We have provided a focal conceptual integration of the stigma literature in an attempt to learn how potential stigma of a psychosis risk syndrome might affect individuals, and how this syndrome’s particular characteristics may shape any possible manifestation of stigma. We highlight key forms of ‘internalized stigma’, emotional reactions, and harmful coping mechanisms as a consequence of labeling processes that interfere with adolescent identity formation and forms of ‘structural’ and familial discrimination that may potentially occur as a result of an individual’s ‘at-risk’ status. Accurate conceptualization of these core domains is a prerequisite for valid measurement of any possible stigma that a psychosis risk syndrome might confer.
Psychometric scales have been developed to assess these stigma constructs and might be effectively adapted for use with individuals identified as ‘at-risk’ for psychosis. To assess awareness of societal stereotypes, Link et al (1989)
developed a “Perceived Devaluation-Discrimination” Scale to assess a respondent’s perception of what most other people believe in terms of how people who had been treated for a serious mental illness may be devalued or discriminated against. To assess internalized stigma, Corrigan et al (2006)
have designed a measure assessing similar processes of ‘stereotype awareness’ (e.g., “Most people in the community think that people with mental illness act unpredictably”) which then further extend to the components of ‘stereotype agreement’ (e.g., “I agree that people with mental illness act unpredictably”) and finally, ‘stereotype self-concurrence’ (e.g., “Because I have a mental illness, I act unpredictably”). For labeled individuals, measures to assess stigma-related feelings--such as feeling misunderstood, different, and ashamed—and behavioral coping orientations-- including negative coping strategies such as secrecy and withdrawal, and positive coping responses such as educating and challenging others-- have also been developed (Link et al, 2002
). Lastly, examples of items assessing experienced discrimination in familial and structural domains (i.e., education, housing opportunities and health insurance coverage) have been developed in Wahl’s (1989) comprehensive measure of consumers’ experience of stigma. In addition to directly tapping the stigma constructs of interest, these instruments all have established good reliability and validity (see Link et al., 2004
; Yang, Link, & Phelan, 2008
Finally, our ability to assess the ultimate impact of a psychosis risk syndrome is complicated by its current limited use in specialized clinical research programs that go to great lengths to reliably diagnose individuals and to protect them from stigma. For example, McGorry (2001)
deliberately provided their treatment center a generic name (“Personal Assessment and Crisis Evaluation”) and located it in a non-psychiatric setting (a youth health service) precisely to minimize labeling effects. Further, information was specifically conveyed to decatastrophize psychotic disorders. Although stigma was not formally assessed, McGorry et al (2002)
reported no effects of stigmatization via routine clinician inquiry of a preventive intervention consisting of risperidone and cognitive-behavioral therapy for individuals identified as ‘at-risk’ for psychosis. These carefully crafted conditions for curtailing stigma among individuals identified as at a ‘high-risk’ for psychosis may differ considerably from future common use by community clinicians in the event that this psychosis risk syndrome is included in DSM-V. This risk is further magnified among the ‘false positives’ who may not convert to a future psychotic disorder (Corcoran et al., 2005
). Assessing any potential stigma among these academic treatment cohorts, although a critical first step, may lead us to underestimate the degree of stigmatization that might occur in ‘naturalistic’ community studies. Field trials prior to DSM-V should account for this possibility by adopting systematic measures of stigma that we have identified above—i.e., internalized stigma, negative emotional reactions, harmful behavioral coping strategies, and structural discrimination-- to accurately assess any potential harmful effects that this psychosis risk syndrome might confer among community samples.
Our focal application of the extensive stigma literature to a psychosis risk syndrome supports arguments that early identification and treatment of incipient psychotic symptoms promise to reduce overall stigma among those who will exhibit further symptoms and may well develop future psychosis. However, our aim as clinicians and researchers should not be confined to forestalling the development of psychotic symptoms but to also understand and intervene with any possible inadvertent stigmatizing effects brought on by labeling, regardless of whether or not individuals ‘convert’ to subsequent psychosis. Comprehensive theoretical, and measurement, tools certainly exist to address this issue. We have provided a starting point for conceptualization and assessment which we hope will form a foundation for further empirical work regarding this critically important ‘at-risk’ designation.