research was approved by an accredited Ethical Research Committee. The sample comprises 110 prisoners from 11 different prisons, mean age 41.8 (40.4-43.2) years. Of these 105 were men and 8 non-Spanish. 83 prisoners (75.5%) opined they received high quality information about the clinical research; although, only 73 (66.4%) understood it completely. 104 (94.5%) felt no coercion and to 92.5% said they were guaranteed an anonymity. The reasons to be included in the research were: benefits for science (67.3%); benefit for future patients (65.5%); altruism (65.5%); possibility of improvement in the own illness (70%). Bivariate analyses showed no differences that depended on the length of the sentence or educational level. Spanish prisoners take part in clinical researches freely. The information provided on the research should be improved and be made more understandable. Altruism and benefits for the science are the principal reasons for participating in research.

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

    NASA Astrophysics Data System (ADS)

    Bonney, R.; Phillips, T.

    2011-12-01

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

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

    PubMed

    Wright, Caroline F; Middleton, Anna; Barrett, Jeffrey C; Firth, Helen V; FitzPatrick, David R; Hurles, Matthew E; Parker, Michael

    2017-02-24

    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.

  9. 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

  10. 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.

  11. 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

  12. 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

  13. Participation of disadvantaged parents in child care research.

    PubMed

    Joseph, D; Wailoo, M P; Jackson, A; Petersen, S A; Anderson, E S

    2005-09-01

    To assess the level to which parents from deprived and socially dysfunctional families collaborate in complex and time-consuming research. Home-based study, of early physiological development in infants from a severely deprived area. Overnight continuous recordings of deep-body temperature with twice daily urine collection, parental daily diary of life-events and completion of child care social and psychological assessment by interview questionnaire. Measurements taken between age 6-12 weeks, each lasted 8-12 h per night, averaging four nights per baby. Level of parental participation assessed in relation to ongoing lifestyle pressures. Setting Home based. Inner city deprived estate. Random sample of mothers with newborn healthy infants. A total of 87 overnight deep body temperature recordings were made on 22 infants each lasting 8-12 h; 174 urine samples were taken; and 22 sets of questionnaires were completed. Of 62 inner city deprived parents, 39 (62%) agreed to participate. 22 (35%) completed the study. Ongoing lifestyle pressures were high including incidents of burglary, fire and family violence. Family and partner pressures and life crises overwhelmed 10 non-participations. Research partnerships can be developed with underprivileged families facing severe life-events. Parents were highly motivated to complete what they perceived as important infant care research.

  14. 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

  15. Does research participation make a difference in residency training?

    PubMed

    Macknin, Jonathan B; Brown, Amy; Marcus, Randall E

    2014-01-01

    The American Board of Orthopaedic Surgery requirements state that an orthopaedic residency must offer at least 5 years of clinical education and some exposure to research. To expose residents to basic research, some programs, including ours, have a research track that allows for 1 year of basic science research. The degree to which research productivity during residency-which may be something that can perhaps be influenced by interventions like research tracks during residency-affects residency graduates' future research contributions is unknown. Our research goals were to determine whether (1) residents who published in a peer-reviewed journal during residency were more likely to publish in their careers after graduation; (2) residents who participated in an elective research year were more likely to publish at least one paper in a peer-reviewed journal during residency; and (3) residents who participated in the research year were more likely to choose academic careers. Using questionnaires, online PubMed searches, and office contact, the career paths (academic versus private practice) and publications in peer-reviewed journals of all 122 Case Western Reserve University orthopaedics residents who completed training from 1987 to 2006 were analyzed. Seventy-five percent of residents who published peer-reviewed research during residency continued with peer-reviewed publications in their careers versus 55% of residents who did not publish during residency (p = 0.02). No difference in career paths was observed between the Case Western Reserve University research and traditional track-trained surgeons. During residency, however, research track-trained surgeons were more likely to publish in peer-reviewed journals (71% versus 41% of traditional track-trained surgeons, p < 0.01). Residents who publish in a peer-reviewed journal during residency are more likely to continue publishing in their future careers as orthopaedic surgeons. Future studies are needed to elucidate

  16. 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

  17. 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.

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

    PubMed

    Ennis, Liam; Wykes, Til

    2016-02-01

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

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

    PubMed Central

    Ennis, Liam; Wykes, Til

    2016-01-01

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

  20. 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.

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

    ERIC Educational Resources Information Center

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

    2004-01-01

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

  2. Clinical Research Participation among Aging Adults Enrolled in an Alzheimer’s Disease Center Research Registry

    PubMed Central

    Jefferson, Angela L.; Lambe, Susan; Chaisson, Christine; Palmisano, Joseph; Horvath, Kathy J.; Karlawish, Jason

    2011-01-01

    In light of our limited understanding of what motivates older adults to participate in clinical studies of Alzheimer’s disease (AD), the current study examines incentives and barriers to participating in AD clinical research among older adults. 235 participants enrolled in the Boston University Alzheimer’s Disease Center research registry (75 ± 8 years, range 58–99 years, 60% female), a longitudinal registry from which individuals are recruited into other clinical studies, completed a survey assessing registry participation satisfaction, religiousness, trust in healthcare institutions, and medical research attitudes. Most participants reported initially enrolling in the registry for societal benefit. Insufficient time was a commonly endorsed barrier to enrolling in other Center-approved studies, particularly among younger participants. Driving and a lack of transportation to the medical facility were also barriers, particularly for older participants. Transportation was the most popular incentive, followed by home-based visits (particularly for older participants and participants with less formal education) and compensation (particularly among respondents from racial/ethnic minority groups). Participation interest in other studies was associated with favorable medical research attitudes (r = 0.34, p = 0.00003) but not religiousness (r = −0.09 p = 0.21) or trust in healthcare institutions (r = 0.09, p = 0.17). Among older adults, societal benefit is a motivating factor for registry enrollment; however, participation in additional studies is hindered by insufficient time among younger participants and transportation barriers among older participants. Providing transportation, home-based visits, and modest compensation may improve participation rates. Furthermore, favorable attitudes toward medical research are strongly associated with interest in enrolling in additional studies and may serve as a beneficial outreach triage technique. PMID:21116048

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

    PubMed

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

    2015-12-21

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

  4. 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.

  5. 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].

  6. 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

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

    PubMed Central

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

    2015-01-01

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

  9. Researchers' and clinicians' perceptions of recruiting participants to clinical research: a thematic meta-synthesis.

    PubMed

    Newington, Lisa; Metcalfe, Alison

    2014-06-01

    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. 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. 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. 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 researchers. Forging relationships between

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

    PubMed

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

    2015-12-01

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

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

    PubMed

    Crane, Stacey; Broome, Marion E

    2017-06-01

    The past 20 years have seen distinct shifts in the way the participation of children and adolescents in research is viewed. This has been emphasized by the growing pediatric research enterprise. Additional information on children's and adolescents' experiences during research participation is needed to better inform researchers on the ethical conduct of research with this vulnerable population. The objective of this analysis was to examine ethical issues in research with children and adolescents from their perspective as participants, including: assent, parental consent, risk perception, impact of research participation, and incentives. This systematic review was conducted per the Long, Godfrey, Randall, Brettle, and Grant framework by means of an iterative searching process. Using the key words "research ethics" and "child or pediatric or adolescent," PubMed, CINAHL, and EBSCOhost databases were searched to identify articles. Limitations placed on the searches were: English language, year of publication between 2003 and 2014, humans, abstract available, and age birth-18 years. Twenty-three empiric studies were identified and formed the sample. Included studies represented a diverse range of areas of research, methods, settings, sample demographics, authors, and journals. Even young children demonstrated the ability to understand essential elements of research, although there is variability in children's level of understanding. Trust was a significant contributing factor to children's and adolescents' participation in research, and also shaped their assessments of risk. Research participation was mainly beneficial for children and adolescents. Incentives were mainly viewed positively, although concerns of possible undue influence were expressed. © 2017 Sigma Theta Tau International.

  12. 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…

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

    PubMed

    Nalubega, Sylivia; Evans, Catrin

    2015-06-12

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

  14. 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. © 2016 Wiley Periodicals, Inc.

  15. 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…

  16. 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…

  17. 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.

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

    PubMed Central

    Odierna, Donna H.; Bero, Lisa A.

    2014-01-01

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

  19. 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.

  20. 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.

  1. 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.

  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. National practices regarding payment to research subjects for participating in pediatric research.

    PubMed

    Weise, Kathryn L; Smith, Martin L; Maschke, Karen J; Copeland, H Liesel

    2002-09-01

    Payment to subjects for participation in research is reportedly common, but no published data documents the nature of this practice. Institutional review boards (IRBs) are responsible for ensuring both the safety and voluntary participation of research subjects, yet guidance from federal and expert pediatric sources regarding appropriate payment approaches is conflicting. Ethical issues of payment for participation of adult versus pediatric research subjects may differ. This empirical study sought to examine current payment practices for participation in pediatric research as reported by IRBs. An 18-question survey regarding payment practices for participation in pediatric research was sent to IRB chairs at member institutions of the National Association of Children's Hospitals and Related Institutions, and to a systematic random sample of IRB chairs listed with the Office for Protection From Research Risks. Descriptive, nonparametric, and qualitative analyses were used to describe institution types, payment practices, and correlations among responses. Data from 128 institutions that conduct pediatric research revealed that payment for participation in pediatric research was allowed by 66% of responding institutions, and practices varied widely among institutions. Most responding IRBs that allowed payment required disclosure of payment before enrollment (during the consent process), following federal guidelines more closely than American Academy of Pediatrics guidelines. An IRB's perception of potential benefits or harms of a study correlated with the amount of payment approved. IRBs must balance the need to recruit pediatric research subjects against the risk of undue influence during the recruitment process. Federal guidelines and expert pediatric opinion differ in recommendations regarding payment; responding IRBs appeared to follow federal guidelines more closely than guidelines proposed by the American Academy of Pediatrics.

  4. From consultation to participation in public health research: reflections on a community-based research partnership.

    PubMed

    Breen, Lauren J; O'Connor, Moira

    2014-12-19

    Road traffic crashes and their outcomes are substantial global public health issues and public health initiatives are increasingly involving relevant community members in order to create sustainable change. This paper describes an applied research project utilizing participatory methods to establish a road trauma support service in Western Australia and reflects on the extent of participation in the community-based research partnership. Community-based participatory research (CBPR) provided the basis for the research project conducted in partnership with 34 government and non-government agency representatives and people affected personally by road trauma and which resulted in 22 recommendations for establishing the service. Attempts to position the group as co-researchers highlighted the dynamic interplay of factors that hinder and enable participation in participatory research. Barriers to participation within the research process included the limited time and funds, reluctance to share authorship, and a lack of clarity regarding roles and processes. Factors that enabled participation were the recognition of each member's expertise, providing different forms and methods of communication, and the reimbursement of costs according to role. In May 2012, the Government of Western Australia announced it would fund the recommendations and Road Trauma Support Western Australia was launched in November 2013. Notwithstanding this successful outcome, there were varied experiences of participation in the research process, and this was despite the use of a research methodology that is by definition participatory, with explicit and embedded participatory structures and processes. The research project shows that elements of CBPR can be incorporated into public health research, even in projects with externally-imposed time and budget constraints.

  5. 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

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

    PubMed

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

    2016-03-01

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

  7. 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…

  8. 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

  9. 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…

  10. 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.

  11. 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.

  12. 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.

  13. 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

  14. 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.

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

    PubMed Central

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

    2015-01-01

    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. PMID:26767182

  16. Researching Lifelong Learning Participation through an Interdisciplinary Lens

    ERIC Educational Resources Information Center

    Boeren, Ellen

    2017-01-01

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

  17. 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…

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

    ERIC Educational Resources Information Center

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

    2010-01-01

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

  19. 'You need to let your voice be heard': research participants' views on research.

    PubMed

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

    2013-03-01

    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. We conducted individual interviews and focus groups with 16 adults with intellectual and developmental disabilities to examine their perspectives on participating in research. Our analysis indicates that adults with intellectual and developmental disabilities want to engage in research to improve their quality of life and to have greater access to a worthwhile activity through more active participation. Our results also highlight trust as a critical ingredient in the success of research with this group. Our findings suggest that despite ethical challenges, researchers can and should pursue research that has the potential to improve the lives of persons with intellectual and developmental disabilities. Such research is more likely to be both ethical and successful if researchers pay attention to enhancing autonomy and person-centredness, while at the same time engendering participant trust. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 Blackwell Publishing Ltd.

  20. 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.

  1. 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.

  2. Compensation for Incarcerated Research Participants: Diverse State Policies Suggest a New Research Agenda

    PubMed Central

    Blankenship, Kim M.; Belt, Brandis

    2009-01-01

    Research with prisoners is essential to understanding the incarceration experience and creating interventions to mediate its effects on individual and community health. Policies on research involving incarcerated participants can influence the extent to which researchers are able or willing to conduct prison studies. We attempted to collect data on inmate compensation policies from all 50 states, the District of Columbia, and the Federal Bureau of Prisons. We found that 44% of these jurisdictions allow compensation for inmates who participate in research, with wide variations in terms of the clarity of and ease of access to policy information. Anecdotal data suggest considerable administrative discretion in the implementation of these policies. Further study is needed on how compensation policies are formulated and enacted and their effects on research with prisoners. PMID:19696389

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

    PubMed Central

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

    2013-01-01

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

  4. 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

  5. Socialization and Participation in the Arts. Research Division Report #21.

    ERIC Educational Resources Information Center

    Orend, Richard J.

    While the capacity to recognize and appreciate beauty may be inborn in all of us, participation in the arts as an audience or artist usually involves a learning process. What is the relationship between childhood and early adult experiences with the arts and later participation? In 1982, with funding from the National Endowment for the Arts, the…

  6. Exploring the reasons urban and rural-dwelling older adults participate in memory research.

    PubMed

    Hunsaker, Amanda; Sarles, C Elizabeth; Rosen, Daniel; Lingler, Jennifer H; Johnson, Marla Bonacile; Morrow, Lisa; Saxton, Judith

    2011-05-01

    This study examines how underrepresented older urban and rural-dwelling individuals conceptualize participation in cognitive impairment studies. Nine focus groups were held with urban and rural-dwelling older adults who had participated in a community-based memory screening study. Expected and experienced benefits of research participation were motivators for study participation in all focus groups. Results indicate that participation in memory research was believed to lead to an understanding of memory function. Focus group participants expressed an active interest in research on dementia, and viewed research participation as a way to address memory concerns and provide a benefit to society.

  7. 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.

  8. [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.

  9. 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

  10. 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…

  11. 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…

  12. 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…

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

    ERIC Educational Resources Information Center

    Bucknall, Sue

    2012-01-01

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

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

    ERIC Educational Resources Information Center

    Fox, Rachael

    2013-01-01

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

  15. 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…

  16. 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. © 2015 American Society of Law, Medicine & Ethics, Inc.

  17. 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.

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

    ERIC Educational Resources Information Center

    Levinson, Martin P.

    2010-01-01

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

  19. 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)

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

    PubMed Central

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

    2010-01-01

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

  1. 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…

  2. 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…

  3. 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…

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

    ERIC Educational Resources Information Center

    Dockett, Sue; Einarsdottir, Johanna; Perry, Bob

    2012-01-01

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

  5. 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…

  6. Children's participation in research: their right to consent.

    PubMed

    Thurber, F W; Deatrick, J A; Grey, M

    1992-06-01

    This article discusses the ethical and legal considerations related to the inclusion of children in the research process. Specific attention is paid to situations in which customary guidelines are inappropriate. In addition, the results of a survey to determine the manner in which Institutional Review Boards are addressing these issues is presented with suggestions to assist nurse researchers in acquiring review board approvals.

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

    ERIC Educational Resources Information Center

    Bowden, Anne

    2015-01-01

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

  8. 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…

  9. 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…

  10. 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

  11. 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.

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

    PubMed

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

    2016-05-01

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

  13. 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

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

    PubMed

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

    2017-03-01

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

  15. Research participation, trust, and fair compensation among people living with and without HIV in Florida.

    PubMed

    Cook, Christa; Mack, Jasmine; Cottler, Linda B

    2017-06-29

    Florida has the second highest number of newly diagnosed cases of HIV in the United States. Sociodemographic representation that is reflective of the population is essential in developing evidence based interventions to improve HIV outcomes and reduce disparities. Understanding HIV research trial participation, preferences for types of research, and fair compensation for research will further our understanding of someone's decision to participate in research. The purpose of this analysis was to identify differences in prior research participation, trust, interests in types of research, and fair compensation between people living with HIV and without HIV in North Central Florida. In this sample of 8340 people interviewed in the community about their health concerns and research participation, 156 reported living with HIV. Only 20.5% of people with HIV reported past participation in research, however 94.2% said they were interested in future research participation. While people with HIV were slightly more interested in higher risk/low convenience research, there were no statistically significant differences in preferences for types of research between those with and without HIV. People with HIV reported no difference in the amount they would request for fair compensation ($78.4 USD) compared with those without HIV ($72.2 USD, p = 0.69). Community members are interested in participating in research, although few had previously participated. Improving our understanding of research study participation will help improve recruitment efforts and draw stronger conclusions regarding the effectiveness of interventions, as well as enhance implementation of these interventions.

  16. 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

  17. 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…

  18. 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

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

    PubMed

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

    2013-01-01

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

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

    PubMed

    Barrett, Robert J; Parker, Damon B

    2003-04-01

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

  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. 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…

  3. 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.

  4. 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.

  5. 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…

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

    ERIC Educational Resources Information Center

    McTavish, Marianne; Streelasky, Jodi; Coles, Linda

    2012-01-01

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

  7. 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…

  8. 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…

  9. 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…

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

    ERIC Educational Resources Information Center

    Newfield, Denise

    2011-01-01

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

  11. 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…

  12. 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…

  13. 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…

  14. 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.

  15. A telephone survey of factors affecting willingness to participate in health research surveys.

    PubMed

    Glass, D C; Kelsall, H L; Slegers, C; Forbes, A B; Loff, B; Zion, D; Fritschi, L

    2015-10-05

    In recent years, reduced participation has been encountered across all epidemiological study designs, both in terms of non-response as well as refusal. A low response rate may reduce the statistical power but, more importantly, results may not be generalizable to the wider community. In a telephone survey of 1413 randomly selected members of the Australian general population and of 690 participants sourced from previous studies, we examined factors affecting people's stated willingness to participate in health research. The majority of participants (61 %) expressed willingness to participate in health research in general but the percentage increased when provided with more specific information about the research. People were more willing if they have personal experience of the disease under study, and if the study was funded by government or charity rather than pharmaceutical companies. Participants from previous studies, older people and women were the groups most willing to participate. Younger men preferred online surveys, older people a written questionnaire, and few participants in any age and sex groups preferred a telephone questionnaire. Despite a trend toward reduced participation rates, most participants expressed their willingness to participate in health research. However, when seeking participants, researchers should be concrete and specific about the nature of the research they want to carry out. The preferred method of recommended contact varies with the demographic characteristics.

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

    ERIC Educational Resources Information Center

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

    2008-01-01

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

  17. 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…

  18. 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…

  19. 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…

  20. Incentives for Research Participation: Policy and Practice From Canadian Corrections

    PubMed Central

    Forrester, Pamela; Brazil, Amanda; Doherty, Sherri; Affleck, Lindy

    2012-01-01

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

  1. 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

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

    PubMed Central

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

    2017-01-01

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

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

    PubMed

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

    2017-06-01

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

  4. Complementary and alternative medicine use among individuals participating in research: implications for research and practice.

    PubMed

    Welder, Gregory J; Wessel, Timothy R; Arant, Christopher B; Schofield, Richard S; Zineh, Issam

    2006-12-01

    To determine the frequency and type of complementary and alternative medicine (CAM) use among healthy volunteers participating in research, and to investigate the potential for interactions between commonly used CAM modalities and various drugs. Prospective evaluation. University general clinical research center. Sixty healthy adults participating in an ongoing drug study. The clinical study database was queried to determine the use and type of existing and newly started CAM throughout the study period. Baseline characteristics were compared between users and nonusers of CAM to identify differences between them. Potential CAM-drug interactions were classified based on curated databases and primary literature sources. Of the 60 subjects enrolled, 30 (50%) used CAM during the study. Of these, 26 (87%) were using CAM at study entry. Baseline CAM users were on average 7 years older than nonusers (p=0.03) and had high-density lipoprotein cholesterol concentrations 10 mg/dl higher than those of nonusers (p=0.04). The group using CAM had more women and nonsmokers than the other group. Several potential CAM-drug interactions were identified. Because of high rates of CAM use (50% of the subjects were using biologically based CAM) and the many potential CAM-drug interactions, CAM use should be rigorously addressed in clinical practice and research. Failure to capture this information may have clinical repercussions through pharmacokinetic and pharmacodynamic interference of clinical response and clinical trial results. Clinicians and researchers may be able to identify those most likely to use CAM by their baseline characteristics; this would help target those patients and research subjects for more thorough assessment and follow-up.

  5. Recruiting healthy volunteers for research participation via internet advertising.

    PubMed

    Bramstedt, Katrina A

    2007-06-01

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

  6. Recruiting Healthy Volunteers for Research Participation via Internet Advertising

    PubMed Central

    Bramstedt, Katrina A.

    2007-01-01

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

  7. 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.

  8. Financial compensation to adolescents for participation in biomedical research: adolescent and parent perspectives in seven studies.

    PubMed

    Scherer, David G; Brody, Janet L; Annett, Robert D; Hetter, Jeanne; Roberts, Laura Weiss; Cofrin, Keely M W

    2005-04-01

    To examine the impact of financial compensation on pediatric asthma research participation decision-making and determine whether perceptions of fair compensation differed for parents and adolescents, lower and higher income participants, and compensation-informed and uninformed participants in minimal and above minimal risk research. Adolescents (n = 36) with asthma and their parents reviewed 7 pediatric asthma research protocols, decided whether they would choose to participate, and provided estimates of "fair" compensation for their participation. Chi-square, analysis of variance, and analysis of covariance were used to determine the affects of compensation on participation and whether various respondents differed in the perceptions of fair compensation. Financial compensation did not affect participation decisions. Estimates of fair compensation were lower for adolescents, lower income respondents, and participants who were naive about potential compensation. Fair compensation estimates were higher than actual compensation for minimal risk studies and lower for above minimal risk studies. Financial compensation may be a minor consideration in pediatric research participation decision-making. Still, differences in how pediatric researchers and their prospective participants judge fair compensation create the potential for undue influence. Pediatric researchers should use caution when determining a reasonable financial compensation for research participation.

  9. Research on some parameters of cellular immune response in soldiers undergoing basic training--preliminary report.

    PubMed

    Karpiński, J; Kidawa, Z; Kocur, E; Zeman, K; Rogulski, B; Wołkanin, P; Pokoca, L; Fornalczyk-Wachowska, E; Paśnik, J; Kaczmarek, P

    2001-01-01

    On the basis of available reports it can be stated that physical stress causes changes in distribution and activity of many components of the immune system. It is believed that psychophysical stress in soldiers can influence their immune system depressively and in consequence increase the risk of upper respiratory tract infections. Therefore, it was decided to conduct studies aimed at the estimation of the influence of military training on the some parameters of cellular immune response. The study group consisted of 40 draft aged from 18 to 23 years. The research was conducted in the first 8 weeks of service, in the period of the most intense draft stress adaptation. The participants were divide into 2 groups, A and B respectively, 20 soldiers each. Group A derived from an assault unit. Their training induced strenuous physical stress. Group B derived from a support unit. Their training required less physical effort then one of group A. Performed examinations involved: lymphocyte percentage count, lymphocyte proliferative response to mitogen, CD69 antigen expression on T lymphocyte surface, delayed hypersensitivity reaction with CMI Multitest. All assessments were done twice at 8 weeks interval. After 8 weeks of training in the A group a statistically significant increase in the percentage of lymphocytes revealing antigens of the II Class Main Histocompatibility Complex (MHC) was found. In addition, in this group a statistically significant decrease in the value of lymphocyte stimulation index, a statistically significant increase in the percentage of cells revealing CD69 antigen expression after PHA stimulation were observed. During investigated period in the B group following statistically significant changes were found: an increase in the percentage of CD3+ and CD4+ cells, a decrease in the percentage of CD16+CD56+ and an increase in the CD4+ to CD8+ ratio. The obtained results show that military service conditions influence some parameters of the cellular

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

    PubMed Central

    2014-01-01

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

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

    PubMed

    Somayaji, Darryl; Cloyes, Kristin Gates

    2015-01-01

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

  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. 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.

  14. Patient Participation in Research in the Managed Care Environment: Key Perceptions of Members in an HMO

    PubMed Central

    Purdy, Sarah; Finkelstein, Jonathan A; Fletcher, Robert; Christiansen, Cindy; Inui, Thomas S

    2000-01-01

    This study's objective was to elicit the views of research among enrollees in an HMO. A questionnaire was mailed to 207 adult enrollees, 55% had been exposed to research and 45% had not. Ninety-four percent of respondents supported research within the HMO, and 87% thought using information from medical records for research was acceptable. Sixty-three percent thought participation in research increased patient understanding of health care. Significantly more prior research participants thought that participation in research improves care. More patients would participate if written information were provided (67%), if feedback of results was provided (72%), and if their clinician invited them (67%). Only a modest percentage (20%) of patients would participate in a randomized trial. PMID:10940136

  15. 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.

  16. Racial differences in factors that influence the willingness to participate in medical research studies.

    PubMed

    Shavers, Vickie L; Lynch, Charles F; Burmeister, Leon F

    2002-05-01

    The relative absence of racial/ethnic minorities among medical research subjects is receiving considerable attention because of recent government mandates for their inclusion in all human subject research. We examined racial differences in the prevalence of sociocultural barriers as a possible explanation for the underrepresentation of African Americans in medical research studies. During 1998-1999, a total of 198 residents of the Detroit Primary Metropolitan Statistical Area (PMSA) participated in a survey that examined impediments to participation in medical research studies. Chi square tests and logistic regression analyses were used to examine the association between race, issues related to trust of medical researchers, and the willingness to participate in medical research studies. Study results indicate that African Americans and whites differ in their willingness to participate in medical research. Racial differences in the willingness to participate in a medical research are primarily due to the lower level of trust of medical research among African Americans. African American respondents were also somewhat less willing to participate if they attribute high importance to the race of the doctor when seeking routine medical care, believed that minorities bear most of the risks of medical research, and if their knowledge of the Tuskegee Study resulted in less trust in medical researchers. These data reiterate the need for medical researchers to build trusting relationships with minority communities. Researchers can begin by acknowledging the previous medical abuse of minority research participants, discussing their specific plans to assure the protection of study participants, and explaining the need for the participation of racial/ethnic minorities including studies that specifically target or that are likely to result in disproportionate representation of racial/ethnic minorities among study participants.

  17. 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.

  18. 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…

  19. 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.

  20. Barriers and facilitators of African American participation in Alzheimer disease biomarker research.

    PubMed

    Williams, Monique M; Scharff, Darcell P; Mathews, Katherine J; Hoffsuemmer, Jonathan S; Jackson, Pamela; Morris, John C; Edwards, Dorothy F

    2010-01-01

    African Americans experience a greater risk of Alzheimer disease (AD), but are underrepresented in AD research. Our study examined barriers and facilitators of AD research participation among African Americans. Investigators conducted 11 focus groups with African American participants (n=70) who discussed barriers and facilitators to AD research participation including lumbar puncture studies. The moderator and comoderator independently reviewed the transcripts, identified themes, and coded transcripts for analysis. Participants were predominately female (73%) with a mean age of 52 years (range 21 to 86 y). Concerns and attitudes were consistent across education, socioeconomic status, and sex. Mistrust was a fundamental reason for nonparticipation. Additional barriers included insufficient information dissemination in the African American community, inconvenience, and reputation of the researcher and research institution. Barriers to participation in AD biomarker studies were fear of the unknown and adverse effects. Altruism and relevance of research projects to the individual, family members, or the African American community facilitate participation. Increased participation results from relationships with the community that extend beyond immediate research interests, dissemination of research findings, and emphasis on relevance of proposed studies. Pervasive barriers impede African American participation in AD research but can be overcome through a sustained presence in the community.

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

    PubMed Central

    Armour, Carol; Brillant, Martha; Krass, Ines

    In order for community pharmacy practice to continue to evolve, pharmacy practice research on potential new services is essential. This requires the active participation of community pharmacists. At present the level of involvement of community pharmacists in pharmacy practice research is minimal. Objectives To ascertain the attitudes of a group of research-experienced community pharmacists towards participating in research; to investigate the barriers and facilitators to participation; to identify potential strategies to increase the involvement of community pharmacists in research. Methods A focus group was conducted with a purposive sample of 11 research-experienced community pharmacists. A pharmacist academic moderated the focus group using a semi-structured interview guide. The participants were asked about their attitudes towards research, previous involvement in research, barriers to their involvement and strategies to overcome these barriers. The session was audio-taped and notes were taken by an observer. Thematic analysis of the notes and audio-tape transcripts was conducted. Results Three themes emerged around pharmacists’ attitudes towards research: pharmacists’ perception of the purpose of research, pharmacists’ motivation for involvement in research, and pharmacists’ desired role in research. Barriers to research participation were grouped into four themes: pharmacists’ mindset, communication, infrastructure (time, money and staff), and skills/knowledge. Strategies to address each of these barriers were suggested. Conclusions Participants recognised the importance of research towards advancing their profession and this was a motivating factor for involvement in research. They perceived their role in research primarily as data collection. A series of practical strategies to overcome the barriers to participation were offered that researchers may wish to consider when promoting research outcomes and designing research projects. PMID:25214919

  2. 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.

  3. Views of Potential Research Participants on Financial Conflicts of Interest: Barriers and Opportunities for Effective Disclosure

    PubMed Central

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

    2006-01-01

    BACKGROUND There is little guidance regarding how to disclose researchers' financial interests to potential research participants. OBJECTIVE To determine what potential research participants want to know about financial interests, their capacity to understand disclosed information and its implications, and the reactions of potential research participants to a proposed disclosure statement. DESIGN AND PARTICIPANTS Sixteen focus groups in 3 cities, including 6 groups of healthy adults, 6 groups of adults with mild chronic illness, 1 group of parents of healthy children, 1 group of parents of children with leukemia or brain tumor, 1 group of adults with heart failure, and 1 group of adults with cancer. APPROACH Focus group discussions covered a range of topics including financial relationships in clinical research, whether people should be told about them, and how they should be told. Audio-recordings of focus groups were transcribed, verified, and coded for analysis. RESULTS Participants wanted to know about financial interests, whether or not those interests would affect their participation. However, they varied in their desire and ability to understand the nature and implications of financial interests. Whether disclosure was deemed important depended upon the risk of the research. Trust in clinicians was also related to views regarding disclosure. If given the opportunity to ask questions during the consent process, some participants would not have known what to ask; however, after the focus group sessions, participants could identify information they would want to know. CONCLUSIONS Financial interests are important to potential research participants, but obstacles to effective disclosure exist. PMID:16918732

  4. 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.

  5. Ethical issues in adolescent and parent informed consent for pediatric asthma research participation.

    PubMed

    Scherer, David G; Annett, Robert D; Brody, Janet L

    2007-09-01

    This article reviews the empirical literature related to knowledge, competence, volition, and financial compensation in the biomedical research decision-making of children, adolescents, and parents. Research findings indicate there are differences in adolescent and parent understanding and appreciation of research risks and procedures, that opinions about decision-making authority and physician influence for research participation are different in adolescents and parents, and that financial compensation can be a salient factor in the research-related decision-making process. Pediatric asthma researchers can consider these psychological factors involved in adolescent and parent research participation decision-making processes to develop effective informed consent procedures.

  6. 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…

  7. 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…

  8. 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.…

  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. 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…

  11. 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…

  12. 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…

  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. Participation of ICUs in critical care pandemic research: a province wide, cross-sectional survey.

    PubMed

    Burns, Karen E A; Rizvi, Leena; Tan, Wylie; Marshall, John C; Pope, Karen

    2013-04-01

    Little information exists to identify barriers to participation in pandemic research involving critically ill patients. We sought to characterize clinical research activity during the recent influenza A pandemic and to understand the experiences, beliefs, and practices of key stakeholders involved in pandemic research implementation. Cross-sectional, provincial postal questionnaire. Level III ICUs. ICU administrators and research coordinators. We used rigorous survey methodology to identify potential respondents and to develop, test, and administer two-related questionnaires. We analyzed responses from 39 research coordinators and 139 administrators (response rates: 70.9% and 73.2%, respectively). Compared with non-influenza A studies, influenza A studies were less likely to be randomized trials and most often investigator-initiated and peer-review funded. Whereas both respondent groups felt that pandemic research would be helpful in providing care during future pandemics, research coordinators placed significantly greater importance on their ICU's participation in pandemic research. Both respondent groups expressed a need for rapid approval processes, designated funding for research personnel, adequate funding for start-up and patient screening, preapproved template protocols and consent forms, and clearer guidance regarding co-enrollment. Research coordinators acknowledged a need for alternative consent models to increase their capacity to participate in future pandemic research. More administrators expressed willingness to participate in the next pandemic if the required research resources were made available to them. Whereas research personnel and administrators support participation in pandemic ICU research, several modifiable barriers to participation exist. Pandemic research preparedness planning with regulatory bodies and dedicated funding to support research infrastructure, especially in community settings, are required to optimize future pandemic research

  15. 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.

  16. Perceptions of stress among students participating in psychology research: a canadian survey.

    PubMed

    Flagel, David C; Best, Lisa A; Hunter, Aren C

    2007-09-01

    IT HAS BEEN SHOWN THAT PROPERLY conducted interviews in sensitive clinical contexts are negligibly stressful. The present study sought to extend these results and determine the perception of stress by research participants in nonclinical settings. Students enrolled in first year psychology courses typically have the option to receive class credit for research participation in studies assumed to pose minimal risk to participants. The perceptions of 101 student volunteers were examined to determine if they felt that research participation was stressful and, if so, what components of the process caused their stress. Participants completed a short survey indicating the reasons they served as research participants and the degree to which participation was stressful. They indicated that research participation was a valuable learning experience and the majority felt no stress associated with participation. Stress was reported by some due to concerns about confidentiality and evaluation by others of their personal performance. In addition, the majority of students reported having no knowledge of the ethical review process that preceded their participation. It is suggested that students should be informed of the ethical review process.

  17. Factors that influence African-Americans' willingness to participate in medical research studies.

    PubMed

    Shavers, V L; Lynch, C F; Burmeister, L F

    2001-01-01

    The underrepresentation of African-Americans among medical research participants is receiving considerable attention because of recent government mandates for the inclusion of all racial/ethnic groups in human subject research. Therefore, there is a need to determine factors that influence minority enrollment in medical research studies. Between 1998-1999, 91 African-American residents of the Detroit Primary Metropolitan Statistical Area participated in a mail and telephone survey designed to examine impediments to participation in medical research studies. Chi-square tests and multiple logistic regression analyses were used to examine the association between race, issues related to trust in medical researchers, and the willingness to participate in medical research studies. African-American respondents were somewhat less willing to participate if they attributed high importance to the race of the physician when seeking routine medical care, believed that minorities or the poor bear most of the risks of medical research, and, most especially, their knowledge of the Tuskegee Study resulted in less trust in medical researchers. These data reiterate the need for medical researchers to build trusting relations with African-Americans and to conduct research in an ethical manner. This includes maximizing benefits, reducing risks, and assuring distributive justice to all medical research study participants. Copyright 2001 American Cancer Society.

  18. 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

  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. © The Author(s) 2015.

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

    PubMed

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

    2014-04-01

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

  2. 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.

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

    PubMed Central

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

    2012-01-01

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

  4. Cancer-related psychosocial research: what are the perspectives of cancer care centre users on participation?

    PubMed

    Hepworth, Julie; Robertson, Ann R R; Jhunjhunwala, Anita; Jarvis, Glyn C; McVittie, Chris

    2011-07-01

    To explore the perspectives of cancer care centre users on participation in psychosocial research to inform research design and ethics. The study is based on a qualitative research design. Fourteen semistructured interviews were carried in people diagnosed with cancer and carers. The interview included four main questions about practical barriers to participation, types of research design, motivating factors and the conduct of research in a cancer care support setting. The data were analysed using qualitative content analysis. Interviewees demonstrated a willingness to participate in psychosocial research within certain circumstances. There were no practical barriers identified, although they considered payment for research-related travel important. The most acceptable research design was the face-to-face interview and the least preferred was the randomised control trial. The factors that motivated participation were altruism, valuing research, and making a contribution to the centre. Interviewees supported the conduct of research in cancer care support centres conditional upon delaying recruitment during the initial months of users' visits and its need to be discreet to avoid deterring visitors from accessing the centre. The study concludes that the personal interaction between participants and researchers is the most important feature of decision-making by patients/carers to join studies. Taking into account the perspectives of people affected by cancer during the early stages of research design may enhance recruitment and retention and can contribute to the development of research protocols and ethics.

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

    PubMed

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

    2006-09-01

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

  6. 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.

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

    PubMed Central

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

    2007-01-01

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

  8. 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

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

    PubMed Central

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

    2013-01-01

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

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

    PubMed

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

    2012-01-01

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

  11. 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.

  12. 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.

  13. 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. © The Author(s) 2014.

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

    PubMed

    Permuth-Wey, Jennifer; Borenstein, Amy R

    2009-04-01

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

  15. 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

  16. 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

  17. Participation in Genetic Research: Amazon's Mechanical Turk Workforce in the United States and India.

    PubMed

    Groth, Susan W; Dozier, Ann; Demment, Margaret; Li, Dongmei; Fernandez, I Diana; Chang, Jack; Dye, Timothy

    2016-01-01

    Genomic research has innumerable benefits. However, if people are unwilling to participate in genomic research, application of knowledge will be limited. This study examined the likelihood of respondents from a high- and a low- to middle-income country to participate in genetic research. Cross-sectional data were collected using Amazon's Mechanical Turk workforce to ascertain attitudes toward participation in genetic research. Registered country of residence was either the US (n = 505) or India (n = 505). Multiple logistic regression models were used to assess adjusted effects of demographic characteristics, health, social status, beliefs and concerns on 4 genetic research outcomes. Participants from India who believed chance and powerful others influenced their health were more likely to participate in genetic research (OR = 1.0, 95% CI 1.0-1.1) and to agree with sharing of DNA data (OR = 1.1, 95% CI 1.1-1.2). US participants were more likely to be concerned about protection of family history, which they indicated would affect participation (OR = 3.6, 95% CI 2.1-6.0). Commonalities for the likelihood of participation were beliefs that genetic research could help find new treatments (India OR = 2.3, 95% CI 1.0-5.4; US OR = 4.7, 95% CI 2.0-11.2) and descendants would benefit (India OR = 2.6, 95% CI 1.2-5.5; US OR = 3.0, 95% CI 1.3-7.1). Concurrence of beliefs on benefits and concerns about genetic research suggest they may be common across countries. Consideration of commonalities may be important to increase global participation in genetic research. © 2016 S. Karger AG, Basel.

  18. 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.

  19. African American participation in Alzheimer's disease research that includes brain donation.

    PubMed

    Darnell, Kathryn R; McGuire, Caitlin; Danner, Deborah D

    2011-09-01

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

  20. 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

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

    PubMed

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

    2016-07-07

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

  2. 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.

  3. 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

  4. 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.

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

    PubMed

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

    2017-07-01

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

  6. Why do children decide not to participate in clinical research: a quantitative and qualitative study.

    PubMed

    Hein, Irma M; Troost, Pieter W; de Vries, Martine C; Knibbe, Catherijne A J; van Goudoever, Johannes B; Lindauer, Ramón J L

    2015-07-01

    More pediatric drug trials are needed, but although specific pediatric regulations warrant safety, recruitment of children for these trials remains one of the main difficulties. Therefore, we investigated potential determining factors of nonparticipation in clinical research, in order to optimize research participation of children by recommending improved recruitment strategies. Between 1 January 2012 and 1 January 2014, we performed a prospective study among161 pediatric patients, aged 6 to 18 y, who were eligible for clinical research. We quantitatively analyzed the association of potential explanatory variables (e.g., age, cognitive development, experience, ethnicity) with nonparticipation and qualitatively analyzed interviews on reasons for nonparticipation. Sixty percent of the children did not participate in the research project on offer (39% decided not to participate, 21% were indecisive). Lower age, less disease experience, and less complex research with lower risk were predictive for not participating. Time constraint and extra burden were expressed as decisive reasons for not participating. Strategies to optimize research participation should be aimed at younger children and their families, who are logistically challenged and unfamiliar with health care and research. Recommendations include informing pediatric patients and their families of the value of research; minimizing logistic burdens; and improving accessibility.

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

    PubMed

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

    2014-01-01

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

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

    PubMed Central

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

    2013-01-01

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

  9. 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.

  10. An intervention to enhance Alzheimer's disease clinical research participation among older African Americans.

    PubMed

    Jefferson, Angela L; Lambe, Susan; Romano, Raymond R; Liu, Dandan; Islam, Fareesa; Kowall, Neil

    2013-01-01

    Alzheimer's disease (AD) rates are higher among African Americans than in other racial or ethnic groups. However, Black elders participate in research at lower rates than Whites. The present study aimed to: (1) implement an informational protocol for African Americans elders and their loved ones about the benefits of clinical research and brain donation program participation in AD, and (2) quantitatively assess changes in knowledge, attitudes, and trust. Participants included 52 African American participants from the Boston University Alzheimer's Disease Center research registry (74 ± 8 years, 83% female) and 11 loved ones. Registry participants completed a pre- and post-group survey assessing brain donation knowledge, factors influencing brain donation, attitudes about medical research, and trust in medical researchers. There were no significant changes in mean scores between the pre- and post-group surveys. However, post-group outcomes revealed that 69% of participants shared details from the protocol with loved ones, 27% expressed an interest in joining Center-sponsored studies, and 10% indicated an interest in changing their brain donation status. The informational protocol implemented in this study is an effective method to encourage family discussions about brain donation and increase interest in other AD research studies. Longitudinal follow-up is necessary to assess the long-term implications of these groups on participation in a brain donation program.

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

    PubMed Central

    Sofaer, Neema

    2014-01-01

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

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

    PubMed

    Sofaer, Neema

    2014-11-01

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

  13. How disease advocacy organizations participate in clinical research: a survey of genetic organizations.

    PubMed

    Landy, David C; Brinich, Margaret A; Colten, Mary Ellen; Horn, Elizabeth J; Terry, Sharon F; Sharp, Richard R

    2012-02-01

    Disease advocacy organizations may assist in the conduct of research in a variety of ways. We sought to characterize how disease advocacy organizations participate in clinical research and perceive their contributions. Postal and electronic surveys administered to leaders of disease advocacy organizations for genetic conditions identified through the Genetic Alliance's Disease InfoSearch. Of the 201 disease advocacy organizations approached, 124 (62%) responded. In the past 2 years, 91% of these organizations had assisted in participant recruitment, 75% collected data, 60% provided a researcher with financial support, and 56% assisted with study design. Forty-five percent of these organizations also supported a research registry or biobank. Few disease advocacy organization leaders (12%) reported regrets about research studies they had supported. Most (68%) felt their involvement in clinical research had increased the amount of research on their condition and that researchers should consult organizations like theirs in deciding how to recruit participants (58%) and in selecting research topics (56%). In addition to providing financial support, disease advocacy organizations participate directly in multiple aspects of research, ranging from study design and patient recruitment to data collection and analysis. Leaders of these organizations feel strongly that scientists and research sponsors should engage them as partners in the conduct of clinical research.

  14. 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…

  15. 22 CFR 63.4 - Grants to foreign participants to lecture, teach, and engage in research.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ..., teach, and engage in research. 63.4 Section 63.4 Foreign Relations DEPARTMENT OF STATE PUBLIC DIPLOMACY... EXCHANGE PROGRAM § 63.4 Grants to foreign participants to lecture, teach, and engage in research. A citizen... research may be entitled to any or all of the following benefits when authorized by the Agency: (a...

  16. 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,…

  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. 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…

  19. 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,…

  20. 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…

  1. 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…

  2. 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…

  3. 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…

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

    PubMed

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

    2017-08-01

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

  5. Enhancing community participation in intervention research: farmworkers and agricultural chemicals in North Carolina.

    PubMed

    Arcury, T A; Austin, C K; Quandt, S A; Saavedra, R

    1999-08-01

    The participation of affected communities in the development of public health intervention research improves project sustainability and effectiveness by making projects more relevant and acceptable to the communities. This article presents a multimode, multidomain model approach for community participation in different project components, which ensures the benefits of participation without requiring the same level of participation in every activity or by every community sector. A case study is used to illustrate the model, describing procedures for establishing and maintaining farmworker participation in developing an intervention to reduce exposure to chemicals. Farmworkers are a poor and underserved population for which the empowering and culturally appropriate benefits of community participation are especially needed. However, this population presents challenges for participatory health projects: geographic dispersion, ethnic diversity, lack of organization, sense of powerlessness, and communication and transportation difficulties. The lessons learned in this case extend the method and theory of community participation.

  6. 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

  7. 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…

  8. Participation in Schools? Five Case Studies. ACER Research Series No. 98.

    ERIC Educational Resources Information Center

    Fitzgerald, R. T.; And Others

    The issues of public participation in schools and school-community relations are surveyed, the findings of a two-year research program conducted in five secondary schools examined, and some suggestions made for policy in the areas of local participation in schools and the planning of change in schools. The schools are described as (1) a large…

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

    PubMed

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

    2011-06-01

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

  10. 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…

  11. 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…

  12. 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"…

  13. 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…

  14. 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…

  15. 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…

  16. 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.

  17. 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.

  18. 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.

  19. [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.

  20. "Makes you proud to be black eh?": reflections on meaningful indigenous research participation.

    PubMed

    Kelly, Jenny; Saggers, Sherry; Taylor, Kylie; Pearce, Glenn; Massey, Peter; Bull, Jennifer; Odo, Travis; Thomas, John; Billycan, Rosita; Judd, Jenni; Reilly, Susan; Ahboo, Shayne

    2012-08-08

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

  1. 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.

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

    PubMed Central

    Steingrimsdottir, Hanna Steinunn; Arntzen, Erik

    2015-01-01

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

  3. Non-participation in sports injury research: why football players choose not to be involved.

    PubMed

    Braham, R; Finch, C; McCrory, P

    2004-04-01

    To ascertain the reasons behind players not participating in a sports safety research project. During the preseason, 10 Australian football clubs volunteered 23 teams to participate in a protective equipment randomised controlled trial, the Australian Football Injury Prevention Project (AFIPP). All players from these teams were invited to participate. Players who did not agree to participate in AFIPP were surveyed about their reasons for non-involvement. 110 football players (response rate 63.6%) completed the non-responder survey and cited the two main reasons behind non-involvement in the project as "I did not know about the project" (39.4%) and "I was not at training when the research team visited" (36.5%). and implications: Preseason may not be the best time for maximal player recruitment in community based sports safety research. Enhanced communication between researchers and players at community level football clubs during the recruitment phase is likely to improve response rates.

  4. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2013 CFR

    2013-04-01

    ... projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL SECURITY INCOME FOR THE AGED, BLIND, AND DISABLED Determinations of Disability Administrative... State participation in federally funded research and demonstration projects to assess the effectiveness...

  5. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2014 CFR

    2014-04-01

    ... projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL SECURITY INCOME FOR THE AGED, BLIND, AND DISABLED Determinations of Disability Administrative... State participation in federally funded research and demonstration projects to assess the effectiveness...

  6. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2011 CFR

    2011-04-01

    ... projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL SECURITY INCOME FOR THE AGED, BLIND, AND DISABLED Determinations of Disability Administrative... State participation in federally funded research and demonstration projects to assess the effectiveness...

  7. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2010 CFR

    2010-04-01

    ... projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL SECURITY INCOME FOR THE AGED, BLIND, AND DISABLED Determinations of Disability Administrative... State participation in federally funded research and demonstration projects to assess the effectiveness...

  8. 20 CFR 416.1029 - Participation in research and demonstration projects.

    Code of Federal Regulations, 2012 CFR

    2012-04-01

    ... projects. 416.1029 Section 416.1029 Employees' Benefits SOCIAL SECURITY ADMINISTRATION SUPPLEMENTAL SECURITY INCOME FOR THE AGED, BLIND, AND DISABLED Determinations of Disability Administrative... State participation in federally funded research and demonstration projects to assess the effectiveness...

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

    PubMed Central

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

    2006-01-01

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

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

    PubMed

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

    2015-09-09

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

  11. An Ethno-medical Perspective on Research Participation: A Qualitative Pilot Study

    PubMed Central

    Calderón, José L.; Baker, Richard S.; Fabrega, Horacio; Conde, José G.; Hays, Ron D.; Fleming, Erik; Norris, Keith

    2006-01-01

    Background Recruitment of racial/ethnic minorities for clinical research continues to be problematic, yet critical to ensuring that research data will be applicable to diverse populations. There is a paucity of information about culturally appropriate methods for recruiting and retaining racial/ethnic minorities in research. Objective To cross-culturally assess perceptions of research participation by African American and immigrant Latinos living in the inner-city community of Watts, Los Angeles, California, using qualitative methods. Design Focus groups using ethnically matched moderators were convened with African American and immigrant Latino participants. Discussion was facilitated using a script that focused on perceived “feelings” and “perceptions” about research. Discussions were audiotaped, transcribed, and analyzed using manual and computerized statistically based software (mixed) methods. Results African Americans and immigrant Latinos shared several barriers and motivators to research. However, they also reported barriers and motivators to research that were distinct to each group. Latinos were more interested in healthcare and health information, and African Americans were more concerned with issues of trust and quality of care. Most participants said they would participate in research if they were better informed, or if they or a family member had an illness. Improving communication was reported as being important for motivating participation in clinical research. Overall, socioecologically and socioeconomically based domains were shared, whereas historically and/or socioculturally based domains were distinct. Conclusions Using an ethno-medical science model, we demonstrated that it is possible to identify shared barriers and motivators to research participation between 2 distinct cultural groups. This approach can be useful in developing targeted community-based strategies to increase minority participation in clinical trials. PMID:16926762

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

    PubMed

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

    2014-06-05

    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. Copyright © 2014 The American Society of Human Genetics. Published by Elsevier Inc. All rights reserved.

  13. Evolution of universal review and disclosure of MRI reports to research participants.

    PubMed

    Shoemaker, Jody M; Cole, Caitlin; Petree, Linda E; Helitzer, Deborah L; Holdsworth, Mark T; Gluck, John P; Phillips, John P

    2016-03-01

    Although incidental findings (IF) are commonly encountered in neuroimaging research, there is no consensus regarding what to do with them. Whether researchers are obligated to review scans for IF, or if such findings should be disclosed to research participants at all, is controversial. Objective data are required to inform reasonable research policy; unfortunately, such data are lacking in the published literature. This manuscript summarizes the development of a radiology review and disclosure system in place at a neuroimaging research institute and its impact on key stakeholders. The evolution of a universal radiology review system is described, from inception to its current status. Financial information is reviewed, and stakeholder impact is characterized through surveys and interviews. Consistent with prior reports, 34% of research participants had an incidental finding identified, of which 2.5% required urgent medical attention. A total of 87% of research participants wanted their magnetic resonance imaging (MRI) results regardless of clinical significance and 91% considered getting an MRI report a benefit of study participation. A total of 63% of participants who were encouraged to see a doctor about their incidental finding actually followed up with a physician. Reasons provided for not following-up included already knowing the finding existed (14%), not being able to afford seeing a physician (29%), or being reassured after speaking with the institute's Medical Director (43%). Of those participants who followed the recommendation to see a physician, nine (38%) required further diagnostic testing. No participants, including those who pursued further testing, regretted receiving their MRI report, although two participants expressed concern about the excessive personal cost. The current cost of the radiology review system is about $23 per scan. It is possible to provide universal radiology review of research scans through a system that is cost

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

    PubMed Central

    Newington, Lisa; Metcalfe, Alison

    2014-01-01

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

  15. 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.

  16. An empirical study on the preferred size of the participant information sheet in research.

    PubMed

    Antoniou, Evangelia E; Draper, Heather; Reed, Keith; Burls, Amanda; Southwood, Taunton R; Zeegers, Maurice P

    2011-09-01

    Informed consent is a requirement for all research. It is not, however, clear how much information is sufficient to make an informed decision about participation in research. Information on an online questionnaire about childhood development was provided through an unfolding electronic participant sheet in three levels of information. 552 participants, who completed the web-based survey, accessed and spent time reading the participant information sheet (PIS) between July 2008 and November 2009. The information behaviour of the participants was investigated. The first level contained less information than might be found on a standard PIS, the second level corresponded to a standard PIS, and the third contained more information than on a standard PIS. The actual time spent on reading the information provided in three incremental levels and the participants' evaluation of the information were calculated. 77% of the participants chose to access the first level of information, whereas 12% accessed the first two levels, 6% accessed all three levels of information and 23% participated without accessing information. The most accessed levels of information were those that corresponded to the average reading times. The brief information provided in the first level was sufficient for participants to make informed decisions, while a sizeable minority of the participants chose not to access any information at all. This study adds to the debate about how much information is required to make a decision about participation in research and the results may help inform the future development of information sheets by providing data on participants' actual needs when deciding about questionnaire surveys.

  17. 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

  18. Duty to disclose what? Querying the putative obligation to return research results to participants.

    PubMed

    Miller, F A; Christensen, R; Giacomini, M; Robert, J S

    2008-03-01

    Many research ethics guidelines now oblige researchers to offer research participants the results of research in which they participated. This practice is intended to uphold respect for persons and ensure that participants are not treated as mere means to an end. Yet some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support of this view, we argue that current rationales for a duty of disclosure do not form an adequate basis for an ethical imperative. We review policy guidance and scholarly commentary regarding the duty to communicate the results of biomedical, epidemiological and genetic research to research participants and show that there is wide variation in opinion regarding what should be disclosed and under what circumstance. Moreover, we argue that there is fundamental confusion about the notion of "research results," specifically regarding three core concepts: the distinction between aggregate and individual results, amongst different types of research, and across different degrees of result veracity. Even where policy guidance and scholarly commentary have been most forceful in support of an ethical imperative to disclose research results, ambiguity regarding what is to be disclosed confounds ethical action.

  19. Participant comprehension of research for which they volunteer: a systematic review.

    PubMed

    Montalvo, Wanda; Larson, Elaine

    2014-11-01

    Evidence indicates that research participants often do not fully understand the studies for which they have volunteered. The aim of this systematic review was to examine the relationship between the process of obtaining informed consent for research and participant comprehension and satisfaction with the research. Systematic review of published research on informed consent and participant comprehension of research for which they volunteer using the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) Statement as a guide. PubMed, Cumulative Index for Nursing and Allied Health Literature, Cochrane Central Register of Controlled Trails, and Cochrane Database of Systematic Reviews were used to search the literature for studies meeting the following inclusion criteria: (a) published between January 1, 2006, and December 31, 2013, (b) interventional or descriptive quantitative design, (c) published in a peer-reviewed journal, (d) written in English, and (e) assessed participant comprehension or satisfaction with the research process. Studies were assessed for quality using seven indicators: sampling method, use of controls or comparison groups, response rate, description of intervention, description of outcome, statistical method, and health literacy assessment. Of 176 studies identified, 27 met inclusion criteria: 13 (48%) were randomized interventional designs and 14 (52%) were descriptive. Three categories of studies included projects assessing (a) enhanced consent process or form, (b) multimedia methods, and (c) education to improve participant understanding. Most (78%) used investigator-developed tools to assess participant comprehension, did not assess participant health literacy (74%), or did not assess the readability level of the consent form (89%). Researchers found participants lacked basic understanding of research elements: randomization, placebo, risks, and therapeutic misconception. Findings indicate (a) inconsistent assessment of

  20. 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

  1. Process Matters: Successes and Challenges of Recruiting and Retaining Participants for Nursing Education Research.

    PubMed

    Raymond, Christy; Profetto-McGrath, Joanne; Myrick, Florence; Strean, William B

    2017-07-15

    Researchers who study nursing education encounter difficulty when trying to recruit and retain nurse educator participants. Researchers would benefit from knowing more about effective and ineffective sampling strategies and methods to increase the efficiency of the research process. This article outlines the struggles and successes encountered with a mixed methods study that examined nurse educators' critical thinking. Specific examples are interwoven with current literature to uncover some important insights and future recommendations for researchers in nursing education.

  2. 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…

  3. 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…

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

    PubMed Central

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

    2014-01-01

    Setting: Eight operational research (OR) courses run by the International Union Against Tuberculosis and Lung Disease (The Union) and Médecins Sans Frontières (MSF) for participants from low- and middle-income countries. There is a knowledge gap about whether participants continue OR after course completion. Objectives: To determine 1) the research output of participants and their institutions after course completion; 2) the influence of OR fellowships on output; and 3) the output of non-OR fellows stratified by sex, region and staff position. Design: A self-administered e-mail questionnaire survey. Results: Of 83 participants who completed a course, 76 (92%) responded to the questionnaire. Following course completion, 47 (62%) participants completed new research projects, 38 (50%) published papers (vs. 25 [33%] who had published before the course), 42 (55%) presented posters or oral abstracts at conferences, 33 (43%) facilitated at further OR courses, 29 (38%) reviewed scientific papers, 25 (33%) secured further OR funding and 55 (72%) said their institutions were involved in OR implementation or capacity building. OR fellows performed better than non-OR fellows. Among the latter, males and participants from Asia had better output than females and participants from Africa (P < 0.05). Conclusion: The significant proportion of participants continuing to engage in OR after course completion provides encouraging evidence of the long-term value of this capacity building model. PMID:26399205

  5. 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

  6. 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.

  7. Willingness to Participate in Clinical Trials Among African Americans and Whites Previously Exposed To Clinical Research

    PubMed Central

    Durant, Raegan W.; Legedza, Anna T.; Marcantonio, Edward R.; Freeman, Marcie B.; Landon, Bruce E.

    2011-01-01

    The objective of this study was to identify racial differences in willingness to participate in a population with previous exposure to clinical research. A survey instrument was administered to community-dwelling whites and African Americans who were voluntarily receiving a lay research and health education newsletter from a local Boston geriatric clinical research institution. The survey instrument assessed willingness to participate in 3 hypothetical clinical trials (diet trial for obesity, medication trial for hypertension [HTN], chemotherapy trial for cancer). Surveys were received from 473 whites and 279 African Americans (53% response rate) with mean age 74 (SD ± 9). In multivariate models, race was not significantly related to willingness to participate in the multivariate models for any of the 3 trials. Previous trial participation was related to a higher odds of willingness to participate in the diet trial only (OR 1.8, 95% CI 1.2,2.6). Lower levels of trust in one’s primary care physician were associated with a lower odds of willingness to participate in clinical trials for the diet and HTN trials (OR 0.5, 95% CI 0.3,0.8 and OR 0.6, 95% CI 0.3,0.9, respectively). These findings suggest that, within populations previously exposed to clinical research, African Americans are no less willing to participate in clinical trials compared to whites. PMID:21526582

  8. 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

  9. 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

  10. Pediatric dentists' willingness to participate in practice-based research networks.

    PubMed

    Stout, Joseph; Berg, Joel; Riedy, Christine; Scott, JoAnna; Cunha-Cruz, Joana

    2014-01-01

    The purpose of this study was to determine the willingness of pediatric dentists to participate in practice-based research networks (PBRNs) and the factors associated with their willingness. A 29-item cross-sectional survey was collected from pediatric dentists in Washington, Oregon, Idaho, Utah, and Montana. Logistic regression models were used to test for demographic and educational factors associated with a willingness to participate in PBRNs. Of 337 surveys mailed or emailed, 171 (51 percent) were returned. Seventy-four (43 percent) pediatric dentists expressed a willingness to participate in PBRNs. Younger age (P=.01), greater number of regularly read scientific journals (P=.04), frequent utilization of scientific web searches (P=.05), national dental meetings for practice guidance (P=.001), lack of concern about time to participate (P=.01), and quality of data obtained in PBRN studies (P=.03) were associated with increased willingness to participate. Caries prevention was the most important topic in which to conduct more research. There is a broad base of pediatric dentists willing to participate in dental practice-based research networks. Younger age and greater utilization of certain practice guidance resources were associated with increased willingness to participate. Practitioner demand for additional research is in the area of caries prevention.

  11. General practice research--does gender affect the decision to participate?

    PubMed

    Jones, Kay M; Dixon, Maureen E; Dixon, John B

    2012-06-01

    Recruitment of general practitioners for research in Australia is problematic. We aimed to explore general practice demographics and recent research experience for effects on research attitudes and enablers and inhibitors of research participation. A survey was developed and distributed to GPs via two divisions of general practice in Melbourne, Victoria. Seven hundred and fifty-six questionnaires were mailed and 215 (28%) returned; 50% of respondents were women and 51% of all GPs had previously participated in general practice research. Gender differences were found in factors affecting the decision to participate. Women were significantly more concerned about out-of-hours commitment (p<0.001), paperwork volume (p<0.001), recruitment criteria (p=0.009) and research methodology complexity (p=0.016). They were more likely to want to work as a general practice group (p=0.007) and to be inhibited by having to present results to peers (OR 2.4, 95% CI: 1.5-3.8). Research challenges, reduced interest in research participation and feminisation of the workforce have major implications for the future of research in general practice. Systemic changes are needed to address these issues.

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

    PubMed

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

    2006-08-01

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

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

    PubMed Central

    Mikesell, Lisa; Jones, Felica; Khodyakov, Dmitry

    2015-01-01

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

  14. 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

  15. 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

  16. 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.

  17. 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

  18. 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

  19. 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…

  20. 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.…

  1. 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…

  2. 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…

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

    PubMed

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

    2013-01-01

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

  4. 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…

  5. 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…

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

    ERIC Educational Resources Information Center

    Mason, Susan E.

    2005-01-01

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

  7. 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.

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

    ERIC Educational Resources Information Center

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

    2007-01-01

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

  9. 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…

  10. 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…

  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. 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…

  14. Learning from our patients: one participant's impact on clinical trial research and informed consent.

    PubMed

    Daugherty, C K; Siegler, M; Ratain, M J; Zimmer, G

    1997-06-01

    This Perspective includes an essay on modifying phase I clinical trials, written by George Zimmer, who was a professor of English and a commentary on that essay. Professor Zimmer was a cancer patient who participated in the phase I clinical trial program at the University of Chicago. His ideas are eloquently expressed and have had a profound effect on our investigational research for anticancer agents. Although at times his suggestions may seem radical, Professor Zimmer urges us to reconsider the 50-year-old Nuremberg paradigm that participants in human research are ignorant and vulnerable and must be protected. Although we must protect patients who have life-threatening diseases from coercive inducements and misplaced hopes, we must also listen carefully and thoughtfully to our patients. This is particularly true when, as research participants in the face of sacrifice and the threat of a life-ending diagnosis, they have made the effort to express their concerns. With the effect of the acquired immunodeficiency syndrome movement on clinical studies and on drug research and development, a precedent has been set that allows patients to reshape their role as participants in research trials. On a personal level, the essay by Professor Zimmer has had a significant effect on our research methods and, indeed, the focus of our research efforts. Thus, it is with a sense of respect and honor that we share George Zimmer's thoughts and our comments about the influence he has had on our research practices.

  15. 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…

  16. 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…

  17. 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…

  18. 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...

  19. 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...

  20. 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…

  1. 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…

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

    PubMed

    Kaba, Alyshah; Beran, Tanya

    2014-07-01

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

  3. 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…

  4. 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…

  5. 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…

  6. 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…

  7. 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…

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

    PubMed Central

    Tribe, Candice; Webb, Janine

    2012-01-01

    Abstract Background  Cervical cancer screening research has predominantly focused on one type of participation, namely compliance with medical recommendations, and has largely ignored other types of participation. While there is some research that has taken a different approach, findings in this research area are not well integrated under a theoretical framework. Objective  The aim of this study is to show how consideration of a broader definition of participation and better integration of the theoretical conceptualization of participation in cervical cancer screening are both possible and desirable to enable a better understanding of women’s experiences of cervical cancer screening specifically and to improve women’s health generally. Main Conclusion  It is suggested that alternative types of participation in cervical cancer screening warrant further investigation and that a social identity theoretical approach offers one way of integrating such conceptualizations of participation. The paper also argues for more explicit consideration of the role of social processes and of the variables, such as power, social identity and relational justice, which are involved in participation in cervical cancer screening. PMID:22646802

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

    SciTech Connect

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

    1992-11-01

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

  10. 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.

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

    PubMed

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

    2011-04-01

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

  12. 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

  13. Patient-reported conformity of informed consent procedures and participation in clinical research.

    PubMed

    Agoritsas, T; Perneger, T V

    2011-02-01

    There is growing evidence that the quality of informed consent in clinical research is often sub-optimal. To explore the conformity of patient recruitment with recommended informed consent procedures among patients who were invited to participate in a clinical study at a general teaching hospital, and to examine the association between consent procedures and the patients' decision to participate. All inpatients discharged during a 1-month period were invited to complete a mailed survey in which they reported whether they were invited to participate in a study and whether 13 recommended elements of informed consent actually occurred. Among 1303 respondents, 265 (20.3%) reported that they had been invited to participate in a study, and 191 (72.1%) accepted. While the majority of potential participants were fully informed about practical issues related to the study (e.g. what their participation would consist in), <50% were informed of possible risks or benefits, and only 20% about the origin of the study funds. Only 60% reported satisfactory answers to items assessing the overall information process (e.g. explanations were easy to understand). Older and sicker patients reported lower levels of conformity with informed consent procedures, as did patients who refused to participate in a study. Our results confirm that informed consent procedures fail to meet standards for many patients. In particular, consent information should be adapted to the needs of older and sicker patients. Improving the quality of informed consent may increase patients' participation in clinical research.

  14. 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.

  15. 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.

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

    PubMed Central

    Cidro, Jaime; Maar, Marion; Peressini, Sabrina; Schroth, Robert J.; Broughton, John; Jamieson, Lisa; Lawrence, Herenia P.

    2017-01-01

    The Baby Teeth Talk Study (BTT) is a partnership-based research project looking at interventions to prevent early childhood caries (ECC) in First Nations populations in Canada. Community-based researchers (CBRs) conducted preventive and behavioral interventions that targeted expectant mothers and their newborns, over a 3-year period. The work of the CBRs requires a great deal of training and skills to administer the interventions. It also requires a broad set of strategies to meaningfully engage participants to make health-promoting changes in their behavior to prevent ECC in their children. After implementing the intervention, BTT CBRs participated in interviews to explore the strategies they employed to engage participants in the prevention of ECC. CBRs perceived two key strategies as essential for meaningful engagement with BTT participants. First, CBRs indicated that their shared experiences through motherhood, First Nations identity, age, and childhood experience provided a positive foundation for dialog with participants that lead to build trust and rapport. Second, supportive interpersonal and culturally based communication skills of the CBR provided further foundation to engage with participants from a strength-based approach. For example, the CBRs knew how to effectively communicate in ways such as being gentle, non-intrusive, and avoiding any perception of judgment when discussing oral health behavior. In First Nations health research, CBRs can provide an essential link in engaging participants and the community for improvements in health. Researchers should carefully consider characteristics such as shared experience and ability to understand cultural communication styles when hiring CBRs in order to build a solid foundation of trust with research participants. PMID:28713800

  17. Promising and Established Investigators' Experiences Participating in the National Athletic Trainers' Association Foundation Research Mentor Program.

    PubMed

    Nottingham, Sara L; Mazerolle, Stephanie M; Barrett, Jessica L

    2017-04-01

      Mentorship is a helpful resource for individuals who transition from doctoral student to tenure-track faculty member. The National Athletic Trainers' Association (NATA) Research & Education Foundation offers a Research Mentor Program to provide mentorship to promising investigators, particularly as they work to establish independent lines of research.   To gain the perspectives of promising and established investigators on their participation in the NATA Foundation Research Mentor Program.   Qualitative, phenomenological research.   Higher education institutions.   Seven promising investigators (5 women, 2 men) and 7 established investigators (2 women, 5 men), all of whom had completed the NATA Foundation Research Mentor Program. Data Collection and Analysis We developed and piloted intervi: ew guides designed to gain participants' perspectives on their experiences participating in the NATA Foundation Research Mentor Program. Semistructured telephone interviews were completed with each individual and transcribed verbatim. Data were analyzed using a phenomenological approach, and saturation was obtained. Trustworthiness was established with the use of member checking, multiple-analyst triangulation, and data-source triangulation.   Three themes emerged from the interviews: (1) motivation, (2) collaboration, and (3) resources. Participants were motivated to become involved because they saw the value of mentorship, and mentees desired guidance in their research. Participants believed that collaboration on a project contributed to a positive relationship, and they also desired additional program and professional resources to support novice faculty.   Promising and established investigators should be encouraged to engage in mentoring relationships to facilitate mentees' research agendas and professional development. The NATA Foundation and athletic training profession may consider providing additional resources for novice faculty, such as training on

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

    PubMed Central

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

    2013-01-01

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

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

    PubMed

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

    2016-11-01

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

  20. 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

  1. Climbing the "ladder of participation": engaging experiential youth in a participatory research project.

    PubMed

    Funk, Anna; Van Borek, Natasha; Taylor, Darlene; Grewal, Puneet; Tzemis, Despina; Buxton, Jane

    2012-05-24

    Street-involved youth are at high risk for acquiring HIV and hepatitis C infection due to potential engagement in high-risk behaviours, including injection drug use. The Youth Injection Prevention (YIP) Project sought to identify factors that prevented street-involved youth from moving into injection drug use in Vancouver, BC. Our project used a participatory research orientation to study these factors. This paper describes the level of participation observed among the street-involved youth taking part in our project. The YIP project employed street-involved youth as co-researchers. To assess the level of participation among the co-researchers, we applied Roger Hart's "Ladder of Youth Participation". Each advancing rung in the ladder represents a higher level of participation. We compared the youth's involvement in the project to the rungs in Roger Hart's tool. Throughout the duration of the project, the youth's participation increased. Initially the youth had low levels of participation as they were hired based on their life experiences and initially consulted and informed. Over the course of the project, team- and skill-building activities took place. This helped the project environment evolve into a safe space where youth felt comfortable to engage at the highest levels of participation. The YIP Project was successful in being a highly participatory research project. In a safe and open environment, the youth felt comfortable to question and take on initiatives that went beyond the academic researcher's initial expectations. This project highlights the success of engaging street-involved youth in participatory research.

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

    PubMed Central

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

    2016-01-01

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

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

    PubMed

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

    2011-01-01

    A major ethical concern in research with criminal offenders is the potential for abuse due to coercive influences that may adversely affect offenders' capacity to give voluntary consent to participate in research conducted in correctional settings. Despite this concern, to date there have been almost no systematic scientific investigations of the extent to which offenders themselves perceive that coercion occurs in these settings or that it is likely to influence their decisions about research participation. In a sample of over 600 ethnically diverse men and women recruited from various prisons and community corrections facilities in Texas and Florida, we used a vignette-based survey concerning a hypothetical research project to measure and compare offenders' global perceptions of coercive processes, as well as the differential salience and perceived coercive influence of specific factors (e.g., coercion by other inmates, inducements from staff). Somewhat surprisingly, across multiple outcome measures our participants on average reported relatively little in the way of significant coercive influences on their capacity to make voluntary decisions concerning research participation. Implications and directions for future research on coercive influences in offender research are discussed. 2011 John Wiley & Sons, Ltd.

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

    PubMed

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

    2016-06-01

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

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

    PubMed

    Ramirez, Amelie G; Talavera, Gregory A; Marti, Jose; Penedo, Frank J; Medrano, Martha A; Giachello, Aida L; Pérez-Stable, Eliseo J

    2006-10-15

    Hispanics are affected by many health care disparities. The National Cancer Institute (NCI), through its Special Populations Branch, is supporting networking and capacity-building activities designed to increase Hispanic participation and leadership in cancer research. Redes En Acción established a national network of cancer research centers, community-based organizations, and federal partners to facilitate opportunities for junior Hispanic scientists to participate in training and research projects on cancer control. Since 2000, Redes En Acción has established a network of more than 1800 Hispanic leaders involved in cancer research and education. The project has sustained 131 training positions and submitted 29 pilot projects to NCI for review, with 16 awards for a total of $800,000, plus an additional $8.8 million in competing grant funding based on pilot study results to date. Independent research has leveraged an additional $32 million in non-Redes funding, and together the national and regional network sites have participated in more than 1400 community and professional awareness events. In addition, the program conducted extensive national survey research that provided the basis for the Redes En Acción Latino Cancer Report, a national agenda on Hispanic cancer issues. Redes En Acción has increased participation in cancer control research, training, and awareness among Hispanic scientists and within Hispanic communities. Cancer 2006. (c) 2006 American Cancer Society.

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

    PubMed

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

    2016-03-01

    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. 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. 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. 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. © 2016 Sigma Theta Tau International.

  8. 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

  9. Feasibility study of a randomized controlled trial of a telephone-delivered problem-solving-occupational therapy intervention to reduce participation restrictions in rural breast cancer survivors undergoing chemotherapy.

    PubMed

    Hegel, Mark T; Lyons, Kathleen D; Hull, Jay G; Kaufman, Peter; Urquhart, Laura; Li, Zhongze; Ahles, Tim A

    2011-10-01

    Breast cancer patients receiving adjuvant chemotherapy often experience functional effects of treatment that limit participation in life activities. The purpose of this study was to examine the feasibility of conducting a randomized controlled trial (RCT) of a novel intervention for these restrictions, determine acceptability of the intervention, and preliminarily assess its effects. A pilot RCT of a telephone-delivered Problem-solving and Occupational Therapy intervention (PST-OT) to improve participation restrictions in rural breast cancer patients undergoing chemotherapy. Thirty-one participants with Stages 1-3 breast cancer were randomized to 6 weekly sessions of PST-OT (n = 15) and usual care (n = 16). The primary study outcome was the feasibility of conducting the trial. Secondary outcomes were functional, quality of life and emotional status as assessed at baseline, 6 and 12 weeks. Of 46 patients referred 31 were enrolled (67% recruitment rate), of which 6 participants withdrew (81% retention rate). Twenty-four participants completed all study-related assessments (77%). Ninety-two percent of PST-OT participants were highly satisfied with the intervention, and 92% reported PST-OT to be helpful/very helpful for overcoming participation restrictions. Ninety-seven percent of planned PST-OT treatment sessions were completed. Completion rates for PST-OT homework tasks were high. Measures of functioning, quality of life, and emotional state favored the PST-OT condition. This pilot study suggests that an RCT of the PST-OT intervention is feasible to conduct with rural breast cancer patients undergoing adjuvant chemotherapy and that PST-OT may have positive effects on function, quality of life, and emotional state. 2010 John Wiley & Sons, Ltd.

  10. Feasibility Study of a Randomized Controlled Trial of a Telephone-Delivered Problem Solving-Occupational Therapy Intervention to Reduce Participation Restrictions in Rural Breast Cancer Survivors Undergoing Chemotherapy

    PubMed Central

    Hegel, Mark T.; Lyons, Kathleen D.; Hull, Jay G.; Kaufman, Peter; Urquhart, Laura; Li, Zhongze; Ahles, Tim A.

    2010-01-01

    Objective Breast cancer patients receiving adjuvant chemotherapy often experience functional effects of treatment that limit participation in life activities. The purpose of this study was to examine the feasibility of conducting a randomized controlled trial (RCT) of a novel intervention for these restrictions, determine acceptability of the intervention, and preliminarily assess its effects. Methods A pilot RCT of a telephone-delivered Problem Solving and Occupational Therapy intervention (PST-OT) to improve participation restrictions in rural breast cancer patients undergoing chemotherapy. Thirty-one participants with Stages 1-3 breast cancer were randomized to 6 weekly sessions of PST-OT (n=15) and Usual Care (n=16). The primary study outcome was the feasibility of conducting the trial. Secondary outcomes were functional, quality of life and emotional status as assessed at baseline, 6 weeks and 12 weeks. Results Of 46 patients referred 31 were enrolled (67% recruitment rate), of which 6 participants withdrew (81% retention rate). Twenty-four participants completed all study-related assessments (77%). Ninety-two percent of PST-OT participants were highly satisfied with the intervention, and 92% reported PST-OT to be helpful/very helpful for overcoming participation restrictions. Ninety-seven percent of planned PST-OT treatment sessions were completed. Completion rates for PST-OT homework tasks were high. Measures of functioning, quality of life and emotional state favored the PST-OT condition. Conclusion This pilot study suggests that an RCT of the PST-OT intervention is feasible to conduct with rural breast cancer patients undergoing adjuvant chemotherapy and that PST-OT may have positive effects on function, quality of life, and emotional state. PMID:20821373

  11. [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. © Georg Thieme Verlag KG Stuttgart · New York.

  12. 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.

  13. Protection of health research participants in the United States: a review of two cases.

    PubMed

    Douglass, Alison; Crampton, Peter

    2004-06-01

    Two research-related deaths and controversies in the United States during recent years have raised public concern over the safety of research participants. This paper explores the reasons why, in two studies, there was a failure of ethical oversight. The issues exposed by these failures have international relevance as they could possibly occur anywhere where human health research is carried out. Five factors that contributed to these failures are highlighted: 1. failure to support and resource research ethics committees; 2. failure of the research oversight process to adequately assess the risks and benefits of research, while giving undue emphasis to informed consent; 3. conflicts of interest arising from financial relationships and research ethics committee membership; 4. lack of consistent oversight of privately funded research; and 5. incompetent or intentional failure to adhere by ethical guidelines. There is considerable headway to be made in the United States, as in other countries, in the fostering and maintenance of robust systems of human research oversight.

  14. Maximizing clinical research participation in vulnerable older persons: identification of barriers and motivators.

    PubMed

    Marcantonio, Edward R; Aneja, Jasneet; Jones, Richard N; Alsop, David C; Fong, Tamara G; Crosby, Gregory J; Culley, Deborah J; Cupples, L Adrienne; Inouye, Sharon K

    2008-08-01

    To identify barriers and motivators to participation in long-term clinical research by high-risk elderly people and to develop procedures to maximize recruitment and retention. Quantitative and qualitative survey. Academic primary care medicine and pre-anesthesia testing clinics. Fifty patients aged 70 and older, including 25 medical patients at high risk of hospitalization and 25 patients with planned major surgery. Fifteen- to 20-minute interviews involved open- and closed-ended questions guided by an in-depth script. Two planned study protocols were presented to each participant. Both involved serial neuropsychological assessments, blood testing, and magnetic resonance brain imaging (MRI); one added lumbar puncture (LP). Participants were asked whether they would be willing to participate in these protocols, rated barriers and incentives to participation, and were probed with open-ended questions. Of 50 participants (average age 78, 44% male, 40% nonwhite), 32 (64%) expressed willingness to participate in the LP-containing protocol, with LP cited as the strongest disincentive. Thirty-eight (76%) expressed willingness to participate in the protocol without LP, with phlebotomy and long interviews cited as the strongest disincentives. Altruism was a strong motivator for participation, whereas transportation was a major barrier. Study visits at home, flexible appointment times, assessments shorter than 75 minutes, and providing transportation and free parking were strategies developed to maximize study participation. Vulnerable elderly people expressed a high rate of willingness to participate in an 18-month prospective study. Participants identified incentives and barriers that enabled investigators to develop procedures to maximize recruitment and retention.

  15. A 2-1-1 research collaboration: participant accrual and service quality indicators.

    PubMed

    Eddens, Katherine S; Alcaraz, Kassandra I; Kreuter, Matthew W; Rath, Suchitra; Greer, Regina

    2012-12-01

    In times of crises, 2-1-1 serves as a lifeline in many ways. These crises often cause a spike in call volume that can challenge 2-1-1's ability to meet its service quality standards. For researchers gathering data through 2-1-1s, a sudden increase in call volume might reduce accrual as 2-1-1 has less time to administer study protocols. Research activities imbedded in 2-1-1 systems may affect directly 2-1-1 service quality indicators. Using data from a 2-1-1 research collaboration, this paper examines the impact of crises on call volume to 2-1-1, how call volume affects research participant accrual through 2-1-1, and how research recruitment efforts affect 2-1-1 service quality indicators. t-tests were used to examine the effect of call volume on research participant accrual. Linear and logistic regressions were used to examine the effect of research participant accrual on 2-1-1 service quality indicators. Data were collected June 2010-December 2011; data were analyzed in 2012. Findings from this collaboration suggest that crises causing spikes in call volume adversely affect 2-1-1 service quality indicators as well as accrual of research participants. Administering a brief (2-3 minute) health risk assessment did not affect service quality negatively, but administering a longer (15-18 minute) survey had a modest adverse effect on these indicators. In 2-1-1 research collaborations, both partners need to understand the dynamic relationship among call volume, research accrual, and service quality and adjust expectations accordingly. If research goals include administering a longer survey, increased staffing of 2-1-1 call centers may be needed to avoid compromising service quality. Copyright © 2012 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.

  16. Cost-effectiveness of health research study participant recruitment strategies: a systematic review.

    PubMed

    Huynh, Lynn; Johns, Benjamin; Liu, Su-Hsun; Vedula, S Swaroop; Li, Tianjing; Puhan, Milo A

    2014-10-01

    A large fraction of the cost of conducting clinical trials is allocated to recruitment of participants. A synthesis of findings from studies that evaluate the cost and effectiveness of different recruitment strategies will inform investigators in designing cost-efficient clinical trials. To systematically identify, assess, and synthesize evidence from published comparisons of the cost and yield of strategies for recruitment of participants to health research studies. We included randomized studies in which two or more strategies for recruitment of participants had been compared. We focused our economic evaluation on studies that randomized participants to different recruitment strategies. We identified 10 randomized studies that compared recruitment strategies, including monetary incentives (cash or prize), direct contact (letters or telephone call), and medical referral strategies. Only two of the 10 studies compared strategies for recruiting participants to clinical trials. We found that allocating additional resources to recruit participants using monetary incentives or direct contact yielded between 4% and 23% additional participants compared to using neither strategy. For medical referral, recruitment of prostate cancer patients by nurses was cost-saving compared to recruitment by consultant urologists. For all underlying study designs, monetary incentives cost more than direct contact with potential participants, with a median incremental cost per recruitment ratio of Int$72 (Int$-International dollar, a theoretical unit of currency) for monetary incentive strategy compared to Int$28 for direct contact strategy. Only monetary incentives and source of referral were evaluated for recruiting participants into clinical trials. We did not review studies that presented non-monetary cost or lost opportunity cost. We did not adjust for the number of study recruitment sites or the study duration in our economic evaluation analysis. Systematic and explicit reporting of

  17. Patient participation in postoperative care activities in patients undergoing total knee replacement surgery: Multimedia Intervention for Managing patient Experience (MIME). Study protocol for a cluster randomised crossover trial.

    PubMed

    McDonall, Jo; de Steiger, Richard; Reynolds, John; Redley, Bernice; Livingston, Patricia; Botti, Mari

    2016-07-18

    Patient participation is an important indicator of quality care. Currently, there is little evidence to support the belief that participation in care is possible for patients during the acute postoperative period. Previous work indicates that there is very little opportunity for patients to participate in care in the acute context. Patients require both capability, in terms of having the required knowledge and understanding of how they can be involved in their care, and the opportunity, facilitated by clinicians, to engage in their acute postoperative care. This cluster randomised crossover trial aims to test whether a multimedia intervention improves patient participation in the acute postoperative context, as determined by pain intensity and recovery outcomes. A total of 240 patients admitted for primary total knee replacement surgery will be invited to participate in a cluster randomised, crossover trial and concurrent process evaluation in at least two wards at a major non-profit private hospital in Melbourne, Australia. Patients admitted to the intervention ward will receive the multimedia intervention daily from Day 1 to Day 5 (or day of discharge, if prior). The intervention will be delivered by nurses via an iPad™, comprising information on the goals of care for each day following surgery. Patients admitted to the control ward will receive usual care as determined by care pathways currently in use across the organization. The primary endpoint is the "worst pain experienced in the past 24 h" on Day 3 following TKR surgery. Pain intensity will be measured using the numerical rating scale. Secondary outcomes are interference of pain on activities of daily living, length of stay in hospital, function and pain following TKR surgery, overall satisfaction with hospitalisation, postoperative complications and hospital readmission. The results of this study will contribute to our understanding of the effectiveness of interventions that provide knowledge and

  18. Using Facebook and participant information clips to recruit emergency nurses for research.

    PubMed

    Child, Rebekah Jay Howerton; Mentes, Janet C; Pavlish, Carol; Phillips, Linda R

    2014-07-01

    To examine the use of social networking sites in recruiting research participants. Workplace violence is an important issue for staff and patients. One workplace that reports the highest levels of violence is the emergency department. The ability to research issues such as workplace violence in real time is important in addressing them expeditiously, and social media can be used to advertise and recruit research subjects, implement studies and disseminate information. The experience of recruiting subjects through social networks, specifically Facebook, and the use of participant information clips (PICs) for advertising. A brief discussion of the history of advertising and communication using the internet is presented to provide an understanding of the trajectory of social media and implications for recruitment in general. The paper then focuses on the lead author's experience of recruiting subjects using Facebook, including its limitations and advantages, and her experience of using participant information clips. The low cost of advertising and recruiting participants this way, as well as the convenience provided to participants, resulted in almost half the study's total participants being obtained within 72 hours. Using Facebook to target a younger age range of nurses to participate in a study was successful and yielded a large number of completed responses in a short time period at little cost to the researcher. Recording the PIC was cheap, and posting it and a link to the site on pre-existing group pages was free, providing valuable viral marketing and snowball recruiting. Future researchers should not overlook using social network sites for recruitment if the demographics of the desired study population and subject matter permit it.

  19. 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).

  20. 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.

  1. Non-participation in sports injury research: why football players choose not to be involved

    PubMed Central

    Braham, R; Finch, C; McCrory, P

    2004-01-01

    Methods: During the preseason, 10 Australian football clubs volunteered 23 teams to participate in a protective equipment randomised controlled trial, the Australian Football Injury Prevention Project (AFIPP). All players from these teams were invited to participate. Players who did not agree to participate in AFIPP were surveyed about their reasons for non-involvement. Results: 110 football players (response rate 63.6%) completed the non-responder survey and cited the two main reasons behind non-involvement in the project as "I did not know about the project" (39.4%) and "I was not at training when the research team visited" (36.5%). Conclusions and implications: Preseason may not be the best time for maximal player recruitment in community based sports safety research. Enhanced communication between researchers and players at community level football clubs during the recruitment phase is likely to improve response rates. PMID:15039271

  2. Comparisons of the utility of researcher-defined and participant-defined successful ageing.

    PubMed

    Brown, Lynsey J; Bond, Malcolm J

    2016-03-01

    To investigate the impact of different approaches for measuring 'successful ageing', four alternative researcher and participant definitions were compared, including a novel measure informed by cluster analysis. Rates of successful ageing were explored, as were their relative associations with age and measures of successful adaptation, to assess construct validity. Participants, aged over 65, were recruited from community-based organisations. Questionnaires (assessing successful ageing, lifestyle activities and selective optimisation with compensation) were completed by 317 individuals. Successful ageing ranged from 11.4% to 87.4%, with higher rates evident from participant definitions. Though dependent upon the definition, successful agers were typically younger, reported greater engagement with lifestyle activities and more frequent optimisation. While the current study suggested an improved classification algorithm using a common research definition, future research should explore how subjective and objective aspects of successful ageing may be combined to derive a measure relevant to policy and practice. © 2016 AJA Inc.

  3. 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.

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

    PubMed

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

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

  5. 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

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

    PubMed

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

    2009-07-01

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

  7. 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.

  8. 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.

  9. 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…

  10. Strategies for moving towards equity in recruitment of rural and Aboriginal research participants.

    PubMed

    Wong, Sabrina T; Wu, Leena; Boswell, Brooke; Housden, Laura; Lavoie, Josee

    2013-01-01

    Equitable recruitment strategies, designed to ensure improved opportunities to participate in the research, are needed to include First Nations (FN) communities. The purpose of this article is to report on a set of successful strategies trialed with rural and FN communities in Canada. The strategies discussed were designed as part of a larger mixed-method study examining the effectiveness of Group Medical Visits (GMVs) on the quality of primary healthcare (PHC) in both FN reserve and northern communities in British Columbia (BC). Community partners and the study's decision-maker partners helped to identify and recruit primary care practices and reserve communities who were offering GMVs. Eleven communities (6 rural and 5 FN reserve) within the Northern Health Authority, BC participated in the study. Participants completed a survey either in person or via telephone. Content analysis was conducted on team meeting and field notes, focusing on issues related to the data collection process. Financial analysis was conducted on monetary resources spent on recruitment efforts in the various communities. Data were recorded regarding the number of times potential participants were contacted and mode of interview. Descriptive statistics were used to examine whether there were differences by mode of data collection, gender, and FN status. Logistic regression was used to examine whether FN status remained statistically significant after controlling for sex, education, employment status, age and health status. Once people were contacted, participation rate was 68% with 269 (n=90 men, n=179 women) people. Of those who participated in the survey, 42% were from FN communities. Content analysis revealed two overarching categories: (1) communication and coordination of the geographically dispersed research team and participating communities was maintained using synchronous and asynchronous methods; and (2) flexibility was needed to tailor recruitment strategies. Financial resources

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

    PubMed Central

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

    2011-01-01

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

  12. 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

  13. 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

  14. Online Discussion Effects on Intention to Participate in Genetic Research: A Longitudinal Experimental Study

    PubMed Central

    Kim, Sojung Claire; Cappella, Joseph N.; Price, Vincent

    2016-01-01

    Objective The National Human Genome Research Institute has emphasized community engagement and public dialogue in the U. S. on issues related to genetics. This study examines how online discussions among the U.S. public directly or indirectly influence psychosocial constructs of the Theory of Planned Behavior (TPB), including intention to take part in genetic research. Design After completing the baseline questionnaire, participants (n = 3,754) were randomly assigned to one of the following three groups: the discussion group, the pre/post only group, and the End-Of-Project group. The discussion group (n = 1,824) was invited and participated in up to three online discussions, which were held from November 2008 to May 2009. Main Outcome Measures Behavioral intention, beliefs, attitudes, subjective norm, and perceived behavioral control variables were assessed. Results The most interesting finding was that those participating in online discussions had fewer negative beliefs about volunteering for genetic research, which in turn, contributed to more positive attitudes, increased injunctive and descriptive norms, and enhanced behavioral control. These relationships, then, were associated with higher intention to participate in genetic research. Conclusion These findings suggest that continuous public discussions seem to positively affect volunteer intention for genetic research through ameliorating fears of negative consequences. PMID:26979570

  15. Online discussion effects on intention to participate in genetic research: A longitudinal experimental study.

    PubMed

    Kim, Sojung Claire; Cappella, Joseph N; Price, Vincent

    2016-09-01

    The National Human Genome Research Institute has emphasised community engagement and public dialogue in the U.S. on issues related to genetics. This study examines how online discussions among the U.S. public directly or indirectly influence psychosocial constructs of the Theory of Planned Behavior, including intention to take part in genetic research. After completing the baseline questionnaire, participants (n = 3754) were randomly assigned to one of the following three groups: the discussion group, the pre-/post-only group and the End-of-Project group. The discussion group (n = 1824) was invited and participated in up to three online discussions, which were held from November 2008 to May 2009. Behavioural intention, beliefs, attitudes, subjective norm and perceived behavioural control variables were assessed. The most interesting finding was that those participating in online discussions had fewer negative beliefs about volunteering for genetic research, which in turn contributed to more positive attitudes, increased injunctive and descriptive norms and enhanced behavioural control. These relationships, then, were associated with higher intention to participate in genetic research. These findings suggest that continuous public discussions seem to positively affect volunteer intention for genetic research through ameliorating fears of negative consequences.

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

    PubMed

    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.

  17. 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…

  18. 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…

  19. 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…

  20. Motivations of children and their parents to participate in drug research: a systematic review.

    PubMed

    Tromp, Krista; Zwaan, C Michel; van de Vathorst, Suzanne

    2016-05-01

    Information on motivations for research participation, may enable professionals to better tailor the process of recruitment and informed consent to the perspective of parents and children. Therefore, this systematic review assesses motivating and discouraging factors for children and their parents to decide to participate in clinical drug research. Studies were identified from searches in 6 databases. Two independent reviewers screened and selected relevant articles. Results were aggregated and presented by use of qualitative metasummary. 38 studies fulfilled the selection criteria and were of sufficient quality for inclusion in the qualitative metasummary. Most mentioned motivating factors for parents were: health benefit for child, altruism, trust in research, and relation to researcher. Most mentioned motivating factors for children were: personal health benefit, altruism and increasing comfort. Fear of risks, distrust in research, logistical aspects and disruption of daily life were mentioned most by parents as discouraging factors. Burden and disruption of daily life, feeling like a "guinea pig" and fear of risks were most mentioned as discouraging factors by children. Paying attention to these motivating and discouraging factors of children and their parents during the recruitment and informed consent process in drug research increases the moral and instrumental value of informed consent. • This systematic review pools the existing empirical literature on motivations of minors and their parents to consent or dissent to participation in clinical drug research. • The most mentioned motivating and discouraging factors for children and their parents to consent to participation in clinical drug research are identified aggregated and presented by use of qualitative metasummary. What is new: • This information can be used to adapt the research protocol, recruitment, and informed consent/assent process to the needs of children and their parents.

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

    PubMed

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

    2013-01-01

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

  2. 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

  3. Increasing Participation in Prevention Research: Strategies for Youth, Parents and Schools

    PubMed Central

    Hooven, Carole; Walsh, Elaine; Willgerodt, Mayumi; Salazar, Amy

    2012-01-01

    Topic Subject participation is a critical concern for clinicians and researchers involved in prevention programs, especially for intensive interventions that require randomized assignment and lengthy youth and parent involvement. Purpose This paper describes details of an integrated approach used to recruit and retain at-risk high school youth, their parents and high schools to two different comprehensive “indicated” prevention programs. Sources used Parent and youth recruitment and retention data for the two studies is provided in support of the approach described. A coordinated, multi-level approach, organized around cross-cutting issues, is described in detail as a response to the challenges of including vulnerable populations in intervention research. Conclusion Methods are relevant to nurse clinicians who deliver prevention programs, and important to clinical research that relies upon adequate participation in research programs. PMID:21810129

  4. The limitations of language: male participants, stoicism, and the qualitative research interview.

    PubMed

    Affleck, William; Glass, Kc; Macdonald, Mary Ellen

    2013-03-01

    The semistructured, open-ended interview has become the gold standard for qualitative health research. Despite its strengths, the long interview is not well suited for studying topics that participants find difficult to discuss, or for working with those who have limited verbal communication skills. A lack of emotional expression among male research participants has repeatedly been described as a significant and pervasive challenge by health researchers in a variety of different fields. This article explores several prominent theories for men's emotional inexpression and relates them to qualitative health research. The authors argue that investigators studying emotionally sensitive topics with men should look beyond the long interview to methods that incorporate other modes of emotional expression. This article concludes with a discussion of several such photo-based methods, namely, Photovoice, Photo Elicitation, and Visual Storytelling.

  5. 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

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

    PubMed

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

    2008-03-01

    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.

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

    PubMed

    Abshire, Martha; Dinglas, Victor D; Cajita, Maan Isabella A; Eakin, Michelle N; Needham, Dale M; Himmelfarb, Cheryl Dennison

    2017-02-20

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

  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. 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.

  10. Preparatory education for cancer patients undergoing surgery: A systematic review of volume and quality of research output over time.

    PubMed

    Waller, Amy; Forshaw, Kristy; Bryant, Jamie; Carey, Mariko; Boyes, Allison; Sanson-Fisher, Rob

    2015-05-23

    To determine the volume and scope of research output examining preparation of patients for people undergoing cancer-related surgical treatment, and the impact of pre-operative education on patient outcomes and health care utilisation. Medline, EMBASE, PsychINFO databases were systematically searched. Eligible papers were coded as data-based or non-data-based. Data-based papers were further classified as descriptive, measurement or intervention studies. Methodological quality and effectiveness of intervention studies were assessed using Cochrane Effective Practice and Organisation of Care (EPOC) criteria. We identified 121 eligible papers. The number of publications significantly increased over time. Most were data-based (n=99) and descriptive (n=83). Fourteen intervention studies met EPOC design criteria. Face-to-face interventions reported benefits for anxiety (5/7), satisfaction (1/1), knowledge (3/3) and health care costs (1/1). Audio-visual and multi-media interventions improved satisfaction (1/1) and knowledge (2/3), but not anxiety (0/3). Written interventions were mixed. Descriptive studies dominate the literature examining preoperative education in oncology populations, with few rigorous intervention studies. Pre-operative education can improve satisfaction, knowledge and reduce anxiety. Further work should be directed at multi-modal interventions, and those that include the caregiver, given their role in assisting patients to prepare and recover from surgery. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

  11. 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

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

    PubMed Central

    Papke, Gina; Greenwald, Mark K.

    2011-01-01

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

  13. Motivational assessment of non-treatment buprenorphine research participation in heroin dependent individuals.

    PubMed

    Papke, Gina; Greenwald, Mark K

    2012-06-01

    Heroin abuse remains an important public health problem, particularly in economically disadvantaged areas. Insight into this problem is gained from interviewing addicted individuals. However, we lack systematic data on factors that motivate heroin users to participate in non-treatment research that offers both financial incentives (compensation) and non-financial incentives (e.g., short-term medication). To better understand the relative importance of several types of personal motivations to participate in non-treatment buprenorphine research, and to relate self-motivations to social, economic, demographic and drug use factors. Heroin dependent volunteers (N=235 total; 57 female and 178 male; 136 African American, 86 Caucasian, and 13 Other) applied for non-therapeutic buprenorphine research in an urban outpatient setting from 2004 to 2008. We conducted a semi-structured behavioral economic interview, after which participants ranked 11 possible motivations for research participation. Although the study was repeatedly described as non-treatment research involving buprenorphine, participants often ranked some treatment-related motivations as important (wanting to reduce/stop heroin use, needing a medication to get stabilized/detoxify). Some motivations correlated with income, heroin use, and years since marketing of buprenorphine. Two dimensions emerged from principal component analysis of motivation rankings: (1) treatment motivation vs. greater immediate needs and (2) commitment to trying alternatives vs. a more accepting attitude toward traditional interventions. In summary, heroin addicts' self-motivations to engage in non-therapeutic research are complex--they value economic gain but not exclusively or primarily--and relate to variables such as socioeconomic factors and drug use. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

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

    PubMed

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

    2016-10-01

    People with mental illness have a significantly lower life expectancy and higher rates of chronic physical illnesses than the general population. Health care system reform to improve access and quality is greatly needed to address this inequity. The inclusion of consumers of mental health services as co-investigators in research is likely to enhance service reform. In light of this, the current paper reviews mental health consumer focussed research conducted to date, addressing the neglect of physical health in mental health care and initiatives with the aim of improving physical health care. The international literature on physical healthcare in the context of mental health services was searched for articles, including mental health consumers in research roles, via Medline, CINAHL and Google Scholar, in October 2015. Four studies where mental health consumers participated as researchers were identified. Three studies involved qualitative research on barriers and facilitators to physical health care access, and a fourth study on developing technologies for more effective communication between GPs and patients. This review found that participatory mental health consumer research in physical health care reform has only become visible in the academic literature in 2015. Heightened consideration of mental health consumer participation in research is required by health care providers and researchers. Mental health nurses can provide leadership in increasing mental health consumer research on integrated care directed towards reducing the health gap between people with and without mental illness. © 2016 Australian College of Mental Health Nurses Inc.

  15. Renegotiating environments to achieve participation: A metasynthesis of qualitative chronic disease research.

    PubMed

    Hand, Carri L; Wilkins, Seanne; Letts, Lori J; Law, Mary C

    2013-10-01

    Qualitative studies describe environmental influences on participation in adults with chronic disease, but translating these findings into practice can be difficult. This study sought to synthesize qualitative research findings regarding the influence of environmental factors on participation among adults with chronic disease. Searching revealed 31 I articles that describe the link between environment and participation for adults with osteoarthritis, rheumatoid arthritis, diabetes mellitus, heart disease, cancer, chronic obstructive pulmonary disease, and/or depression. Study findings were analyzed using metasynthesis methods to identify themes. For adults with chronic disease, renegotiating their environments and occupations to achieve, maintain, or rework their participation involves understanding support processes, being ordinary and able, navigating systems, and navigating physical environments. Key areas that occupational therapy interventions can target are facilitating constructive collaboration between client and support person, fostering connections with others, recognizing cultural pressure to be ordinary and able, and advocating for supportive policy and practice.

  16. 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.

  17. 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.

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

    ERIC Educational Resources Information Center

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

    2011-01-01

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

  19. Predicting the Effects of Sexual Assault Research Participation: Reactions, Perceived Insight, and Help-Seeking.

    PubMed

    Kirkner, Anne; Relyea, Mark; Ullman, Sarah E

    2016-09-25

    This study examined effects of participating in survey research for women sexual assault survivors with other trauma histories to understand the role of study participation on perceived insight and long-term help-seeking behaviors. A diverse sample of 1,863 women from a large Midwestern city participated in a 3-year study on women's experiences with sexual assault. Regression analyses were conducted to (a) examine predictors of immediate positive and negative reactions to survey participation and (b) assess the impact of the survey on perceived insight and women's long-term help-seeking behavior. Overall, most women in the study had a higher positive than negative reaction to the survey (92%), with a significant proportion indicating they sought additional services as a result of participation (55%). Women with child sexual abuse (CSA), more emotion dysregulation, and more characterological self-blame had more negative reactions to the survey, whereas those with more education and individual adaptive coping had more positive reactions. Women who said they gained insight from answering survey questions were most likely to seek additional help. This study extends the literature by examining cumulative trauma and postassault symptoms in relation to the effects of survey participation. This is also the first study of women sexual assault survivors to find a relationship between gaining perceived insight from research and subsequent help-seeking. Participating in sexual assault research may help survivors gain greater insight into their recovery, which can lead them to seek out more resources for their ongoing trauma-related problems. © The Author(s) 2016.

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

    PubMed Central

    Shapshay, Sandra; Pimple, Kenneth D

    2007-01-01

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