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Early Intervention in Psychiatry 2015; 9: 133–140
Original Article Internalized stigma, emotional dysfunction and unusual experiences in young people at risk of psychosis Melissa Pyle,1,2 Suzanne L.K. Stewart,2 Paul French,1,2 Rory Byrne,1,2 Paul Patterson,3 Andrew Gumley,4 Max Birchwood5 and Anthony P. Morrison1,2 Abstract Aims: To investigate the relationship between internalized stigma, depression, social anxiety and unusual experiences in young people considered to be at risk of developing psychosis. 1 Psychosis Research Unit, Greater Manchester West NHS Mental Health Foundation Trust, 2School of Psychological Sciences, University of Manchester, Manchester, 3 Birmingham and Solihull Mental Health NHS Trust, 5 School of Psychology, University of Birmingham, Birmingham, and 4Institute of Health and Wellbeing, University of Glasgow, Glasgow, UK
Corresponding author: Mrs Melissa Pyle, Psychosis Research Unit, Greater Manchester West Mental Health NHS Foundation Trust, Harrop House, Manchester M25 3BL, UK. Email: [email protected]
Received 25 April 2013; accepted 22 September 2013
Methods: A total of 288 participants meeting criteria for an at-risk mental state were recruited as part of a multisite randomized controlled trial of cognitive behavioural therapy for people meeting criteria for an at risk mental state (ARMS). The sample was assessed at baseline and 6 months using measures of at risk mental states, internalized stigma, depression and social anxiety.
Conclusions: These findings suggest that internalized stigma may contribute to the development and maintenance of depression in young people at risk of psychosis.
Results: The Personal Beliefs about Experiences Questionnaire was validated for use with an ARMS sample.
Key words: at-risk mental state, depression, internalized stigma, psychosis, social anxiety.
INTRODUCTION Reliable and valid criteria for identifying people who are at risk of developing psychosis have provided an opportunity to investigate preventative strategies.1,2 Yung and colleagues2 have operationally defined criteria for an at-risk mental state: attenuated or subclinical psychotic symptoms that have lasted for at least 1 week; transient psychotic symptoms lasting for a week or less which spontaneously resolve without either medical or psychological intervention; and either a first-degree relative with psychosis or a diagnosis of schizotypal personality plus a reduction in functioning (‘state plus trait’). © 2013 Wiley Publishing Asia Pty Ltd
Correlational analyses at baseline indicated significant relationships between internalized stigma and: (i) depression; (ii) social anxiety; (iii) distress associated with unusual psychological experiences; and (iv) suicidal thinking. Regression analysis indicates negative appraisals of unusual experiences contributed significantly to depression scores at 6-month follow up when controlling for baseline depression and unusual psychological experiences.
Young people meeting criteria for an at risk mental state (ARMS) often report other psychological difficulties, in particular depression.3 In a recent randomized controlled trial of cognitive behavioural therapy (CBT) for individuals at risk of developing psychosis, it was reported that 41% of the sample had a co-morbid diagnosis of major depressive disorder and 43% had a co-morbid diagnosis of anxiety.4 Research has indicated a relationship between state at-risk symptoms and depression, showing associations among bizarre experiences, persecutory ideas and level of depression.5 Yung and colleagues found that a high level of depression in young people who met criteria for ARMS was a 133
Internalized stigma in at risk group significant predictor of psychosis,6 indicating that depression may act as a risk factor for transition. Psychosis is one of the most stigmatized mental health problems.7,8 Recent research shows that people with psychosis are aware of the negative cultural stereotypes associated with a diagnosis of psychosis; over 50% of the sample reported moderate to high levels of internalized stigma.9 Internalized stigma (or self-stigma) has been defined as ‘becoming aware of the label and identifying with the stereotypes’10 and also, ‘the internalisation of shame, blame, hopelessness, guilt and fear of discrimination associated with mental illness’.11 Research indicates that post-psychotic depression may develop in relation to self-stigmatizing beliefs.12–14 Similarly, the role of other stigma-related factors such as shame, marginalization and entrapment has been associated with social anxiety in psychosis populations.12,15,16 It has been argued that early detection and intervention (either pharmacological or psychological) is questionable in the ARMS group due to false positives.17 The potential stigma resulting from labelling people meeting ARMS criteria as at risk could have potential negative consequences for their personal identities.18–20 Although a decision has been made to not include a psychosis risk syndrome in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V), the proposal of this diagnose for young people meeting at-risk criteria sparked an interesting debate about the potential consequences of labelling young people at risk with a formal psychiatric diagnosis.20,21 A number of articles expressed concern that this could result in a high number of young people being unnecessarily exposed to potentially harmful effects of stigma and discrimination.20,21 Qualitative research has indicated that young people with an ARMS may be concerned about stigma in relation to their unusual psychological experiences, with all participants reporting a fear of negative reactions from other people because they had unusual psychological experiences,22 and the lack of systematic measurement of stigma and discrimination in young people help seeking for unusual psychological experiences has been identified as a limiting factor to understanding how young people at risk may be affected by stigma.19 We aim to investigate the presence of internalized stigma in the ARMS population and to explore the potential impact of internalized stigma on depression, social anxiety and distress linked to unusual psychological experiences. We will first validate a revised version of the Personal Beliefs about Experiences Questionnaire (PBEQ), a measure of 134
internalized stigma used with adult psychosis populations, in an ARMS population. It is hypothesized that: there will be a significant relationship between internalized stigma and depression, and between internalized stigma and social anxiety; there will be significant relationship between self-stigma and distress associated with unusual psychological experiences; there will be a significant relationship between internalized stigma and self-harm/suicidal ideation; internalized stigma at inclusion will predict depression, social anxiety and suicidality severity at 6-month follow up when controlling for baseline line depression, social anxiety and suicidality scores. METHODS Sample The participants consisted of 288 young people aged between 14 and 35 years with no history of psychosis. All met criteria on the Comprehensive Assessment for At-Risk Mental States (CAARMS).2 Data were collected from five sites in the UK as part of the Early Detection and Intervention Evaluation for people at risk of psychosis 2 (EDIE 2).23 Materials CAARMS The CAARMS is a semi-structured interview designed to identify people who meet criteria for having an at-risk mental state. The measure has seven categories; however, for the purpose of this study, only the positive symptoms category, which comprises of four subscales, unusual thought content (UTC), non-bizarre ideas (NBI), perceptual abnormalities (PA) and disorganized speech (DS), each of which receives a global rating score (0–6), a frequency score (0–6) and a distress score (0–100). CAARMS symptom severity was operationalized as the summed scores of the global rating scale score and frequency score. A measure of self-harm/suicidal thoughts and behaviour was also incorporated into the CAARMS. The CAARMS has been shown to demonstrate good to excellent concurrent, discriminate and predictive validity and excellent interrater reliability.2 PBEQ The PBEQ is a revised version of the Personal Beliefs about Illness Questionnaire (PBIQ).14 It is a 13-item measure of cognitive appraisals of psychosis; each © 2013 Wiley Publishing Asia Pty Ltd
M. Pyle et al. item is a statement of stereotypical social and scientific beliefs about psychosis which the respondent rates in relation to the degree to which he or she endorses the statements as true about himself or herself. Each item is rated on a 4-point scale (1–4): ‘strongly disagree’, ‘disagree’, ‘agree’, ‘strongly agree’. A revised version of the original PBIQ was developed for the purpose of this study; three items were removed from the questionnaire as they were considered not to be related to the ARMS population. These items are as follows: ‘If I am going to relapse, there is nothing I can do about it’, ‘I will always need to be cared for by professional staff’, ‘People like me must be controlled by psychiatric services’. In addition to removing these three items, the word ‘illness’ from the original PBIQ has been substituted with the word ‘experiences’. The original version of the PBIQ demonstrated good reliability (Cronbach’s α ranging from 0.51 to 0.71). The Beck Depression Inventory for Primary Care (BDI-PC) The BDI-PC24 is a shortened revised version of the Beck Depression Inventory (BDI25) The BDI-PC is comprised of seven items that are related to depressive symptoms, each rated on a 4-point scale (0–3). The BDI-PC is scored by adding the ratings for each item to produce a total score, with a range of 0–21. Testing of the measure has revealed high internal consistency (Cronbach’s α = 0.88). Social Interaction Anxiety Scale (SIAS)26 The SIAS26 is a 20-item questionnaire designed to measure levels of fear in social interaction situations; each item is rated on a 5-point Likert scale (0–5) as follows: ‘not at all’, ‘slightly’, ‘moderately’, ‘very’ and ‘extremely’. The SIAS has received extensive validation.26 Participants and procedures The 288 participants in the ARMS group were referred to and recruited into EDIE 2. Ethical approval was granted from the Cambridgeshire 4 Research Ethics Committee REC reference number 05/MRE05/61. All participants provided full informed consent before completing any of the measures. Measures were administered at baseline assessment and at 6-month follow up, all except the CAARMS were completed as self-report. Statistical analyses The data were examined for normality using the analysis of skewness and kurtosis and visual © 2013 Wiley Publishing Asia Pty Ltd
inspection. The variables were normally distributed except for CAARMS UTC, PA and DS subscale distress scores, and therefore non-parametric equivalents were used. Data were analysed using SPSS for Windows version 15 (IBM Corp., Armonk, NY, USA).
RESULTS In order to validate the PBEQ for the ARMS population, a principal component analysis (PCA) was conducted on the 13 items on the PBEQ with direct oblim rotation. The Kaiser-Meyer-Olkin (KMO) measure verified the sampling adequacy for the analysis, KMO = 0.741, which is considered ‘good’27 and which is above the acceptable limit of 0.5.28 Bartlett’s test of sphericity 609.489 = (78), P < 0.001, indicated that correlations between each item were sufficiently large for PCA. An initial analysis was run to obtain eigenvalues for each component in the data. Four components had eigenvalues over Kaiser’s criterion of 1 and in combination explained 57.2% of the variance. However, the scree plot indicated inflexions that would justify retaining components 1 and 2, as such the number of components retained was 2 as indicated by the scree plot examination. Table 1 shows the factor loadings after rotation. The items that cluster on the same components suggest that component 1 represents negative appraisals of experiences (NAEs) and component 2 represents the perceived social acceptance of experiences (SAEs). Reliability testing of these two components was carried out and Cronbach’s alpha is reported in Table 1. As indicated in Table 1, the NAE subscale has a good reliability, Cronbach’s α = 0.74; the SAE subscale has a lower reliability, Cronbach’s α = 0.52. The baseline characteristics of the sample and descriptive statistics for the measures are presented in Tables 2 and 3. Pearson’s correlation coefficients were performed between the baseline NAE and SAE subscales measuring internalized stigma and (i) the baseline BDI and (ii) the baseline SIAS (see Table 4). Significant positive correlations were found between NAE and depression (r = 0.538, P =