Introduction
People with mental health problems do not only suffer from symptoms related to their condition, but also from disadvantages through society's reactions. Society stereotypes, misconceptions on mental disorders (e.g. dangerousness, unpredictability, incompetence), and prejudicial reactions against people suffering from mental health problems lead to stigma (WHO, 2001). Stigma arises from the co-occurrence of processes reflecting labeling, stereotyping, separation, status loss, and discrimination (Link, Struening, Cullen, Shrout, & Dohrenwend, Reference Link, Struening, Cullen, Shrout and Dohrenwend1989). These processes can operate in a number of settings and are evident through various direct and indirect social interactions. Stereotypes, prejudice, and discrimination endorsed by the general population represent the ‘public stigma’. People with mental health problems may become aware of the stereotypes about mental illness held by the general population, agree with such stereotypes, and believe that they apply to them. This process is referred to as ‘internalized sigma’ (Corrigan & Watson, Reference Corrigan and Watson2002). Because of internalized stigma and related self-discriminating behavior, individuals with mental health problems may lose self-esteem, self-confidence, and self-efficacy, and fail to pursue work, social relations, and independent living opportunities (Link, Struening, Neese-Todd, Asmussen, & Phelan, Reference Link, Struening, Neese-Todd, Asmussen and Phelan2001). Public and internalized stigma may affect life of people with severe mental disorders in terms of social isolation (Lysaker, Davis, Warman, Strasburger, & Beattie, Reference Lysaker, Davis, Warman, Strasburger and Beattie2007), exclusion from employment (Stuart, Reference Stuart2006), reduction of intimate relationships and parenting (Lasalvia et al., Reference Lasalvia, Zoppei, Bonetto, Tosato, Zanatta, Cristofalo and Ruggeri2014), difficulties or delay in help-seeking (Clement et al., Reference Clement, Schauman, Graham, Maggioni, Evans-Lacko, Bezborodovs and Thornicroft2015), and poorer physical health care (Henderson et al., Reference Henderson, Noblett, Parke, Clement, Caffrey, Gale-Grant and Thornicroft2014).
Over the past two decades, there has been a growing interest to identify young people at risk for psychosis with the aim of modifying the early course of illness and preventing the onset of full-blown psychosis and its long-term consequences. The psychosis risk state refers to people presenting with prodromal or subsyndromal psychotic symptoms suggestive of a pre-psychotic phase or attenuated psychosis syndrome (APS) (Fusar-Poli et al., Reference Fusar-Poli, Borgwardt, Bechdolf, Addington, Riecher-Rossler, Schultze-Lutter and Yung2013). However, the psychosis risk state may be associated with stigmatizing responses (Corcoran, Malaspina, & Hercher, Reference Corcoran, Malaspina and Hercher2005). This is relevant, also in light of stigma potentially affecting all individuals referring to early intervention services for psychosis independent of whether they ever progress to full-blown psychosis (Yang, Wonpat-Borja, Opler, & Corcoran, Reference Yang, Wonpat-Borja, Opler and Corcoran2010). In fact, within 2–2.5 years from identification only 30–35% of people at risk for psychosis eventually develop the disorder (Fusar-Poli et al., Reference Fusar-Poli, Bonoldi, Yung, Borgwardt, Kempton, Valmaggia and McGuire2012). Also, transition rates seem to have declined more recently, possibly because of earlier referral and intervention (Riecher-Rossler & Studerus, Reference Riecher-Rossler and Studerus2017). Thus, the large majority of people at risk for psychosis may be exposed to stigma for a condition they will never develop.
Recently, an increasing number of studies have weighted harms and benefits associated with early intervention services for psychosis in terms of stigma and related consequences for patients and their families (Moritz, Gawęda, Heinz, & Gallinat, Reference Moritz, Gawęda, Heinz and Gallinat2019). Also, a previous review specifically focusing on pathways to care suggested a detrimental effect of stigma among people at their first episode of psychosis as well as in the psychosis-risk state (Gronholm, Thornicroft, Laurens, & Evans-Lacko, Reference Gronholm, Thornicroft, Laurens and Evans-Lacko2017). However, to date no study has systematically reviewed how stigma affects people at risk of psychosis on a wider range of domains, and the potential underlying mechanisms.
The present review aims to summarize all available data generated by studies that have investigated stigma and discrimination associated with being at risk for psychosis by carrying out a systematic literature search for all such data.
Objectives
Our main objective is to systematically review findings from qualitative, quantitative, and mixed-methods research studies examining stigma and discrimination in people at risk for psychosis. Specifically, our aim is: (1) to review the occurrence of internalized stigma, stigma stress, and perceived discrimination in people at risk for psychosis as well as public stigma of the psychosis risk state and psychosis risk label-related stigma. If this is the case, our subsequent aims is: (2) to review the effect of stigma on outcomes of the psychosis risk state; and (3) to review whether other factors such as socio-demographic variables modulate stigma in people at risk for psychosis.
Methods
Inclusion/exclusion criteria
In order to summarize previous literature on the topic, inclusion criteria for studies were: (1) human studies; (2) studies investigating the occurrence of any form of stigma in individuals at risk for psychosis; (3) studies investigating the effect of stigma on outcomes of the psychosis risk state; and (4) studies investigating factors modulating stigma in individuals at risk for psychosis. In order to provide a comprehensive evaluation of the association between stigma and psychosis-risk state, a wide range of different measures of outcomes that have been reported in the literature were considered, including, but not limited to, questionnaire data, (semi-structured) interviews, performance, and psychopathological and behavioral measures. Exclusion criteria were: (1) studies where stigma measures were not investigated with reference to the psychosis-risk state; (2) studies in which the psychosis risk state was not differentiated from other clinical conditions; and (3) studies that primarily assessed psychosis-risk state distress parameters other than stigma.
Search strategy and data extraction
A literature search was performed using electronic databases (MEDLINE, Web of Science and Scopus) for any published original English-language research, using a combination of search terms describing the psychosis-risk state (‘clinical high risk,’ ultra-high risk,” ‘at risk mental state,’ ‘attenuated psychosis,’ ‘brief psychotic episodes/disorders,’ ‘prodromal psychosis’) and the condition of stigma (‘stigma,’ ‘discrimination,’ ‘prejudice’), on 26 July 2019. Reference lists of eligible studies were also screened to identify additional relevant studies. Publication data was extracted and cross-checked by two authors (MC and AL).
Risk of bias
Risk of bias and quality assessment of the methodologically heterogeneous group of studies reviewed here (Table 1) required a suitably inclusive and flexible approach. For this purpose, an adapted set of criteria suggested by the Agency for Healthcare Research and Quality guidance (West et al., Reference West, King, Carey, Lohr, McKoy, Sutton and Lux2002), amended as appropriate for interventional studies in humans was used (Table 2). Risk of systematic bias across human studies was further identified by assessing all papers for possible confounding factors such as comorbid non-psychotic mental health disorders and substance use (Table 2).
Table 1. Summary of studies investigating stigma and discrimination in individuals at risk for psychosis
USA, United States of America; UK, United Kingdom; CHR, Clinical High Risk; ROP, Recent Onset Psychosis; -fam, family members; OMI, Opinions about Mental Illness scale; FEIS, Family Experiences Interview Schedule; NS, Not Significant; ARMS, At Risk Mental State; CT, Cognitive Therapy; FU, Follow-Up; PBEQ, Personal Beliefs about Experiences Questionnaire; UHR, Ultra High Risk; FHR, Family High Risk; HC, Healthy Controls; PDS, Perceived Discrimination Scale; SCZ, schizophrenia; MANSA, Manchester Short Assessment of Quality of Life; RSES, Rosenberg's Self-Esteem Scale; GSE, General Self-Efficacy Scale; PANSS, Positive and Negative Syndrome Scale; BCSS, Brief Core Schema Scale; APS, Attenuated Psychotic Symptoms; CAARMS, Comprehensive Assessment for At-Risk Mental States; BDI-pc, Beck Depression Inventory for primary care; SIAS, Social Interaction Anxiety Scale; NAE, Negative Appraisals of Experiences; SAE, Social Acceptance of Experiences; UTC, Unusual Thought Content (UTC), NBI, Non-Bizarre Ideas (NBI), PA, Perceptual Abnormalities (PA), DS, Disorganized Speech; ICD-10, International Classification of Diseases 10th revision; BAI, Beck Anxiety Inventory; PQ-Likert, Prodromal Questionnaire-Likert; RS-race, race-based rejection sensitivity; SDSS, Seven-Domain Stigma Scale; PLE, Psychosis-Like Experiences; SSPS, State Social Paranoia Scale; VR, Virtual Reality; PEDQ-cv, Perceived Ethnic Discrimination Questionnaire-community version; SOPS, Scale of Prodromal Symptoms; POPS, Presence Of Psychotic Symptoms; HRSD, Hamilton Rating Scale for Depression; SOFAS, Social and Occupational Functioning Assessment Scale; SIPS, Structured Interview for Prodromal Syndromes; CBT, Cognitive Behavioral Therapy; FH, Family History; AUS/DUS, Alcohol and Drug Use Scale; GFS, Global Functioning Scale; CTAS, Childhood Trauma and Abuse Scale; WASI, Wechsler Abbreviated Scale of Intelligence; DDS, Devaluation and Discrimination Scale; DCFS, Devaluation of Consumer Families Scale; ATSPPH-SF, Attitudes towards Seeking Professional Psychological Help; ER-40, Penn Emotion Recognition Task; FER, face emotion recognition; PR, Psychosis Risk; >, higher than; <, lower than; ↑, increase; ↓, decrease
Table 2. Methodological quality of studies investigating stigma and discrimination in individuals at risk for psychosis
CHR, Clinical High Risk; ROP, Recent Onset Psychosis; -fam, family members; SIPS, Structured Interview for Prodromal Syndromes; SOPS, Scale of Prodromal Symptoms; DIGS, Diagnostic Interview for Genetic Studies; M, Mean; s.d., Standard Deviation; NA, Not Applicable; ARMS, At Risk Mental State; UHR, Ultra High Risk; CAARMS, Comprehensive Assessment of At-Risk Mental States; min, minutes; IPA, Interpretative Phenomenological Analysis; CT, Cognitive Therapy; mon., monitoring; ITT, Intention to Treat; SPI, Schizophrenia Proneness Interview; IQ, Intelligence Quotient; FHR, Family High Risk; HC, Healthy Controls; FIGS, Family Interview for Genetic Studies (FIGS); COPS, Criteria of Prodromal Syndromes; ANOVA, Analysis of Variance; MANOVA, multivariate ANOVA; CNS, Central Nervous System; PCA, Principal Component Analysis; ADHD, Attention Deficit and Hyperactivity Disorder; PQ-Likert, Prodromal Questionnaire-Likert; NS, Not Significant; DSM-5 APS, Diagnostic and Statistical Manual of mental disorders 5th edition Attenuated Psychotic Syndrome; UTB, Unified Theory of Behaviour; ANCOVA, analysis of covariance; MANCOVA, repeated measures multivariate ANCOVA; DSM-IV-TR, Diagnostic and Statistical Manual of mental disorders 4th edition; EFA, Exploratory Factor Analysis; CBT, Cognitive Behavioral Therapy; FH, Family History; PTSD, Post-Traumatic Stress Disorder; SAD, Substance Abuse Disorder; >, greater than; <, lower than
Nomenclature across studies
For the purpose of this review, in order to adopt a consistent nomenclature throughout the paper, we subsumed under the umbrella term of ‘psychosis-risk’ (PR) a large array of substantially overlapping conditions referring to the broad concept of elevated risk for developing psychosis, including clinical high risk (CHR), ultra high risk (UHR), at risk-mental-state (ARMS), APS, and prodromal psychosis, at is has been done before (Yang et al., Reference Yang, Woodberry, Link, Corcoran, Bryant, Shapiro and Seidman2019).
Results
Evidence at a glance
In total 643 records were identified. All abstracts of the records were screened against the inclusion and exclusion criteria (Fig. 1). A final list of 38 studies reporting on 8642 study participants (male = 3754, female = 4027; not specified = 861; Table 1) were identified which specifically investigated: (i) the occurrence of stigma in the PR state; (ii) the effects of stigma on outcomes of the PR state; and (iii) additional sources of stigma among PR individuals. These studies have used different experimental designs and studied heterogeneous populations. Further information on methodological quality of studies is reported in Table 2.
Fig. 1. PRISMA flowchart of search strategy for systematic review.
Occurrence of stigma in the PR state
Internalized stigma and related emotions among PR individuals
Out of 38 studies included in this systematic review, 7 specifically focused on internalized stigma (Table 1). However, two studies are not analytic, being in one case a descriptive study (Uttinger et al., Reference Uttinger, Koranyi, Papmeyer, Fend, Ittig, Studerus and Riecher-Rossler2018) and in the other a case report (Baer, Shah, & Lepage, Reference Baer, Shah and Lepage2019). Three studies compare PR individuals with a control group of (i) healthy subjects with reference to multiple sources of stigma other than mental health such as appearance, age, gender, ethnicity, skin color, religion, disability, and sexual orientation (Saleem et al., Reference Saleem, Stowkowy, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2014), (ii) an impaired sample with non-psychotic disorders (Yang et al., Reference Yang, Link, Ben-David, Gill, Girgis, Brucato and Corcoran2015), and (iii) PR individuals receiving cognitive therapy (Morrison et al., Reference Morrison, Birchwood, Pyle, Flach, Stewart, Byrne and French2013) (Table 2).
Research indicates that PR individuals do experience negative thoughts and emotions about themselves more frequently than healthy subjects (Saleem et al., Reference Saleem, Stowkowy, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2014), and do report higher stereotype awareness related to their condition compared to patients with non-psychotic disorders (Yang et al., Reference Yang, Link, Ben-David, Gill, Girgis, Brucato and Corcoran2015). Also, the higher the stereotype awareness, the higher is the agreement with them, which in turn is associated with the experience of negative emotions (Yang et al., Reference Yang, Link, Ben-David, Gill, Girgis, Brucato and Corcoran2015). Complementary evidence from semi-structured interviews indicates high levels of internalized stigma in PR individuals (Uttinger et al., Reference Uttinger, Koranyi, Papmeyer, Fend, Ittig, Studerus and Riecher-Rossler2018). PR individuals reporting internalized stigma, negative appraisals of their unusual experiences, reduced social acceptance of such experiences, and shame are more likely to experience high levels of distress related to their condition (Baer et al., Reference Baer, Shah and Lepage2019; Pyle et al., Reference Pyle, Stewart, French, Byrne, Patterson, Gumley and Morrison2015) and to misattribute fear to non-fearful stimuli (Larsen et al., Reference Larsen, Herrera, Bilgrami, Shaik, Crump, Sarac and Corcoran2019). It is however interesting that a cognitive component of internalized stigma, i.e. negative appraisal of unusual experiences, seems to decrease overtime (Morrison et al., Reference Morrison, Birchwood, Pyle, Flach, Stewart, Byrne and French2013), and along with anxiety due to fear of transitioning to psychosis (Baer et al., Reference Baer, Shah and Lepage2019), may be treated by specific cognitive therapies.
Stigma stress among PR individuals
This review identified three studies specifically quantifying the occurrence of stigma stress among PR individuals (Rusch et al., Reference Rusch, Heekeren, Theodoridou, Dvorsky, Muller, Paust and Rossler2013, Reference Rusch, Corrigan, Heekeren, Theodoridou, Dvorsky, Metzler and Rossler2014a, Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b) (Table 1). All of them are analytic, and one study has a control group, comparing PR individuals with PR individuals dropping out of care (Rusch et al., Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b) (Table 2). Stigma may become a stressful condition when stigma-related harm is perceived as exceeding the person's coping resources (Rusch et al., Reference Rusch, Heekeren, Theodoridou, Dvorsky, Muller, Paust and Rossler2013). In turn, high levels of stigma stress among PR individuals are associated with higher shame (Rusch et al., Reference Rusch, Corrigan, Heekeren, Theodoridou, Dvorsky, Metzler and Rossler2014a) and the persistence of increased stigma stress over time is also associated with a higher likelihood of self-labeling as mentally ill (Rusch et al., Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b).
Perceived discrimination among PR individuals
This review identified four studies specifically assessing whether PR individuals perceive discrimination in the society because of their condition (Georgopoulos et al., Reference Georgopoulos, Stowkowy, Liu, Cadenhead, Cannon, Cornblatt and Addington2019; Rusch et al., Reference Rusch, Corrigan, Heekeren, Theodoridou, Dvorsky, Metzler and Rossler2014a; Saleem et al., Reference Saleem, Stowkowy, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2014; Uttinger et al., Reference Uttinger, Koranyi, Papmeyer, Fend, Ittig, Studerus and Riecher-Rossler2018) (Table 1). All of them indicate that discrimination plays an important role in the experience of a PR state. Also, two have a control group, specifically comparing (i) PR individuals with and without a family history of psychosis (Georgopoulos et al., Reference Georgopoulos, Stowkowy, Liu, Cadenhead, Cannon, Cornblatt and Addington2019) and (ii) PR individuals and healthy subjects with reference to multiple sources of stigma other than mental health such as appearance, age, gender, ethnicity, skin color, religion, disability, and sexual orientation (Saleem et al., Reference Saleem, Stowkowy, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2014). Another study is not analytic (Uttinger et al., Reference Uttinger, Koranyi, Papmeyer, Fend, Ittig, Studerus and Riecher-Rossler2018) (Table 2). In particular, most PR individuals report being aware of psychosis' negative image in the public opinion and the media as well as of stereotypes associated with it, preferring not to disclose their condition because of expected or previously experienced negative reactions (Uttinger et al., Reference Uttinger, Koranyi, Papmeyer, Fend, Ittig, Studerus and Riecher-Rossler2018). Moreover, perceived discrimination among PR individuals seems to be higher than that experienced by healthy peers (Saleem et al., Reference Saleem, Stowkowy, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2014), independent of having also a family history of psychosis (Georgopoulos et al., Reference Georgopoulos, Stowkowy, Liu, Cadenhead, Cannon, Cornblatt and Addington2019), and to positively correlate with shame about the condition, self-labeling as mentally ill, and stigma stress (Rusch et al., Reference Rusch, Corrigan, Heekeren, Theodoridou, Dvorsky, Metzler and Rossler2014a).
Public stigma of the PR state
Only two analytic studies assessed public stigma of the PR condition (He, Eldeeb, Cardemil, & Yang, Reference He, Eldeeb, Cardemil and Yang2019; Lee et al., Reference Lee, Hui, Ching, Lin, Chang, Chan and Chen2016) (Table 1), in one case comparing it with that expressed by mental health professionals (Lee et al., Reference Lee, Hui, Ching, Lin, Chang, Chan and Chen2016) (Table 2). Public stigma results to be higher among the general public compared to mental health professionals as well as in people with an intermediate level of education (e.g. diploma), who have never worked or volunteered in mental health, and who have frequently encountered in the public someone who appeared to be mentally ill (Lee et al., Reference Lee, Hui, Ching, Lin, Chang, Chan and Chen2016). In addition, the general public is more likely to support the PR individuals' help-seeking process if their condition affects their family obligations rather than their aspirations, and male and low-educated members of the public are overall less supportive (He et al., Reference He, Eldeeb, Cardemil and Yang2019).
The labeling process in PR individuals
Research on labeling-related issues (both studies focusing on self-labeling and those addressing labeling from external sources) represents the area mostly investigated, with 15 studies conducted over the last 10 years. Overall, six studies seem to indicate mainly positive effects of being labeled as PR individuals in terms of increasing knowledge, help-seeking, and help-giving behaviors (Parrish, Kim, Woodberry, & Friedman-Yakoobian, Reference Parrish, Kim, Woodberry and Friedman-Yakoobian2019; Rusch et al., Reference Rusch, Heekeren, Theodoridou, Dvorsky, Muller, Paust and Rossler2013; Stowkowy & Addington, Reference Stowkowy and Addington2013; Trask, Kameoka, Schiffman, & Cicero, Reference Trask, Kameoka, Schiffman and Cicero2019; Welsh & Tiffin, Reference Welsh and Tiffin2012; Yang et al., Reference Yang, Link, Ben-David, Gill, Girgis, Brucato and Corcoran2015). Instead, six other studies report negative consequences (Anglin, Greenspoon, Lighty, Corcoran, & Yang, Reference Anglin, Greenspoon, Lighty, Corcoran and Yang2014; Baba et al., Reference Baba, Nemoto, Tsujino, Yamaguchi, Katagiri and Mizuno2017; Kim et al., Reference Kim, Polari, Melville, Moller, Kim, Amminger and Nelson2017; Lee et al., Reference Lee, Hui, Ching, Lin, Chang, Chan and Chen2016; Rusch et al., Reference Rusch, Corrigan, Heekeren, Theodoridou, Dvorsky, Metzler and Rossler2014a, Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b). Three more studies report mixed effects (Lee et al., Reference Lee, Ching, Hui, Lin, Chang, Chan and Chen2017; Yang et al., Reference Yang, Anglin, Wonpat-Borja, Opler, Greenspoon and Corcoran2013; Yang et al., Reference Yang, Woodberry, Link, Corcoran, Bryant, Shapiro and Seidman2019). The discrepancies across studies seem to be largely due to the outcome measure (Table 1) and heterogeneity of the reference group, when present (Table 2).
Early studies suggest that the PR label elicits feelings of validation and relief (Welsh & Tiffin, Reference Welsh and Tiffin2012), increases mental health service use (Rusch et al., Reference Rusch, Heekeren, Theodoridou, Dvorsky, Muller, Paust and Rossler2013), and does not increase further the potential discrimination perceived because of a family risk of psychosis (Stowkowy & Addington, Reference Stowkowy and Addington2013). Studies of comparison with other labels suggest that PR labels elicit only slightly more (Trask et al., Reference Trask, Kameoka, Schiffman and Cicero2019) or no different stigma (Parrish et al., Reference Parrish, Kim, Woodberry and Friedman-Yakoobian2019) than control labels (e.g. breakup) in healthy peers, and have lower impact than non-psychotic labels (e.g. depression or anxiety) on PR individuals themselves (Yang et al., Reference Yang, Woodberry, Link, Corcoran, Bryant, Shapiro and Seidman2019). Moreover, symptom-related stigma seems to have a greater impact than labeling-related stigma on PR individuals, suggesting that labeling-related stigma, if present, does not fully permeate self-concept at this early stage (Yang et al., Reference Yang, Link, Ben-David, Gill, Girgis, Brucato and Corcoran2015).
In contrast, other studies found that labeling as PR individual is associated with higher stigma and a number of potential adverse health effects (Rusch et al., Reference Rusch, Corrigan, Heekeren, Theodoridou, Dvorsky, Metzler and Rossler2014a, Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b), with self-labeling mattering more other-labeling (Yang et al., Reference Yang, Woodberry, Link, Corcoran, Bryant, Shapiro and Seidman2019). In particular, investigations conducted among college students (Yang et al., Reference Yang, Anglin, Wonpat-Borja, Opler, Greenspoon and Corcoran2013), patients with full-blown mental disorders (Baba et al., Reference Baba, Nemoto, Tsujino, Yamaguchi, Katagiri and Mizuno2017), as well as members of the general public and mental health professionals (Baba et al., Reference Baba, Nemoto, Tsujino, Yamaguchi, Katagiri and Mizuno2017; Lee et al., Reference Lee, Hui, Ching, Lin, Chang, Chan and Chen2016), indicate that the PR label may elicit similar (Baba et al., Reference Baba, Nemoto, Tsujino, Yamaguchi, Katagiri and Mizuno2017) or greater (Lee et al., Reference Lee, Hui, Ching, Lin, Chang, Chan and Chen2016; Yang et al., Reference Yang, Anglin, Wonpat-Borja, Opler, Greenspoon and Corcoran2013) status loss, discrimination, and overall stigma than non-psychotic disorders such as major depression and generalized anxiety disorder. The belief that the PR state might be a long lasting condition contributes to such a high level of stigma (Lee et al., Reference Lee, Hui, Ching, Lin, Chang, Chan and Chen2016), which in some cases does not differ from that endorsed for schizophrenia (Yang et al., Reference Yang, Anglin, Wonpat-Borja, Opler, Greenspoon and Corcoran2013). Also, PR individuals who have transitioned to psychosis or with a family history of psychosis find the identification of the PR state of little help, reporting more stigma associated with it, and urging for its renaming (Kim et al., Reference Kim, Polari, Melville, Moller, Kim, Amminger and Nelson2017). Complementary evidence suggests that college students who spontaneously label the PR state with psychosis-related terms endorse higher levels of stigma compared to those who consider the PR state as a non-psychotic or non-psychiatric condition (Anglin et al., Reference Anglin, Greenspoon, Lighty, Corcoran and Yang2014). However, providing accurate information to students about the PR state seems to mitigate some misconceptions about the condition, reducing by one-third PR label-related stigma (Yang et al., Reference Yang, Anglin, Wonpat-Borja, Opler, Greenspoon and Corcoran2013).
A label such psychotic-like experiences (PLE), indicating brief and self-remitting symptomatic manifestations and not necessarily reflecting an underlying mental disorder, results to be the least stigmatizing label, followed by PR and depression, and then schizophrenia as the most stigmatizing condition (Baba et al., Reference Baba, Nemoto, Tsujino, Yamaguchi, Katagiri and Mizuno2017; Lee et al., Reference Lee, Hui, Ching, Lin, Chang, Chan and Chen2016). Recent findings, despite disconfirming that discrimination would differ across psychiatric labels, indicate that a term reflecting uncertainty, potential reversibility, and neutrality, and not dangerousness or inevitable progression to full-blown psychosis, is better accepted (Lee et al., Reference Lee, Ching, Hui, Lin, Chang, Chan and Chen2017).
Effects of stigma on outcomes of the PR state
As accumulating evidence converges on the presence of different forms of stigma related to the PR state, most interest is given to its effect on well-being of PR individuals and their families as well as and their engagement with services (Tables 1 and 2).
Mental health
Apart from one study (Saleem et al., Reference Saleem, Stowkowy, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2014), eight other studies indicate an association between different forms of stigma and poor mental health (Pyle et al., Reference Pyle, Stewart, French, Byrne, Patterson, Gumley and Morrison2015; Rusch et al., Reference Rusch, Corrigan, Heekeren, Theodoridou, Dvorsky, Metzler and Rossler2014a, Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b, Reference Rüsch, Heekeren, Theodoridou, Müller, Corrigan, Mayer and Rössler2015; Stowkowy et al., Reference Stowkowy, Liu, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2016; Xu et al., Reference Xu, Mayer, Muller, Heekeren, Theodoridou, Dvorsky and Rusch2016a, Reference Xu, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rusch2016c; Yang et al., Reference Yang, Link, Ben-David, Gill, Girgis, Brucato and Corcoran2015). Evidence indicates that stigma stress negatively influences general wellbeing of PR individuals (Rusch et al., Reference Rusch, Corrigan, Heekeren, Theodoridou, Dvorsky, Metzler and Rossler2014a), even in the longer-term (Rusch et al., Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b), also mediating the harmful effect of perceived public stigma, self-labeling, and shame (Rusch et al., Reference Rusch, Corrigan, Heekeren, Theodoridou, Dvorsky, Metzler and Rossler2014a). Moreover, stigma stress (Rüsch et al., Reference Rüsch, Heekeren, Theodoridou, Müller, Corrigan, Mayer and Rössler2015) and perceived discrimination (Stowkowy et al., Reference Stowkowy, Liu, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2016) increase the risk of transition to psychosis at follow up, after adjusting for patients' characteristics at baseline (Rüsch et al., Reference Rüsch, Heekeren, Theodoridou, Müller, Corrigan, Mayer and Rössler2015) and independent of trauma and bullying (Stowkowy et al., Reference Stowkowy, Liu, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2016). These two studies (Rüsch: R; Stowkowy; S) are broadly similar in terms of PR diagnostic criteria and age, while differing for follow-up duration (R: 1 year; S: 2 years), sample size (R: 170; S: 1044, the largest study reviewed here), and transition to psychosis criteria (R: schizophrenia diagnosis; S: symptom intensity threshold). Due to their longitudinal design, they support stigma as a stressor that could be an additional risk factor for psychosis. However, this effect is likely to be indirect. In fact, both perceived discrimination and internalized stigma seem to have a modest or no effect on the severity of the prodromal symptoms of psychosis (Pyle et al., Reference Pyle, Stewart, French, Byrne, Patterson, Gumley and Morrison2015; Saleem et al., Reference Saleem, Stowkowy, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2014), whereas internalized stigma is suggested to exacerbate depression and social anxiety, with the effect on depression that persists at a 6-month assessment (Pyle et al., Reference Pyle, Stewart, French, Byrne, Patterson, Gumley and Morrison2015). Further, label-related negative emotions seem to predict anxious reactions while symptom-related negative emotions tend to be associated with depression (Yang et al., Reference Yang, Link, Ben-David, Gill, Girgis, Brucato and Corcoran2015), thus suggesting that the detrimental effect of stigma on transition to psychosis, if present, does not necessarily occur through its worsening effect on symptoms of psychosis. Finally, internalized stigma (Pyle et al., Reference Pyle, Stewart, French, Byrne, Patterson, Gumley and Morrison2015), self-labeling (Xu et al., Reference Xu, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rusch2016c), and an intensification of stigma stress over time (Xu et al., Reference Xu, Mayer, Muller, Heekeren, Theodoridou, Dvorsky and Rusch2016a), but not perceived stigma (Xu et al., Reference Xu, Mayer, Muller, Heekeren, Theodoridou, Dvorsky and Rusch2016a), seem to increase the rate of suicidality at follow-up, independent of socio-demographic and clinical characteristics (Xu et al., Reference Xu, Mayer, Muller, Heekeren, Theodoridou, Dvorsky and Rusch2016a). Social isolation results to lie on the causal pathway between self-labeling and stigma stress on the one hand and suicidality on the other hand (Xu et al., Reference Xu, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rusch2016c).
Service engagement
Of six studies evaluating service engagement among PR individuals, four report negative effects of stigma-related factors, including perceived discrimination (Rusch et al., Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b) as well as negative beliefs, emotions, and image consideration (Ben-David, Cole, Brucato, Girgis, & Munson, Reference Ben-David, Cole, Brucato, Girgis and Munson2018; Ben-David, Cole, Brucato, Girgis, & Munson, Reference Ben-David, Cole, Brucato, Girgis and Munson2019), with an estimated 20% of PR individuals prematurely interrupting their contact with treating services (Kotlicka-Antczak et al., Reference Kotlicka-Antczak, Pawelczyk, Podgorski, Zurner, Karbownik and Pawelczyk2018). Another study indicates negative effects only if stigma persists overtime and especially in reducing engagement with psychotherapy, while self-label would improve medication acceptance (Xu et al., Reference Xu, Muller, Heekeren, Theodoridou, Dvorsky, Metzler and Rusch2016b). Finally, depending on the type of stigma, one more study suggests either negative (stigma stress) or no effects (perceived public stigma) (Rusch et al., Reference Rusch, Heekeren, Theodoridou, Dvorsky, Muller, Paust and Rossler2013).
Family members
Of three studies evaluating the impact of stigma on families of PR individuals (associative stigma), one suggests no effects (Wong et al., Reference Wong, Davidson, Anglin, Link, Gerson, Malaspina and Corcoran2009), one negative effects (Baron, Salvador, & Loewy, Reference Baron, Salvador and Loewy2019), and the latter both positive and negative effects (He et al., Reference He, Eldeeb, Cardemil and Yang2019), with high heterogeneity mostly accounting for such discrepancies (Table 2). Specifically, a both descriptive and analytic early study comparing families of PR individuals with families of people at their psychosis onset found in the former a relatively low associative stigma (Wong et al., Reference Wong, Davidson, Anglin, Link, Gerson, Malaspina and Corcoran2009). Instead, a subsequent descriptive study with no control group indicates that stigma represents a serious problem also for family members of PR individuals as it affects disclosure decisions because of potential repercussions and public's judgment (Baron et al., Reference Baron, Salvador and Loewy2019). The latter study indicates a direct relationship between public stigma towards PR individuals and that towards their family members, even though family stigma is also associated with positive attitudes in the public towards the PR individuals' help-seeking process (He et al., Reference He, Eldeeb, Cardemil and Yang2019).
Additional sources of stigma among PR individuals
This systematic review identified eight studies, mainly analytic (N = 7), evaluating whether other factors may contribute to stigma in the prodromal phases of psychosis (Table 1). Most of them have a control group (N = 5), mainly a group of healthy controls (N = 4) (Table 2). Studies indicate higher levels of perceived discrimination in a number of domains, including appearance, age, skin color, religion, disability, and sexual orientation, in PR individuals compared to a control group of healthy subjects (Saleem et al., Reference Saleem, Stowkowy, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2014; Stowkowy et al., Reference Stowkowy, Liu, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2016; Ward et al., Reference Ward, Lawson, Addington, Bearden, Cadenhead, Cannon and Perkins2018). PR individuals reporting higher levels of perceived discrimination are also more likely to be older (Saleem et al., Reference Saleem, Stowkowy, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2014) and smokers (Ward et al., Reference Ward, Lawson, Addington, Bearden, Cadenhead, Cannon and Perkins2018). Other studies suggest that racial discrimination is higher among PR individuals compared to healthy subjects (Shaikh et al., Reference Shaikh, Ellett, Dutt, Day, Laing, Kroll and Valmaggia2016). Also, along with anxious expectations of rejection (Anglin, Greenspoon, Lighty, & Ellman, Reference Anglin, Greenspoon, Lighty and Ellman2016), racial discrimination seems to exacerbate the distress associated with prodromal psychotic symptoms (Anglin, Lui, Espinosa, Tikhonov, & Ellman, Reference Anglin, Lui, Espinosa, Tikhonov and Ellman2018), making ethnic minorities and immigrants particularly vulnerable to stigmatizing reactions. In this regard, sense of shame and need to conceal the patient's illness are higher in family members of PR individuals from ethnic minorities (Wong et al., Reference Wong, Davidson, Anglin, Link, Gerson, Malaspina and Corcoran2009). Finally, when interviewed on the opportunity to undergo genetic testing for schizophrenia, PR individuals express the fear of being stigmatized because of genetic information (Lawrence, Friesen, Brucato, Girgis, & Dixon, Reference Lawrence, Friesen, Brucato, Girgis and Dixon2016).
Discussion
To our knowledge, this is the first systematic review examining all studies published so far that addressed stigma and discrimination in people at risk for psychosis (PR). A summary of evidence is provided in Box 1.
Box 1. Should we be concerned about stigma in the PR state? Summary of evidence
(i) PR individuals do experience more internalized stigma and perceive more discrimination than healthy subjects or patients with non-psychotic disorders, with negative consequences in terms of distress, shame, and fear.
(ii) Stigma does occur in the general public, especially in those with a low level of education or holding stereotyped beliefs because of no direct experience of the PR state.
(iii) PR labeling is equally associated with both positive (e.g. validation and relief) and negative effects (e.g. status loss and discrimination).
(iv) Stigma associated with the PR label is not unequivocally higher than that elicited by non-psychotic labels neither always similar to that elicited by the schizophrenia label, probably because psychiatric labels are understood differently in different countries and populations as well as depending on the personal background.
(v) A label reflecting the uncertainty and potential reversibility of the PR state, highlighting that progression to full-blown psychosis is not a given, is however less stigmatizing and better accepted among the general public, despite still considered carrying a stigma for the PR individuals themselves.
(vi) Stigma is associated with a worse outcome of PR individuals, including higher rates of transition to psychosis and suicidality, probably through an exacerbation of non-psychotic symptomatology and social isolation respectively.
(vii) Stigma, especially when internalized and sustained overtime, results in a poorer engagement with services.
(viii) Family members of people at PR may suffer from associative stigma.
(ix) Other factors worsen the stigma experienced by PR individuals, including being older, smoker, and of an ethnic minority as well as being subject to a genetic investigation for psychosis.
(x) Internalized stigma and related maladaptive beliefs may benefit from cognitive behavioral therapies.
Psychosis-risk state: a potentially stigmatizing condition
Studies reviewed here indicate that being at risk for psychosis may trigger a stigmatizing process. When stigma towards the PR individual develops among the general public (He et al., Reference He, Eldeeb, Cardemil and Yang2019; Lee et al., Reference Lee, Hui, Ching, Lin, Chang, Chan and Chen2016), the PR person becomes aware of it (Uttinger et al., Reference Uttinger, Koranyi, Papmeyer, Fend, Ittig, Studerus and Riecher-Rossler2018), tends to agree with it, and experiences negative emotions (Yang et al., Reference Yang, Link, Ben-David, Gill, Girgis, Brucato and Corcoran2015), that are significantly higher than those normally experienced by healthy people (Saleem et al., Reference Saleem, Stowkowy, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2014). When outweighing the person's coping resources, such negative emotions determine a stressful state (Rusch et al., Reference Rusch, Heekeren, Theodoridou, Dvorsky, Muller, Paust and Rossler2013) that in circle amplifies any negative reaction such as shame (Rusch et al., Reference Rusch, Corrigan, Heekeren, Theodoridou, Dvorsky, Metzler and Rossler2014a), self-labeling as mentally ill (Rusch et al., Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b), and fear (Larsen et al., Reference Larsen, Herrera, Bilgrami, Shaik, Crump, Sarac and Corcoran2019), as well as overall distress (Baer et al., Reference Baer, Shah and Lepage2019; Pyle et al., Reference Pyle, Stewart, French, Byrne, Patterson, Gumley and Morrison2015). Worryingly, convergent evidence suggests that PR individuals reporting stigmatizing experiences are more likely to have a poor outcome (Rusch et al., Reference Rusch, Corrigan, Heekeren, Theodoridou, Dvorsky, Metzler and Rossler2014a, Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b), suicidality (Pyle et al., Reference Pyle, Stewart, French, Byrne, Patterson, Gumley and Morrison2015; Xu et al., Reference Xu, Mayer, Muller, Heekeren, Theodoridou, Dvorsky and Rusch2016a, Reference Xu, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rusch2016c), develop full-psychosis (Rüsch et al., Reference Rüsch, Heekeren, Theodoridou, Müller, Corrigan, Mayer and Rössler2015; Stowkowy et al., Reference Stowkowy, Liu, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2016), disengage from services (Ben-David et al., Reference Ben-David, Cole, Brucato, Girgis and Munson2018; Ben-David et al., Reference Ben-David, Cole, Brucato, Girgis and Munson2019; Kotlicka-Antczak et al., Reference Kotlicka-Antczak, Pawelczyk, Podgorski, Zurner, Karbownik and Pawelczyk2018; Rusch et al., Reference Rusch, Heekeren, Theodoridou, Dvorsky, Muller, Paust and Rossler2013, Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b; Xu et al., Reference Xu, Muller, Heekeren, Theodoridou, Dvorsky, Metzler and Rusch2016b), and have family members distressed by associative stigma (Baron et al., Reference Baron, Salvador and Loewy2019; He et al., Reference He, Eldeeb, Cardemil and Yang2019). Moreover, people at PR may suffer more than their healthy peers because of their age, ethnicity, religion, disability, sexual orientation, and habits (Anglin et al., Reference Anglin, Greenspoon, Lighty and Ellman2016; Anglin et al., Reference Anglin, Lui, Espinosa, Tikhonov and Ellman2018; Saleem et al., Reference Saleem, Stowkowy, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2014; Shaikh et al., Reference Shaikh, Ellett, Dutt, Day, Laing, Kroll and Valmaggia2016; Stowkowy et al., Reference Stowkowy, Liu, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2016; Ward et al., Reference Ward, Lawson, Addington, Bearden, Cadenhead, Cannon and Perkins2018). Thus, clinicians must remain cognizant of such risks, reconciling the interests and feelings of the young individual at PR with those of their parents in the interest of the family as well as facilitating any attempt to break down public stigma in the community.
Good and harm of labeling psychosis-risk states
While evidence converges on the occurrence of both public and internalized stigma with reference to the PR state, less clear is the role of the labeling process in evoking stigmatizing responses. Studies reviewed here suggest two major determinants of stigma in the context of labeling. First, labeling the PR state may not be harmful as much as the PR individual’ behavior and associated disability. Labeling-related stigma would derive from symptom-related stigma, i.e. symptoms and anomalous experiences perceived by PR individuals. Further, with reference to labeling-related stigma, self-labeling would have a greater negative impact than other-labeling, i.e. the external label of PR given by the treating service. In fact, other-labeling per se may even confer considerable benefit to young people at risk, as it offers an explanatory framework for curable symptoms, a quantification of risk for psychosis, and potential strategies for minimizing such risk (Yang et al., Reference Yang, Link, Ben-David, Gill, Girgis, Brucato and Corcoran2015). Second, the PR label could be interpreted differently worldwide, as already shown for full-blown disorders such as schizophrenia (Jorm & Griffiths, Reference Jorm and Griffiths2008). It is therefore possible that the association of a PR label with stigmatizing reactions could vary from society to society and across time depending on its interpretation. Evidence reviewed here suggests that the effect of socio-demographic and other individual characteristics on stigma scores is even higher for the PR state compared to other major psychiatric disorders such as schizophrenia or depression (Lee et al., Reference Lee, Hui, Ching, Lin, Chang, Chan and Chen2016).
In clinical settings, psychiatric diagnoses serve to guide a plan of care and are therefore viewed as useful. However, receiving a formal diagnosis of a mental health disorder can have considerable impact, implying that how diagnoses are decided, communicated, and used by services is important (Perkins et al., Reference Perkins, Ridler, Browes, Peryer, Notley and Hackmann2018). Evidence reviewed here suggests some potential similarities between the stigma elicited by major mental health disorder labels and that elicited by the PR label. In order to avoid emotional risks of stigma associated with the PR label, especially when working with young people, diagnostic or prognostic information should be tailored to each individual's characteristics, including age, social context, identity formation, cognitive capacity, and comorbidities (Corcoran, Reference Corcoran2016; Mittal, Dean, Mittal, & Saks, Reference Mittal, Dean, Mittal and Saks2015). In a complementary way, addressing the potential stigma of a PR label at the public health level, even simply providing accurate information about the PR state, may significantly cut down negative reactions and misconceptions about mental illness (Yang et al., Reference Yang, Anglin, Wonpat-Borja, Opler, Greenspoon and Corcoran2013). Finally, hope-oriented labels distancing the PR state from a mere prodromal phase of inevitable psychosis should be preferred (Lee et al., Reference Lee, Ching, Hui, Lin, Chang, Chan and Chen2017; Moritz et al., Reference Moritz, Gawęda, Heinz and Gallinat2019).
Advancing the understanding of stigma mechanisms in the PR state
Two lines of research were particularly informative, focusing on whether stigma differed (i) between baseline and follow-up assessments and (ii) across different mental health conditions, including the PR state, between potential stakeholders other than patients (family members, mental health professionals, and general public).
Eight studies conducted follow-up assessments ranging from 6 months to 2 years (Morrison et al., Reference Morrison, Birchwood, Pyle, Flach, Stewart, Byrne and French2013; Pyle et al., Reference Pyle, Stewart, French, Byrne, Patterson, Gumley and Morrison2015; Rusch et al., Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b, Reference Rüsch, Heekeren, Theodoridou, Müller, Corrigan, Mayer and Rössler2015; Stowkowy et al., Reference Stowkowy, Liu, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2016; Ward et al., Reference Ward, Lawson, Addington, Bearden, Cadenhead, Cannon and Perkins2018; Xu et al., Reference Xu, Mayer, Muller, Heekeren, Theodoridou, Dvorsky and Rusch2016a, Reference Xu, Muller, Heekeren, Theodoridou, Dvorsky, Metzler and Rusch2016b). Evidence indicates that stigma reduces overtime and may benefit from cognitive therapies (Morrison et al., Reference Morrison, Birchwood, Pyle, Flach, Stewart, Byrne and French2013) while its persistence or increase overtime is decisive to induce stressful reactions and affect wellbeing (Rusch et al., Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b) as well as increase suicidality (Xu et al., Reference Xu, Mayer, Muller, Heekeren, Theodoridou, Dvorsky and Rusch2016a) and poor help-seeking attitudes (Xu et al., Reference Xu, Muller, Heekeren, Theodoridou, Dvorsky, Metzler and Rusch2016b). Instead, it is less clear whether high baseline levels of stigma when receiving a PR diagnosis are sufficient per se to predict a poorer outcome. While this effect seems to be negligible in two studies (Pyle et al., Reference Pyle, Stewart, French, Byrne, Patterson, Gumley and Morrison2015; Rusch et al., Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b), higher stigma at baseline predicted an increased likelihood to develop psychosis at follow-up in two other studies (Rüsch et al., Reference Rüsch, Heekeren, Theodoridou, Müller, Corrigan, Mayer and Rössler2015; Stowkowy et al., Reference Stowkowy, Liu, Cadenhead, Cannon, Cornblatt, McGlashan and Addington2016). Future studies need to clarify this issue.
Four studies included at least one more group of stakeholders, particularly health carers and members of the public, when evaluating stigma elicited by the PR state compared to other labels (Baba et al., Reference Baba, Nemoto, Tsujino, Yamaguchi, Katagiri and Mizuno2017; Kim et al., Reference Kim, Polari, Melville, Moller, Kim, Amminger and Nelson2017; Lee et al., Reference Lee, Hui, Ching, Lin, Chang, Chan and Chen2016, Reference Lee, Ching, Hui, Lin, Chang, Chan and Chen2017). Stigma endorsed by the public is lower than that of health carers for PLE, but higher for depression, schizophrenia, and PR itself (Baba et al., Reference Baba, Nemoto, Tsujino, Yamaguchi, Katagiri and Mizuno2017; Lee et al., Reference Lee, Hui, Ching, Lin, Chang, Chan and Chen2016). However, patients, who seem to stigmatize the PR condition the least compared to the general public and health carers (Kim et al., Reference Kim, Polari, Melville, Moller, Kim, Amminger and Nelson2017), surprisingly are those stigmatizing the PLE label the most (Baba et al., Reference Baba, Nemoto, Tsujino, Yamaguchi, Katagiri and Mizuno2017). Anyway, both members of the public and health carers would prefer people at PR to receive a neutral diagnostic label (e.g. developing period). Conversely, terms overemphasizing on the dangerousness of the condition (e.g. high-risk period), or implying that transition to psychosis is inevitable (e.g. early sign period), are perceived as more judgmental and reason for concern, with no significant differences between health carers and members of the public (Lee et al., Reference Lee, Ching, Hui, Lin, Chang, Chan and Chen2017).
Methodological limitations
The studies reviewed here widely differ in terms of design, methodological quality, and contexts. It is worth reporting that 16% of studies are purely qualitative. Moreover, the strategy of using the umbrella term PR, while offering advantages in terms of summary of results, may at the same time limit the generalizability of the present results to the heterogeneous population of people presenting with subsyndromal or prodromal symptoms of psychosis. In fact, populations under investigation differ considerably across studies in terms of labels as well diagnostic criteria used (see methodological quality of studies in Table 2), thus limiting the comparison of the findings across the domains investigated. These aspects are partially mitigated in studies that compare the PR label with other psychotic (e.g. schizophrenia), non-psychotic (e.g. depression), non-psychiatric (e.g. weird), and different PR (e.g. UHR v. ARMS) labels as well as a label describing an acute and potentially transitory state (e.g. PLE), as the stigma phenomenon is investigated across different mental health conditions. Also, a substantial proportion of studies (42%) did not report on PR individuals' other psychiatric comorbidity (e.g. anxiety, depression) or substance use (e.g. alcohol, cannabis). Even when they did, such information was not always added to the analyses as a potential confounding factor. Thus, based on the available information, it is not possible to disentangle the stigma potentially arising from labels for other psychiatric comorbidity or substance use from the stigma purely attributable to the PR label. Further, even though two studies reviewed here indicate that stigma may benefit from cognitive therapies (Baer et al., Reference Baer, Shah and Lepage2019; Morrison et al., Reference Morrison, Birchwood, Pyle, Flach, Stewart, Byrne and French2013), suggesting the importance of including such interventions in early intervention services for psychosis, it was not possible to draw information from studies on their PR service configuration. This is likely to be heterogeneous, with potential implications for levels of stigma among PR individuals.
Independent of these limitations, differences in sample size across studies (range: 1–1044 subjects) should also be taken into account. However, even for labeling-related stigma, the domain showing the highest inconsistent evidence, studies showing positive (M = 140.3 ± 164.2; range: 6–455) and negative effects of labeling (M = 162 ± 115.2; range: 49–365) grossly overlap in their samples size. Instead, evidence seems to suggest that the labeling process is a multi-faceted one, thus limiting clear-cut conclusions from results obtained with different measures.
Moreover, the large majority of the studies reviewed here (79%) report a static representation of stigma in PR individuals. However, very limited evidence suggests that stigma is a dynamic process which tends to reduce overtime, also independent of any intervention (Morrison et al., Reference Morrison, Birchwood, Pyle, Flach, Stewart, Byrne and French2013), and whose changes overtime are crucial for PR individuals' wellbeing (Rusch et al., Reference Rusch, Muller, Heekeren, Theodoridou, Metzler, Dvorsky and Rossler2014b). Thus, this limits the possibility of disentangling whether the high levels of stigma reported by most studies have followed a recent diagnosis of the PR state or are the consequence of a more consolidated process. Likewise, it is not clear whether stigma would persist after an adequate period from receiving the PR diagnosis. Finally, all studies reviewed here converge on the occurrence of experiences of self-labeling or internalized stigma in PR individuals. However, an important factor for internalized stigma is the degree of the person's identification with the larger group of individuals with mental illness (Corrigan & Watson, Reference Corrigan and Watson2002), raising the issue of what is driving the high rates of internalized stigma in individuals who have not developed the full disorder yet, and mostly will never develop. For instance, do PR individuals experience internalized stigma because of their fear to develop psychosis or they consider themselves affected already? Future studies need to address this issue.
Future directions and conclusions
Available evidence suggests that the PR state elicits stigmatizing responses among the general public as well as patients themselves. Moreover, labeling-related stigma seems to be inconsistent across studies, thus future studies need to better elucidate the mechanisms leading to the manifestation of positive or negative responses when receiving a PR label. Further, stigma has an overall negative impact on PR individuals' wellbeing and engagement with services, including increasing the risk of transition to psychosis, and some socio-demographic factors including age and ethnicity may exacerbate the detrimental effects of stigma. Very limited evidence awaiting replication supports the efficacy of cognitive therapies in mitigating the negative effects of stigma among PR individuals. This is of crucial relevance and future clinical research studies need to evaluate this aspect more deeply. Despite data is too limited to draw any solid conclusions, evidence presented here has important public health implications, as it indicates that stigma should be treated in the same way as any other risk factor for psychosis.
Conflict of interest
The authors declare that they have no conflict of interest.
Financial support
The authors have no financial support to report.
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