title: The subjective experience of participation in schizophrenia research: a practical and ethical issue.
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.
authors.affiliation: School of Psychological Sciences, University of Manchester, Manchester, United Kingdom. p.j.taylor@postgrad.manchester.ac.uk
authors.forename: Peter James
authors.initials: PJ
authors.lastname: Taylor
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Awenat
authors.forename: Patricia
authors.initials: P
authors.lastname: Gooding
authors.forename: Judith
authors.initials: J
authors.lastname: Johnson
authors.forename: Daniel
authors.initials: D
authors.lastname: Pratt
authors.forename: Alex
authors.initials: A
authors.lastname: Wood
authors.forename: Nicholas
authors.initials: N
authors.lastname: Tarrier
mesh_terms: D000328:Adult; D000533:Altruism; D001290:Attitude; D001294:Attitude to Health; D032984:Ethics, Research; D005246:Feedback; D005260:Female; D006801:Humans; D007258:Informed Consent; D008297:Male; D009042:Motivation; D010358:Patient Participation; D017060:Patient Satisfaction; D011618:Psychotic Disorders / Q000523:psychology*; D036301:Qualitative Research; D035842:Research Subjects / Q000523:psychology*; D035844:Researcher-Subject Relations / Q000941:ethics / Q000523:psychology; D012559:Schizophrenia / Q000175:diagnosis*; D012565:Schizophrenic Psychology; D013405:Suicide / Q000523:psychology; D011795:Surveys and Questionnaires; D000092864:Suicide Prevention