Schizophrenia Research 173 (2016) 45–53
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Therapeutic intervention for internalized stigma of severe mental illness: A systematic review and meta-analysis
Hector W.H. Tsang ⁎, S.C. Ching, K.H. Tang, H.T. Lam, Peggy Y.Y. Law, C.N. Wan Department of Rehabilitation Sciences, The Hong Kong Polytechnic University, Hong Kong
⁎ Corresponding author at: Neuropsychiatric Rehabilita Rehabilitation Sciences, the Hong Kong Polytechnic Un Hong Kong.
E-mail address: [email protected] (H.W.H. Ts
http://dx.doi.org/10.1016/j.schres.2016.02.013 0920-9964/© 2016 Published by Elsevier B.V.
a b s t r a c ta r t i c l e i n f o
Article history: Received 3 August 2015 Received in revised form 5 February 2016 Accepted 5 February 2016 Available online 9 March 2016
Objective: Internalized stigma can lead to pervasive negative effects among people with severe mental illness (SMI). Although prevalence of internalized stigma is high, there is a dearth of interventions and meanwhile a lack of evidence as to their effectiveness. This study aims at unraveling the existence of different therapeutic in- terventions and the effectiveness internalized stigma reduction in people with SMI via a systematic review and meta-analysis. Methods: Five electronic databases were searched. Studies were included if they (1) involved community or hos- pital based interventions on internalized stigma, (2) included participants who were given a diagnosis of SMI N 50%, and (3) were empirical and quantitative in nature. Results: Fourteen articles were selected for extensive review and five for meta-analysis. Nine studies showed sig- nificant decrease in internalized stigma and two showed sustainable effects. Meta-analysis showed that there was a small to moderate significant effect in therapeutic interventions (SMD = −0.43; p = 0.003). Among the intervention elements, four studies suggested a favorable effect of psychoeducation. Meta-analysis showed that there was small to moderate significant effect (SMD = −0.40; p = 0.001). Conclusion: Most internalized stigma reduction programs appear to be effective. This systematic review cannot make any recommendation on which intervention is more effective although psychoeducation seems most promising. More Randomized Controlled Trials (RCT) on particular intervention components using standard out- come measures are recommended in future studies.
© 2016 Published by Elsevier B.V.
Keywords: Psychoeducation Severe mental illness Self-stigma Internalized stigma Psychosocial intervention
Internalized stigma, also called self-stigma, is the process of adopting the public's stigmatizing opinions into own thoughts. Its prevalence among people with severe mental illness (SMI) stands at 41.7% (Gerlinger et al., 2013). Meta-analysis (Livingston and Boyd, 2010) found that high levels of internalized stigma were significantly correlat- ed with hopelessness, poorer self-esteem, reduced empowerment/mas- tery, and reduced self-efficacy. Internalized stigma significantly predicted poor social functioning over time (Fung et al., 2008; Tsang et al., 2010; Yanos et al., 2012a, 2012b). Higher internalized stigma was also associated with poorer quality of life on all the domains of WHOQOL-Brief (Mosanya et al., 2014). In addition, higher levels of in- ternalized stigma were significantly related to more severe psychiatric symptoms, poorer treatment adherence, and lower utilization of mental health services (Rüsch et al., 2009). Up to 20% of people may even dis- continue treatment prematurely due to internalized stigma (Corrigan,
tion Laboratory, Department of iversity, Hung Hom, Kowloon,
2014). Unfortunately, poorer treatment adherence was related to poorer treatment outcomes, more re-hospitalization, and increased health costs (Lacro et al., 2002). All of the above studies suggest that in- ternalized stigma has tremendous negative impact on functional out- comes of people with SMI and increases societal burden in taking care of these individuals.
Given the close negative relationship between internalized stigma and recovery (Yanos et al., 2008), interventions that attempt to reduce it among those with SMI so as to improve their prospect for recovery are important both in psychiatric rehabilitation and community integration.
Although a conceptual framework (Hayward and Bright, 1997) on internalized stigma reduction is available, there is a dearth of interven- tions and meanwhile a lack of evidence as to their effectiveness. The programs usually consist of a combination of different elements of inter- vention such as psychoeducation, cognitive behavioral therapy, and so- cial skills training. Currently there are no widely accepted treatment protocols on internalized stigma reduction. Numerous studies on inter- nalized stigma were published in the past few years. There are a few reviews (e.g., Mittal et al., 2012) on this area. But no attempt on meta- analysis has ever been conducted. To fill the knowledge gap, this systematic review and meta-analytical study focuses on studies which
46 H.W.H. Tsang et al. / Schizophrenia Research 173 (2016) 45–53
are randomized control trials, clinical trials, or experimental trials in na- ture and reported therapeutic interventions to reduce internalized stig- ma in people with SMI.
The PRISMA Statement Criteria (Liberati et al., 2009) was adopted throughout the review to report our results.
2.1. Data sources
Systematic search was done to locate studies from PubMed, PsychInfo (1806-Present), SCI (1970-Present), SSCI (1970-Present), and Scopus on October 3rd, 2014. The search terms were generated based on the four types of eligibility criteria mentioned above. They are presented in Supplementary Appendix 1. In addition, emails were sent to a few prominent researchers on mental illness stigma that had close collabo- rations with the first author. One replied and suggested an in press arti- cle that we missed in the systematic search and eventually included in the systematic review.
2.2. Study selection
Studies were included if the following criteria were met: (1) studies: randomized clinical trials, clinical trials, and experimental studies studying internalized stigma reduction in people with SMI which was operationally defined as mental illness having a chronic course and leading to significant social and occupational dysfunction such as Schizophrenia, Psychotic disorder, Psychosis, Delusional disorder, Schizoaffective, Bipolar disorder and Personality disorder; (2) partici- pants: more than 50% studies participants were given a diagnosis of SMI,; (3) intervention: studies that compared community or hospital based therapeutic interventions with conventional treatment; (4) out- come measures: studies that used validated instruments for screening and assessing the severity of internalized stigma. Qualitative studies and literature reviews were excluded.
There were no limitations in the follow up period. Search was re- stricted to publications in English but there was no limit to the years of publication.
Two reviewers independently conducted the search in five electron- ic databases. The results were screened on titles and abstracts by all re- viewers independently. Disagreements were resolved via discussion between reviewers with the facilitation of the corresponding author.
2.3. Data extraction and analysis
Data extracted from selected studies included: (1) characteristics of the study (e.g., aims, study design, intervention setting, participants' characteristics, randomization procedures, inclusion and exclusion criteria, etc.); (2) outcome measures (e.g., outcome measure instru- ments, assessment period, dropout rate, etc.); (3) interventions (e.g., intervention approach, trainers' quality, etc.); and (4) study results (e.g., significant effects, sustainability, etc.). To ensure accuracy, five re- viewers assessed two to three studies independently and the data were cross-checked by another reviewer. Also, emails were sent to the authors for clarifying missing or unclear data.
2.4. Assessment of methodological quality
The methodological risk of bias for each trial was evaluated using the risk of bias table (Higgins and Green, 2011). Five reviewers worked in- dependently to determine the adequacy of randomization sequence, blinding of patients and assessors, and the extent of follow up. Disagree- ments were resolved in discussion.
2.5. Data synthesis and analysis
Review Manager 5.3, developed by the Cochrane Collaboration (2014), was used for meta-analysis of the results of included studies. The outcomes across the trials were expressed in Cohen's D. Standard- ized mean differences (SMDs) were calculated for the pooled effects. SMDs were interpreted using the “rule of thumb”: 0.2 represents a small effect, 0.5 represents a moderate effect, and 0.8 represents a large effect (Cohen, 1988). Heterogeneity was tested with an X2 test. I2
was also reported. I2 statistic N75% was considered to have high degree of heterogeneity while I2 statistic of 25%–50% was considered to have a low degree of heterogeneity (Higgins et al., 2003). We used random- effects model for heterogeneity (p b 0.05) and a fixed effects model for heterogeneity (p N 0.05). Sensitivity analyses were conducted with psychoeducation group and professional-led or peer-led intervention. Publication bias was examined using funnel plot. A value of p b 0.05 was considered statistically significant.
Since the outcome of internalized stigma reduction program was assessed by more than one tool in a trial, only the primary outcome (i.e., internalized stigma reduction) was included in the meta-analysis. Emails were sent to corresponding authors for clarifying missing data.
3.1. Results of literature search
Eight hundred nineteen articles were retrieved. Three hundred eighty duplicated and 421 irrelevant articles were excluded after initial screening of title and abstract. Full reports of 22 studies were acquired and eight were further excluded for the following reasons: (1) not a clinical trial, (2) b50% participants given diagnoses of SMI, (3) explor- atory research, and (4) duplicated studies (Fig. 1). (See Figs. 2– 4.)
3.2. Description of included studies
Fourteen studies, including seven RCTs (Corrigan et al., 2015; Çuhadar and Çam, 2014; Fung et al., 2011; McCay et al., 2007; Russinova et al., 2014; Rüsch et al., 2014; Yanos et al., 2012a, 2012b), three controlled clinical trials (Roe et al., 2014; Sibitz et al., 2013; Uchino et al., 2012), and four uncontrolled studies without a control group (Costain et al., 2014; Lucksted et al., 2011; Lysaker et al., 2012; Staring et al., 2013) met inclusion criteria. These studies were originated from nine countries across Americas, Europe, and Asia. Most programs adopted psychoeducation approach with inclusion of a combination of other components such as CBT, social skills training, goal attainment program, and narrative therapy. The duration of these programs ranged from 10 to 40 sessions (Russinova et al., 2014; Sibitz et al., 2013). Other than the above more conventional therapeutic elements, there were two evolving innovative interventions. Both of them were peer led group interventions. One was Coming Out Proud (Corrigan et al., 2015; Rüsch et al., 2014). It consisted of group discussion focusing on topics of secrecy and disclosure of own mental illness. The other was Photovoice (Russinova et al., 2014). In the group, individuals photo- graph objects or events in their daily lives were used to generate narra- tives for group discussion. The characteristics of included studies are summarized in Table 1.
Participants were given a diagnosis of schizophrenia, schizophrenia spectrum disorder, bipolar disorder, or major mood disorder. One study included patients with schizophrenia only (Fung et al., 2011) and one included patients with bipolar disorder only (Çuhadar and Çam, 2014). Participants were mostly given a diagnosis by psychiatrists according to DSM IV or ICD-10 (Yanos et al., 2012a, 2012b). Two studies recruited participants according to their self-reported diagnosis. Only one study reported the use of the structured interview procedure in ver- ifying the diagnosis of the research participants (Lysaker et al., 2012).
Fig. 1. Selection process of included studies.
47H.W.H. Tsang et al. / Schizophrenia Research 173 (2016) 45–53
Sample size of the studies varied from 21 to 205 participants, with a total of 1131 participants including 879 participants in the experimental groups and 452 participants in the control groups.
Controlled group design was employed in ten studies. Treatment as usual (TAU) was applied in seven studies (McCay et al., 2007; Roe et al., 2014; Russinova et al., 2014; Rüsch et al., 2014; Sibitz et al., 2013; Uchino et al., 2012; Yanos et al., 2012a, 2012b), conventional treatment group (i.e., newspaper reading) in one study (Fung et al., 2011), no ac- tive treatment in one study (Çuhadar and Çam, 2014), and waitlist con- trol in one study (Corrigan et al., 2015). All studies provided information
Fig. 2. A forest plot of the meta-analysis of three studies comp
on the duration of treatment in patient intervention groups. Thirteen in- cluded studies examined the effect of internalized stigma reduction and one examined the effect of negative symptoms immediately following the internalized stigma reduction intervention. In addition, seven stud- ies (Corrigan et al., 2015; Costain et al., 2014; Fung et al., 2011; Lysaker et al., 2012; Russinova et al., 2014; Rüsch et al., 2014; Yanos et al., 2012a, 2012b) examined the sustainability of intervention effect after follow- up periods ranging from three weeks to six months.
Regarding outcome measures, internalized stigma was assessed as the primary outcome in all the included studies except one which
aring psychoeducation to TAU for changes in ISMI score.
Fig. 3. A forest plot of the meta-analysis of three studies comparing self-stigma reduction program to TAU for changes in ISMI total score.
48 H.W.H. Tsang et al. / Schizophrenia Research 173 (2016) 45–53
treated internalized stigma as a mediator of dysfunctional beliefs (Staring et al., 2013). The internalized stigma scales applied in the stud- ies included Internalized Stigma of Mental Illness (ISMI) (Costain et al., 2014; Çuhadar and Çam, 2014; Lucksted et al., 2011; Lysaker et al., 2012; Roe et al., 2014; Russinova et al., 2014; Rüsch et al., 2014; Sibitz et al., 2013; Yanos et al., 2012a, 2012b), short form of Self-stigma of Mental Illness Scale (SSMIS) (Corrigan et al., 2015), Chinese Self- stigma of Mental Illness Scale (CSSMIS) (Fung et al., 2011), Link Per- ceived Stigma Questionnaire (LPSQ) (McCay et al., 2007), and Japanese version of Social Distance Scale (SDS-J) (Uchino et al., 2012). Other outcome measurements were also applied to assess the interven- tion effect, for examples, the Positive and Negative Syndrome Scale (PANSS) and the Rosenberg Self-Esteem Scale (RSES). These outcome measures varied substantially across studies.
3.3. Results of individual studies
Nine studies reported significant internalized stigma reduction. Studies that reported significant effects of therapeutic intervention other than internalized stigma reduction are shown in Table 1. Seven studies had follow-up periods but only two studies showed sustainable effects for one to three months (Corrigan et al., 2015; Russinova et al., 2014).
3.4. Effects of intervention approaches on internalized stigma
Meta-analysis was performed among studies which used similar treatment approaches (e.g., psychoeducation, CBT, etc.) and similar out- come measures. Following this, six controlled studies were identified to use ISMI as outcome measure. However, one of the studies was eventu- ally excluded (Çuhadar and Çam, 2014) because it used the Turkish ver- sion of ISMI which was not comparable to the original version. Consequently, five trials were included in meta-analysis (Roe et al., 2014; Russinova et al., 2014; Rüsch et al., 2014; Sibitz et al., 2013; Yanos et al., 2012a, 2012b).
3.4.1. Comparison 1: psychoeducation element Four out of seven trials which contained psychoeducation were
RCTs. Two trials indicated significant effects when compared with con- trolled group with no active treatment (Çuhadar and Çam, 2014) and TAU (Russinova et al., 2014). The former focused on patients with bipo- lar disorder and the latter focused on patients with schizophrenia
Fig. 4. A forest plot of the meta-analysis of four studies comparing self-stigma reduct
spectrum disorder and bipolar disorder. ISMI total scores from two RCTs and one controlled trial were pooled and the pooled SMD was −0.40 [−0.64, −0.16], indicating a small-moderate effect (p = 0.001). There was a low degree of heterogeneity (I2 = 17%).
3.4.2. Comparison 2: cognitive behavioral therapy element Two out of five trials containing CBT element were RCTs. Both trials
suggested no intergroup difference when compared to newspaper read- ing group (Fung et al., 2011) and TAU (Yanos et al., 2012a, 2012b). The former focused on patients with schizophrenia and the latter focused on patients with schizophrenia, schizoaffective, and bipolar disorder.
3.4.3. Comparison 3: group discussion element Three out of the four trials which had group discussion element were
RCTs. These RCTs included innovative interventions, namely photovoice (Russinova et al., 2014) and Coming Out Proud (COP) (Corrigan et al., 2015; Russinova et al., 2014). Photovoice was a discussion group on the selected photographs regarding to stigma while COP was a peer- led group intervention which empowered people with mental illness to decide on secrecy and disclosure of illness. When compared to TAU, the trial on photovoice indicated significant effect (Russinova et al., 2014). For COP, one of them suggested significant effect on reduction in internalized stigma when compared to waitlist control (Corrigan et al., 2015). Another trial, however, suggested no group x time effect (Rüsch et al., 2014). All of them focused on patients with serious mental illness.
3.4.4. Comparison 4: social skills training element One out of two trials that contained social skills training element was
RCT. It suggested no intergroup difference on patients with schizophre- nia when compared to newspaper reading group (Fung et al., 2011).
3.4.5. Comparison 5: narrative enhancement and cognitive therapy (NECT) element
This approach focused on the process of telling and sharing personal narratives about their experience of mental illness. Two out of three tri- als containing NECT element were RCTs. When compared to TAU, one trial indicated significant effect (Russinova et al., 2014) while another suggested no intergroup difference (Yanos et al., 2012a, 2012b). Both focused on patients with schizophrenia spectrum disorder and bipolar disorder. Moreover, the former focused on depressive disorder.
ion program to TAU for changes in average of the sum of sub-scales 1–4 of ISMI.
49H.W.H. Tsang et al. / Schizophrenia Research 173 (2016) 45–53
3.4.6. Other intervention approaches There was one RCT which reported the effect of group psychothera-
py on internalized stigma reduction among individuals with schizo- phrenia spectrum disorder (McCay et al., 2007). No intergroup difference was reported. The other two trials were uncontrolled clinical trials involving genetic counseling (Costain et al., 2014) and vocational rehabilitation (Lysaker et al., 2012).
Five studies were eligible for meta-analysis (Roe et al., 2014; Russinova et al., 2014; Rüsch et al., 2014; Sibitz et al., 2013; Yanos et al., 2012a, 2012b). ISMI included 5 subscales: alienation, stereotype endorsement, discrimination experience, social withdrawal, and stigma resistance. The total scores from three psychosocial interventions were pooled and the pooled SMD was −0.43 [−0.72, −0.14] which indicated a small-moderate effect (p = 0.003) of psychosocial interventions. There was a low degree of heterogeneity (I2 = 22%). As two studies ex- cluded the 5th subscale (i.e., stigma resistance) of ISMI score (Roe et al., 2014; Rüsch et al., 2014), we pooled the ISMI scores by taking average of the sum of sub-scales 1–4 from four studies. Similar to the result of total ISMI score, it indicated a small to moderate effect (SMD = −0.33 [−0.54, −0.12]; p = 0.002). The results from both professional led and peer led psychosocial intervention were pooled. Result of meta- analysis showed moderate significant effect professional led interven- tion (SMD = −0.51 [−0.79, −0.23]; p b 0.001) but not peer led intervention.
Quality assessment for each trial is presented in Table 2. None of the studies met all of the criteria for high quality. Inclusion and exclusion criteria were clearly defined except one trial (Roe et al., 2014). Seven studies were RCTs with randomization method reported clearly except one study (Corrigan et al., 2015). Common problems included inade- quate blinding of patients and outcome assessors, lack of information on sample size estimation, and intention-to-treat analyses not applied.
This paper presents the most updated systematic review and meta- analysis on internalized stigma reduction. Half of the reviewed studies were published from 2013 to 2015 which were not included in earlier reviews. The studies were conducted in nine countries across America, Europe, and Asia which suggest cross-cultural some degree of generaliz- ability of the results.
As pointed out in the introduction, programs to reduce internalized stigma consist of many components. Our review reveals the beneficial effects of the psychoeducation component in internalized stigma reduc- tion when compared to TAU. For COP and NECT, effects were inconsis- tent. For CBT and social skills training, RCTs reported no significant effects.
Interpretation and generalization of results should be cautiously treated due to limited number and methodological problems of studies. Because of bias among studies, the results of meta-analysis should also be read with caution. The studies used different diagnostic criteria for participants, including self-reported and diagnoses given by psychia- trists. Moreover, the proportion of participants with SMI was slightly less than 50% in the control group in one of the studies (Rüsch et al., 2014). Both of these factors limit the comparability between results for the participants with SMI in the studies. The baseline internalized stigma level among participants varied, with mean total scores of ISMI at baseline ranging from 1.63 to 2.23 out of 4.0. Although there does not have any evidence, this variation in baseline level of internalized stigma might affect the effectiveness of programs and hence the compa- rability of effectiveness between different studies. Some of the studies only presented group × time effect or main effect. As intergroup differ- ence was not presented in all studies, the significance of between group differences was unclear. Randomization was involved only in seven
studies. Twelve trials did not adhere to the intention-to-treat principle. These two factors lead to possible over-estimation of the treatment ef- fect. There is also a possibility of publication bias. Among the limited number of studies, different combinations of intervention approaches and outcome measurements were adopted. It is therefore hard to draw an accurate conclusion based on our meta-analysis. Finally, as few trials involved post-intervention follow up or the follow-up period was short, it is difficult to make conclusion on the sustainability of the interventions.
To date, a variety of interventions are available but there is a lack of commonly accepted framework on internalized stigma reduction. The framework proposed by Hayward and Bright (1997) adopted CBT as the main intervention with the role of psychosocial factors and self- management skills also taken into consideration.
There are some implications for further research. Our meta-analysis shows that psychoeducation is common among the studies and seems to have significant effect. However, among these three studies, only two (Roe et al., 2014; Russinova et al., 2014) mentioned clearly the con- tent of psychoeducation, which included understanding of stigma and strategies to cope with stigma. Given that psychoeducation was not the sole intervention in these studies and the follow-up was short, it is difficult to make a solid recommendation as to the optimal duration of psychoeducation program. It is however suggested that future studies should focus on studying the effectiveness of psychoeducation as the only intervention with longer follow up period to evaluate the sustain- ability of its outcome. As the content of psychoeducation varies, it is also necessary to study the specific content that actually contributes to its ef- fectiveness. Our systematic review found that there were only limited studies meeting our inclusion criteria. Most studies had numerous lim- itations in measurement tools and methodological qualities. These added to our difficulties in making conclusion based on our results. Fol- lowing this, we suggest the use of common outcome measures among studies such as ISMI, and improved methodological qualities of future studies to facilitate similar reviews in the future.
Two evolving innovative interventions, Coming Out Proud and Photovoice, deserve more attention. The results from trials of COP were inconclusive. Yet the study on Photovoice had a significant effect in reduction of internalized stigma and was shown sustainable in a pe- riod of three months. As new and promising interventions, more re- search on their effectiveness is needed. As both of these two innovative interventions involve peer-led activities, the therapeutic values of this type of activities should be more carefully discerned.
Other than research, this study has some implications for clinical practice. First, the serious consequences of leaving internalized stigma untreated should be brought to the awareness of clinicians. Second, in- ternalized stigma reduction programs have to be delivered by health and rehabilitation professionals. Relevant training courses should be made available to those professionals who show interest in putting these programs into their clinical and rehabilitation practice. Third, if re- courses are limited, practitioners should be recommended to select those programs with a psychoeducation element because it is found to be the most evidence-based in reducing internalized stigma based on existing evidence. Finally, clinicians should be encouraged to explore more innovative approaches to counteract internalized stigma because existing interventions are limited and their evidence is not entirely compelling.
Most programs we reviewed showed significant effects in reducing internalized stigma. As an emerging area, studies were still limited. The programs are implemented by professionals including clinicians, psychiatric nurse, social worker, and non-professionals who are trained according to the program manuals. Among different intervention ap- proaches, psychoeducation seems to be more promising and two novel techniques (i.e., coming out proud and photovoice) deserve
Table 1 Summary of the effects of self-stigma reduction program.
Study Participants' diagnosis
Intervention Outcomes Result
Design; Country Inclusion Sample Size (Pre−/Post)
Approach (frequency) Control Duration of follow-up
Corrigan et al., 2015
RCT; U.S. People with serious mental illness who have life disabilities
EG: 107/51 CG: 98/75
Coming Out Proud (COP) (2 h session, 3 sessions, over 3 days or 1 day long group)
Waitlist 1 month 1. (Short form) SSMIS 2. Stigma Stress Scale 3. CES-D
Effect in subscales under SSMIS: 1. Group × time: no significant effect in change in ‘harm” comparing COP group to control group. Significant reduction in “harm” from pre to posttest (p b 0.01) and pre to follow-up for COP group. (p b 0.05) 2. Group × time: significant interaction for change in applying stereotypes to self across groups (F(2,98) = 3.74, p b .05). Significant reduction in applying stereotypes to self from pre to posttest (p b 0.05) and at one month follow-up (p b 0.05) 3. Group × time: significant interaction for agreeing on stereotype 4. Group × time: no significant change in “awareness” Stigma Stress Scale 1. Group × time: significant in stigma-related harm 2. Group × time: no significant for resources to cope with stigma Depression 1. Group × gender × time: significant difference in CES-D
Costain et al., 2014
Uncontrolled clinical trial; Canada
Schizophrenia Schizoaffective disorder
25/22 (21 for FU)
Genetic counseling (1 session with mean 46.4 [SD 11.1] minutes)
NA 7 weeks 1. ISMI 1. Decrease in self-stigma (p = 0.0111) 2. Reduction in self-blame (p = 0.0401) 3. Improvement in understanding of the empiric recurrence risk (p = 0.0090) 4. Reduction in associated concern (p = 0.0020) 5. Significant increase in subjective (p …
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The Stigma of Depression: Black American Experiences
Rosalyn Denise Campbell & Orion Mowbray
To cite this article: Rosalyn Denise Campbell & Orion Mowbray (2016) The Stigma of Depression: Black American Experiences, Journal of Ethnic & Cultural Diversity in Social Work, 25:4, 253-269, DOI: 10.1080/15313204.2016.1187101
To link to this article: https://doi.org/10.1080/15313204.2016.1187101
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The Stigma of Depression: Black American Experiences Rosalyn Denise Campbell and Orion Mowbray
School of Social Work, University of Georgia, Athens, GA, USA
ABSTRACT While stigma is a large barrier for all racial/ethnic groups, research suggests that stigma has a particularly strong impact on the help-seeking behaviors and service use patterns of Black Americans. In this qualitative study, in-depth, semi-structured interviews were conducted with 17 Black American men and women, ages 21 to 57, who have experienced depression. Several thematic categories emerged: (a) race/culture-specific aspects of dealing with depression; (b) the impact of the diag- nosis on depression sufferers; and (c) pushing back against the stigma. These findings highlight the impact of sociocultural factors like stigma on illness experiences, help-seeking beha- viors, and service use patterns among Black Americans. They also offer targets for intervention to increase service rates and improve care for Black Americans with depression.
KEYWORDS Black Americans; depression; illness experiences; mental health and illness; stigma
Individuals with identities not considered “normal” in society often experience stigma. Stigma can be defined simply as “an attribute that is deeply discredit- ing” (Goffman, 1963, p. 3). It is a characteristic, behavior, or identity seen as “incongruous with our stereotype of what a given type of individual should be” (Goffman, 1963, p. 3). Stigmatizing behavior from others can take many forms, including social distancing and discrimination. Individuals might also experi- ence a reduction or loss of social status (Link & Phelan, 2001).
Stigma is a problem common to many who have suffered from mental illness. In many ways, it can exacerbate their distress (Yang et al., 2007). Even though this experience of stigma is universal, the impact and implications can be different, and arguably worse, for racial/ethnic minorities (Bailey, Blackmon, & Stevens, 2009; Mishra, Lucksted, Gioia, Barnet, & Baquet, 2009; United States Department of Health and Human Services [USDHHS], 2001). Historically, people of color have been stigmatized and marginalized because of their racial and/or ethnic identity. Adding another stigmatizing identity in the form of a mental illness can have serious reper- cussions for people of color (Bolden &Wicks, 2005; Conner, Copeland, et al., 2010; Gary, 2005; Matthews, Corrigan, Smith, & Aranda, 2006).
CONTACT Rosalyn Denise Campbell [email protected] University of Georgia, School of Social Work, 279 Williams Street, Room 346, Athens, GA 30602, USA.
JOURNAL OF ETHNIC & CULTURAL DIVERSITY IN SOCIAL WORK 2016, VOL. 25, NO. 4, 253–269 http://dx.doi.org/10.1080/15313204.2016.1187101
© 2016 Taylor & Francis
Although depression and stigma have been investigated a great deal, research focusing on the stigma experienced by Black depression sufferers is sparse by comparison. In this study, we address this gap in the literature through interviews with 17 Black American men and women about their experiences with depression and the stigma they have experienced. Through these interviews, we can understand more about how stigma is understood, experienced, and combated in Black communities as well as how stigma can operate as a barrier for those seeking help for depression.
Stigma in Black communities
Perhaps one of the largest social barriers studied in mental health service use research is stigma. Actual experiences or the fear of being stigmatized keep a large number of people who might benefit from treatment out of services (Anglin, Link, & Phelan, 2006; Corrigan, 2004; USDHHS, 1999). Although stigma is a large barrier for all racial/ethnic groups, research has found that stigma is more of a factor in the illness and treatment experience of Black Americans than it is for many other racial/ethnic groups (Anglin et al., 2006; Bailey et al., 2009; Cruz, Pincus, Harman, Reynolds III, & Post, 2008; Rusch, Kanter, Manos, & Weeks, 2008). Some Black Americans have discussed the existence of social proscriptions to keep matters private and not to discuss their struggles with others (Carpenter-Song et al., 2010; Conner, Copeland, et al., 2010). Others believe that they will be treated negatively, discriminated against, or socially excluded if others find out about their mental health problems (Carpenter-Song et al., 2010; Mishra et al., 2009). Regardless of the type experienced or feared, stigma stops a large number of Black Americans from seeking treatment.
Many Black Americans believe that the stigma attached to mental illness is felt more strongly in Black communities (Bailey et al., 2009; Conner, Copeland, et al., 2010; Moran, 2004). Individuals whose mental illness is known by others have reported experiencing stigmatizing attitudes and behaviors from people in their communities (Conner, Lee, et al., 2010). Similarly, individuals whose mental illness is not known by others have expressed reluctance to reveal that they have mental disorders for fear that they will be subjected to ridicule and rejection (Carpenter-Song et al., 2010; Mishra et al., 2009). A desire to avoid being labeled as “crazy” or subjected to social exclusion can cause some to hide their illness and/or the fact that they seek treatment (Black, Gitlin, & Burke, 2011; Conner, Lee, et al., 2010; Matthews et al., 2006; Mishra et al., 2009). For others, it might cause them to delay seeking services or avoid treatment altogether (Alvidrez, Snowden, & Kaiser, 2008; Black et al., 2011; Calloway, 2006; Mishra et al., 2009).
Some believe that stigma is stronger in Black communities because indi- viduals simply lack information about mental disorders and treatment
254 R. D. CAMPBELL AND O. MOWBRAY
(Conner, Copeland, et al., 2010). However, even after interventions to edu- cate Black Americans about mental illness and reduce stigma, stigmatizing views can continue to be held and in some cases strengthened (Rao, Feinglass, & Corrigan, 2007). The precarious social status of Black Americans in the United States might contribute to stronger stigmatizing attitudes and behaviors in Black communities. Problems with mental illness are viewed as “reduc[ing] one’s social standing and life opportunities” (Matthews et al., 2006, p. 262). For groups like Black Americans who occupy statuses that have historically pushed them to the margins of many social spaces, adopting another potentially stigmatizing identity is not something done easily because it can come with serious threats to one’s status or reputation (Black et al., 2011; Bolden & Wicks, 2005; Conner, Copeland, et al., 2010; Gary, 2005; Matthews et al., 2006). Some research has found that African-Americans more than Latinos or Whites desire larger physical and social distance from those with mental illness (Rao et al., 2007). It might be that Black Americans who do not suffer from mental illness fear losing their tenuous status because they are associated with someone who is ill (Abdullah & Brown, 2011; Rao et al., 2007).
The fear of being found guilty by association can also produce stigmatizing attitudes and behaviors from family members of those diagnosed with mental illness. Many Black Americans suffering from mental illness have expressed fears of experiencing stigmatizing attitudes or social exclusion from family and friends when experiencing a mental health problem (Alvidrez et al., 2008; Cruz et al., 2008).
However, this is not the experience of all. For some Black Americans, having a serious mental illness does not bring familial exclusion. In their study of ethno-cultural variations in the experience and meaning of mental illness, Carpenter-Song and colleagues (2010) found that Blacks were the least likely of the racial/ethnic groups studied to believe that their family would be disappointed in them because of their illness.
Specific study aims
Most of the research on stigma and mental illness focuses on mental illness in general or on mental illnesses other than depression. A small subset of that research examines the experiences of Black Americans, and only a few of those have examined depression and stigma. We sought to add to this body of research and designed a study that would investigate, among other topics, the stigma attached to depression and mental health service use among Black Americans. Through qualitative interviews, we explored Black Americans’ experiences with depression, including experiences of stigma in Black com- munities. Although we highlight the experiences of stigma among Black sufferers of depression, we do not argue that stigma itself is unique to
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Black Americans who are depressed. Rather, we seek to explore how the stigma Blacks encounter and experience is unique. It is important to recog- nize and understand these differences when designing and implementing interventions targeting Black Americans.
Gathering information on this topic can be accomplished through a number of means. For this study, the first author and primary researcher utilized the qualitative interviewing approach. Intensive interviews allowed her to (a) move beyond the surface of experiences and extract more details; (b) explore various statements and/or topics; and (c) ask about feelings, thoughts, perceptions, and behaviors (Charmaz, 2006). This approach was also useful because of the population being studied. Research has shown that when collecting data from African-American research participants, this group prefers in-person, face-to-face interviews as opposed to telephone or mail surveys (Burlew, 2003). Conducting interviews also gives the researcher an opportunity to explore the richness of the ethnic/racial minority experi- ence and illuminate some of its nuances that, as a method, quantitative analysis is not designed to capture. Particularly in health research, the qualitative approach provides more detailed information about the complex experience of health and nature of health behaviors (Stewart, Makwarimba, Barnfather, Letourneau, & Neufeld, 2008).
For this study, the first author wanted to speak with individuals 18 years of age or older who identified as Black or African-American and responded “yes” to at least one of the following: (a) has felt sad, empty, or depressed for two weeks or more during their life; (b) has been told by a doctor, pastor, coworker, family member, or friend that they were depressed; or (c) has seen a doctor, counsel- lor, or mental health professional for depression. A total of 17 Black American men and women from a Midwestern community were recruited using flyers posted at a variety of locations including local colleges and universities, libraries, area churches, social service agencies, doctors’ offices, and outpatient mental health organizations. As shown in Table 1, the majority of the 17 parti- cipants were women (N = 13). Participants’ ages ranged from 21 years of age to 57, with the majority of participants falling in the 22–29 and 40–49 age ranges. Nine participants were diagnosed with major depression by a mental health professional, three were diagnosed by a medical physician, and five were self- diagnosed. Collectively, the study participants had achieved a high level of education, with five completing or pursuing post-bachelor’s education. Two participants were college graduates, six reported completing some college, three
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finished high school or received a GED, and one participant, the eldest in the study, did not graduate high school, finishing the eleventh grade.
Participants were recruited during the summers of 2007 and 2008. No compensation was offered during the summer 2007 recruitment period,
Table 1. Participant characteristics.
Name Age (in years) Gender Employment Status Level of Education Method of Diagnosis
Carol 24 Female Employed Completed high school; currenta undergraduate student
Denise 26 Female Student Earned a bachelor’s degree; currenta
Clinically diagnosed (by a friend who was a mental health professional
Derrick 40s Male Employed Earned a bachelor’s degree
Clinically diagnosed by a mental health professional
Devon 32 Female Employed Some college Self-diagnosed Donna 37 Female Unemployed Earned a bachelor’s
degree; career-specific training
Doris 57 Female Unemployed; collects Supplemental Security Income (SSI)
Completed the 11th grade
Clinically diagnosed by a physician
Drucilla 49 Female Employed Completed high school Clinically diagnosed by a physician
Elisa 28 Female Student Earned a master’s degree; currenta graduate student
Clinically diagnosed by a mental health professional
Janelle 27 Female Employed Earned a master’s degree Self-diagnosed Kamille 26 Female Student Earned a master’s degree;
currenta graduate student
Clinically diagnosed by a mental health professional
Keith 55 Male Unemployed Earned a bachelor’s degree
Clinically diagnosed by a physician
Laura 21 Female Student Completed high school; currenta undergraduate student
Clinically diagnosed by a mental health professional
Margie 49 Female Employed Earned a professional graduate degree; currenta graduate student
Clinically diagnosed by a mental health professional
Miller 43 Male Employed GED Clinically diagnosed by a mental health professional
Richard 39 Male Unemployed Some college Clinically diagnosed by a mental health professional
Shalesa 35 Female Student Earned a master’s degree; currenta graduate student
Clinically diagnosed by a mental health professional
Sidney 28 Female Employed Completed high school; currenta undergraduate student
aStatus at the time of study participation.
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which included eight college-educated and/or professional women. During the second recruitment period, five women and four men were recruited and completed interviews. These participants were given a $10 gift card to a grocery or discount store for their participation. The first author conducted these semi-structured, open-ended interviews in locations of the respondents’ choosing and included respondents’ homes and local coffee shops. The interviews were conducted using an interview guide designed to have parti- cipants reflect on their experience(s) with depression, the cultural messages they received regarding depression, and how those messages shaped their thoughts about depression and help-seeking. Interviews were audio-recorded with the participants’ permission and ranged from 30 minutes to 2.5 hours. All participants’ names were changed to maintain confidentiality.
The interviews were transcribed verbatim by the first author, trained research assistant, or professional transcriptionist. Many of the “ums,” “likes,” and “you knows” were removed when appropriate to improve the clarity of the message. Even though the interviews yielded a wealth of information about Black Americans’ experience with depression, the first author wanted to focus on the topic of stigma.
The first author performed a thematic analysis on the participants’ tran- scripts to detect relevant themes. This approach, as outlined by Braun and Clarke (2006), was selected because it views analysis as a process that allows the researcher to identify, refine, and report themes within the data, similar to the grounded theory approach developed by Glaser and Strauss (1967). However, grounded theory insists that the analysis contribute heavily to theory development which may not be the desired goal or outcome of some qualitative research. A simpler “thematic analysis means researchers need not subscribe to the implicit theoretical commitments of grounded theory if they do not wish to produce a fully worked-up grounded-theory analysis” (Braun & Clarke, 2006, p. 8). For a topic as understudied as Black American mental health, the freedom to simply explore the richness of the data without pointedly contributing to the theory construction or reframing is welcomed and refreshing.
While describing thematic analysis as “simple,” we do not mean to imply that this method is easy or plain. According to Braun and Clarke (2006), a number of factors must be considered: (a) Will the analysis be a “rich description of the data set or a detailed account of one particular aspect” (p. 11); (b) Will one be using an inductive or deductive approach to the analysis? (c) Is the level of analysis explicit or interpretive? (d) Is the researcher using an essentialist or a constructionist epistemology? Even though a number of topics were discussed during these qualitative interviews,
258 R. D. CAMPBELL AND O. MOWBRAY
the thematic analysis focused on one particular aspect of the data: stigma— how it was encountered, experienced, and understood by participants. The first author approached the data inductively, allowing the themes to come from the data itself, not fitting the data into pre-set categories. The level of analysis was more interpretive in that the goal was to “to identify or examine the underlying ideas, assumptions, and conceptualizations—and ideologies— that are theorized as shaping or informing the semantic content of the data” (Braun & Clarke, 2006, p. 13). In other words, in examining the experiences of stigma, the first author wanted to better understand what informed how participants interpreted, made sense of, and responded to these experiences. The first author also made sure to bring a constructivist orientation to this work, an epistemology that “does not seek to focus on motivation or indivi- dual psychologies, but instead seeks to theorize the socio-cultural contexts, and structural conditions, that enable the individual accounts that are pro- vided” (Braun & Clarke, 2006, p. 14).
The first author moved through the analysis in the six phases of analysis as outlined by Braun and Clarke (2006):
(1) Familiarize yourself with the data and formulate some ideas and thoughts about the data.
(2) Generate initial codes. (3) Sort through the codes, searching for and then constructing themes. (4) Review the themes, selecting those that best reflect the data. (5) “Define and refine” themes, “identifying the ‘essence’ of what each
theme is about (as well as the themes overall), and determining what aspect of the data each theme captures” (p. 22).
(6) Write the results section.
After becoming familiar with the data and focusing keenly on the partici- pants’ experiences, particularly around stigma, the first author began the process by developing inductive codes, described by Boyatzis (1998) as codes that arise based on how the researcher reads and interprets the data. These codes were then sorted and grouped by using loose themes that contextualized the coded data. The first author then constructed solid themes around those codes. The themes were intentionally kept broad to ensure that the themes remained reflective of the data and not too interpretative. The first author then reviewed these themes and then collapsed them once again, creating even broader thematic categories. In order to increase the rigor and interpretive value of the research, the first author sought out another researcher, the second author, to independently review the transcripts, codes, and themes. The first and second author then met to discuss the final themes. While the second author agreed with how the themes were developed, he recommended not collapsing the themes into just three
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categories, stating that it potentially undermined the richness of the partici- pants’ experiences. The first author agreed but felt that having too many themes did not capture the elements that were shared among experiences. The authors then decided to include both the three broad, overarching themes as well as the “richer” themes, listing them as subthemes (see Table 2).
Participants spoke strongly about the experience and impact of stigma during the active phases of their depression. Their responses were divided into three main categories: race/culture-specific aspects of dealing with depression, the impact of the diagnosis on those suffering from depression, and pushing back against the stigma. Subthemes of these broader themes are also included and identified as “aspects,” “consequences,” or “methods.”
Race/culture-specific aspects of depression experience
It is no surprise that many Black individuals experiencing depression fear being seen as “crazy” and/or “weak.” What is perhaps most surprising is that for many Black Americans there is a racializing and gendering of “crazy” and weakness, a notable aspect of how the depression experience is interpreted and understood. For some respondents, being “crazy” was not only an indictment on one’s mental status but also of one’s racial status. Janelle stated that many Blacks characterized other Blacks with depression as being “crazy like those White people.” Respondents believed that weakness was a characterization entangled with race and sometimes gender. Shalesa believes that there is an “image of the strong Black woman or the strong Black man” that many Black Americans feel they must emulate. Janelle feels that it is this image that forces some people to “deny” or “not acknowledge” the fact they are depressed, “especially Black women.” She went on to say that it is “’cause it’s always ‘oh, you’re the matriarch, you have to be the strong one’ and you know, it’s kinda like you’re not allowed to be depressed
Table 2. Major themes and subthemes. Major Themes Subthemes
Race/Culture-Specific Aspects of Depression Experience
Racializing and Gendering of Depression Stigma Felt More Strongly in Black Communities Experience and Disclosure of Depression as Taboo
Impact of Stigma Diminished Help-Seeking “Outted and Ousted” Shame and Internalized Stigma
Pushing Back Against the Stigma Seeking Treatment Disclosing to Other Black Americans Study Participation
260 R. D. CAMPBELL AND O. MOWBRAY
almost.” Kamille felt that her “image of what depression is” was shaped by the cultural messages she received about depression. She said that it was not until later that she came to understand that depression affected many and the image was not simply “White women who can’t deal with life.” Keith had this to say when describing his depression:
I don’t know if you asked, another manifestation of the depression is tears. I’d be just driving, you know, and then all of a sudden I’m crying. I don’t know if it’s a song on the radio, but the tears, you know? I’m just, I’m thinking about this or that, and for an African-American male to do that in public, you feel very vulnerable, you know? It’s a sign of weakness. You know, it’s like an Achilles heel. And especially if you came up in the streets, that’s something you never want to do because, you know, it’s like that little triple wildebeest: you don’t stand a chance. [laughs]
Although the stigma attached to mental illness is not unique to Black Americans, many respondents felt that their experiences were indeed differ- ent from those of other races, suggesting that stigma may be stronger in Black communities. Richard observed that “not only in the general populace is there a stigma, but it’s there in our community on a very strong level.” Other respondents also shared this belief, indicating another strong aspect of the depression experience of Black Americans. Denise stated that depression and treatment were “even more stigmatized in the Black community than in any other community.” Kamille’s response suggested that individuals with predominately Black social networks may be less willing to discuss being depressed than those with predominantly White or mixed-race networks:
Like, the core of people that I socially interact with are Black. I think that would’ve made me less likely to come and be like, ‘hey, guess what? I’m depressed.’ So, I think that made me even more hesitant to broach the subject or to really talk about the real deal about how I was feeling.
Similarly, other respondents believed that people in White communities were more accepting of depression. Laura stated that she believed “for Caucasians, in general, [depression] is more accepted.” Elisa agreed, stating,
[Whites] would be understanding and sympathetic towards it, and they would listen to me and not tell me, ‘oh you should just do this’ or ‘you should get over it’ and things like that ’cause I feel like that’s how a lot of my family members reacted to my mom when she talked about her depression.
Respondents also described a cultural environment in which symptoms of depression, including increased suicidal ideation, were not only stigmatized. There also were strong taboos concerning discussion of the topic. Therefore, the taboo nature of disclosure is another important aspect of Black Americans’ depression experiences. Laura stated that depression “isn’t really a widely talked about issue in the African-American community” and that “it
JOURNAL OF ETHNIC & CULTURAL DIVERSITY IN SOCIAL WORK 261
was pretty taboo within the African-American community itself.” Janelle also talked about depression as being “a taboo subject in the Black community.” Miller also used the term “taboo” to describe why be believes Black Americans found it difficult to talk about or seek help for their depressed feelings. Kamille stated that the taboo around mental health problems extends beyond depression to suicide: “I think it’s extremely taboo to talk about suicide, or like there’s a perception that Black people don’t commit suicide, like it’s not even an option, you know?”
The impact of stigma
Many of the respondents stated that the impact of stigma can have real consequences concerning whether an individual seeks help for depression. Richard believed stigma diminished help-seeking for Blacks with depression, stating, “I mean, they don’t even want to go to a doctor. [laughter] The stigma again. [Others will] think you are weak or, you know, different.” He went on to say that even when an individual does seek help, “all they’re gonna do is give me some medication and people are going to tease me.” In addition, Sidney said that Blacks might be less willing to discuss their mental health problems because they “don’t want people talking about them” or they “don’t want people to treat you differently, like you have a problem.”
These fears of being stigmatized led some respondents to hide their depression. Carol felt that the stigmatization of depression and its symptoms may make many individuals reluctant to “tell anyone ’cause people might think [they’re] …
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Key Words: self-stigma, stigma reduction, mental illness, empowerment
Manuscript received and accepted January 2012.
On the Self-Stigma of Mental Illness: Stages, Disclosure, and Strategies for Change
Patrick W Corrigan, PsyD1; Deepa Rao, PhD, MA2 1 Distinguished Professor and Associate Dean for Research, College of Psychology, Illinois Institute of Technology, Chicago, Illinois. Correspondence: Illinois Institute of Technology, 3424 South State Street, Chicago, IL 60616; [email protected]
2 Research Assistant Professor, Department of Global Health, University of Washington, Seattle, Washington.
People with mental illness have long experienced prejudice and discrimination. Researchers have been able to study this phenomenon as stigma and have begun to examine ways of reducing this stigma. Public stigma is the most prominent form observed and studied, as it represents the prejudice and discrimination directed at a group by the larger population. Self-stigma occurs when people internalize these public attitudes and suffer numerous negative consequences as a result. In our article, we more fully define the concept of self-stigma and describe the negative consequences of self-stigma for people with mental illness. We also examine the advantages and disadvantages of disclosure in reducing the impact of stigma. In addition, we argue that a key to challenging self-stigma is to promote personal empowerment. Lastly, we discuss individual- and societal-level methods for reducing self-stigma, programs led by peers as well as those led by social service providers.
W W W
Les personnes souffrant de maladie mentale font depuis longtemps l’objet de préjugés et de discrimination. Les chercheurs ont pu étudier ce phénomène comme étant celui des stigmates, et ont commencé à examiner des façons de réduire ces stigmates. Les stigmates du public sont la forme prédominante qui a été observée et étudiée, car elle représente les préjugés et la discrimination dirigés vers un groupe par l’ensemble de la population. L’auto-stigmatisation se produit lorsque les gens internalisent ces attitudes du public et par la suite, souffrent de nombreuses conséquences négatives. Dans notre article, nous définissons plus complètement le concept de l’auto-stigmatisation et décrivons les conséquences négatives que l’auto-stigmatisation provoque chez les personnes souffrant de maladie mentale. Nous examinons aussi les avantages et désavantages de la divulgation pour réduire l’effet des stigmates. En outre, nous alléguons qu’un moyen de défier l’auto-stigmatisation consiste à promouvoir l’habilitation personnelle. Enfin, nous présentons des méthodes au niveau individuel et sociétal de réduire l’auto-stigmatisation, des programmes menés par les pairs ainsi que ceux menés par des prestataires de services sociaux.
In making sense of the prejudice and discrimination experienced by people with mental illnesses, researchers have come to distinguish public stigma from self-stigma.1 Public stigma is what commonly comes to mind when discussing the phenomenon, and represents the prejudice and discrimination directed at a group by the population. Public stigma refers to the negative attitudes held by members of the public about people with devalued characteristics. Self-stigma occurs when people internalize these public attitudes and suffer numerous negative consequences as a result.2 In our article, we seek to more fully define self- stigma, doing so in terms of a stage model. We will argue that a key to challenging self-stigma is to promote personal empowerment. One way to do this is through disclosure, the
strategic decision to let others know about one’s struggle toward recovery. Then, we will discuss individual and societal level methods for reducing self-stigma.
Defining Self-Stigma While acknowledging the role of societal and interpersonal processes involved in stigma creation, social psychologists study stigma as it relates to internal and subsequent behavioural processes that can lead to social isolation and ostracism.3 Stereotypes are the way in which humans categorize information about groups of people. Negative stereotypes, such as notions of dangerousness or incompetence, often associated with mental illness, can be harmful to people living with mental illnesses. Most people
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On the Self-Stigma of Mental Illness: Stages, Disclosure, and Strategies for Change
Clinical Implications • Self-stigma can significantly impact overall health
• Techniques and interventions have been developed to help a person reduce self-stigma.
Limitations • Although interventions have been developed to help
a person reduce self-stigma, there are limited studies on the validation of these interventions and their adaptations for specific populations.
• Future research needs to continue to evaluate programs that promote empowerment to reduce self-stigma.
people have knowledge of particular stereotypes because they develop from, and are defined by, societal characterizations of people with certain conditions. Although broader society has defined these stereotypes, people may not necessarily agree with them. People who agree with the negative stereotypes develop negative feelings and emotional reactions; this is prejudice. For example, a person who believes that people with schizophrenia are dangerous may ultimately describe feeling fearful of those with serious mental illness (SMI). From this emotional reaction comes discrimination, or the behavioural response to having negative thoughts and feelings about a person in a stigmatized outgroup. A member of the general public may choose to remain distant from a person with mental illness because of their fear (prejudice) and belief (stereotype) that the person with mental illness is dangerous.
People who live with conditions such as schizophrenia are also vulnerable to endorsing stereotypes about themselves, which is self-stigma. It is comprised of endorsement of these stereotypes of the self (for example, “I am dangerous”), prejudice (for example, “I am afraid of myself”), and the resulting self-discrimination (for example, self-imposed isolation). Once a person internalizes negative stereotypes, they may have negative emotional reactions. Low self- esteem and poor self-efficacy are primary examples of these negative emotional reactions.4 Self-discrimination, particularly in the form of self-isolation, has many pernicious effects leading to decreased health care service use, poor health outcomes, and poor quality of life.5,6 Poor self-efficacy and low self-esteem have also been associated with not taking advantage of opportunities that promote employment and independent living.7 Link et al8 called this modified labelling theory; contrasting classic notions of the label (see Gove9,10), Link et al noted that people who internalize the stigma of mental illness worsen the course of their illness because of the harm of the internalized experience, per se. Self-stigmatization diminishes feelings of self-worth, such that the hope in achieving goals is undermined. Thus the harm of self-stigma manifests itself through an intrapersonal process, and ultimately, through poor health outcomes and quality of life.2,4
A Stage Model of Self-Stigma Self-stigma has often been equated with perceived stigma; for example, a person’s recognition that the public holds prejudice and will discriminate against them because of their mental illness label.7 In particular, perceived devaluation and discrimination is thought to lead to diminished self- esteem and -efficacy. We believe this to actually be the first stage of a progressive model of self-stigma (Figure 1). As such, we see the process of internalizing public stigmas as occurring through a series of stages that successively follow one another.2,4,10,11 In the general model, a person with an undesired condition is aware of public stigma about their condition (Awareness). This person may then agree that these negative public stereotypes are true about the group (Agreement). Subsequently, the person concurs that these
stereotypes apply to him- or herself (Application). This may lead to harm and to significant decreases in self-esteem and -efficacy (Harm). Unlike other research on self-stigma,12,13 the stage model shows that pernicious effects of stigma on the self do not occur until later stages. Not until the person applies the stigma, does harm to self-esteem or -efficacy occur.
One of the challenges of a stage model of self-stigma is sorting out the effects of later stages from those of depression, which is frequently experienced among people with SMI.14 Other staged models of behaviour suggest that any individual stage is most strongly influenced by the immediately preceding one.15 Thus to fully understand stigma’s contribution to poor health outcomes, research must crosswalk specific stages with common antecedents of poor outcomes, such as depressive symptoms. In this way, the effects of internalized stigma on self-esteem can be partialled out from other causes of depression.
The Why Try Effect A related consequence of self-stigmatization is what has been called the why try effect, in which self-stigmatization interferes with life goal achievement.11 Self-stigma functions as a barrier to achieving life goals. However, self- esteem and -efficacy can reduce the harmful results of self- stigma. Diminished self-esteem leads to a sense of being less worthy of opportunities, which undermines efforts at independence, such as obtaining a competitive job.
Why should I seek a job as an accountant? I am not deserving of such an important position. My flaws should not allow me to take this kind of a job from someone who is more commendable.
Alternatively, decrements to self-efficacy can lead to a why try outcome based on a person’s belief that he or she is incapable of achieving a life goal.
Why should I attempt to live on my own? I am not able to be independent. I do not have the skills to manage my own home.
Why try is a variant of modified labelling theory,8 in which the social rejection linked to stigmatization contributes to
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low self-esteem. Modified labelling theory also suggests avoidance as a behavioural consequence of devaluation. When people perceive devaluation, they may avoid situations where public disrespect is anticipated.
Challenging Self-Stigma There is a paradox to self-stigma.16 Some people with mental illness internalize it and suffer the harm to self- esteem, self-efficacy, and lost goals. However, many others seem oblivious to its effects and report no pain. Yet another group is especially interesting: people who seem to report righteous indignation at the injustice of stigma. It is this third group that may suggest an antidote to self- stigma: personal empowerment. Empowering people seems to be an effective way of reducing self-stigmatization, encourage people to believe they can achieve their life goals, and circumvent further negative consequences that result from self-stigmatizations. In a sense, empowerment is the flip side of stigma, involving power, control, activism, righteous indignation, and optimism. Investigations have shown empowerment to be associated with high self- esteem, better quality of life, increased social support, and increased satisfaction with mutual-help programs.17–19 Thus empowerment is the broad manner by which we can reduce stigma. In the remainder of our article, we describe
the specific mechanisms that are involved with empowering people as ways to decrease self-stigma.
Disclosure: The First Step Many people deal with self-stigma by staying in the closet; they are able to shelter their shame by not letting other people know about their mental illness. One way for a person to promote antistigma and counter the shame is to come out, to let other people know about their psychiatric history. Research has interestingly shown that coming out of the closet with mental illness is associated with decreased negative effects of self-stigmatization on quality of life, thereby encouraging people to move toward achieving their life goals.20 When people are open about their condition, worry and concern over secrecy is reduced; they may soon find peers or family members who will support them, even after knowing their condition, and they may find that their openness promotes a sense of power and control over their lives.21 Still, being open about one’s condition can have negative implications. Openness may bring about discrimination by members of the public, any relapses may be more widely known than preferred, and therefore more stressful, and in some cases, disclosure may be more isolating. For example, in India, documentation of mental illness is grounds for divorce, a situation that some would consider a form of institutionalized stigma.22,23 A person with mental illness in India may feel doubly stressed by the threat of divorce and further public discrimination. Deciding to disclose is ultimately a very personal decision, closely tied to the cultural context, and requires thorough consideration of the potential benefits and consequences.
Coming out is not a black-and-white decision. There are strategies that vary in risk for handling disclosure, which are summarized in Figure 2.24,25 At the most extreme, people may stay in the closet through social avoidance. This means keeping away from situations where people may find out about one’s mental illness. Instead, they only associate with other people who have mental illness. It is protective (no one will find out the shame) but obviously also very restrictive. Others may choose not to avoid social situations but instead to keep their experiences a secret. An alternative version of this is selective disclosure. Selective disclosure means there is a group of people with whom private information is disclosed and a group from whom this information is kept secret. While there may be benefits of selective disclosure, such as an increase in supportive peers, there is still a secret that could represent a source of shame. People who choose indiscriminant disclosure abandon the secrecy. They make no active efforts to try to conceal their mental health history and experiences. Hence they opt to disregard any of the negative consequences of people finding out about their mental illness. Broadcasting one’s experience means educating people about mental illness. The goal here is to seek out people to share past history and current experiences with mental illness. Broadcasting has additional benefits, compared with indiscriminant disclosure. Namely, it fosters
Figure 1 The stage model of self-stigma
Figure 1: The Stage Model of Self Stigma
Awareness: The public believes people with mental
illness are weak.
Harm: Because I am weak, I
am not worthy or able.
Agreement: That’s right. People with mental illness
Application: I am mentally ill so I
must be weak.
Why try… To pursue a job; I am not worthy. To live on my own; I am not able.
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On the Self-Stigma of Mental Illness: Stages, Disclosure, and Strategies for Change
their sense of power over the experience of mental illness and stigma.
Methods of Reducing Stigma There are other strategies that people living with mental illness can use to cope with the negative consequences of self-stigmatization. A caution needs to be sounded first. In trying to help people learn to overcome self-stigma, advocates need to make sure they do not suggest that the stigmatization is the person’s fault, that having self-stigma is some kind of flaw like other psychiatric symptoms that the person needs to correct. Stigma is a social injustice and an error of society. Hence eradicating it is the responsibility, and should be the priority, of that society. In the meantime, people with mental illness may wish to learn ways to live with, or compartmentalize, that stigma. However, curing it lies with the community in which one lives. Hence erasing public stigma may be a broad-based fix of the stigma problem. What we broach here are more narrowly focused efforts to help people who are bothered by internalized stigma.
Manualized approaches to self-stigma reduction for people with mental illnesses are in development. One promising approach is the Ending Self-Stigma intervention,26 which uses a group approach to reduce self-stigmatization. The intervention meets as a group for 9 sessions, with materials covering education about mental health, cognitive- behavioural strategies to impact the internalization of public stigmas, methods to strengthen family and community ties, and techniques for responding to public discrimination. The cognitive-behavioural strategies rest on insights from cognitive therapy27 that frame self-stigma as irrational self- statements (for example, “I must be a stupid person because I get depressed”) that the person seeks to challenge (for example, “Most other people do not think depressed people are stupid”). These kinds of challenges lead to counters— pithy statements people may use the next time they catch themselves self-stigmatizing.
There I go again. Just because I got depressed last fall does not mean I am stupid and incapable of handling a job. I have struggles just like everyone else.
A pilot study of the intervention showed that internalized stigma was reduced and perceived social support increased after participation in the weekly intervention.26
A good example of a societal-level approach that may also benefit a person is the In Our Own Voice program, developed by the National Alliance on Mental Illness in the United States. This intervention involves a manualized group approach for targeted groups of the general population. Testimonials by people with mental illness are the key to stigma reduction in this program. Participants of the intervention can be, for example, health care professionals, church congregations, and students. Research has shown the program’s effectiveness in reducing negative attitudes toward people with mental illness, in its long and short
versions.11 If programs such as these help to reduce public stigmas around mental illness, possible prejudices that a person with mental illness perceives and internalizes would be reduced, thus indirectly impacting self-stigma. In addition, the people providing testimonials as part of the intervention feel empowered by the activist role they play in advocating for themselves, thereby reducing self-stigma as the program is implemented.
Peer Support Consumer-operated programs offer another way for people with SMI to enhance their sense of empowerment.28 Groups such as these provide a range of services, including support for people who are just coming out, recreation and shared experiences that foster a sense of community within a larger hostile culture, and advocacy and (or) political efforts to further promote group pride.28 Several forces have converged during the past century to foster consumer- operated services for people with psychiatric disabilities. Some reflect dissatisfaction with mental health services that disempower people by providing services in restrictive settings. Others represent a natural tendency of people to seek support from others with similar problems. Recently, various consumer-operated service programs have developed, including: drop-in centres, housing programs, homeless services, case management, crisis response,
Figure 2 A hierarchy of disclosure strategies
Figure 2. A hierarchy of disclosure strategies
Social avoidance: Stay away from others so they do not have a chance to stigmatize me!
Secrecy: Go out into the world—work and go to church—but tell no one about my illness.
Selective disclosure: Tell people about my illness who seem like they will understand.
Indiscriminant disclosure: Hide it from no one.
Broadcast: Be proud. Let people know.
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benefit acquisition, antistigma services, advocacy, research, technical assistance, and employment programs.28,29 Results of a qualitative evaluation of consumer-operated programs showed that participants in these programs reported improvements in self-reliance and independence; coping skills and knowledge; and feelings of empowerment.29 Future research needs to isolate the active ingredients of consumer-operated services that lead to positive change.
Conclusions Stigma is a societal creation—what social psychologists have come to describe as prejudice and discrimination. Unfortunately, some people with SMI internalize the stigma and suffer significant blows to self-esteem and -efficacy. However, self-stigma is not an inevitable curse. People in a stigmatized group do not necessarily turn that stigma onto themselves. Consider research about racism affecting the African-American community. Classic psychological models believed African Americans to have lower self-esteem than White Americans because the former internalized the biases and prejudices about them that dominated in the culture of the latter.30,31 Research consistently fails to show this, and, in fact, may suggest the obverse; African Americans may have higher self- esteem than White Americans.32–37 How can this be? African Americans will report they are aware of White Americans prejudice but do not believe it actually applies to themselves. In fact, many African Americans report White Americans ignorance can be a personal rallying cry for their personal sense of empowerment and a wake-up call for their community.
The lesson seems to apply to self-stigma for mental illness, too. Internalizing prejudice and discrimination is not a necessary consequence of stigma. Many people recognize stigma as unjust and, rather than being swept away by it, take it on as a personal goal to change. Many others are unaware or unmotivated by the phenomenon altogether. However, there are people who seem to apply the prejudice to themselves and suffer lessened self-esteem and -efficacy. These people may benefit from structured programs to learn to challenge the irrational statements that plague their self-identity. They may benefit from joining groups of peers who have successfully tackled the stigma. They may benefit from a strategic program to come out about their stigma. Research needs to continue to identify and evaluate programs that promote empowerment at the expense of self-stigma.
Acknowledgements This work was supported, in part, by US National Institutes of Mental Health grant 08598–01. Dr Rao is supported by a US National Institutes of Health career development award, K23 MH 084551.
The Canadian Psychiatric Association proudly supports the In Review series by providing an honorarium to the authors.
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