The Impact of Research Participation on Adults with Severe Mental Illness

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research participation, adverse reactions, emotional distress, adults with mental illness

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Experiences of adults with mental illness who participated in a 12-month managed care study are summarized. During exit interviews, participants were asked about consent procedures, study purpose, if questions were intrusive or anxiety producing, and concerns about information disclosure. Respondents rated their experience and likelihood of future participation. Almost 38% did not remember the consent procedures. Among those who did, 22.4% reported they lacked adequate detail about the scope of the study. Nearly 3% felt pressured into participating. Although most participants (96%) reported positive experiences, 8.8% became anxious, 16.8% were afraid responses would be disclosed, and 16.7% indicated questions were invasive. Age, race/ethnicity, and gender were not associated with adverse reactions. Symptomatology and perceived inadequacies in consent procedures were significantly, albeit weakly, associated with adverse reactions. Although most participants experienced no distress, rates of adverse responses among persons with mental illness exceeded those of community-based samples. Strategies for minimizing negative reactions are discussed.

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Citation / Publisher Attribution

Mental Health Services Research, v. 2, issue 4, p. 213–222