Impact of “psychosis risk” identification: Examining predictors of how youth view themselves

Abstract

Background

Identifying young people as at clinical high-risk (CHR) for psychosis affords opportunities for intervention to possibly prevent psychosis onset. Yet such CHR identification could plausibly increase stigma. We do not know whether these youth already perceive themselves to be at psychosis-risk (PR) or how their being told they are at PR might impact how they think about themselves.

Methods

148 CHR youth were asked about labels they had been given by others (labeling by others) or with which they personally identified (self-labeling). They were then asked which had the greatest impact on how they thought about themselves. We evaluated whether being told vs. thinking they were at PR had stronger effects.

Findings

The majority identified nonpsychotic disorders rather than PR labels as having the greatest impact on sense of self (67.6% vs. 27.7%). However, participants who identified themselves as at PR had an 8.8 (95% CI = 2.0-39.1) increase in the odds of the PR label having the greatest impact (p < 0.01). Additionally, having been told by others that they were at PR was associated with a 4.0 increase in odds (95% CI = 1.1-15.0) that the PR label had the most impact (p < 0.05).

Interpretation

Nonpsychotic disorder labels appear to have a greater impact on CHR youth than psychosis-risk labels. However, thinking they are at PR, and, secondarily, being told they are at PR, appears to increase the relative impact of the PR label. Understanding self- and other-labeling may be important to how young people think of themselves, and may inform early intervention strategies.

Introduction

Despite emerging evidence that early treatment of mental illness may positively impact illness course and recovery (Fusar-Poli et al., 2013; McFarlane et al., 2015), stigma can prevent those experiencing early signs of mental illness from accessing treatment, cause psychological distress, and disrupt capacity for full recovery (Yang et al., 2010; Corcoran et al., 2005). A vanguard movement is now identifying youth at clinical high-risk (CHR) for psychosis with the aim of altering the course of illness and potentially preventing the onset of an initial episode of psychosis (Yung et al., 2003; Fusar-Poli et al., 2013). Yet identification of CHR youth, and conveying of psychosis-risk (PR) status, has raised questions about what effects communicating this high-risk status may have upon identified youths' views of themselves. To advance strong preventive measures, public mental health efforts must confront these issues to maximize benefit and minimize harm.

Youth identified as at CHR (henceforth: “CHR youth”) are identified via interview (e.g., for this study, the Structured Interview for Psychosis-Risk Syndromes [SIPS]; Miller et al., 2003) predominantly by the presence of new or worsening attenuated psychotic symptoms (e.g., unusual and unfounded concern about being watched) accompanied by distress or impairment (Woodberry et al., 2016). We use “CHR” to refer to the syndrome itself and youth identified by internationally-recognized risk criteria (via the SIPS). It is thus a technical term. We use “psychosis-risk (PR)” to refer to the broad concept of elevated risk for developing psychosis as it might be conveyed or understood by non-researchers.

CHR programs may alleviate stigma through careful clinical practice. This often includes taking a proactive mental health care perspective centered on an individual's or family's specific experiences, values, and understanding of mental health and illness (Friedman-Yakoobian et al., n.d.). Conveying PR to youth may bring relief and encourage health-promoting behaviors (Yang et al., 2015). Conversely, conveying PR to youth may activate stigma via an additional psychiatric “label” of PR (Yang et al., 2015; Tsuang et al., 2013), thus eliciting distressing negative stereotypes associated with psychosis (Uttinger et al., 2015). Approximately 30-35% of CHR youth may develop threshold psychosis within 2-2½ years of identification, meaning that a majority thus identified could be exposed to potential stigma for a condition that in some cases will never develop (Fusar-Poli et al., 2012).

Understanding stigma related to CHR identification is complicated by high rates of comorbid, pre-existing diagnoses and prior labeling. The majority (~82%) of identified individuals have had treatment (and thus encountered labeling) for nonpsychotic disorders (e.g., depression or anxiety; Woodberry et al., 2016, McFarlane et al., 2015). CHR youth are distressed by affective or cognitive symptoms that may themselves elicit burden or exclusion (Cavelti et al., 2014) and are identified with heterogeneous diagnoses (e.g., depression or anxiety, and/or CHR), any of which could have differential ramifications for the future development of distress, stigma, help-seeking or treatment engagement (Moses, 2009a, Moses, 2009b; Yang et al., 2013). It thus remains unknown to what extent CHR youth identify with pre-existing nonpsychotic conditions, compared with a newly-developing PR status.

Dual processes of being told that one is at PR (labeling by others) and thinking oneself to be at PR (self-labeling) may be associated with increased sense of stigma and poorer psychological well-being (e.g., among youth with nonpsychotic disorders who think of themselves as “mentally ill”; Moses, 2009a, Moses, 2009b). Psychiatric “labeling” by socially-relevant others (Link et al., 1989), including via formal diagnosis by mental health clinicians, may alter youths' views of themselves. Given that PR may be conveyed to youth whose self-views are still developing (Nieman and McGorry, 2015), the impact of being labeled as at PR by others (including mental health professionals, school officials, and relatives; Wisdom and Green, 2004) may have long-lasting effects.

However, youths' identities are not entirely dependent on others telling them they are at PR (see Fig. 1). CHR youth may also be affected by their own “self-labeling”, or what they have come to believe about themselves through experience or their own meaning-making (Thoits, 1985). Self-labeling with PR may begin when an individual observes and classifies his/her symptomatic experiences as indicators that something is seriously wrong, and that they may be experiencing a form of nascent psychosis. This self-labeling might then lead to a heightened awareness and agreement with societal stereotypes of psychosis (Corrigan et al., 2011). Having a family history of psychosis may further facilitate this (Kim et al., 2017). Private ‘self-labeling’ of PR status could thus initiate changes in how CHR youth see themselves. No prior research has examined if, and what, CHR youth label themselves at-risk for. Further, we do not know the relative impact of self-labeling and other-labeling on a youth's sense of self.

Being told that one is at PR may introduce or reinforce self-labeling as being at PR. Self-labeling may thus partially account for some effects of being labeled by others. Alternatively, being told one is at-risk for PR may impact how one thinks about oneself independent of self-labeling processes. Understanding how these processes impact CHR youths self-identification is key because changes in sense of self have been linked with stigma, psychological well-being, and mental health service utilization in youth with nonpsychotic illnesses (Moses, 2009a; Moses, 2009b).

Self-labeling and labeling by others also take place within the context of “individualized feedback” by specialized CHR programs, or when the PR status is communicated by specialized CHR clinicians to identified youth (which also might be considered a specialized form of being “labeled by others”). Yet the content and timing of individualized feedback regarding PR status varies across CHR programs by context, clinician, youth, and family (Friedman-Yakoobian et al., n.d.). Further, there currently is no consensus on a standardized feedback procedure for all participants in CHR programs. Specialized CHR program clinicians are typically trained to give individualized feedback based on a wide range of factors, including the individual and family's concerns and treatment engagement, cultural background, and estimated risk within the CHR classification. For example, PR feedback might be adapted according to relatively low level symptoms or the presence of factors associated with reduced risk (e.g., intact cognition, being of older age, having high social functioning, etc.; Cannon et al., 2016). Better understanding of how self-labeling and labeling by others contribute to how CHR youth see themselves could help guide the process of how PR status is conveyed to youth across specialized CHR programs.

We first provide descriptive data by assessing the extent to which CHR youth self-identified as at PR, vs. other non-psychotic labels. Following, given prior literature showing respective effects of both labeling by others and self-labeling, we hypothesized that being told one is at PR, and thinking one is at PR, would each have independent effects on how CHR youth view themselves.