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Participant Perspectives: Investigating the Experience of Low-Income Schizophrenics in Clinical Research Trials

Description: The continued investigation into the experiences of individuals with schizophrenia who participate in biomedical research trials is necessary in order to understand participants’ perspectives, motivations, attitudes, values, and beliefs. As important stakeholders in the clinical research process, participant feedback is significant and can help shed light on, not only their experiences, but also deepen understandings when it comes to clinical trial participants’ perceptions of informed consent and personal autonomy. Conducting ethical research demands the exploration of these issues and specifically targeting this vulnerable group helped to address a gap in the literature. This study was conducted for InSite Clinical Research and gathered data in the form of in-depth semi-structured interviews and a short survey instrument with 20 low-income adults diagnosed with schizophrenia that participate in clinical research trials. Findings indicate overall positive research experiences, with motivations aligning with previous research when it comes to trial participation including: altruism, personal benefit, access to medications, financial incentives, and psychosocial treatment. Learning about their illness and themselves, autonomy, and debriefing were also particularly important within this group. Unique to this sample were findings of friendship. Trust in the research staff was identified as a major underlying value and shaping factor impacting informed consent decisions. These conclusions have implications for recruitment and informed consent practices at InSite Clinical Research.
Date: May 2015
Creator: Green, Asha M.
Partner: UNT Libraries