Results for 'Patient participation'

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  1.  13
    Reconsidering Patient Participation in Guideline Development.Hester M. van de Bovenkamp & Margo J. Trappenburg - 2009 - Health Care Analysis 17 (3):198.
    Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of (...)
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  2.  15
    Patient Participation in Hospital Care: How Equal is the Voice of the Client Council?Hanneke van der Meide, Gert Olthuis & Carlo Leget - 2015 - Health Care Analysis 23 (3):238-252.
    Patient participation in healthcare is highly promoted for democratic reasons. Older patients make up a large part of the hospital population but their voices are less easily heard by most patient participation instruments. The client council can be seen as an important medium to represent the interests of this increasing group of patients. Every Dutch healthcare institution is obliged to have a client council and its rights are legally established. This paper reports on a case study (...)
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  3.  7
    Patient Participation in Healthcare Practice in Greenland: Local Challenges and Global Reflections.Tine Aagaard & Tove Borg - 2018 - Outlines. Critical Practice Studies 19 (1):07-24.
    Various kinds of user and patient involvement are spreading in healthcare in most Western countries. The purpose of this study is to critically assess the actual conditions for patients’ involvement in healthcare practice in Greenland and to point to possibilities for development. Patients’ perspectives on their own conduct of everyday life with illness and their possibilities for participation when hospitalized are examined in relation to the conditions in a hospital setting dominated by biomedical practice. On a theoretical level, (...)
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  4.  16
    Patient Participation in Decision Making at the End of Life as Seen by a Close Relative.Eva Sahlberg-Blom, Britt-Marie Ternestedt & Jan-Erik Johansson - 2000 - Nursing Ethics 7 (4):293-313.
    The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors’ manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients’ participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which (...)
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  5.  28
    Conditions for Patient Participation and Non-Participation in Health Care.Ann Catrine Eldh, Inger Ekman & Margareta Ehnfors - 2006 - Nursing Ethics 13 (5):503-514.
    This study explored patients' experiences of participation and non-participation in their health care. A questionnaire-based survey method was used. Content analysis showed that conditions for patient participation occurred when information was provided not by using standard procedures but based on individual needs and accompanied by explanations, when the patient was regarded as an individual, when the patient's knowledge was recognized by staff, and when the patient made decisions based on knowledge and needs, or (...)
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  6.  71
    Patient Participation in Decision Making at the End of Life as Seen by a Close Relative.E. Sahlberg-Blom, B. -M. Ternestedt & J. -E. Johansson - 2000 - Nursing Ethics 7 (4):296-313.
    The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors’ manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients’ participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which (...)
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  7.  7
    Patient Participation in Hospital Care: How Equal is the Voice of the Client Council?Carlo Leget, Gert Olthuis & Hanneke Meide - 2015 - Health Care Analysis 23 (3):238-252.
    Patient participation in healthcare is highly promoted for democratic reasons. Older patients make up a large part of the hospital population but their voices are less easily heard by most patient participation instruments. The client council can be seen as an important medium to represent the interests of this increasing group of patients. Every Dutch healthcare institution is obliged to have a client council and its rights are legally established. This paper reports on a case study (...)
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  8.  99
    Nurses' Perceptions of Patient Participation in Hemodialysis Treatment.E. M. Aasen, M. Kvangarsnes & K. Heggen - 2012 - Nursing Ethics 19 (3):419-430.
    The aim of this study is to explore how nurses perceive patient participations of patients over 75 years old undergoing hemodialysis treatment in dialysis units, and of their next of kin. Ten nurses told stories about what happened in the dialysis units. These stories were analyzed with critical discourse analysis. Three discursive practices are found: (1) the nurses’ power and control; (2) sharing power with the patient; and (3) transferring power to the next of kin. The first and (...)
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  9.  25
    Patient and Citizen Participation in Health: The Need for Improved Ethical Support.Laura Williamson - 2014 - American Journal of Bioethics 14 (6):4-16.
    Patient and citizen participation is now regarded as central to the promotion of sustainable health and health care. Involvement efforts create and encounter many diverse ethical challenges that have the potential to enhance or undermine their success. This article examines different expressions of patient and citizen participation and the support health ethics offers. It is contended that despite its prominence and the link between patient empowerment and autonomy, traditional bioethics is insufficient to guide participation (...)
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  10. Facilitating Patient Participation by Embracing Patients' Preferences—A Discussion.Ann Catrine Eldh - 2019 - Journal of Evaluation in Clinical Practice 25 (6):1070-1073.
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  11.  7
    Shared Decision Making: Does a Physician's Decision‐Making Style Affect Patient Participation in Treatment Choices for Primary Immunodeficiency?Christopher C. Lamb, Yunmei Wang & Kalle Lyytinen - 2019 - Journal of Evaluation in Clinical Practice 25 (6):1102-1110.
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  12.  36
    Dialogical Ethics and Responsive Evaluation as a Framework for Patient Participation.Tineke Abma & Guy Widdershoven - 2014 - American Journal of Bioethics 14 (6):27-29.
  13. Reconsidering Patient Participation in Guideline Development.M. J. Trappenburg & H. Bovenkamp - forthcoming - Health Care Analysis.
     
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  14.  66
    From Subjects to Experts—On the Current Transition of Patient Participation in Research.Veronica Johansson - 2014 - American Journal of Bioethics 14 (6):29-31.
  15.  9
    Managing Disease, or Managing the Self?: Philosophical Challenges to Patient Participation in (Mental) Health Care and the Need for Self-Management Training.Stefan van Geelen - 2014 - American Journal of Bioethics 14 (6):21-22.
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  16.  7
    Rasch Analysis of the Patient Participation in Rehabilitation Questionnaire.Jeanette Melin, Robin Fornazar, Martin Spångfors & Leslie Pendrill - forthcoming - Journal of Evaluation in Clinical Practice.
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  17.  26
    Patient Participation in Clinical Ethics Support Services – Patient-Centered Care, Justice and Cultural Competence.Angela J. Ballantyne, Elizabeth Dai & Ben Gray - 2017 - Clinical Ethics 12 (1):11-18.
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  18.  50
    Tineke A. Abmais Professor of Client Participation in Elderly Care at the Department of Medical Humanities and the EMGO+ Institute for Health and Care Research, VU University Medical Center, Amsterdam. She has Published Extensively in the Fields of Program Evaluation and Qualitative Methods, Patient Participation, and (Nursing) Ethics. Elderly Care, Chronic, Care and Psychiatry Are Her Main Practice Fields. [REVIEW]Gwen Adshead - 2011 - International Journal of Feminist Approaches to Bioethics 4 (1).
  19.  13
    Ontological Assumptions, a Biopsychosocial Approach, and Patient Participation: Moving Toward an Ethically Legitimate Science of Psychiatric Nosology.Porter Douglas - 2017 - Philosophy, Psychiatry, and Psychology 24 (3):223-226.
    Important philosophical work has gone into debunking thoroughly entrenched positivist notions that objective science proceeds in a value neutral manner. Dr. Tamara Kayali Browne's article "A Role for Philosophers, Sociologists, and Bioethicists in Revising the DSM" admirably takes the next step. Given the evaluative elements that permeate, in this case, the science of nosology—how do we deal responsibly with those evaluative elements? She correctly, in my opinion, concludes that dealing with evaluative issues responsibly is tantamount to dealing with them ethically. (...)
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  20.  9
    Patient Participation as Discursive Practice-A Critical Discourse Analysis of Danish Mental Healthcare.Kim Joergensen & Jeanette Praestegaard - 2018 - Nursing Inquiry 25 (2):e12218.
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  21.  16
    A Comparison of the Discursive Practices of Perception of Patient Participation in Haemodialysis Units.E. M. Aasen - 2015 - Nursing Ethics 22 (3):341-351.
  22.  19
    Patient Participation in Special Care Units for Persons with Dementia: A Losing Principle?A. K. Helgesen, M. Larsson & E. Athlin - 2014 - Nursing Ethics 21 (1):108-118.
  23.  8
    Unfolding the Invisible of the Visible: Gendered Constructions of Patient Participation.Christina Foss & Marit Kirkevold - 2008 - Nursing Inquiry 15 (4):299-308.
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  24.  1
    A Study on the Influence of Patient Participation on Patient Trust-Based on Sample Survey in China.Tongwei Yang & Yijin Wu - 2018 - Frontiers in Psychology 9.
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  25.  6
    Informal Ethics Consultations in Academic Health Care Settings: A Quantitative Description and a Qualitative Analysis with a Focus on Patient Participation.A. Rudnick, L. Pallaveshi, R. W. Sibbald & C. Forchuk - 2014 - Clinical Ethics 9 (1):28-35.
  26.  14
    Patient Involvement in Clinical Ethics Services: From Access to Participation and Membership.G. Neitzke - 2009 - Clinical Ethics 4 (3):146-151.
    Ethics consultation is a novel paradigm in European health-care institutions. In this paper, patient involvement in all clinical ethics activities is scrutinized. It is argued that patients should have access to case consultation services via clearly defined access paths. However, the right of both health-care professionals and patients indicates that patients should not always be notified of a consultation. Ethics education, another well-established function of an ethics committee, should equally be available for patients, lay people and hospital staff. Beyond (...)
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  27.  10
    Participation in a Single-Blinded Pediatric Therapeutic Strategy Study for Juvenile Idiopathic Arthritis: Are Parents and Patient-Participants in Equipoise?Petra C. E. Hissink Muller, Bahar Yildiz, Cornelia F. Allaart, Danielle M. C. Brinkman, Marion van Rossum, Lisette W. A. van Suijlekom-Smit, J. Merlijn van den Berg, Rebecca ten Cate & Martine C. de Vries - 2018 - BMC Medical Ethics 19 (1):1-9.
    Background Genuine uncertainty on superiority of one intervention over the other is called equipoise. Physician-investigators in randomized controlled trials need equipoise at least in studies with more than minimal risks. Ideally, this equipoise is also present in patient-participants. In pediatrics, data on equipoise are lacking. We hypothesize that 1) lack of equipoise at enrolment among parents may reduce recruitment; 2) lack of equipoise during participation may reduce retention in patients assigned to a less favoured treatment-strategy. Methods We compared (...)
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  28.  88
    Informed Consent: Patient Autonomy and Physician Beneficence Within Clinical Medicine. [REVIEW]Stephen Wear & Jonathan D. Moreno - 1994 - HEC Forum 6 (5):323-325.
    Substantial efforts have recently been made to reform the physician-patient relationship, particularly toward replacing the `silent world of doctor and patient' with informed patient participation in medical decision-making. This 'new ethos of patient autonomy' has especially insisted on the routine provision of informed consent for all medical interventions. Stronly supported by most bioethicists and the law, as well as more popular writings and expectations, it still seems clear that informed consent has, at best, been received (...)
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  29.  3
    Patient Co-Participation in Narrative Medicine Curricula as a Means of Engaging Patients as Partners in Healthcare: A Pilot Study Involving Medical Students and Patients Living with HIV.Jonathan C. Chou, Ianthe R. M. Schepel, Anne T. Vo, Suad Kapetanovic & Pamela B. Schaff - forthcoming - Journal of Medical Humanities:1-17.
    This paper describes a pilot study of a new model for narrative medicine training, “community-based participatory narrative medicine”, which centers on shared narrative work between healthcare trainees and patients. Nine medical students and eight patients participated in one of two, five-week-long pilot workshop series. A case study of participants’ experiences of the workshop series identified three major themes: the reciprocal and collaborative nature of participants’ relationships; the interplay between self-reflection and receiving feedback from others; and the clinical and pedagogical implications (...)
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  30.  16
    Medication and Participation: A Qualitative Study of Patient Experiences with Antipsychotic Drugs.G. F. Lorem, J. S. Frafjord, M. Steffensen & C. E. Wang - 2014 - Nursing Ethics 21 (3):347-358.
  31.  9
    Patient and Public Participation in Health Care: Can We Do It Better?Lucy Frith, Bridget Young & Kerry Woolfall - 2014 - American Journal of Bioethics 14 (6):17-18.
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  32.  9
    Mitigating Challenges in Dual-Role Consent: Honoring Patient Preferences to Discuss Research Participation With Someone They Know.Akshay Sharma & Liza-Marie Johnson - 2019 - American Journal of Bioethics 19 (4):30-32.
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  33.  14
    Review — Patient Compliance, Client Participation and Lay Reskilling: A Review.Stephanie D. Short - 1996 - Health Care Analysis 4 (2):168-173.
  34.  13
    A Response to the Open Peer Commentaries on “Patient and Citizen Participation in Health: The Need for Improved Ethical Support”.Laura Williamson - 2014 - American Journal of Bioethics 14 (12):W1 - W5.
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  35. Patient, Heal Thyself: How the New Medicine Puts the Patient in Charge.Robert M. Veatch - 2009 - Oxford University Press.
    The puzzling case of the broken arm -- Hernias, diets, and drugs -- Why physicians cannot know what will benefit patients -- Sacrificing patient benefit to protect patient rights -- Societal interests and duties to others -- The new, limited, twenty-first-century role for physicians as patient assistants -- Abandoning modern medical concepts: doctor's "orders" and hospital "discharge" -- Medicine can't "indicate": so why do we talk that way? --"Treatments of choice" and "medical necessity": who is fooling whom? (...)
     
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  36.  12
    The Benefits of Patient Involvement for Translational Research.Lieke van der Scheer, Elisa Garcia, Anna Laura van der Laan, Simone van der Burg & Marianne Boenink - 2017 - Health Care Analysis 25 (3):225-241.
    The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational research and, if so, how to proceed. TR is said to ensure a more effective movement of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their (...)
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  37.  20
    Coercive Offers and Research Participation: A Comment on Wertheimer and Miller.J. McMillan - 2010 - Journal of Medical Ethics 36 (7):383-384.
    Concepts such as ‘coercion’ and ‘inducement’ are often used within bioethics without much reflection upon what they mean. This is particularly so in research ethics where they are assumed to imply that payment for research participation is unethical. Wertheimer and Miller advance our thinking about these concepts and research ethics in a significant way, specifically by questioning the possibility of genuine offers ever being coercive. This commentary argues that they are right to question this assumption, however, more needs to (...)
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  38.  35
    Legal Briefing: The New Patient Self-Determination Act.T. M. Pope - 2013 - Journal of Clinical Ethics 24 (2):156-167.
    This issue’s “Legal Briefing” column covers recent legal developments involving the Patient Self-Determination Act . Enacted in the wake of the U.S. Supreme Court’s Cruzan decision in 1990, the PSDA remains a seminal event in the development of U.S. bioethics public policy, but the PSDA has long been criticized as inadequate and ineffective. Finally, recent legislative and regulatory changes promise to revitalize and rejuvenate it. The PSDA has been the subject of recent articles in The Journal of Clinical Ethics.I (...)
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  39.  14
    Legal Briefing: Shared Decision Making and Patient Decision Aids.T. M. Pope & M. Hexum - 2013 - Journal of Clinical Ethics 24 (1):70-80.
    This “Legal Briefing” column covers recent legal developments involving patient decision aids. This topic has been the subject of recent articles in JCE. It is included in the 2010 Patient Protection and Affordable Care Act. And it has received significant attention in the biomedical literature, including a new book, a thematic issue of Health Affairs, and a recent article in the New England Journal of Medicine. Moreover, physicians and health systems across the United States are increasingly integrating decision (...)
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  40.  36
    Women's Views About Participating in Research While Pregnant.A. D. Lyerly, E. E. Namey, B. Gray, G. Swamy & R. R. Faden - 2012 - IRB: Ethics & Human Research 34 (4):1-8.
    Pregnant women and their interests have been underrepresented in health research. Little is known about issues relevant to women considering research participation during pregnancy. We performed in-depth interviews with 22 women enrolled in either one of two trials sponsored by the National Institutes of Health to assess the safety and immunogenicity of the H1N1 vaccine during pregnancy. Three themes characterized women’s decisions to participate in research: they valued early access to the vaccine, they perceived a safety advantage when participating (...)
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  41.  26
    Relationships Between Various Attitudes Towards Self-Determination in Health Care with Special Reference to an Advance Directive.M. Eisemann & J. Richter - 1999 - Journal of Medical Ethics 25 (1):37-41.
    OBJECTIVES: The subject of patient self-determination in health care has gained broad interest because of the increasing number of incompetent patients. In an attempt to solve the problems related to doctors' decision making in such circumstances, advance directives have been developed. The purpose of this study was to examine relationships between public attitudes towards patient autonomy and advance directives. SUBJECTS AND MAIN OUTCOME MEASURES: A stratified random sample of 600 adults in northern Sweden was surveyed by a questionnaire (...)
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  42. Protecting the Vulnerable: Autonomy and Consent in Health Care.Margaret Brazier & Mary Lobjoit (eds.) - 1991 - Routledge.
    Protecting the Vulnerable explores the reality of patient control and choice in health care and analyzes how decisions should be made on behalf of those deemed incapable of making decisions. The contributors, distinguished experts from the disciplines of medicine, ethics, theology, and law, look at the complex problem of autonomy and consent in health care and clinical research today from an illuminating perspective--its impact on the vulnerable members of society. The essays move from the exploration of lingering paternalism in (...)
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  43. Medical Decision Making: A Physician's Guide.Alan Schwartz - 2008 - Cambridge University Press.
    Decision making is a key activity, perhaps the most important activity, in the practice of healthcare. Although physicians acquire a great deal of knowledge and specialised skills during their training and through their practice, it is in the exercise of clinical judgement and its application to individual patients that the outstanding physician is distinguished. This has become even more relevant as patients become increasingly welcomed as partners in a shared decision making process. This book translates the research and theory from (...)
     
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  44.  83
    Autonomy and Long-Term Care.George J. Agich - 1993 - Oxford University Press.
    The realities and myths of long-term care and the challenges it poses for the ethics of autonomy are analyzed in this perceptive work. The book defends the concept of autonomy, but argues that the standard view of autonomy as non-interference and independence has only a limited applicability for long term care. The treatment of actual autonomy stresses the developmental and social nature of human persons and the priority of identification over autonomous choice. The work balances analysis of the ethical concepts (...)
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  45.  5
    Error Trawling and Fringe Decision Competence: Ethical Hazards in Monitoring and Address Patient Decision Capacity in Clinical Practice.Thomas Hartvigsson, Christian Munthe & Gun Forsander - 2018 - Clinical Ethics 13 (3):126-136.
    This article addresses how health professionals should monitor and safeguard their patients’ ability to participate in making clinical decisions and making subsequent decisions regarding the implementation of their treatment plan. Patient participation in clinical decision-making is essential, e.g. in self-care, where patients are responsible for most ongoing care. We argue that one common, fact-oriented patient education strategy may in practice easily tend to take a destructive form that we call error trawling. Illustrating with empirical findings from a (...)
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  46.  7
    Supporting Positive Experiences and Sustained Participation in Clinical Trials: Looking Beyond Information Provision.K. Gillies & V. A. Entwistle - 2012 - Journal of Medical Ethics 38 (12):751-756.
    Recruitment processes for clinical trials are governed by guidelines and regulatory systems intended to ensure participation is informed and voluntary. Although the guidelines and systems provide some protection to potential participants, current recruitment processes often result in limited understanding and experiences of inadequate decision support. Many trials also have high drop-out rates among participants, which are ethically troubling because they can be indicative of poor experiences and they limit the usefulness of the knowledge the trials were designed to generate. (...)
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  47.  17
    Why Do People Participate in Epidemiological Research?Claudia Slegers, Deborah Zion, Deborah Glass, Helen Kelsall, Lin Fritschi, Ngiare Brown & Bebe Loff - 2015 - Journal of Bioethical Inquiry 12 (2):227-237.
    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 (...)
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  48.  7
    Finding Their Voices Again: A Media Project Offers a Floor for Vulnerable Patients, Clients and the Socially Deprived. [REVIEW]Ralf Stutzki, Markus Weber & Stella Reiter-Theil - 2013 - Medicine, Health Care and Philosophy 16 (4):739-750.
    ‘DU bist Radio’ (DBR) is an award winning [DBR has been awarded with the “Catholic Media Award of the German Bishops Conference, Prädikat WERTvoll” (2011), the Suisse “Media Prize Aargau/Solothurn” (2010), the German “Alternative Media Award” (2009) and was nominated for the “Prix Europa” (2009)] monthly radio format that goes on air on three Swiss radio stations. The purpose of this program which was first broadcast in 2009 is the development of a new media format which—without applying any journalistic (or (...)
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  49.  3
    Reformed Consent: Adapting to New Media and Research Participant Preferences.J. Henry, B. W. Palmer, L. Palinkas, D. K. Glorioso, M. P. Caligiuri & D. V. Jeste - 2008 - IRB: Ethics & Human Research 31 (2):1-8.
  50.  20
    Marginalized Populations and Drug Addiction Research: Realism, Mistrust, and Misconception.C. B. Fisher, M. Oransky, M. Mahadevan, M. Singer, G. Mirhej & D. Hodge - 2007 - IRB: Ethics & Human Research 30 (3):1-9.
    This study explored drug users’ attitudes toward and understanding of randomized controlled trials testing addiction therapies. A video portraying a fictional consent conference for a randomized controlled trial with placebo arm was shown to poor male and female drug users of diverse ethnic status and sexual orientation. The video stimulated focus group discussion in which participants’ comments often reflected “experimental realism”—a realistic view of the trial—and adequate understanding of the uncertain efficacy of the treatment being tested, as well as the (...)
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