Outcomes of a Psychoeducational Intervention to Reduce Internalized Stigma Among Psychosocial Rehabilitation Clients
Abstract
Objective:
This community-based randomized controlled trial was carried out to test the Ending Self-Stigma (ESS) psychoeducational intervention, which is designed to help adults with serious mental illnesses reduce internalization of mental illness stigma and its effects.
Methods:
A total of 268 adults from five different mental health programs in Maryland took part. After baseline interview, consenting participants were randomly assigned to the nine-week ESS intervention or a minimally enhanced treatment-as-usual control condition. Participants were assessed by using symptom, psychosocial functioning, and self-stigma measures at baseline, postintervention, and six-month follow-up. Demographic characteristics were assessed at baseline.
Results:
Compared with participants in the control condition, ESS group participants showed significant decreases on the stereotype agreement and self-concurrence subscales of the Self Stigma of Mental Illness Scale, significant improvement on the alienation and stigma resistance subscales of the Internalized Stigma Mental Illness measure, and a significant increase in recovery orientation from baseline to postintervention. None of these differences were sustained at six-month follow-up.
Conclusions:
Results indicate that ESS was useful in helping to reduce key aspects of internalized stigma among individuals with mental illnesses and that advances in the delivery, targeting, and content of the intervention in the field may be warranted to increase its potency.
Stigmatization of mental illnesses is common (1–7) and is associated with myriad negative effects for people with mental health problems. These effects include opportunity loss, demoralization, anger, isolation, and reluctance to be associated with mental health care (2–12). Efforts to reduce stigma have proliferated (13–18) and have had some success (14,17,19). Yet change has been slow and uneven, and stigmatization of mental illness remains pervasive.
As with other prejudices, stigma regarding mental illness may be absorbed into one’s thinking about oneself. When stigma is internalized, it has additional, manifold negative effects (9,20–23), including increased depression and demoralization (20,24–26), avoidant coping (20,24,27–29), exacerbated ambivalence about mental health care (22,28,30,31), and eroded hope and self-esteem (27,30,32–34). Resources are needed to help people protect themselves from the effects of stigma and discrimination, which persist despite efforts to eliminate them.
One response to self-stigma has been the development of interventions to reduce levels of internalized stigma (35,36). Most are group-based programs combining education and personal discussion with practical strategies. For example, Yanos and colleagues (37) developed Narrative Enhancement and Cognitive Therapy (NECT) to harness the influence of self-narrative on sense of self and identity. In contrast, Corrigan and associates’ (38) brief intervention, Coming Out Proud, focuses on the pros and cons of self-disclosure of one’s mental illness. Fung and colleagues’ (39) Self-Stigma Reduction Program emphasizes interactions among insight, stigma, and treatment engagement.
The Ending Self-Stigma Program
We developed Ending Self-Stigma (ESS) by drawing from the social-cognitive model of internalized stigma (21,22,34), cognitive-behavioral therapy, stigma research, and psychoeducation and recovery principles (28–31,35–42). ESS consists of nine weekly 90-minute manualized group sessions. Each group consists of six to eight individuals and is led by one or two trained group facilitators. Each session reviews the previous week’s key points and then uses discussion and practice exercises to present a strategy for reducing self-stigma. Participants are encouraged to demonstrate mutual support, individualize the strategies, and carry out personalized practice between sessions.
In 2011, 34 adults with serious mental illnesses participated in a noncontrolled pilot study of ESS (43). The study conducted assessments of internalized stigma, mental health recovery, empowerment, and perceived social support before and after the intervention. Participants were mostly male (81%), middle aged (mean±SD=54±9), high school graduates (81%), and African American (59%); 35% were white, and 6% were of multiracial background; and all were U.S. military veterans. Results were promising: internalized stigma decreased significantly, whereas recovery orientation and perceived social support increased significantly. Recently, other teams have also published intervention evaluations (44–50), with positive to mixed results. However, like the results of our pilot, their results were often limited by small sample sizes (<50) and the absence of a control or comparison group.
This study, a randomized controlled trial (RCT), tested whether ESS reduced internalized stigma and improved recovery-oriented variables among adults with serious mental illnesses. We hypothesized that ESS would result in significantly reduced scores on the agreement, self-concurrence, and self-esteem decrement portions of the Self-Stigma of Mental Illness Scale (SSMIS) (34,51) and on the total score and subscales of the 29-item Internalized Stigma of Mental Illness (ISMI-29) scale (24,52). Secondarily, we hypothesized that ESS participants would show greater increases in the sense of belonging, self-efficacy, and recovery orientation compared with control participants and that the benefits of ESS participation would be sustained at six months postintervention.
Methods
We tested ESS against minimally enhanced treatment as usual, with assessments at baseline, after completion of the intervention (postintervention), and at six-month follow-up, with data collected between June 2011 and April 2014. The study took place at five Maryland psychosocial rehabilitation programs—two urban, two suburban, and one rural. Although diverse, they share the typical structure of such U.S. programs (53). All serve adults meeting Maryland’s “severely mentally ill priority population” definition (54), which requires diagnosis of schizophrenia, bipolar, recurrent major depressive, schizotypal personality, borderline personality, or other delusional or psychotic disorder and documented functional impairments (54). Procedures were preapproved by the University of Maryland Medical School Institutional Review Board (IRB), the Sheppard Pratt Health System (home of several sites) IRB, and management at the study sites.
Eligible individuals were 18 to 90 years old, receiving services at a recruitment site, able to give full informed consent, and willing to say they would attend the ESS course if they were assigned randomly to the intervention. Exclusion was permitted only for persons with severe or profound mental retardation.
From 12 to 16 participants were recruited via flyers, announcements, and clinician recommendation at each site so that each ESS course contained six to eight people after randomization. A trained research assistant screened interested individuals. Eligible participants provided written consent, preceded by a brief assessment to verify study comprehension.
Intervention Condition: ESS
ESS was delivered as described above. Participants were randomly assigned to condition at the conclusion of the baseline assessment, stratified to create ESS classes of eight or fewer people at their study site each round. Two master’s-level therapists, one of whom was an author (CW), completed a full day of ESS training with the principal investigator (PI) before the study. One conducted ESS groups at two sites and the other at three sites. They also tracked attendance, contacted and sent materials to absent participants, and attended bimonthly group supervision with the PI.
To check ESS fidelity, one session was randomly chosen from sessions 1 to 5 before each course. A trained team member observed that session, completing a fidelity scale of ten content items and ten process items. If more than four items were rated “unacceptable” (<80% fidelity), a second session, randomly chosen from sessions 6 to 9, was observed and rated. If it too was below 80% fidelity, data from that course were excluded from the study.
Control Condition: Minimally Enhanced Treatment as Usual
Participants randomly assigned to the control group continued their usual psychiatric rehabilitation services at their study site. This involved individualized combinations of skill and illness management groups, individual counseling, care coordination, medication management, and wellness activities (53,55,56). Treatment as usual was minimally enhanced by a brochure about internalized stigma, which was reviewed with control-condition study participants by a trained research assistant after the conclusion of the person’s baseline interview.
Interviews, Randomization, and Measures
Assessment interviews were conducted at baseline, after completion of treatment (three months after baseline [postintervention]), and at follow-up (six months postintervention) by a trained research assistant blind to participants’ study condition. After baseline assessment, participants were randomly assigned to ESS or to the control group by using site-stratified, permuted blocks of 12 to 16 participants.
Assessments used the following measures: the SSMIS (34,51), a measure with four ten-item subscales (stereotype awareness, stereotype agreement, self-concurrence, and self-esteem decrement) corresponding to the social cognition model and with acceptable internal consistency (α=.72–.91) and test-retest reliability (r=.68–.82); the ISMI-29 (24,52), a measure of internalized stigma with five subscales (alienation, stereotype endorsement, discrimination experience, social withdrawal, and stigma resistance); the Maryland Assessment of Recovery in People With Serious Mental Illness (MARS) (57), a 25-item self-report measure of recovery orientation among people with serious mental illnesses with excellent internal consistency (α=.95), test-retest reliability (r=.898), and good face and content validity; the General Self-Efficacy Scale (58,59), an eight-item measure with good psychometrics that assesses a person’s beliefs or expectations about his or her capabilities; the Sense of Belonging Instrument (SOBI) (60), a 32-item measure of the psychological experience of belonging that has strong validity and reliability (61,62); the Brief Symptom Inventory (BSI) (63), a multidimensional symptom inventory derived from the Symptom Checklist-90–Revised containing 53 items for evaluating nine symptom dimensions and calculating three global indices of distress; the Experiences of Stigma Survey (4), which includes nine items regarding stigma-related disrespect experiences and 11 items regarding discrimination experiences; and the Beck Cognitive Insight (BCI) Scale (64–66), a 15-item questionnaire on which the self-certainty subscale score is subtracted from the self-reflectiveness subscale score to yield a cognitive insight score. In addition, we administered the Repeatable Battery of Neuropsychological Status (R-BANS) (67,68), which assesses list learning and story recall, at baseline. Results for the R-BANS subtests are combined into the R-BANS Immediate Memory Index, which measures encoding and learning of verbal information. We collected information about age, race-ethnicity, gender, education, living situation, military service, and employment and relationship status at baseline. Diagnosis was assessed via review of the participant’s clinical record and confirmed by a treatment provider.
Data Analysis
Frequencies, histograms, and normal-quartile plots were used to examine variable distributions and check for errors. Descriptive statistics of participant characteristics at baseline were calculated by condition and overall. For the primary analyses of whether ESS reduced internalized stigma compared with the control condition, we fit a repeated-measures mixed model to each of the SSMIS subscales and the ISMI inventory subscales by using data from all three time points. All participants who were part of the randomization process were included, regardless of follow-up assessment attendance, in keeping with intent-to-treat analysis. Within-individual correlation was accounted for by specifying correlated errors among repeated measures. Random effects were specified for correlation between individuals at the same site.
Several outcome scales were log transformed to correct right skew. Independent fixed effects in the model included time point and condition (ESS or control) × time point interaction terms. The interaction terms allowed for testing of differential changes between mean scores for the groups from baseline to postintervention. Because participants were randomly assigned to condition, differences in participants’ baseline characteristics were assumed to be chance variation, statistical tests comparing characteristics between the two groups were not conducted, and no baseline covariates were entered into the primary model (69).
If the condition × time interaction term indicated a significant change in an outcome between the baseline and postintervention assessments, a test was conducted using the condition × time interaction term at six-month follow-up to determine whether an intervention effect persisted. The effect size (ES) was calculated by dividing the condition × time beta coefficient by baseline raw standard deviation. In secondary analyses, models were rerun after removing ESS condition participants who attended zero classes.
Additional secondary analyses added interaction terms for baseline covariates to assess whether treatment effect varied by age, race-ethnicity, gender, diagnosis (psychosis versus nonpsychosis), and results for the BSI, the BCI indices, and the R-BANS Immediate Memory Index. Due to multiple exploratory tests, we adjusted these p values via false discovery rate procedures (70). We explored the relationship between attendance and treatment effect by replacing the dichotomous ESS condition variable in the main model with a four-level ESS attendance variable indicating the number of classes attended (0, 1–3, 4–6, and 7–9). All analyses were performed by using SAS, version 9.3.
Results
Sample
Of 315 interested individuals, 16 were ineligible and 31 declined or were lost to contact before giving consent; 268 completed consent, baseline assessment, and randomization. Of these, 253 completed the postintervention assessment, and 230 completed the six-month follow-up (an 86% retention rate). Randomization assigned 131 participants to ESS and 137 to the control group; retention between the two groups at six-month follow-up did not differ (N=113, 86%, and N=117, 85%, respectively).
Demographic results, clinical characteristics, and stigma scores at baseline are shown in Table 1. Many participants were middle aged, African American (47%), and male (61%) with 12 or more years of education (69%). Primary psychiatric diagnosis was most often schizophrenia or schizoaffective disorder (53%) or bipolar disorder (27%). Most participants (N=209, 78%) reported having experienced disrespect or discrimination regarding their mental illness “sometimes” to “very often” at baseline. Baseline ISMI-29 total scores showed that 69 (26%) participants reported no to minimal self-stigma; 127 (48%) reported mild self-stigma; 62 (23%), moderate self-stigma; and 9 (3%), severe self-stigma (32). There are no published norms for SSMIS scores.
All(N=268) | ESS(N=131) | Control(N=137) | |||||||
---|---|---|---|---|---|---|---|---|---|
Variable | TotalN | N | % | TotalN | N | % | TotalN | N | % |
Psychiatric diagnosis | 258 | 125 | 133 | ||||||
Bipolar | 70 | 27 | 39 | 31 | 31 | 23 | |||
Depression | 23 | 9 | 7 | 6 | 16 | 12 | |||
Schizophrenia | 79 | 31 | 37 | 30 | 42 | 32 | |||
Schizoaffective | 56 | 22 | 24 | 19 | 32 | 24 | |||
Other | 4 | 2 | 2 | 2 | 2 | 2 | |||
Depression with psychosis | 15 | 6 | 9 | 7 | 6 | 5 | |||
Psychosis NOS | 11 | 4 | 7 | 6 | 4 | 3 | |||
Age | 268 | 44.7±12.3 | 131 | 43.7±12.9 | 137 | 45.7±11.8 | |||
Male | 268 | 163 | 61 | 131 | 85 | 65 | 137 | 78 | 57 |
Currently married | 267 | 13 | 5 | 130 | 7 | 5 | 137 | 6 | 4 |
≥12 years of education | 267 | 184 | 69 | 130 | 87 | 67 | 137 | 97 | 71 |
Veteran | 268 | 14 | 5 | 131 | 6 | 5 | 137 | 8 | 6 |
Hispanic | 268 | 11 | 4 | 131 | 2 | 2 | 137 | 9 | 7 |
African American | 266 | 124 | 47 | 130 | 60 | 46 | 135 | 64 | 47 |
First received treatment for emotional or mental health problem (M±SD age) | 264 | 22.1±11.6 | 129 | 21.5±11.9 | 135 | 22.8±11.4 | |||
Brief Symptom Inventory Global Severity Index (t score) (M±SD)a | 267 | 44.4±9.2 | 131 | 44.8±8.9 | 136 | 44.0±9.5 | |||
Experiences of Stigma Survey (M±SD score)b | |||||||||
Stigma scale | 266 | 18.3±6.0 | 130 | 19.0±5.7 | 136 | 17.6±6.2 | |||
Discrimination scale | 206 | 11.1±7.5 | 99 | 11.5±7.5 | 107 | 10.6±7.5 | |||
Beck Cognitive Insight Scale (M±SD score)c | |||||||||
Self-reflectiveness subscale | 264 | 21.8±4.3 | 130 | 21.9±4.2 | 134 | 21.7±4.3 | |||
Self-certainty scale | 265 | 14.2±3.0 | 130 | 14.3±3.1 | 135 | 14.1±2.9 | |||
Composite scale | 262 | 7.6±5.1 | 129 | 7.5±4.8 | 133 | 7.6±5.3 | |||
Immediate Memory Index (M±SD score)d | 263 | 74.8±18.8 | 130 | 74.8±18.9 | 133 | 74.7±18.8 |
Characteristics of participants in Ending Self-Stigma (ESS) and a control condition at baseline
ESS Participation
Of 131 participants randomly assigned to ESS, 56 (43%) attended seven to nine of the nine sessions. Twenty-six (20%) attended four to six sessions; 28 (21%) attended one to three sessions; and 21 (16%) did not attend any sessions. Common reasons for absence were conflicting health appointments, transportation obstacles, not feeling well enough to attend, and forgetting.
Fidelity Results
All 13 ESS courses observed for fidelity were rated at or above 95%. No courses required the second fidelity check, and all data were retained for the study.
Primary Outcome: Internalized Stigma
ESS participants showed statistically larger reductions from baseline to postintervention compared with control-condition participants on the stereotype agreement (ES=–.31) and self-concurrence (ES=–.30) subscales of the SSMIS but not on the awareness or self-esteem decrement subscales (Table 2). On the ISMI-29, ESS participants showed significant but small improvements over the control group on alienation (ES=–.19) and stigma resistance (ES=–.27) but not on stereotype endorsement, discrimination, and social withdrawal nor on the total score. These findings reflect partial support of our hypotheses. No significant differences (ESS effects) persisted at six-month follow-up (Table 2), although gains made by ESS participants between baseline and postintervention on key subscales (SSMIS agreement, ISMI-29 alienation, and ISMI-29 stigma resistance) were largely maintained.
Baseline | Postintervention | Follow-up | ||||||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
ESS (N=131) | Control (N=137) | ESS (N=122) | Control (N=131) | ESS (N=113) | Control (N=117) | |||||||||||||||
Scale and subscale | M | SD | M | SD | M | SD | M | SD | Effect sizea | Test statistic | df | p | M | SD | M | SD | Effect sizeb | Test statistic | df | p |
Self-Stigma of Mental Illness Scalec | ||||||||||||||||||||
Awareness | 58.6 | 19.4 | 56.0 | 20.6 | 57.6 | 19.9 | 55.8 | 21.5 | .035 | .32 | 247 | .751 | 56.2 | 19.2 | 53.0 | 20.2 | .137 | 1.23 | 230 | .219 |
Stereotype agreement | 32.8 | 16.1 | 30.4 | 15.8 | 28.4 | 14.5 | 32.6 | 17.4 | –.312 | –2.78 | 251 | .006 | 28.1 | 13.7 | 29.6 | 13.7 | –.138 | –1.17 | 228 | .245 |
Self-concurrence | 24.1 | 14.6 | 23.2 | 13.2 | 20.5 | 12.9 | 23.5 | 12.9 | –.299 | –2.88 | 249 | .004 | 22.5 | 15.4 | 21.5 | 11.4 | .011 | .10 | 226 | .923 |
Self-esteem decrement | 20.7 | 13.6 | 21.2 | 14.8 | 18.2 | 12.1 | 20.0 | 13.6 | –.132 | –1.27 | 248 | .204 | 19.7 | 14.7 | 19.1 | 12.0 | .042 | .35 | 230 | .725 |
Internalized Stigma of Mental Illness–29d | ||||||||||||||||||||
Alienation | 2.3 | .7 | 2.4 | .7 | 2.1 | .6 | 2.3 | .6 | –.185 | –2.05 | 252 | .041 | 2.1 | .6 | 2.2 | .6 | –.119 | –1.15 | 230 | .250 |
Stereotype endorsement | 2.0 | .5 | 2.0 | .5 | 1.8 | .4 | 1.9 | .5 | –.051 | –.50 | 245 | .618 | 1.8 | .5 | 1.9 | .5 | –.126 | –1.05 | 234 | .295 |
Discrimination | 2.4 | .6 | 2.5 | .6 | 2.3 | .6 | 2.3 | .5 | –.057 | –.58 | 253 | .565 | 2.2 | .5 | 2.3 | .6 | –.194 | –1.73 | 232 | .085 |
Social withdrawal | 2.4 | .6 | 2.4 | .6 | 2.2 | .6 | 2.2 | .6 | –.001 | –.01 | 253 | .996 | 2.1 | .6 | 2.2 | .6 | –.099 | –.91 | 236 | .366 |
Stigma resistance | 2.2 | .4 | 2.0 | .4 | 2.0 | .5 | 2.1 | .4 | –.266 | –2.33 | 252 | .021 | 2.0 | .4 | 2.0 | .5 | –.112 | –.88 | 230 | .381 |
Total | 2.2 | .4 | 2.2 | .4 | 2.1 | .4 | 2.1 | .4 | –.139 | –1.52 | 252 | .131 | 2.0 | .4 | 2.1 | .4 | –.170 | –1.57 | 234 | .117 |
Sense of Belonging Instrumente | ||||||||||||||||||||
Psychological experience | 42.2 | 5.6 | 42.2 | 5.3 | 42.4 | 5.5 | 42.1 | 5.5 | .067 | .62 | 250 | .537 | 42.2 | 6.4 | 41.8 | 5.9 | .007 | .06 | 236 | .955 |
Antecedents | 49.2 | 9.1 | 48.3 | 10.1 | 50.7 | 9.0 | 50.3 | 10.1 | –.003 | –.04 | 246 | .971 | 51.3 | 9.1 | 50.7 | 9.8 | –.010 | –.09 | 235 | .927 |
General Self-Efficacy Scalef | 3.7 | .7 | 3.7 | .7 | 3.8 | .7 | 3.7 | .7 | .107 | 1.06 | 253 | .292 | 3.8 | .7 | 3.7 | .6 | .009 | .09 | 233 | .931 |
Maryland Assessment of Recovery Scaleg | 98.9 | 16.6 | 98.2 | 18.3 | 101.5 | 14.8 | 97.8 | 17.3 | .177 | 2.09 | 252 | .037 | 102.9 | 17.4 | 100.1 | 16.9 | .114 | 1.12 | 235 | .265 |
Outcomes at postintervention and six-month follow-up among 131 recipients of Ending Self-Stigma (ESS) and a control group
Secondary Outcomes: Recovery and Psychosocial Variables
There was a modest, statistically significant increase in MARS scores (ES=.18) from baseline to postintervention among ESS participants compared with control participants. There was no such effect on the SOBI or the General Self-Efficacy Scale (Table 2). MARS total scores continued to increase among ESS participants between postintervention and the six-month follow-up but not significantly more than among controls.
Exposure to ESS and Treatment Effect
Analyses comparing ESS participants who attended at least one session (N=110) with the control group yielded no meaningful changes from intent-to-treat results. Further, the treatment effects detected by the primary analysis were not modified by any baseline covariates. We also examined the associations between attendance and treatment effect by comparing mean changes in each outcome measure from baseline to postintervention among ESS participants grouped by number of sessions attended (0, 1–3, 4–6, and 7–9) and participants in the control group. Increased attendance was associated with the four subscales that showed significant reductions overall. Specifically, participants who attended seven to nine sessions showed statistically significant reductions on all four subscales compared with the control group: SSMIS stereotype agreement (t=−2.73, df=246, p=.050), SSMIS self-concurrence (t=−3.18, df=243, p=.002), ISMI-29 alienation (t=−2.11, df=252, p=.036), and ISMI-29 stigma resistance (t=−2.70, df=248, p=.007). However, there were no significant reductions in these subscales between the ESS participants who attended zero or one to three sessions and the control group. ESS participants who attended four to six sessions showed significant reductions compared with the control group on SSMIS stereotype agreement (t=−1.97, df=246, p=.050) and ISMI-29 stigma resistance (t=−3.06, df=251, p=.003).
Discussion and Conclusions
In this RCT, ESS helped participants improve key aspects of internalized stigma from baseline to postintervention compared with the control group. In addition, although baseline MARS recovery orientation scores were quite high, scores among ESS participants increased at postintervention, whereas scores among the participants in the control group decreased, and the difference was significant (Table 2). These findings reflect core elements of ESS and the dynamics of internalized stigma (2–12). ESS combines strategies, practice, and encouragement to question and resist stereotypes and draws on group camaraderie and personalized experiences to decrease alienation and demoralization. Furthermore, the stability of SSMIS awareness and the ISMI-29 discrimination scores shows that ESS did not iatrogenically increase participants’ sensitivity to societal stigma.
Most published self-stigma interventions have been tested only in limited studies, often showing pre-post improvements but lacking a control group, sufficient sample sizes, or follow-up time points (35,38,39,44–48,50,71). The exceptions are pre-post studies of NECT (49), an anti-stigma photovoice intervention (72), and an unusual HIV self-stigma–focused video intervention (73), each of which showed sustained improvement in self-stigma at follow-up for an intervention group versus a control group. To date, each is the sole rigorous study of the respective intervention to show positive results. This level of knowledge is insufficient for discerning what approaches might be used or combined to best effect. This study may begin to fill these gaps.
ESS attendance was variable, and attending more sessions predicted more benefit. Absences were for common reasons: conflicting appointments, transportation and logistical challenges, feeling ill, or forgetting. Going forward, interventions need to work around such obstacles to maximize effects. Diverse delivery formats and technologies, such as flexible session availability, one-on-one consultation, peer support, and Web-based or online video interaction, may be useful.
Notably, many of the 44 ESS participants who attended zero to two sessions said or implied that they never intended to attend because they were not interested in attending or because attendance was not associated with an honorarium, as were the research interviews. Our study also did not screen for a threshold of internalized stigma before enrollment. In “real-life” clinical use of ESS (or other interventions), people enroll out of concern about or interest in internalized stigma and its impacts. This gap between our research protocol and practical use of ESS was a study limitation.
It is notable that the pre-post benefits of ESS did not persist at six months in this RCT. Most relevant measures did not worsen among ESS participants over that time. Instead, for reasons unknown, the scores of participants in the control condition improved from postintervention to the six-month follow-up. However, ESS participants’ SSMIS self-concurrence and SSMIS self-esteem decrement scores did worsen slightly between postintervention and the six-month follow-up (Table 2). Self-stigma often fluctuates over time and circumstance, so fairly large ESs are necessary for an intervention to show effectiveness at follow-up. This suggests that ESS was insufficient to create lasting group effects in these core variables.
Unfortunately, that makes sense. Stigmatizing encounters are not uncommon (3,23), putting people at continuous longitudinal risk of internalized stigma and other stigma effects. Countering such ongoing exposure and risk likely requires longer-term resistance and resilience training and strategy reinforcement than would be possible in a nine-session course (74). In fact, numerous ESS study participants sought to take the class a second time after the study was over. Substantial, intermittent, and pervasive interventions may be needed to support protective strategies and counter-messaging in order to produce long-term effects. In addition, this study could not assess objective measures of recovery, such as employment, or other facets of stigma response, such as anticipated stigma, so it may have missed some of the effects of ESS.
Last, almost all study participants had contended with mental health problems for many years, and all were experiencing significant functional impairment, a requirement for eligibility for services at these settings. Some embraced the course avidly, commenting that it came at “the right time”—while they were already thinking about or struggling with internalized stigma. They described ESS as a source of validation, practical assistance, and inspiration. Another subset of participants described having had significant problems with internalized stigma when they were younger and wished they had had access to ESS then. We are investigating how to identify the “right time” to introduce self-stigma interventions and whether such interventions may have more impact earlier in a person’s illness trajectory.
1 : Attitudes towards people with mental illness: a cross-sectional study among nursing staff in psychiatric and somatic care. Scandinavian Journal of Caring Sciences 22:170–177, 2008Crossref, Medline, Google Scholar
2 : Experiences of stigma among outpatients with schizophrenia. Schizophrenia Bulletin 28:143–155, 2002Crossref, Medline, Google Scholar
3 : Collective levels of stigma and national suicide rates in 25 European countries. Epidemiology and Psychiatric Sciences 24:166–171, 2015Crossref, Medline, Google Scholar
4 : Mental health consumers’ experience of stigma. Schizophrenia Bulletin 25:467–478, 1999Crossref, Medline, Google Scholar
5 : The stigma of mental illness. Journal of Counseling and Development 86:143–151, 2008Crossref, Google Scholar
6 : Public conceptions of mental illness: labels, causes, dangerousness, and social distance. American Journal of Public Health 89:1328–1333, 1999Crossref, Medline, Google Scholar
7 : Perception of stigma among patients with schizophrenia. Social Psychiatry and Psychiatric Epidemiology 39:73–77, 2004Crossref, Medline, Google Scholar
8 : A mental health service users’ perspective to stigmatisation. Journal of Mental Health 12:223–234, 2003Crossref, Google Scholar
9 : Understanding labeling effects in the area of mental disorders: an assessment of the effects of expectation rejection. American Sociological Review 52:86–112, 1987Crossref, Google Scholar
10 : Perceived stigma and patient-rated severity of illness as predictors of anti-depressant drug adherence. Psychiatric Services 52:1615–1620, 2001Link, Google Scholar
11 : Don’t call me nuts: an international perspective on the stigma of mental illness. Acta Psychiatrica Scandinavica 109:403–404, 2004Crossref, Medline, Google Scholar
12 : Stigma as a barrier to seeking health care among military personnel with mental health problems. Epidemiologic Reviews 37:144–162, 2015Crossref, Medline, Google Scholar
13 : The impact of contact on stigmatizing attitudes toward people with mental illness. Journal of Mental Health 12:271–289, 2003Crossref, Google Scholar
14 : Three strategies for changing attributions about severe mental illness. Schizophrenia Bulletin 27:187–195, 2001Crossref, Medline, Google Scholar
15 : Reducing the stigma of mental illness. Journal of Mental Health Counseling 24:81–87, 2002Google Scholar
16 : The President’s New Freedom Commission: recommendations to transform mental health care in America. Psychiatric Services 54:1467–1474, 2003Link, Google Scholar
17 : Effectiveness of programs for reducing the stigma associated with mental disorders. a meta-analysis of randomized controlled trials. World Psychiatry 13:161–175, 2014Crossref, Medline, Google Scholar
18 : Stigma of mental illness: an interventional study to reduce its impact in the community. Indian Journal of Psychiatry 57:165–173, 2015Crossref, Medline, Google Scholar
19 : Evidence for effective interventions to reduce mental health related stigma and discrimination: narrative review. Lancet 387:1123–1132, 2016Crossref, Medline, Google Scholar
20 : Ingroup perception and responses to stigma among persons with mental illness. Acta Pschiatrica Scandinavica 120: 320–328, 2010Crossref, Google Scholar
21 : The paradox of self-stigma and mental illness. Clinical Psychology: Science and Practice 9:35–53, 2002Crossref, Google Scholar
22 : The impact of stigma on severe mental illness. Cognitive and Behavioral Practice 5:201–222, 1999Crossref, Google Scholar
23 : Stigmatization as an environmental risk in schizophrenia: a user perspective. Schizophrenia Bulletin 35:293–296, 2009Crossref, Medline, Google Scholar
24 : Internalized stigma predicts erosion of morale among psychiatric outpatients. Psychiatry Research 29:257–265, 2004Crossref, Google Scholar
25 : How clinical diagnosis might exacerbate the stigma of mental illness. Social Work 52:31–39, 2007Crossref, Medline, Google Scholar
26 : Stigma and mental illness: a review and critique. Journal of Mental Health 6:345–354, 1997Crossref, Google Scholar
27 : Self-stigma, self-esteem and age in persons with schizophrenia. International Psychogeriatrics 20:174–187, 2008Crossref, Medline, Google Scholar
28 : Pathways between internalized stigma and outcomes related to recovery in schizophrenia spectrum disorders. Psychiatric Services 59:1437–1442, 2008Link, Google Scholar
29 : Change in internalized stigma and social functioning among persons diagnosed with severe mental illness. Psychiatry Research 200:1032–1034, 2012Crossref, Medline, Google Scholar
30 : Meaning in life, insight and self-stigma among people with severe mental illness. Comprehensive Psychiatry 54:195–200, 2013Crossref, Google Scholar
31 : A modified labeling theory approach to mental disorders: an empirical assessment. American Sociological Review 54:400–423, 1989Crossref, Google Scholar
32 : Toward understanding the insight paradox: internalized stigma moderates the association between insight and social functioning, hope, and self-esteem among people with schizophrenia spectrum disorders. Schizophrenia Bulletin 33:192–199, 2007Crossref, Medline, Google Scholar
33 : Associations of multiple domains of self-esteem with four dimensions of stigma in schizophrenia. Schizophrenia Research 98:194–200, 2008Crossref, Medline, Google Scholar
34 : Self-stigma in people with mental illness. Schizophrenia Bulletin 33:1312–1318, 2007Crossref, Medline, Google Scholar
35 : Empirical studies of self-stigma reduction strategies: a critical review of the literature. Psychiatric Services 63:974–981, 2012Link, Google Scholar
36 : Interventions targeting mental health self-stigma: a review and comparison. Psychiatric Rehabilitation Journal 38:171–178, 2015Crossref, Medline, Google Scholar
37 : Narrative enhancement and cognitive therapy: a new group-based treatment for internalized stigma among persons with severe mental illness. International Journal of Group Psychotherapy 61:577–595, 2011Crossref, Medline, Google Scholar
38 : Reducing self-stigma by Coming Out Proud. American Journal of Public Health 103:794–800, 2013Crossref, Medline, Google Scholar
39 : Randomized controlled trial of the self-stigma reduction program among individuals with schizophrenia. Psychological Research 189:208–214, 2011Google Scholar
40 : Prejudice, social stress, and mental health in lesbian, gay, and bisexual populations: conceptual issues and research evidence. Psychological Bulletin 129:674–697, 2003Crossref, Medline, Google Scholar
41 : A stress-coping model of mental illness stigma: I. predictors of cognitive stress appraisal. Schizophrenia Research 110:59–64, 2009Crossref, Medline, Google Scholar
42 : Living Outside Mental Illness: Qualitative Studies of Recovery in Schizophrenia. New York, New York University Press, 2003Google Scholar
43 : Ending Self-Stigma: pilot evaluation of a new intervention to reduce internalized stigma among people with mental illnesses. Psychiatric Rehabilitation Journal 35:51–54, 2011Crossref, Medline, Google Scholar
44 : Group treatment of perceived stigma and self-esteem in schizophrenia: a waiting list trial of efficacy. Behavioural and Cognitive Psychotherapy 34:305–318, 2006Crossref, Google Scholar
45 : The evaluation of a short group programme to reduce self-stigma in people with serious and enduring mental health problems. Journal of Psychiatric and Mental Health Nursing 15:59–65, 2008Crossref, Medline, Google Scholar
46 : An anti-stigma approach to working with persons with severe mental disability: seeking real change through narrative change. Journal of Social Work Practice 23:35–47, 2009Crossref, Google Scholar
47 : Reducing self-stigma in substance abuse through acceptance and commitment therapy: model, manual development and pilot outcomes. Addiction Research and Theory 16:149–165, 2008Crossref, Medline, Google Scholar
48 : The impact of self-stigma and mutual help programs on the quality of life of people with serious mental illnesses. Community Mental Health Journal 49:1–6, 2013Crossref, Medline, Google Scholar
49 : Narrative Enhancement and Cognitive Therapy (NECT) effectiveness: a quasi-experimental study. Journal of Clinical Psychology 70:303–312, 2014Crossref, Medline, Google Scholar
50 : Efficacy of Coming Out Proud to reduce stigma’s impact among people with mental illness: pilot randomised controlled trial. British Journal of Psychiatry 204:391–397, 2014Crossref, Medline, Google Scholar
51 : The self-stigma of mental illness: implications for self-esteem and self-efficacy. Journal of Social and Clinical Psychology 25:875–884, 2006Crossref, Google Scholar
52 : Internalized Stigma of Mental Illness: psychometric properties of a new measure. Psychiatry Research 121:31–49, 2003Crossref, Medline, Google Scholar
53 : Psychiatric rehabilitation interventions: a review. International Review of Psychiatry 22:114–129, 2010Crossref, Medline, Google Scholar
54 Psychiatric rehabilitation program—adult; in Maryland Provider Manual. Linthicum, Md, Beacon Health Options, 2016. http://maryland.beaconhealthoptions.com/provider/manual/CH07_11-Psychiatric-Rehabilitation-Program-Adult.pdfGoogle Scholar
55 : Primer on the Psychiatric Rehabilitation Process. Boston, Boston University Center for Psychiatric Rehabilitation, 2009Google Scholar
56 Nemec P, Furlong-Norman K (eds): Best Practices in Psychiatric Rehabilitation. McLean, Va, Psychiatric Rehabilitation Association, 2014Google Scholar
57 : Assessing recovery of people with serious mental illness: development of a new scale. Psychiatric Services 63:48–53, 2012Link, Google Scholar
58 : Validation of a new General Self-Efficacy Scale. Organizational Research Methods 4:62–83, 2001Crossref, Google Scholar
59 : Measuring general self-efficacy: a comparison of three measures using item response theory. Educational and Psychological Measurement 66:1047–1063, 2006Crossref, Google Scholar
60 : Developing a measure of sense of belonging. Nursing Research 44:9–13, 1995Crossref, Medline, Google Scholar
61 : The effects of sense of belonging, social support, conflict, and loneliness on depression. Nursing Research 48:215–219, 1999Crossref, Medline, Google Scholar
62 : Sense of belonging as a buffer against depressive symptoms. Journal of the American Psychiatric Nurses Association 8:120–129, 2002Crossref, Google Scholar
63 : BSI Brief Symptom Inventory, Administration, Scoring, and Procedures Manual, 4th ed. Minneapolis, National Computer Systems, 1993Google Scholar
64 : A new instrument for measuring insight: the Beck Cognitive Insight Scale. Schizophrenia Research 68:319–329, 2004Crossref, Medline, Google Scholar
65 : Measuring cognitive insight in schizophrenia and bipolar disorder: a comparative study. BMC Psychiatry 7:71–80, 2007Crossref, Medline, Google Scholar
66 : Measuring cognitive insight in middle-aged and older patients with psychotic disorders. Schizophrenia Research 71:297–305, 2004Crossref, Medline, Google Scholar
67 : The Repeatable Battery for the Assessment of Neuropsychological Status (R-BANS): preliminary clinical validity. Journal of Clinical and Experimental Neuropsychology 20:310–319, 1998Crossref, Medline, Google Scholar
68 : Repeatable Battery for the Assessment of Neuropsychological Status as a screening test in schizophreniay: I. sensitivity, reliability, and validity. American Journal of Psychiatry 156:1944–1950, 1999Abstract, Google Scholar
69 Piantidosi S: Treatment allocation; in Clinical Trials: A Methodologic Perspective. New York, Wiley, 1997Google Scholar
70 : Controlling the false discovery rate: a practical and powerful approach to multiple testing. Journal of the Royal Statistical Society. Series B. Methodological 57:289–300, 1995Google Scholar
71 : Group-based treatment for internalized stigma among persons with severe mental illness: findings from a randomized controlled trial. Psychological Services 9:248–258, 2012Crossref, Medline, Google Scholar
72 : A randomized controlled trial of a peer-run antistigma photovoice intervention. Psychiatric Services 65:242–246, 2014Link, Google Scholar
73 : A randomized controlled trial of the efficacy of a stigma reduction intervention for HIV-infected women in the Deep South. AIDS Patient Care and STDs 28:489–498, 2014Crossref, Medline, Google Scholar
74 : Resilience: The Science of Mastering Life’s Greatest Challenges. Cambridge, United Kingdom, Cambridge University Press, 2012Crossref, Google Scholar