Self-stigma and its relationship with insight, demoralization, and clinical outcome among people with schizophrenia spectrum disorders

Abstract

Background

Paradoxically, insight is associated with positive outcomes, such as better treatment adherence and recovery, and negative outcomes, such as depression, hopelessness, low self-esteem, and quality of life. Self-stigma as a moderating variable can be decisive whether more insight leads to better or worse outcome. On the other hand, self-stigma can act as a mediator between insight and outcomes. We therefore examined self-stigma both as a moderator and a mediator.

Methods

Insight, self-stigma, demoralization, symptoms, and functioning were assessed among 145 outpatients with schizophrenia spectrum disorders using questionnaires and structured interviews. Structural equation modeling was used to analyze the cross-sectional data.

Results

Results confirmed self-stigma as a moderator: The association of insight and demoralization was stronger as self-stigma increased. Self-stigma also partially mediated the positive relationship between insight and demoralization. Moreover, demoralization fully mediated the adverse associations of self-stigma with psychotic symptoms and global functioning.

Discussion

Given the decisive role of self-stigma regarding the detrimental consequences of insight, interventions should address self-stigma, particularly if psychoeducational or other interventions have increased insight. Therapeutic implications for changes of dysfunctional beliefs related to illness and self and change of self-concept in the context of recovery at the level of narrative identity are discussed.

Introduction

Insight in schizophrenia is a multidimensional construct. It is defined as the awareness of having a mental disorder, of specific symptoms, and their attribution to the disorder, the awareness of social consequences and of need for treatment [1]. For schizophrenia, rates of lacking insight, at least partially, have been reported to lie between 30% and 80% [1], [2]. Low levels of insight are a risk factor for nonadherence to treatment, which is associated with poor clinical outcome, such as frequent relapses and rehospitalizations, high levels of positive and negative symptoms, and poor social and vocational functioning [2]. On the other hand, high levels of insight have been linked to depression, hopelessness, and suicidal tendency as well as to lowered self-esteem and quality of life [3], [4], [5]: a cluster of negative consequences that may well be subsumed under the concept of demoralization. Demoralization means a syndrome of existential distress that can occur in individuals who have a chronic mental illness that threatens integrity of being or of people's meaning of who they are as engaged subjects in the world [6]. It results from the persistent failure to cope with the illness and its intra- and interpersonal consequences and is characterized by feelings of helplessness, incompetence, diminished self-esteem, hopelessness, entrapment, aloneness, and meaninglessness, possibly followed by the wish to die [7]. Eventually, demoralization can constitute a major obstacle in recovery [8].

Examining the psychological processes underlying the contradictory findings regarding insight (referred to as the “insight paradox” [9]), insight was found to be related to negative outcome only when it is accompanied by self-stigmatizing beliefs [9], [10]. Self-stigma implies that people with mental illness are not only aware of negative public stereotypes (eg individuals with schizophrenia are dangerous, unpredictable, incompetent, and responsible for their condition; schizophrenia is difficult to treat with a poor prognosis [11]). Rather, they also agree with and internalize them (ie, they identify themselves with the stigmatized group and regard the stigma as legitimized), leading to negative emotional reactions, typically, lowered self-esteem and self-efficacy [12]. Eventually, people lose their motivation to pursue behaviors related to life goals (eg, meaningful work, independent housing, and other personal aspirations) and may avoid accessing and using professional treatment that helps achieve these goals [13]. Using a cluster analytical approach, Lysaker et al [9] found that the group with high insight and moderate stigma (n = 27) had significantly the lowest levels of hope and self-esteem compared with the group with high insight and minimal stigma (n = 25) and the group with low insight and mild stigma (n = 23). In addition, the high-insight/minimal-stigma group had significantly less impaired social function than the 2 other groups. Recently, Staring et al [10] overcame some methodical deficits of the study by Lysaker et al [9] by testing the same hypothesis but using a structural equation modeling (SEM) approach, a larger sample (114 instead of 75 participants with schizophrenia spectrum disorders), a better instrument to assess insight (the Insight Scale [IS] [14] instead of a single item of the Positive And Negative Syndrome Scale [PANSS] [15]), and further outcome variables (eg, service engagement and medication compliance). They found that the detrimental associations of insight with depression, quality of life, and self-esteem were more pronounced in the patients with high stigma than in those with low stigma. Notably, in both studies, self-stigma was treated as a variable that moderates the associations of insight and outcome, for example, the risk of experiencing negative outcome in consequence of insight is a function of the stigmatizing beliefs.

In a recent article, we demonstrated that the detrimental association of insight and demoralization is mediated by the participants' perception of their mental illness as being chronic, disabling, and out of control [16]. Because typical negative stereotypes of schizophrenia include pessimistic assumptions about the illness course, functioning, and curability [11], these findings may be interpreted as reflecting internalized stigma among participants with high levels of demoralization. Similarly, Hasson-Ohayon et al [17] have recently found that self-stigma among parents of persons with severe mental illness (SMI) mediates rather than moderates the relationship between insight into a daughter's or son's mental illness and family burden due to their child's illness. Thus, self-stigmatizing beliefs could also be regarded as a variable that mediates the association between insight and negative outcome.

Because current evidence suggests self-stigma can be both a moderator variable and a mediator variable in the context of the relationship between insight and demoralization, the present study explores both types of relationships. The first aim was to investigate self-stigma as a moderator of the association between insight and demoralization. We expected the association of insight and demoralization to be more pronounced in patients with higher self-stigma than in those with lower self-stigma. We investigated the same hypothesis as Staring et al [10] but with some methodical improvements. First, we used a measure of self-stigma instead of a measure of perceived stigma [18] (the Perceived Devaluation and Discrimination Scale [19]) to test the hypothesis more directly. Second, applying SEM, we used product terms representing interactions among latent variables instead of a multiple-group approach, which requires the dichotomization of continuous measures (Staring et al [10] defined a score of ≥2.70 on the Perceived Devaluation and Discrimination Scale as an indicator for high stigma), resulting in a loss of information. Third, we additionally included psychotic symptoms and functioning as variables to control for [20], [21]. Moderation analyses attempt to identify individual differences or contextual variables that strengthen and/or change the direction of the relationship between insight and outcome [22]. Thus, the evidence of self-stigma as a moderator of the associations between insight and outcomes would contribute to the resolution of the insight paradox [17]. The second aim was to investigate whether self-stigma also mediates the association between insight and demoralization, for example, higher levels of insight are associated with higher levels of demoralization because they are accompanied by self-stigmatizing beliefs. Because recent research revealed associations between psychotic symptoms and social functions with self-stigma [23], [24], we assumed self-stigma to mediate also the associations of psychotic symptoms and role functioning with demoralization. Mediation analyses attempt to identify the intermediary process that leads from insight to poor outcome [22]. Thus, the evidence of self-stigma as a mediator of the associations between insight and adverse outcomes would enable us to promote insight to improve treatment adherence and clinical outcome without triggering demoralization as an “accidental side effect.”