Longitudinal course of self-labeling, stigma stress and well-being among young people at risk of psychosis

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Abstract

Stigma may undermine the well-being of young people at risk of psychosis. We therefore measured self-labeling, stigma variables and well-being at baseline and again one year later among 77 at-risk participants. An increase in self-labeling during this period predicted heightened stigma stress after one year and a decrease in stigma stress predicted better well-being at follow-up, controlling for symptoms, psychiatric comorbidity and sociodemographic variables. Besides early intervention programmes, strategies are needed to reduce the public stigma associated with at-risk status and to support young people at risk to better cope with self-labeling and stigma stress.

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.

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