Longitudinal course of self-labeling, stigma stress and well-being among young people at risk of psychosis
Introduction
Early intervention programmes for schizophrenia and bipolar disorder have become more common worldwide with the promise of considerable clinical benefits for young people at risk of these disorders (Fusar-Poli et al., 2013). However, symptoms of the emerging illness as well as early intervention itself may lead to labeling or self-labeling as ‘mentally ill’. The resulting (self-)stigma could harm the well-being of young people at risk irrespective of clinical symptoms (Yang et al., 2010), but longitudinal quantitative data on the impact of self-labeling and stigma variables on their well-being are lacking.
In a previous cross-sectional analysis of the current sample at baseline (Rüsch et al., 2014b), we found associations of perceived stigma, shame and self-labeling with increased stigma-related stress; and of more stigma stress with reduced well-being. Therefore the aims of the current study were twofold: first, to confirm these cross-sectional findings in longitudinal analyses; and second, to use a stress-coping model of mental illness stigma (Rüsch et al., 2009a, Rüsch et al., 2009b) to identify relevant stigma mechanisms as targets for future interventions. This model is based on Lazarus' and Folkman's (1984) work on stress appraisal processes and on identity threat models of stigma (Major and O'Brien, 2005); stigma stress occurs if persons with mental illness feel that stigma-related harm exceeds their perceived resources to cope with stigma. We assessed (i) self-labeling, shame and perceived stigma as predictors of stigma stress after one year; and (ii) stigma stress as predictor of well-being after one year. Regarding these predictor variables, we examined their baseline scores as well as their change scores, from baseline to one-year follow-up, as predictors of stigma or well-being after one year, respectively.
Section snippets
Participants
Participants were recruited in the region of Zürich, Switzerland, for a longitudinal observational study among young people at risk of psychosis (Rüsch et al., 2013, Rüsch et al., 2014b). The current analyses are based on the baseline and 1-year follow-up data of this project (for details of baseline data, recruitment, in- and exclusion criteria, and sample characteristics see Rüsch et al., 2014b). All participants provided written informed consent, in case of minors including the parents'
Comparing participants at follow-up with dropouts
The 95 individuals who did not participate in the 1-year follow-up assessment did not differ significantly from the 77 participants who completed it in terms of baseline sociodemographic or clinical variables, except for completers being younger (M = 20.3 years; SD = 5.5) than dropouts (M = 22.1; SD = 5.8; t = 2.06; df = 170; p = .04) and fulfilling at baseline more often high risk criteria than dropouts (90% versus 75%, chi-square = 6.2, p = .01). At a trend level, dropouts perceived more discrimination (M = 3.7,
Discussion
Our results partly confirm cross-sectional patterns in the same sample (Rüsch et al., 2014b) and suggest that changes of self-labeling and stigma stress over time may influence the well-being of young people at risk of psychosis independent of baseline levels. If corroborated by future studies, self-labeling and stigma stress should be taken into account in early intervention programmes. The role of these variables for well-being is consistent with modified labeling theory (Link et al., 1989)
Funding
This study was supported by the Zürich Impulse Program for the Sustainable Development of Mental Health Services (www.zinep.ch).
Contributors
WR, KH, AT, SW and NR designed the study. NR and MM analyzed and interpreted the data with input from PWC. DD and SM were involved in data acquisition and management. NR wrote the first draft of the manuscript. All authors contributed to and have approved the final manuscript.
Conflict of interest
All authors declare that they have no conflicts of interest.
Acknowledgements
We are grateful to all participants.
References (31)
- et al.
The HCL-32: Towards a self-assessment tool for hypomanic symptoms in outpatients
J. Affect. Disord.
(2005) - et al.
Between self-clarity and recovery in schizophrenia: reducing the self-stigma and finding meaning
Compr. Psychiatry
(2014) - et al.
A stress-coping model of mental illness stigma: II. Emotional stress responses, coping behavior and outcome
Schizophr. Res.
(2009) - et al.
A stress-coping model of mental illness stigma: I. Predictors of cognitive stress appraisal
Schizophr. Res.
(2009) - et al.
Attitudes towards help-seeking and stigma among young people at risk for psychosis
Psychiatry Res.
(2013) - et al.
Potential stigma associated with inclusion of the psychosis risk syndrome in the DSM-V: An empirical question
Schizophr. Res.
(2010) - et al.
Internalized stigma as a barrier to improvement in vocational functioning among people with schizophrenia-spectrum disorders
Psychiatry Res.
(2010) - et al.
Change in internalized stigma and social functioning among persons diagnosed with severe mental illness
Psychiatry Res.
(2012) - et al.
Challenging the public stigma of mental illness: A meta-analysis of outcome studies
Psychiatr. Serv.
(2012) - et al.
The psychosis high-risk state: A comprehensive state of the art review
JAMA Psychiatry
(2013)
Attenuated psychosis syndrome: Ready for DSM-5.1?
Annu. Rev. Clin. Psychol.
The positive and negative syndrome scale (PANSS) for schizophrenia
Schizophr. Bull.
Stress, appraisal, and coping
Understanding labeling effects in the area of mental disorders: An assessment of the effects of expectations of rejection
Am. Sociol. Rev.
A modified labeling theory approach in the area of mental disorders: An empirical assessment
Am. Sociol. Rev.
Cited by (37)
Emotional and stigma-related experiences relative to being told one is at risk for psychosis
2021, Schizophrenia ResearchImpact of “psychosis risk” identification: Examining predictors of how youth view themselves
2019, Schizophrenia ResearchCitation Excerpt :We focused upon what CHR youth thought about themselves because this has shown robust associations with stigma, distress, negative psychological outcomes, and mental health service use in other adolescent studies (Moses, 2009a; Moses, 2009b). Yet future studies should elucidate the relative impact of PR labeling on stigma, especially since stigma in UHR youth has been linked with harmful psychological effects (Rüsch et al., 2014a; Rüsch et al., 2014b; Rüsch et al., 2015). Longitudinal investigations of sense of self in relation to internalized stigma and other outcomes are particularly needed.
Are current labeling terms suitable for people who are at risk of psychosis?
2017, Schizophrenia ResearchStigma and suicidal ideation among young people at risk of psychosis after one year
2016, Psychiatry ResearchCitation Excerpt :Stigma stress was assessed by the 8-item Stigma Stress Scale (Rüsch et al., 2009a, 2009b) which includes two 4-item subscales, one on primary appraisal of anticipated harmful consequences of stigma (e.g. “Prejudice against people with mental illness will have harmful or bad consequences for me”; Cronbach’s alphas baseline/follow-up: 0.92/0.93) and the other on secondary appraisal of perceived resources to cope with these consequences (e.g. “I have the resources I need to handle problems posed by prejudice against people with mental illness”; Cronbach’s alphas baseline/follow-up: 0.77/0.89). As in previous studies (Farrelly et al., 2015; Rüsch et al., 2009a, 2009b, 2014b), a single stress score was computed by subtracting perceived coping resources from perceived stigma-related harm, with higher difference scores from −6 to +6 indicating more stigma stress (baseline/follow-up: M=−1.5, SD=2.2/M=−1.7, SD=2.5). Suicidal ideation was rated by one item of the Hamilton Rating Scale for Depression (HRSD; Hamilton, 1960; 0=absent, 1=feels life is not worth living, 2=wishes he or she were dead or any thoughts of possible death to self, 3=suicidal ideas/gesture, or 4=attempts at suicide).
Pathways between stigma and suicidal ideation among people at risk of psychosis
2016, Schizophrenia ResearchCitation Excerpt :Second, the interpersonal theory of suicide proposes that low belongingness or social alienation as well as a sense of burdensomeness or low self-worth contribute to suicidality (van Orden et al., 2010). These are consistent with the negative effects of stigma among young people at risk, which include social isolation and low self-esteem (Rüsch et al., 2014b, 2014c). Therefore, stigma may contribute to suicidality among young people at risk because consequences of stigma are also predictors of suicidality.