Psychological Services 2012, Vol. 9, No.

3, 240 247

In the public domain DOI: 10.1037/a0027740

Change in Self-Stigma Among Persons With Schizophrenia Enrolled in Rehabilitation: Associations With Self-Esteem and Positive and Emotional Discomfort Symptoms
Paul H. Lysaker
Roudebush Veterans Affairs Medical Center, Indianapolis, Indiana and Indiana University School of Medicine

David Roe
University of Haifa

Jamie Ringer
Roudebush Veterans Affairs Medical Center, Indianapolis, Indiana and Indiana University School of Medicine

Emily M. Gilmore
University of Indianapolis

Philip T. Yanos
City University of New York Self-stigma is a barrier to the recovery of persons with schizophrenia. Little is known about whether participation in rehabilitation is naturalistically linked to declines in self-stigma, and if so, what is correlated with changes in self-stigma. The current study examined in a quasi-experimental design the rate of change of self-stigma and whether changes were correlated with self-esteem, positive symptoms, and emotional distress for persons enrolled in rehabilitation. Symptoms were measured using the Positive and Negative Syndrome Scale (Kay, Fizsbein, & Opler, 1987), self-esteem was measured with the Multidimensional Self-Esteem Inventory (Lysaker, Ringer, & Davis, 2008), and self-stigma was assessed using the Internalized Stigma of Mental Illness Scale (Ritsher, Otilingam, & Grajales, 2003). Seventy persons with schizophrenia who worked at least one month in a vocational rehabilitation program were assessed on all measures at baseline and ve months later. Results indicated a 25% decrease in self-stigma for 38% of the sample; these individuals tended to have less emotional distress both at baseline and follow-up, and had higher levels of self-esteem at follow-up. No differences in positive symptoms were found for groups whose stigma did or did not decrease. Results suggest that decreases in self-stigma may be correlated with increased self-esteem, while higher levels of emotional distress may be a barrier to stigma reduction. Keywords: schizophrenia, stigma, symptoms, recovery, rehabilitation

Despite increased awareness of the nature of schizophrenia spectrum disorders, stereotyped beliefs among the general public and health care

profession are common around the world (Angermeyer & Matschinger, 2003; Bell et al., 2010; Corrigan, Roe & Tsang, 2001; Economou, Rich-

This article was published Online First April 2, 2012. Paul H. Lysaker and Jamie Ringer, Roudebush Veterans Affairs Medical Center, Indianapolis, Indiana and Department of Psychiatry, Indiana University School of Medicine; David Roe, Department of Community Mental Health, Faculty of Social Welfare and Health Science, University of Haifa, Haifa, Israel; Emily M. Gilmore, School of Psychological Science, University of Indianapolis; Philip T. Yanos, Psychology Department, 240

John Jay College of Criminal Justice, City University of New York. The Veterans Affairs Rehabilitation Research and Development Service supported the research on which this study was based. Correspondence concerning this article should be addressed to Paul H. Lysaker, Day Hospital 116H, 1481 West 10th Street, Roudebush VA Medical Center, Indianaopolis, IN 46202. E-mail: plysaker@iupui.edu

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ardson, Gramandan, Stalikas, & Stefanis, 2009; Swindle, Heller, Pescosolido, & Kikuzawa, 2000; Volmer, Ma esalu, & Bell, 2008). Categorically referred to as stigma, these beliefs include heightened expectations of violent and disorderly behavior, lack of personal competence, as well as an inability to sustain gainful employment or make informed decisions (Markowitz, 1998; Phelan, Link, Stueve, & Pescosolido, 2000). Beyond being a matter of misinformation, stigmatizing beliefs held by persons in the general public may incline them to avoid or seek social distance from those with schizophrenia (Martin, Pescosolido, & Tuch, 2000) and can interfere, therefore, with the efforts of persons with schizophrenia to obtain work (Bordieri & Drehmner, 1986; Link, 1987), housing (Page, 1983), and medical and mental health care (Ru sch et al., 2009). Stigma may also affect persons with mental illness psychologically directly and indirectly in a number of ways. The internalization of stigma may lead some with mental illness to embrace negative stereotypes about mental illness that generate negative implicit beliefs about themselves and erode quality of life (Ru sch, Corrigan, Todd, & Boderhausen, 2010). The internalization of stigma may incline persons to believe that they are not equal members of their communities and to entertain self-fullling prophecies of failure (Ritsher, Otilingam, & Grajales, 2003; Wright, Gronfein, & Owens, 2000). These, in turn, may represent a risk factor for suicide (Siris, 2001), as well as the exacerbation of other underlying factors associated with illness (Yanos, Roe, & Lysaker, 2011). Self -stigma may also indirectly affect well-being, as it may lead some with mental illness to reject that they are ill, to reject treatment or be resistant to forming working relationships with mental health treaters (Freudenreich, Cather, Evins, Henderson, & Goff, 2004). Self-stigma may lead people to believe, for instance, that they cannot benet from psychological services, or to fear that if they accept such services they may become targets for the stigma of others. It is therefore not surprising that exposure to and the internalization of stigma predicts more severe levels of symptoms when assessed concurrently and prospectively (Ertugrul & Ulug, 2004; Yanos, Roe, Markus, & Lysaker, 2008). Stigma is thus an essential issue for the provision of psychological services to persons with schizophrenia. In the face of this literature, interest has arisen in developing specic interventions targeted to

reduce self-stigma (Knight, Wykes, & Hayward, 2006; Yanos, Roe, & Lysaker, 2011). This work tends to involve group interventions apart from other psychological services. While this work is promising, it has yet to be addressed whether stigma may change naturalistically within rehabilitation, particularly those forms of rehabilitation that offer experiences that may contradict selfstigma, such as vocational rehabilitation. For instance, it has long been asserted that various forms of rehabilitation might enable individuals to challenge stigmatizing beliefs (e.g., that they are not competent or could not form bonds with others) by increasing personal autonomy (Bebout & Harris, 1995; Williams & Collins, 1999). Additionally, positive experiences in rehabilitation could help some individuals to reject self-stigma in favor of more positive accounts of their abilities. A better understanding of whether participation in rehabilitation programs is linked with reductions in self-stigma, and, if so, what factors correlate with these changes, could provide important information about the potential of existing services to address stigma, as well as identify barriers to stigma reduction which could be addressed in adjunctive interventions. To address these issues, we examined, in a quasi-experimental design, the rates of change and correlates of self-stigma gathered prior to and ve months following engagement in vocational rehabilitation. We had two specic aims. First, to understand the extent to which self-stigma changed following experiences in rehabilitation, we assessed both the stability of categorical assessments of self-stigma levels across time, as well as the frequency with which signicant decreases in self-stigma of 25% or greater occurred. We chose this, as it reects a minimum reduction of at least one quarter of previous levels, and thus seems like a clinically meaningful change. Our second aim was to determine where there were correlates of change in self-stigma levels. In particular, we explored whether persons who demonstrated signicant changes in self-stigma had different levels of positive symptoms, emotional discomfort symptoms, and self-esteem at either assessment point. We chose to assess these variables given that higher levels of selfstigma have been linked to greater positive and emotional discomfort symptoms, as well as poorer self-esteem over time (Lysaker, Davis, Warman, Strasburger, & Beattie, 2007; Lysaker, Tsai, Yanos, & Roe, 2008).

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Method Participants Sixty men and 10 women with SCIDconrmed Diagnostic and Statistical Manual of Mental Disorders (4th ed., text rev.; DSMIV TR; American Psychiatric Association, 2000) diagnoses of schizophrenia (43) or schizoaffective disorder (27; Spitzer, Williams, Gibbon, & First, 1994) were recruited from a comprehensive day hospital at a Veterans Affairs Medical Center and local community mental health center for a larger survey of the effects of cognitive therapy and vocational rehabilitation in schizophrenia. Thus all were enrolled in active treatment. This larger study included a total of 100 participants. The participants in this study each worked for at least one month in a part-time job placement and completed the follow-up procedures. Of the original 100 potential participants, the data of 25 participants were excluded because they did not work and declined follow-up procedures, and the data for another ve participants, were excluded, because although they completed the follow-up procedures, they declined to work. All participants were receiving ongoing outpatient treatment and were in nonacute or stable phases of their disorders, dened as no hospitalizations or changes in medication or housing in the last month. Participants with active substance dependence or those with a documented history of mental retardation were excluded. Participants had a mean age of 46.84 (SD 8.80), a mean educational level of 12.79 (SD 2.25) and a median of ve lifetime psychiatric hospitalizations with the rst occurring on average at the age of 27.35 (SD 10.99). Instruments Internalized Stigma of Mental Illness Scale (ISMIS). The ISMIS (Ritsher, Otilingam, & Grajales, 2003) is a 29-item questionnaire designed to assess subjective experience of stigma. It asks participants to rate on a 4-point Likert scale the extent to which they agree or disagree with rst-person statements. Items are then summed to provide ve scale scores. For the purposes of this study, we generated an index from the rst four scales: Alienation, which reects feeling devalued as a member of

society, stereotype endorsement, which reects agreement with negative stereotypes of mental illness, discrimination experience, which reects current mistreatment attributed to the biases of others, and social withdrawal, which reects avoidance of others because of mental illness. We did not include the fth scale, Stigma Resistance, as it is less about the experience and incorporation of stigma. All scale scores are calculated as averages with higher scores suggesting more severe experiences of stigma. Evidence of acceptable internal consistency, testretest reliability, and factorial and convergent validity have been reported by the authors (Ritsher, Otilingam, & Grajales, 2003). Multidimensional Self-Esteem Inventory (MSEI). The MSEI (Lysaker et al., 2008) is a 116-item self-report measure that assesses individuals self-perception of their overall social value. Respondents rate items on a 5-point Likert scale according to the degree or frequency with which each item applies to them. The MSEI offers t scores based on a community sample. We chose this instrument because its wide variety of items may result in a better estimate of general self-esteem. Studies of persons with psychosis from a previous sample have revealed a signicant degree of internal consistency for the total score: Coefcient .82; p .001 (Kay, Fizsbein, & Opler, 1987). Positive and Negative Syndrome Scale (PANSS). The PANSS (Kay et al., 1987) is a 30-item rating scale that was completed by clinically trained research staff at the conclusion of chart review and a semistructured interview. It is one of the most widely used semistructured interviews for assessing the wide range of psychopathology in schizophrenia. For the purposes of this study, two of the ve PANSS-factor-analytically derived component scores were utilized: Positive symptoms, which includes symptoms such as hallucinations and delusions, and emotional discomfort, which includes symptoms such as depressed and anxious mood (Bell, Lysaker, Goulet, Milstein, & Lindenmayer, 1994). Assessment of interrater reliability for this study was found to be good to excellent with intraclass correlations for blind raters. Procedures All procedures were approved by the research review committees of Indiana University and

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the Roudebush Veterans Affairs Medical Center, Indianapolis, IN. Following informed consent, diagnoses were determined using the Structured Clinical Interview for DSMIV-TR conducted by a clinical psychologist. Following the SCID, participants were administered the PANSS, MSEI and ISMIS as part of an assessment battery for participants entering a vocational rehabilitation research program. A research assistant was available to assist participants if there were difculties reading or understanding the questionnaire. PANSS ratings were performed blind to responses to the ISMIS and MSEI. PANSS interviews were conducted by trained research assistants with a minimum of a B.A. degree in a eld related to psychology. After completing baseline assessments participants were offered a part-time paid work placement within the VA medical center. Job duties were equivalent to entry-level positions, and hospital staff provided supervision. Participants were expected to work between 10 and 20 hours per week as determined by their own wishes. Efforts were made to match the work placements with the participants interests and skills and could be changed at participant request. All participants were offered some form of group and individual support. These services were focused on work functioning and did not explicitly address stigma. The PANSS, MSEI and ISMIS were administered a second time, ve months after baseline assessments were completed. An interval of ve months was chosen as to assess persons while they were involved in the intervention and not following the intervention, so that scores would not be deated by disappointment over the program ending. More information about placements and support services have been reported elsewhere (Davis, Lysaker, Lancaster, Bryson, & Bell, 2005). Analyses Analyses were conducted in ve phases. First, a coefcient alpha was calculated for the four primary ISMIS scores to determine whether they were sufciently related to one another, such that they might be meaningfully combined into a summary score or single index, as per our recent work (Lysaker, Roe, & Yanos, 2007; Lysaker et al., 2007). Second, we calculated the frequencies to which participants could be classied as having minimal, moder-

ate, and severe self-stigma at baseline and at follow-up using the stigma index score. We then calculated the percentages of participants whose self-stigma classication changed. The basis for our classications were rational in nature. Participants were classied as having minimal self-stigma if their average scores were less than 2, as such scores reect that the participant selected strongly disagree or disagree for more than half the items. Participants were classied as having moderate self-stigma if their average scores were between 2 and 3, as such scores reect that the participant endorsed some items but disagreed with others. Finally participants were classied as having severe selfstigma if their average scores were greater than 3, as such scores reect that the participant primarily endorsed either agree or strongly agree on most items. In the third phase of the analysis, we conducted a paired t test of self-stigma scores at baseline and follow-up to determine whether a general trend could be found suggesting improvement. Fourth, in order to determine how often signicant improvement showed among participants in the sample who had initially experienced some selfstigma, we calculated the percentage of change in self-stigma scores from baseline to follow-up and classied participants as signicantly improved based on the a priori cut-off score of a decrease in at least 25% of the self-stigma score from baseline to follow-up. We did not look for participants who signicantly improved in the minimal stigma group since they, by denition, were already experiencing a targeted level of minimal to no selfstigma. Finally, to examine correlates of signicant change, an ANOVA was planned to compare the demographic variables of participants whose stigma scores signicantly decreased with those whose did not. Then, three mixed, repeatedmeasures ANOVAs were planned to compare the baseline and follow-up PANSS and self-esteem scores of participants whose self-stigma scores signicantly decreased with the scores of participants whose self-stigma scores did not decrease signicantly. Results First, internal consistency was calculated to determine whether the rst four subscales of the ISMIS (alienation, stereotype endorsement, discrimination experience, and social withdrawal)

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could be combined into a total score. This analysis revealed a high degree of internal consistency, coefcient .81. Correlations among the individual scale scores were relatively robust and ranged from r .56 ( p .0001) for discrimination experiences and stereotyped endorsement to r .76 for alienation and social withdrawal ( p .0001). Scores were consequently averaged at both assessment points to create a single self-stigma index score. Participants were then classied as having minimal, moderate, or severe self-stigma based on their scores at baseline, and were reclassied based on their scores at follow-up. These frequencies are reported in Table 1. As revealed in Table 1, of the 13 participants originally classied as having minimal self-stigma, nine (82%) continued to report minimal self-stigma while four (18%) reported moderate self-stigma at followup. Of the 47 who originally reported moderate self-stigma at baseline, 11 (23%) reported minimal self-stigma, two (5%) reported severe selfstigma, and 34 (72%) continued to report moderate self-stigma at follow-up. Of the 10 who reported severe self-stigma at baseline, two (20%) reported minimal self-stigma, four (40%) reported moderate self-stigma, and four (40%) continued to report severe self-stigma at followup. Thus, 62% of the sample retained its original classication (2 24.66, p .0001). Comparisons of minimal, moderate, and severe self-stigma groups at baseline found no significant difference between groups for age, education, lifetime hospitalizations or gender. A paired t test comparing ISMIS indices at baseline and follow-up revealed a modest but signicant overall reduction in stigma from 2.36 (SD .54) to 2.20 (SD .57), t 2.79 ( p .007). Of the 47 participants who were originally classied as having either moderate or

severe self-stigma levels, 18 (38%) reported a decrease of 25% or more (relative to their baseline stigma index) on the ISMIS. ANOVA revealed no differences in age, education, or frequency of hospitalizations, and chi square revealed no differences in gender between the group whose ISMIS scores signicantly improved and the group whose ISMIS scores did not signicantly improve. To explore whether changes in stigma were linked with performance on other test scores, three repeated-measures ANOVAs comparing baseline and follow-up assessments of symptoms and self-esteem were conducted. As presented in Table 2, these analyses revealed a signicant group effect for both emotional discomfort and self-esteem, signicant time effects for emotional discomfort and self-esteem, and a signicant group-by-time interaction for selfesteem. There was no signicant group or time effect for positive symptoms. Individual ANOVAs revealed that the group whose stigma scores improved had lower scores on emotional discomfort at both time points (F 4.63, p .05; F 6.00, p .05, respectively) and had higher self-esteem at follow-up (F 11.64, p .01) but not at baseline. For exploratory purposes, we correlated the baseline with follow-up scores with one another. This revealed that positive symptoms at baseline were signicantly correlated with positive symptoms at follow-up (r .61, p .0001), as were symptoms of emotional discomfort (r .51, p .0001) and self-esteem (r .60, p .0001). Discussion In the current study we sought to examine the extent to which self-stigma changed in a group of persons with schizophrenia enrolled in a vocational rehabilitation program. When pre- and post-self-stigma assessments were compared, we found that 30% (17 of the 57) of participants with initial levels of either moderate or severe self-stigma reported a lower level of self-stigma at follow-up. This rate of improved self-stigma was three times the rate of self-stigma from baseline to follow-up, which was reported by six out of the 60 individuals originally classied as having either minimal or moderate levels of self-stigma. When we looked at the degree of signicant change, we found that the selfstigma of 38% of the sample was reduced by at

Table 1 Frequencies of the Report of Minimal, Moderate, and Severe Levels of Stigma at Baseline and 5-Month Follow-Up (N 70)
Stigma level at baseline Minimal Moderate Severe Stigma level at ve-month follow up Minimal 09 11 02 Moderate 04 34 04 Severe 00 02 04 Total 13 47 10

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Table 2 Repeated-Measures ANOVA Comparing Positive Symptoms, Emotional Discomfort, and Self-Esteem Among Participants With and Without a 25% Improvement in Stigma From Baseline to Follow-Up
Positive Symptoms1 Time 1 Stigma Improved Stigma
1

Emotional Discomfort2 Time 1 11.72 (3.88) 14.23 (4.18) Time 2 9.83 (3.00) 12.56 (4.44)

Self-Esteem3 Time 1 45.78 (9.42) 41.31 (11.52) Time 2 52.94 (10.75) 42.79 (10.30)

Time 2 14.78 (7.16) 16.44 (4.70)

15.39 (5.30) 16.82 (4.35)

Note. Not improved. Time , F(1, 55) 0.54, p .46, Group F(1, 55 1.42, p .24; Group Time interaction F(1, 55) 0.28, p .87. 2 Time , F(1, 55) 7.60, p .01, Group F(1, 55 7.40, p .01; Group Time Interaction F(1, 55) 0.30, p .86. 3 Time , F(1, 55) 11.50, p .001, Group F(1, 55 7.00, p .05; Group Time interaction F(1, 55) 4.95, p .05.

least 25%. This may suggest that a clinically signicant reduction in self-stigma may occur, without targeted intervention, for a minority of persons enrolled in vocational rehabilitation. Those participants whose self-stigma improved by 25% tended to also experience some clinical gains as well, demonstrating lower levels of emotional discomfort at both baseline and follow-up. Of note, however: Levels of emotional discomfort were actually reduced for both groups from baseline to follow up, regardless of change in self-stigma. Similarly, the group whose self-stigma levels improved had baseline levels of self-esteem equivalent to those whose self-stigma levels did not improve. However, the group whose stigma levels improved reported signicant increases in self-esteem at follow up, but the levels of self-esteem of the group whose self-stigma levels did not improve were unchanged from baseline to follow-up. Taken together, results suggest that, for the majority of participants, self-stigma levels remained relatively stable over a 5-month period. This may suggest that in standard vocational rehabilitation services, the modal experience is not one in which self-stigma is eliminated. This may point to the need for vocational as well as possibly other rehabilitative efforts to include specialized services that focus on self-stigma. Of note, when self-stigma decreases, it may be associated with improved self-esteem. It was unexpected that no relationship between self-stigma and positive symptoms (of schizophrenia) would be found at either time point. This result may indicate that although positive symptoms of schizophrenia may predict level of selfstigma because they signal others that the person is mentally ill, changes in self-stigma may not lead to a reduction of positive symptoms.

Limitations There are limitations to this study. Generalization of ndings is limited by sample composition. Participants were mostly men in their 40s who had been involved in treatment for years. A different relationship may exist between stigma experience, symptoms, and self-esteem among women or among younger males with schizophrenia, or among persons who decline treatment. Further we examined our variables at two points in close proximity to one another. A different set of relationships might emerge in longer longitudinal studies. Further, the quasi-experimental design of this study does not allow for conclusions to be drawn regarding the inuence that participation in rehabilitation may have had on any of the relationships described by the results. However, future research utilizing comparison groups could greatly add to knowledge about the efcacy of interventions for reducing self-stigma. For example, it is possible that reductions in self-stigma demonstrated in this study would have been more prevalent or more pronounced if the rehabilitation program had included interventions specically targeted to reduce self-stigma. Because there was no comparison group in this study, rival interpretations of the ndings cannot be ruled out, including the possibility that self-stigma tends to resolve itself among less distressed persons regardless of whether they are involved in treatment or not. It is also possible that the factors not measured here are causally linked to both emotional discomfort symptoms and stigma and may account for the observed relationships in this study.

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Contribution to the Field and Implications for Future Research Despite limitations, results suggest that selfstigma levels changed over time for over one third of vocational rehabilitation participants with schizophrenia. Those changes appeared particularly among participants with lower baseline levels of emotional discomfort. Further, reductions in self-stigma were correlated with other clinical improvements, such as greater self-esteem. These results support the rationale for the potential importance of efforts to reduce stigma, particularly in light of the accumulating evidence of its negative impact on a host of mental health outcomes, including quality of life, interpersonal relationships, treatment utilization, and suicide (Bordieri & Drehmner, 1986; Link, 1987; Martin et al., 2000; Page, 1983; Ru sch et al., 2010). The results of the current study also provide fuel for future research. For example, one hypothesis to explain why lower levels of emotional discomfort were associated with reductions in self-stigma is that persons with less emotional distress may be better able to master work tasks and thus increase their own sense of competency, leading to reductions in selfstigma. Another possibility, consistent with several recent suggestions (Yanos, et al., 2010; Yanos, Lysaker, & Roe, 2010) is that selfstigma is closely tied to both distress and selfesteem such that changes which occur in one domain lead to changes in another; there are concurrent but only tenuous prospective relationships between variables. It is also possible that studies in which multiple measurement points over periods during which there are signicant changes in both symptoms and life circumstances may be needed to detect the longterm effects of these variables upon one another. As these hypotheses are explored, the role of treatment interventions, such as rehabilitation, and their potential impact on self-stigma can be more thoroughly evaluated. References
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