Disclosing the diagnosis of schizophrenia: A pilot study of the ‘Coming Out Proud’ intervention

• Published in: International journal of social psychiatry 2019-05, Vol.65 (3), p.244-251
• Main Authors: Setti, Viviane Piagentini Candal, Loch, Alexandre Andrade, Modelli, Arlete, de Almeida Rocca, Cristiana Castanho, Hungerbuehler, Ines, van de Bilt, Martinus Theodorus, Gattaz, Wagner Farid, Rössler, Wulf
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; Adult; Brazil; Cognitive appraisal; Coming out; Devaluation; Deviation; Discrimination; Female; Humans; Intelligence tests; Intervention; Male; Medical diagnosis; Mental disorders; Middle Aged; Pilot Projects; Power, Psychological; Prejudice; Questionnaires; Schizophrenia; Schizophrenia - diagnosis; Schizophrenic Psychology; Self Concept; Self esteem; Social Stigma; Sociocultural factors; Stigma; Stress, Psychological - psychology; Surveys and Questionnaires; Truth Disclosure
• ISSN: 0020-7640; 1741-2854
• DOI: 10.1177/0020764019840057

Background: Schizophrenia is one of the most stigmatized psychiatric disorders, and disclosing it is often a source of stress to individuals with the disorder. The Coming Out Proud (COP) group intervention is designed to reduce the stigma’s negative impact and help participants decide if they want to disclose their disorder. Aims: To assess the effect of the COP intervention in individuals with the diagnosis of schizophrenia. Methods: A pilot study of 3 2-hour group lessons (6–12 participants) per week. Individuals were selected from three specialized outpatient services in São Paulo, Brazil; 46 people were willing to participate, 11 dropped out during the intervention and 4 were excluded due to low intelligence quotient (IQ), resulting in a final sample of 31 participants. Outcomes were assessed before (T0/baseline) and after (T1/directly) after the COP intervention, and at 3-week follow-up (T2/3 weeks after T1). We applied eight scales, of which four scales are analyzed in this article (Coming Out with Mental Illness Scale (COMIS), Cognitive Appraisal of Stigma as a Stressor (CogApp), Self-Stigma of Mental Illness Scale-Short Form (SSMIS) and Perceived Devaluation-Discrimination Questionnaire (PDDQ)). Results: People who completed the COP intervention showed a significant increase in the decision to disclose their diagnosis (22.5% in T0 vs 67.7% in T2). As to the perception of stigma as a stressor, mean values significantly increased after the intervention (T0 = 3.83, standard deviation (SD) = .92 vs T2 = 4.44, SD = 1.05; p = .006). Two results had marginal significance: self-stigma was reduced (T0 = 3.10, SD = 1.70 vs T2 = 2.73, SD = 1.87; p = .063), while perceived discrimination increased (T0 = 2.68, SD = .55 vs T2 = 2.93, SD = .75; p = .063). Conclusion: This study suggests that the COP group intervention facilitated participants’ disclosure decisions, and the increasing awareness of stigma as a stressor in life may have facilitated their decision to eventually disclose their disorder. The results raise questions that require further analysis, taking sociocultural factors into account, as stigma is experienced differently across cultures.