The Subjective Experience of Participation in Schizophrenia Research A Practical and Ethical Issue

Citation

Taylor PJ, Awenat Y, Gooding PA, Johnson J, Pratt D, Wood AM & Tarrier N (2010) The Subjective Experience of Participation in Schizophrenia Research A Practical and Ethical Issue. Journal of Nervous and Mental Disease, 198 (5), pp. 343-348. http://www-scopus-com.ezproxy.stir.ac.uk/record/display.url?eid=2-s2.0-77952260242&origin=resultslist&sort=plf-f&src=s&st1=10.1097%2fNMD.0b013e3181da8545&sid=646244C268F109A2D1230C97A0FC8087.iqs8TDG0Wy6BURhzD3nFA%3a110&sot=b&sdt=b&sl=33&s=DOI%2810.1097%2fN; https://doi.org/10.1097/NMD.0b013e3181da8545

Abstract
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.

Keywords
Schizophrenia; suicide; research ethics

Journal
Journal of Nervous and Mental Disease: Volume 198, Issue 5