The Subjective Experience of Participation in Schizophrenia Research: A Practical and Ethical Issue
Taylor, Peter James
Journal of Nervous and Mental Disease 2010 May; 198(5): 343-348
Mental health research may pose a risk to those who participate in it, especially for potentially vulnerable groups such as those diagnosed with schizophrenia. The current study aimed to investigate the subjective experience of research participation in this group. Seventy-nine individuals with diagnoses of schizophrenia spectrum disorders who had taken part in research looking at suicide were asked to provide feedback about their experiences. Responses were analyzed using qualitative and quantitative methods. Results indicate that negative feedback concerning participation was rare, occurring in 2.5% to 15.2% of responses. Positive feedback was more frequent, occurring in 45.6% to 60.8% of responses. Qualitative thematic analysis identified 5 key themes in participants' responses: Altruism, Value of being involved in research, Therapeutic effect, Enjoyable experience and Negative experiences. The results support the view that mental health research in this group can be ethically viable.
Showing items related by title, author, creator and subject.
Perception, experience, and response to genetic discrimination in Huntington disease: the international RESPOND-HD study. Erwin, Cheryl; Williams, Janet K; Juhl, Andrew R; Mengeling, Michelle; Mills, James A; Bombard, Yvonne; Hayden, Michael R; Quaid, Kimberly; Shoulson, Ira; Taylor, Sandra; Paulsen, Jane S; (2010-07)Genetic discrimination-defined as the denial of rights, privileges, or opportunities or other adverse treatment based solely on genetic information (including family history)-is an important concern to patients, healthcare ...