Perceived and experienced stigma in first-episode psychosis: A 1-year follow-up study
Open accessAbstract
OBJECTIVES: Perceived/experienced stigma and its relationship with clinical outcome were investigated across the first year of treatment in a large sample with first-episode psychosis (FEP). METHODS: FEP participants (n=112) in the TOP study were investigated at baseline and 1-year follow-up. Perceived/experienced stigma was measured with items from the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0), assessing problems because of barriers and hindrances, and living with dignity because of attitudes and actions of others. Clinical outcome included: symptoms, global functioning, self-rated disability and self-rated life satisfaction. RESULTS: In the total sample, 46% perceived/experienced stigma at baseline, which decreased significantly to 32% at 1-year follow-up. Perceived/experienced stigma was present in 1/5 at both time-points (Sustained stigma), in 2/5 at only one time-point (Transient stigma), and in 2/5 it was not present at either time-point (No stigma). Compared to the No stigma group, the Sustained stigma group had significantly higher levels of positive, excited and depressive symptoms and self-rated disability, as well as lower levels of global functioning and life satisfaction at 1year follow-up, while the Transient stigma group only had poorer functioning and higher self-rated disability. Yet the outcome variables improved across the first year of treatment in all three stigma groups. CONCLUSION: Perceived/experienced stigma was common in FEP, yet the rate decreased across the first year of treatment. Although there was some clinical improvement across the first year of treatment irrespective of stigma, stigma was related to poorer clinical outcome in a bidirectional manner. This suggests that perceived/experienced stigma is an important target in the early stages of treatment.
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Perceived stigma has been related to delayed treatment seeking.
“Perceived stigma has also been related to delayed treatment seeking (Mueser et al., 2020, Simonsen et al., 2019), as was also replicated in our study where patients and career described stigma as a cause for delay in seeking treatment.”
From Qualitative study to explore the perspectives and mental health experiences of first episode psychosis patients and their caregivers in North India (2024) · cites this paper as Simonsen et al., 2019
The Introduction states that stigma is associated with reduced help-seeking and longer pathways to care, which supports the general link to delayed treatment. It does not specifically attribute that link to perceived stigma; the study examines perceived and experienced stigma together and focuses on outcomes after treatment begins. (LLM, conf=0.84)
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“Further, one early psychosis study found that nearly half (46%) of young people experiencing FEP had either perceived or experienced stigma at a baseline interview (Simonsen et al., 2019).”
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“Stigma, a deeply discrediting attribute that diminishes someone’s identity (Goffman, 1963), has two facets: experienced stigma (meaning direct discrimination) and perceived stigma (anticipated prejudice; Simonsen et al., 2019; Van Brakel, 2006).”
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Influential
- Authors
- Simonsen, C., Aminoff, S. R., Vaskinn, A., Barrett, E. A., Faerden, A., Ueland, T., Andreassen, O. A., Romm, K. L., & Melle, I.
- Affiliations
- Oslo University Hospital (NO)
- Corresponding author
- Simonsen, Carmen
- ORCID
- Venue
- Comprehensive Psychiatry
- Publisher
- Elsevier BV
- Published
- 2019-11
- Volume
- 95
- Pages
- 152134
- ISSN
- 0010-440X (ISSN-L)
- OpenAlex
- W2979485320
- Cited by
- 28
- References
- 36
- Citations by year
- 2026: 3 · 2025: 8 · 2024: 5 · 2023: 3 · 2022: 4 · 2021: 4 · 2020: 1
- FWCI
- 2.83
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Comprehensive Psychiatry (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- NORA - Norwegian Open Research Archives (submittedVersion, cc-by-nc-nd)
- Funders
- Stiftelsen Kristian Gerhard Jebsen (_MED_008)
- Norges Forskningsråd (217776, 223273)
- Helse Sør-Øst RHF (2015-088, 2006258)
- Topics
- Social Sciences › Psychology › Social Psychology › Mental Health Treatment and Access
- Health Sciences › Medicine › Psychiatry and Mental health › Schizophrenia research and treatment
- Social Sciences › Arts and Humanities › Philosophy › Mental Health and Psychiatry
- Keywords
- perceived stigma, experienced stigma, first-episode psychosis, clinical outcomes, self-rated disability, global functioning, life satisfaction, early treatment, WHODAS 2.0
- MeSH terms
- Adult, Depression, Disability Evaluation, Female, Follow-Up Studies, Humans, Male, Personal Satisfaction, Prognosis, Psychotic Disorders, Young Adult, Social Stigma, Self Report
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