Influences upon willingness to participate in schizophrenia research: An analysis of narrative data from 63 people with schizophrenia
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jack Alan Reynolds
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Ethics and Behavior 13 (3):279 – 302 (2003)
Schizophrenia affects more than 1% of the world's population, causing great personal suffering and socioeconomic burden. These costs associated with schizophrenia necessitate inquiry into the causes and treatment of the illness but generate ethical challenges related to the specific nature and deficits of the illness itself. In this article, we present a systematic analysis of narrative data from 63 people living with the illness of schizophrenia collected through semistructured interviews about their attitudes, beliefs, and experiences related to psychiatric research. In the comments of these individuals, half of whom had had prior personal experience in research protocols, we identified factors influencing openness toward research involvement as well as deterrents that appear to lessen interest in participation. Clear response pattern differences emerged between those with prior research experience and those without such experience. In the discussion, we explore these key findings and outline the implications for safeguards in mental illness research.
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References found in this work BETA
Celia B. Fisher & Scyatta A. Wallace (2000). Through the Community Looking Glass: Reevaluating the Ethical and Policy Implications of Research on Adolescent Risk and Psychopathology. Ethics and Behavior 10 (2):99 – 118.
M. L. Russell (2000). Paying Research Subjects: Participants' Perspectives. Journal of Medical Ethics 26 (2):126-130.
Janet L. Brody, John P. Cluck & Alfredo S. Aragon (1997). Participants' Understanding of the Process of Psychological Research: Informed Consent. Ethics and Behavior 7 (4):285 – 298.
Citations of this work BETA
Cynthia Geppert, Philip Candilis, Stephen Baker, Charles Lidz, Paul Appelbaum & Kenneth Fletcher (2014). Motivations of Patients With Diabetes to Participate in Research. Ajob Empirical Bioethics 5 (4):14-21.
Anne Townsend & Susan M. Cox (2013). Accessing Health Services Through the Back Door: A Qualitative Interview Study Investigating Reasons Why People Participate in Health Research in Canada. [REVIEW] BMC Medical Ethics 14 (1):40.
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