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Research Participation (research + participation)
Selected AbstractsRESEARCH PARTICIPATION AND THE RIGHT TO WITHDRAWBIOETHICS, Issue 2 2005SARAH J.L. EDWARDS ABSTRACT Most ethics committees which review research protocols insist that potential research participants reserve unconditional or absolute ,right' of withdrawal at any time and without giving any reason. In this paper, I examine what consent means for research participation and a sense of commitment in relation to this right to withdraw. I suggest that, once consent has been given (and here I am excluding incompetent minors and adults), participants should not necessarily have unconditional or absolute rights to withdraw. This does not imply that that there should be a complete absence of rights, or, indeed, an abandonment of the right to withdraw. The point of this paper is to show that the supposed unconditional or absolute nature of these rights may be self-defeating and so fail to respect the autonomy of participants. In addition, and on a more positive note, I suggest that, attaching certain conditions on the right to withdraw, may better respect the autonomy of these participants by underlining the idea that autonomy is more than mere whim or indifference to the fate of others. On the contrary, research staff are currently unable to ,push' participants, who may merely have logistical difficulties unrelated to the research itself, but who really want to stay the course, for fear of coercing them. Furthermore, researchers now try to ,screen out' people they think may be unreliable to protect the science of the study and so groups at risk of dropping out may be unfairly denied access to research treatments. I conclude that on-going negotiation between the relevant parties could be on balance the only truly acceptable way forward but concede certain important limitations to take into account. [source] Maximizing Clinical Research Participation in Vulnerable Older Persons: Identification of Barriers and MotivatorsJOURNAL OF AMERICAN GERIATRICS SOCIETY, Issue 8 2008Edward R. Marcantonio MD OBJECTIVES: 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. DESIGN: Quantitative and qualitative survey. SETTING: Academic primary care medicine and pre-anesthesia testing clinics. PARTICIPANTS: Fifty patients aged 70 and older, including 25 medical patients at high risk of hospitalization and 25 patients with planned major surgery. MEASUREMENTS: 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. RESULTS: 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. CONCLUSION: 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. [source] Perceived Barriers and Benefits to Research Participation Among School AdministratorsJOURNAL OF SCHOOL HEALTH, Issue 11 2008November 2008 issue of Journal of School Health No abstract is available for this article. [source] Communicating with Subjects: Special Challenges for Resuscitation ResearchACADEMIC EMERGENCY MEDICINE, Issue 11 2005Ilene Wilets PhD Abstract In May 2005, Academic Emergency Medicine sponsored a one-day consensus conference held in association with the 2005 Society for Academic Emergency Medicine meeting in New York City. The conference, entitled "Ethical Conduct of Resuscitation Research," addressed a variety of issues regarding the successful conduct of research in acute care settings. A number of important breakout sessions were convened based on challenges specific to resuscitation research. "Communicating with Subjects" was one such session, dedicated toward perfecting the conduct of informed consent for research. The breakout session was attended by 15 insightful emergency medicine investigators, administrators, and ethicists. Issues of research information disclosure, subject comprehension, and the voluntariness of research participation were addressed. Consensus statements were developed and are discussed within this report. [source] Research sensitivities to palliative care patientsEUROPEAN JOURNAL OF CANCER CARE, Issue 3 2002J. Addington-Hall phd Research sensitivities to palliative care patients This paper considers the methodological challenges of researching the health care experiences of palliative care patients and their families. Difficulties in defining a ,palliative care patient' are highlighted, and the question of whether there are specific ethical issues when researching palliative care explored. Methodological issues are discussed, including the negotiation of access via health professionals, the choice of appropriate data collection methods and tools, the consequences of high attrition rates and the use of retrospective surveys of bereaved relatives. Key areas for research are identified. These include patients' and families' experiences of research participation, the impact of being approached on those who decline, how the characteristics of those who participate differ from those who do not and the likely impact of this on findings. Research is also needed into patient and family motivations for participation, and whether and how these change as the disease progresses. To ensure that the voices of palliative care patients and their families are heard by both service providers and policy-makers, research in this area needs to address the methodological challenges raised in this paper, as well as continuing to explore users' views. [source] Radiation therapists' perspective on barriers to clinical trials researchJOURNAL OF MEDICAL IMAGING AND RADIATION ONCOLOGY, Issue 2 2008C Agustin Summary This study investigates the barriers to the conduct of research as perceived by radiation therapists (RT) particularly with regards to their activity as part of collaborative clinical trials groups such as the Trans-Tasman Radiation Oncology Group. These were examined to identify solutions that might promote research by RT working within busy clinical services. In September to October 2005, surveys were sent to an RT Educator and RT Chiefs in four public hospitals in New South Wales, Australia, with a request to distribute and collect the surveys from RT employed at their centres. The overall response rate across these centres was 59% (78/133). Most of the respondents felt that their managers regarded research to be of high priority (79%) and that others in their workplace considered initiating and conducting research as important (79%). The RT considered lack of time during working hours to be the greatest barrier to research (87%). However, the RT felt that the availability of a research mentor would facilitate research in their workplace (90%). Based on our findings, the availability of structural support from radiation oncology centres may promote the clinical trials research participation of RT. [source] Including Adults With Intellectual Disabilities in Research: Scientists' Perceptions of Risks and ProtectionsJOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES, Issue 4 2009Katherine E. McDonald Abstract Social and cognitive characteristics of adults with intellectual disabilities (ID) place them at risk for inappropriate inclusion in or exclusion from research participation. As we grapple with how to include adults with ID in research in order to secure their right to contribute to scientific advancements and be positioned to derive benefit from ensuing knowledge, it is critical to consider scientific gatekeepers' perspectives on risks of and protections for including adults with ID in research. We surveyed 199 Institutional Review Board members and intellectual disability researchers in the United States to identify their perceptions of specific risks and necessary protections in (hypothetical) research studies. The research studies varied as to whether they included adults with ID in the research sample and the level of harm to which research participants were exposed. Results suggest that identification of psychological, social, and legal risks and necessary protections varied by the disability status of the sample, the level of risk, and the role of the person reviewing the study. For example, participants identified more psychological, information control, legal, and social risks in higher harm research studies. Participants reported a need for more protections in high-harm studies as well as studies that included adults with ID. In some instances the nature of identified risks and protections and respondents' characterization of these risks and necessary protections suggested concerns related specifically to adults with ID. Implications for practice, policy, and future research related to access to research participation are discussed. [source] Participation in trauma research: Is there evidence of harm?JOURNAL OF TRAUMATIC STRESS, Issue 3 2003Michael G. Griffin Abstract Few studies have examined the impact of trauma research participation upon trauma survivors. Empirical data regarding reactions to research participation would be very useful to address the question of whether it is harmful for trauma survivors to participate in trauma studies. We examined participant reactions to different trauma assessment procedures in domestic violence (N = 260), rape (N = 108), and physical assault (N = 62) samples. Results indicated that participation was very well tolerated by the vast majority of the trauma survivors. Participants generally found that the assessment experience was not distressing and was, in fact, viewed as an interesting and valuable experience. The findings suggest that trauma survivors are not too fragile to participate in trauma research even in the acute aftermath of a traumatic experience. [source] Refugee families' experience of research participationJOURNAL OF TRAUMATIC STRESS, Issue 3 2000Kari Dyregrov Abstract Because refugees can experience crisis, bereavement, and traumatization, there has been a rapid increase of research carried out with refugees. This study investigated how refugee families respond to participation in research. A previous study explored how adults and children had communicated about the difficult question of repatriation after arriving in a new country. Did the in-depth interviews harm or benefit them? Are there any ethical risks in research on traumatized refugees? From an original sample of 74 Bosnian refugees (5,73 years), 30 family members from 9 families including 14 children aged 6 to 19, were re-interiewed. The refugees rated participation as positive. A few parents lacked information that could have enabled them to inform the children better before the interviews. The study shows that studies on traumatized/bereaved populations can have beneficial effects. [source] Reflections of occupational therapists working as members of a research teamAUSTRALIAN OCCUPATIONAL THERAPY JOURNAL, Issue 2 2005Marcia Finlayson Aim:,This qualitative study explored the effects of clinician participation in a randomised clinical trial on subsequent practice. Method:,Eight occupational therapists responded to open-ended questions delivered by email about their reflections on participating in clinical research and its impact on their practice. Qualitative analysis uncovered therapists' motivation to participate in research, what they felt that they gained, and if and how research participation influenced practice. Results:,Clinicians learned about research, practice, and their own clinical biases through their participation in clinical research. Conclusion:,Our findings suggest that participation in research may contribute to shrinking the research-practice gap. [source] RESEARCH PARTICIPATION AND THE RIGHT TO WITHDRAWBIOETHICS, Issue 2 2005SARAH J.L. EDWARDS ABSTRACT Most ethics committees which review research protocols insist that potential research participants reserve unconditional or absolute ,right' of withdrawal at any time and without giving any reason. In this paper, I examine what consent means for research participation and a sense of commitment in relation to this right to withdraw. I suggest that, once consent has been given (and here I am excluding incompetent minors and adults), participants should not necessarily have unconditional or absolute rights to withdraw. This does not imply that that there should be a complete absence of rights, or, indeed, an abandonment of the right to withdraw. The point of this paper is to show that the supposed unconditional or absolute nature of these rights may be self-defeating and so fail to respect the autonomy of participants. In addition, and on a more positive note, I suggest that, attaching certain conditions on the right to withdraw, may better respect the autonomy of these participants by underlining the idea that autonomy is more than mere whim or indifference to the fate of others. On the contrary, research staff are currently unable to ,push' participants, who may merely have logistical difficulties unrelated to the research itself, but who really want to stay the course, for fear of coercing them. Furthermore, researchers now try to ,screen out' people they think may be unreliable to protect the science of the study and so groups at risk of dropping out may be unfairly denied access to research treatments. I conclude that on-going negotiation between the relevant parties could be on balance the only truly acceptable way forward but concede certain important limitations to take into account. [source] | ||||||||||