A survey on experienced and anticipated discrimination in first-episode psychotic patients: findings from the PICOS project

Background/Objectives: Most research on stigma and discrimination associated with mental illness focused on what attitude the general population has towards psychiatric patients. Few studies have been conducted so far on self-reported stigma in people with mental illness and very few explored the perception of patients experiencing first-episode psychosis. This survey aims to describe patterns and severity of experienced and anticipated discrimination in people with first-episode psychosis (FEP).

Methods: Cross-sectional survey conducted within the context of the Psychosis Incident Cohort Outcome Study (PICOS), a large multisite naturalistic research on FEP patients treated within public psychiatric sector in the Veneto Region (Italy). Experience and anticipated discrimination were assessed through face-to-face interviews one year after illness onset. The Italian version of Discrimination and Stigma Scale (DISC-11) was used, a standardized scale exploring whether respondents experienced and anticipated discrimination in a series of key areas of everyday life and social participation (i.e. work, marriage, parenting, housing, leisure and religious activities).

Results: 100 FEP patients (age M=34 years, SD=9.2; 56% male) were interviewed. Substantial clinical and social improvements occurred over the follow-up period. However, patients experienced discrimination in a number of life domains, such as relationship with family members (44%), making or keeping friends (32%), keeping or finding a job (24%) and intimate or sexual relationships (23%). Anticipated discrimination was also common in looking for a close relationship (37%), applying for work (34%); moreover, 65% felt the need to conceal the diagnosis and 37% felt that other people avoided them. Experienced discrimination was positively associated with self-perceived basic needs (i.e. accommodation, food, daytime activities) (independent samples t-test, p<0.005).

Discussion/Conclusions: Persons with psychosis perceive and anticipate discrimination in a series of key life areas in the very beginning of their illness course. Experienced discrimination mainly impacts on areas related to basic requirements for a person to live a decent everyday life and to achieve full integration in the society. Anticipated discrimination limits the access to a number of life opportunities and community resources in one third of patients regardless of any symptomatological improvement and levels of functioning achieved. This suggests the need for mental health services to develop specific and early strategies aiming to enhance patients’ self-esteem and promote their full social integration.

Funding: Grants from Fondazione Cariverona to Prof. Tansella; from Ministry of Health, Ricerca Sanitaria Finalizzata 2004 to Prof. Ruggeri; and from Ministry of Health, Ricerca Sanitaria Finalizzata 2005 to Dr. Lasalvia.

Keywords: Stigmatization, mental health, first episode psychosis.