Reducing Stigma Among Youth at Risk for Psychosis: A Call to Action

Joseph S. DeLuca; Lawrence H. Yang; Alicia A. Lucksted; Philip T. Yanos; Jordan DeVylder; Deidre M. Anglin; Yulia Landa; Cheryl M. Corcoran

Disclosures

Schizophr Bull. 2021;47(6):1512-1514. 

Stigma and discrimination toward people with serious mental health conditions continues to be a pressing social problem in the United States and globally.[1] Youth at clinical high risk for psychosis (CHR-P) experience subthreshold but impactful psychotic experiences,[2] and experience more internalized stigma and perceive more discrimination than adolescent outpatients with other severe mental health conditions.[3] Although CHR-P labeling can lead to positive effects (validation, relief, connection to specialized services), both CHR-P labeling and symptom experiences may also catalyze stigmatization (by peers, family, school and job associates, health providers, one's self), which can contribute to distress, fear, suicidality, withdrawal, poor engagement with services, and even conversion to psychosis.[3] Studies to date suggest that standard psychosocial treatments do not fully mitigate the negative effects of stigma for youth at CHR-P.[4]

Here we wish to draw attention to the clinical need for CHR-P stigma-related interventions that are rooted in adolescent and young-adult developmental science. Furthermore, given that youth at CHR-P are diverse and often report discrimination related to other stigmatized identities,[5,6] we contend that such initiatives also must be informed by an intersectional social identities' framework.[7]

Worldwide efforts are ongoing to prevent or delay the onset of psychosis among youth at CHR-P. Approximately 22%–38% of youth at CHR-P develop a psychotic disorder, with high comorbidity of depressive and anxiety disorders.[8] Given these diverse clinical presentations and trajectories, CHR-P programs employ transdiagnostic and needs-based care. An empirically driven, adjunctive focus within these programs on reducing the harmful effects of stigma experiences is urgently needed.[9]

There are several unique considerations in working to address that need. First, an adolescence and young adulthood developmental lens is needed to understand the dynamics among stigma experiences and concerns and the youth's family, peers, and emerging self-concept and functional development. Future research must inquire into these domains and consider, eg, potential identity disruptions;[10] the inclusion of peer support, broader family support, and related stigma reduction strategies within this work;[11,12] and the integration of this work into schools and around issues such as bullying.[13] This lens must be combined with centering young people's experiences and meaning-making in this inquiry. Related, recent research has found that stigma experiences differ cross-culturally and can be quite nuanced for youth and families, eg, with Latinx youth at CHR-P anticipating more rejection and expressing more secrecy, but also engaging in more empowerment-related coping.[14]

Second, it is imperative for the field to more deeply understand the multifaceted impacts of CHR-P and other mental health experiences for these youth. Yang et al[15] have found that most youth at CHR-P identify nonpsychotic disorders (depression, anxiety) as having the "greatest subjective impact" on their sense of self (vs CHR-P labels). Additionally, it was found that the "psychosis risk" label had more impact on youth at CHR-P who thought they were at risk for psychosis or had been told they were at risk.[15] Thus, Yang, Corcoran, and colleagues' work[9,15] highlights important considerations in CHR-P stigma research. More studies are needed to disentangle stigma related to various psychiatric labels and symptoms, including whether internalized CHR-P stigma is related to fear of developing psychosis and/or current symptoms, as well as the myriad social experiences related to these labels, symptoms, and mental health treatment.[3] These aspects must also be considered when developing key components of stigma-resilience and other CHR-P interventions.

Third, as noted, youth at CHR-P often report experiencing more discrimination related to nonpsychiatric identities than nonpsychiatric controls, such as about their appearance, ability status, religion, and sexual orientation.[6] Notably, perceived discrimination was not associated with CHR-P symptoms in this study, but it was associated with negative schemas about self and others. Other formative research, examining racial discrimination and social determinants of health, similarly highlights that youth at CHR-P often contend with the management of multiple stigmatized identities.[5] How this interacts with mental-illness-related stigmatization, regarding synergistic stress and/or coping, is unknown.

To our knowledge, no intervention study has been conducted to specifically target the personal impacts of stigma experiences among youth at CHR-P. Morrison et al[4] compared individual cognitive therapy plus symptom monitoring (CT+SM) to SM only and found through secondary data analysis that a measure of internalized stigma (negative appraisals of and beliefs about psychiatric experiences) decreased over a 2-year period for both groups. It is possible that engagement in supportive services contributed to this reduction, as well as potential regression to the mean. Overall, although an impressive study in terms of sample size (N = 288) and long-term follow-up, this work was limited by its measurement of stigma that referred to "my experiences" rather than any particular labels or symptoms, as well as an unclear mechanism of change.

Future studies employing a range of stigma measures and mechanisms[9,15] and considering intervention components from adult stigma interventions may be helpful next directions to characterize and address this stigma. Core components of adult internalized stigma interventions typically include psychoeducation, cognitive strategies, and a focus on narration and meaning-making.[16] Qualitative and participatory research may help to shed more light on the stigma process among youth at CHR-P and their families,[17] as well as intervention preferences. Lastly, stigma at its root is a social problem and there should be continued work to eradicate stigma on a community level,[18] including multilevel approaches targeting media portrayals, policies and legislation, and schools.[19] Continued work is also needed to reduce stigma and improve CHR knowledge among providers, especially school-based and other youth mental health providers.[20] Overall, given the key importance of the CHR-P period and evidence that internalized stigma is a pressing and impactful issue at this stage, we urge researchers to continue developing interventions addressing the effects of stigma in this crucial group.

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