Disclosing the diagnosis of schizophrenia: A pilot study of the ‘Coming Out Proud’ intervention

Abstract

Background:

Schizophrenia is one of the most stigmatized psychiatric disorders, and disclosing it is often a source of stress to individuals with the disorder. The Coming Out Proud (COP) group intervention is designed to reduce the stigma’s negative impact and help participants decide if they want to disclose their disorder.

Aims:

To assess the effect of the COP intervention in individuals with the diagnosis of schizophrenia.

Methods:

A pilot study of 3 2-hour group lessons (6–12 participants) per week. Individuals were selected from three specialized outpatient services in São Paulo, Brazil; 46 people were willing to participate, 11 dropped out during the intervention and 4 were excluded due to low intelligence quotient (IQ), resulting in a final sample of 31 participants. Outcomes were assessed before (T0/baseline) and after (T1/directly) after the COP intervention, and at 3-week follow-up (T2/3 weeks after T1). We applied eight scales, of which four scales are analyzed in this article (Coming Out with Mental Illness Scale (COMIS), Cognitive Appraisal of Stigma as a Stressor (CogApp), Self-Stigma of Mental Illness Scale-Short Form (SSMIS) and Perceived Devaluation-Discrimination Questionnaire (PDDQ)).

Results:

People who completed the COP intervention showed a significant increase in the decision to disclose their diagnosis (22.5% in T0 vs 67.7% in T2). As to the perception of stigma as a stressor, mean values significantly increased after the intervention (T0 = 3.83, standard deviation (SD) = .92 vs T2 = 4.44, SD = 1.05; p = .006). Two results had marginal significance: self-stigma was reduced (T0 = 3.10, SD = 1.70 vs T2 = 2.73, SD = 1.87; p = .063), while perceived discrimination increased (T0 = 2.68, SD = .55 vs T2 = 2.93, SD = .75; p = .063).

Conclusion:

This study suggests that the COP group intervention facilitated participants’ disclosure decisions, and the increasing awareness of stigma as a stressor in life may have facilitated their decision to eventually disclose their disorder. The results raise questions that require further analysis, taking sociocultural factors into account, as stigma is experienced differently across cultures.

Keywords

Schizophrenia prejudice social stigma mental health stigma and schizophrenia

Introduction

The stigma against people with mental illness remains a major obstacle to their integration in our societies (World Health Organization [WHO], 2013). In addition, stigma increases and intensifies the personal suffering of these individuals, making their lives even more difficult.

Since the experience of stigma is highly stressful for people with a mental illness, concealing or revealing their diagnosis can have a significant impact on their lives (Corrigan & Lundin, 2014; Pachankis, 2007). Owing to public stigma, these individuals may decide to keep their condition a secret, staying away from people in general, particularly avoiding personal relationships or not taking job opportunities (Alexander & Link, 2003). One of the most serious consequences of this self-chosen isolation is that ‘the disability will be maintained because the individual does not seek access to rehabilitation and remains without adequate treatment’ (Loch, 2013).

On the other hand, revealing their diagnosis might represent a relief for the sufferers, but also increases the risk of open discrimination. For example, when looking for a job, not revealing the diagnosis can protect the person from discriminatory attitudes and facilitate the return to the job market (Rüsch et al., 2018). Thus, concealing their diagnosis may protect them from being stigmatized. However, the literature shows that concealing the diagnosis tends to cause more losses and limitations to their lives in the long run than revealing it (Corrigan, 2004; Link, Mirotznik, & Cullen, 1991; Pachankis, 2007).

But not all diagnostic categories are equally affected (Angermeyer, 2002; Oliveira, Esteves, & Carvalho, 2015; Stuart & Arboleda-Flórez, 2001). Among various diagnostic categories, schizophrenia is known as one of the most severe and most stigmatized psychiatric illnesses (Angermeyer & Dietrich, 2006; Crisp, Gelder, Goddard, & Meltzer, 2005; Slavinsky & Krauss, 1982; Wood, Byrne, Varese, & Morrison, 2016). Attributing danger and unpredictability to people with schizophrenia (85%) is much more common than in people, for example, diagnosed with depression or anxiety (71%); (Angermeyer & Dietrich, 2006). People with schizophrenia experience more discrimination, that is, social rejection, because of their illness and the associated stigma (Dinos, Stevens, Serfaty, Weich, & King, 2004), and are often the ones to suffer the greatest rejection (Lundberg, Hansson, Wentz, & Björkman, 2008).

For Wood et al. (2016), these people undoubtedly experience higher levels of stigma when compared to any other diagnosis, since they are perceived negatively by the population (Wood, Birtel, Alsawy, Pyle, & Morrison, 2014). Thus, if the diagnosis of schizophrenia is one of the most stigmatized and therefore causes more stress, it may be necessary to work on stigma with this population in ways that take such negative characteristics into account.

A number of studies have long ago documented the lower prevalence rates and better outcome of schizophrenia in developing countries (Bhugra, 2005; Sartorius, Jablensky, & Shapiro, 1977). Furthermore, according to Hengartner et al. (2012), sociocultural background may play a major role on stigma toward people with schizophrenia. Patients from developing countries – more socially and ethnically diverse than developed countries and with a less competitive social system – were found to be less stigmatized by their disease. Other authors suggest that Latin cultures tend to be more protective and supportive than Anglo-American cultures, and therefore less stigmatizing (Karno et al., 1987; López et al., 2004).

However, although the stigma of schizophrenia is a common and transcultural phenomenon (Versola-Russo, 2006), present in both developed and developing societies, and despite extensive research on stigma available, little is known about cultural differences in handling diagnoses for the sufferers, with respect to revealing or concealing a diagnosis such as schizophrenia.

Aiming for the first mentioned question in the introduction, Corrigan and Lundin (2014) developed the Coming Out Proud (COP) intervention, in order to approach issues related to disclosing one’s psychiatric diagnosis (more details are provided below in the section ‘Methods’). And to encompass all the aspects cited before, in this study, we hypothesized that helping a group of patients with schizophrenia to deal with stigma through a specific intervention, that is, COP, may facilitate the difficult decision of whether or not to disclose their diagnosis, and that there could be a reduction in self-stigma.

Methods

Sample

In this pilot study, we enrolled individuals with a diagnosis of schizophrenia according to Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-V) (APA, 2013). Individuals were selected from three different outpatient services in São Paulo, Brazil between 2016 and 2017. Two outpatient services partnered with the Department and Institute of Psychiatry of University of Sao Paulo, Brazil (IPQ) in the research: ‘A Casa’ (The House) Institute and the Federal University of São Paulo (UNIFESP), which were selected not only for their proximity to our institute, but also for being traditionally well-respected institutions specializing in the treatment of schizophrenia, the former since 1988 and the latter since 1933.

The inclusion criteria were as follows: diagnosis of schizophrenia according to the Diagnostic and Statistical Manual of Mental Disorders (6th ed.; DSM-V) (APA 2013) criteria; 18–67 years older; ability to provide written informed consent; and a score of 4 or higher in the screening item ‘In general, how worried or stressed have you felt about making the decision to say that you have a mental illness or keep it a secret?’. The screening question was to be answered on a scale of 1–7, where 1 represented not worried/stressed at all and 7 extremely worried/stressed. Exclusion criteria were drug use, illiteracy and intellectual disability (Wechsler Abbreviated Scale of Intelligence (WASI) score < 80).

The principal investigator (V.P.C.S.) invited and informed about the objectives of this study 139 potential participants over a year and a half (68 invited for face-to-face interview, 45 were informed by telephone and 26 by e-mail). Of these, a total of 68 individuals completed the registration form and reached the minimum score of 4 points in the screening item. In the end, 46 people agreed to participate in the COP intervention, 11 dropped out during the intervention and 4 were excluded because of low intelligence quotient (IQ). The final sample comprised 31 participants (Figure 1).

Figure 1.

Sampling procedures.

Intervention and instruments

The COP intervention was developed by Corrigan and Lundin (2014) to support participants with the decision of whether or not to disclose their mental illness. The intervention consisted of three face-to-face lessons lasting 2 hours at weekly intervals. The groups included 6–12 participants. Two psychologists clinically experienced in the treatment of people with schizophrenia acted as facilitators.

All participants received a copy of the COP workbook. Each lesson, according to the manual, addressed specific topics, such as (1) risks and benefits of keeping secret or disclosing their diagnosis in different situations; (2) levels of disclosure, from the extreme of a complete social withdrawal to the indiscriminate reporting of their experience with mental illness; and (3) useful ways of telling their story with mental illness, again in different situations.

Three identical evaluations with the instruments described below were carried out, with an approximate duration of 2 hours, namely, T0: baseline assessment, performed 3 days before the first group session; T1: post-intervention evaluation, performed within 3 days after the third session, that is, 3 weeks after the start of the study; T2: group follow-up evaluation 3 weeks after the last group session (±3 days). All evaluations were conducted in person to ensure that the data were complete and that participants could ask questions whenever in doubt.

Eight scales were used to measure different aspects of participants. The scales were translated from English into Portuguese, then translated back into English and checked for consistency by a bilingual psychologist (I.H.). After the necessary adjustments, a pre-test was performed with all scales in a random population (three hospital employees and three students from the institution where the research was conducted). Thus, we verified (1) application time, (2) feasibility of the instrument and (3) adequacy of the language of the instrument to the study population.

The following scales were used: (1) Subjective Quality of life – 17 items (Lehman, 1988), examining the frequency of social contact, satisfaction with their social relations, amount of leisure activities and satisfaction with leisure activities; (2) Rosenberg Self-Esteem Scale (Rosenberg, 1965), where 10 sentences evaluating how well you feel about yourself had to be scored from 1 (strongly disagree) to 4 (strongly agree); (3) Coming Out with Mental Illness Scale (COMIS; Corrigan et al., 2010), measuring the perceived benefits of being out, and then 43 statements about the reasons for the decision (1 = I totally agree to 5 = I totally disagree); (4) Authenticity Scale (Wood, Linley, Maltby, Baliousis, & Joseph, 2008), measuring the authenticity of the respondents regarding relationship issues and coping with them, 12 statements (1 = strongly agree to 5 = strongly disagree); (5) Self-Stigma of Mental Illness Scale-Short Form (SSMIS; Corrigan et al., 2012), which assessed whether respondents applied negative stereotypes, with 20 affirmations, each being scored 1 = I totally disagree to 9 = I totally agree; (6) Social Withdrawal Secrecy – Perceived Devaluation-Discrimination Questionnaire (PDDQ; Link, Cullen, Struening, Shrout, & Dohrenwend, 1989), with 29 items scored on a five-point scale (1 = strongly disagree to 5 = strongly agree), which assessed whether people are aware of or, otherwise, recognize the stereotypes of mental illness; (7) Cognitive Appraisal of Stigma as a Stressor (CogApp; Rüsch et al., 2009), an eight-item scale, each being scored 1–7, measuring the cognitive appraisal of stigma as a stressor; and (8) Barriers to Access to Care Evaluation Scale (BACE; Clement et al., 2012), 30 items measuring the decision to seek professional medical help, and possible difficulties, with scores from 0 (I had no difficulty) to 3 (With great difficulty).

In addition, sociodemographic data, such as age, sex, marital status, IQ, years of education, years since diagnosis, family history and socioeconomic class, were also collected. The latter was classified into classes according to the IBGE (Brazilian Institute of Geography and Statistics; www.ibge.gov.br). These socioeconomic classes are based on family income that takes household infrastructure into account, such as the number of bathrooms in the household and housekeeper(s), as well as family assets (number of cars, televisions, refrigerators, etc.), to rank individuals into IBGE’s socioeconomic classes.

Ethics

The study was approved by the Research Ethics Committee of the Hospital das Clínicas of the Faculty of Medicine of the University of São Paulo (CAPPesq HC FMUSP; CAAE No. 57066316.0.0000.0068).

Statistical analysis

Scores were calculated for everyone in each scale and subscale of the instrument. The scales that presented mixed questions (positive and negative) had their negative scores reversed so that the sum could reflect a one-dimensional score. In the CogApp, COMIS, BACE v3, SSMIS and Authenticity scales, lower scores would reflect an improvement of the evaluated aspect. In the Quality of Life, PDDQ and Rosenberg Self-Esteem Scale, high scores would reflect an improvement in the assessed aspect.

Descriptive analyses of the sample were performed to delineate demographic data from the intervention group and compared to establish significant differences between the participants.

The repeated-measures analysis of variance (ANOVA) test was used when distributions were normal, and the Friedman (non-parametric) test was used for non-parametric distributions in order to compare the different behaviors of the results in T0, T1 and T2. For post-intervention decisions regarding disclosure or not of diagnosis, Cochran’s Q test was used. Post hoc analyses with the Bonferroni adjustment were used. The level of significance was set at two-tailed p <.05, and SPSS 23.0 for Mac was used.

Results

In our sample of 31 participants, the mean age was 37.4 years (standard deviation (SD) = 12.12). Men were the majority (n = 22; 71%). Regarding the socioeconomic class, 17 (54.8%) belonged to class B; the sample had an average of 14.48 years (SD = 11.58) of diagnosis. The mean IQ of the sample was of 95.39 (SD = 10.01). Of the 31 participants, 27 (87.1%) were unmarried, 13 (41.9%) had higher education or technical education and 12 (38.7%) completed secondary education.

With regard to family history with some diagnosis, 16 participants (51.6%) had relatives with mental illness (Table 1).

Table 1.

Sociodemographic characteristics of the sample (n = 31).

Age (mean, SD)	37.39 (12.12)
Sex (1 – male; n, %)	22 (71)
Socioeconomic class (B; n, %)	17 (54.8)
Years since diagnosis (mean, SD)	14.48 (11.58)
IQ (mean, SD)	95.39 (10.01)
Marital status (single; n, %)	27 (87.1)
Education (13 years or more; n, %)	13(41.9)
Family history (yes; n, %)	16 (51.6)

SD: standard deviation; IQ: intelligence quotient.

According to the COMIS scale, we found that in T0 7 people (22.58%) would reveal their diagnoses, in T1 19 (61.29%) people also decided to reveal, and in T2 21 (67.74%) opted to reveal their diagnosis (T0 × T1, p ⩽ .001; T0 × T2, p = .004; T1 × T2, p = .001). None of the participants who revealed their diagnosis at T0 decided to hide it after the study (T2).

We found a trend toward a reduction in self-stigma. The mean value at T0 for the SSMIS-2 scale was 3.10 (SD = 1.70). In T1, the mean score was 2.89 (SD = 1.83). In the final application, T2, 3 weeks after the end of the study, the mean value was 2.73 (SD = 1.87) (T0 vs T2, p = .063; Table 2).

Table 2.

Outcome measures accross different study times.

Possible names	T0 (baseline)		T1 (post)		T2 (follow-up)		p-values
Possible names	Mean	SD	Mean	SD	Mean	SD	General	T0 × T1	T0 × T2	T1 × T2
Quality of life – Frequency of social contact	2.65	.77	2.71	.74	2.75	.68	.686	1.000	1.000	1.000	a
Quality of life – Satisfaction with their social relations	4.61	1.24	4.62	1.03	4.71	1.00	.815	1.000	1.000	1.000	a
Quality of life – Amount of leisure activities	1.51	.19	1.49	.18	1.49	.20	.410	.694	.893	1.000	a
Quality of life – Satisfaction with leisure activities	4.36	1.28	4.70	1.27	4.49	1.26	.169	.259	1.000	.721	a
CogApp – Stigma as a stressor	3.83	.92	4.41	.90	4.44	1.05	.023	.011	.006	.761	b
Authenticity	2.68	1.07	2.49	.64	2.42	.78	.089	.645	.128	1.000	a
SSMIS – Self-stigma – Awareness	4.85	2.15	4.50	2.16	4.06	2.20	.132	.986	.128	.691	a
SSMIS – Self-stigma – Attitudes	3.10	1.70	2.89	1.83	2.73	1.87	.072	.339	.063	.446	b
SSMIS – Self-esteem – Negative concept endorsement	2.59	1.98	2.33	1.70	2.22	1.80	.264	.468	.113	.384	b
SSMIS – Self-esteem – Self-depreciation	2.65	1.95	2.53	1.83	2.33	1.87	.353	.648	.229	.544	b
Rosenberg Self-Esteem Scale	2.84	.66	2.90	.53	2.98	.58	.182	1.000	.423	.357	a
PDDQ – Perceived Discrimination 1	2.68	.55	2.90	.59	2.93	.75	.057	.186	.063	.345	b
PDDQ – Perceived Discrimination 2	2.84	.54	2.92	.58	2.93	.48	.353	.861	.463	1.000	a
PDDQ – Perceived Discrimination 3	2.60	.59	2.81	.59	2.78	.53	.095	.183	.135	1.000	a
BACE – Barriers to access	1.00	.65	1.03	.67	1.03	.66	.957	1.000	1.000	1.000	a
	N	%	N	%	N	%
COMIS: Coming Out with Mental Illness	7	22.58	19	61.29	21	67.74	<.001	.004	.001	1.000	c

Note: Bold value signify significant correlations – p<0.05.

SD: standard deviation; CogApp: Cognitive Appraisal of Stigma as a Stressor; SSMIS: Self-Stigma of Mental Illness Scale-Short Form; PDDQ: Perceived Devaluation-Discrimination Questionnaire; BACE: Barriers to Access to Care Evaluation Scale; COMIS: Coming Out with Mental Illness Scale; ANOVA: analysis of variance with Bonferroni correction.

ANOVA model for repeated measurements.

Test of Friedman.

Cochran’s Q test.

The perception of stigma as something stressful increased. The mean value at T0 for the CogApp scale was 3.83 (SD = .92). In T1, the mean score increased to 4.41 (SD = .90). In the final application, T2, the value was 4.44 (SD = 1.05). T0 × T1 and T0 × T2 differences were statistically significant when compared with baseline values. (p = .011 and p = .006, respectively; Table 2).

Regarding the perception of discrimination, the mean value at T0 for the PDDQ-1 scale was 2.68 (SD = .55). In T1, the mean score was 2.90 (SD = .59). In the final application, T2, the mean value was 2.93 (SD = .75). T0 × T2 differences were marginally significant when compared with the baseline values, showing a tendency toward the increase in the degree of perceived discrimination (p = .063; Table 2).

All the remaining scale scores did not significantly differ before and after the intervention.

Discussion

Our study found that (1) after the COP intervention, people with schizophrenia were willing to talk more about their diagnosis; (2) there was a trend toward the reduction in self-stigma; (3) perception of stigma as a stressor increased and (4) there was a tendency toward the increase in the perception of stigma, as described below.

After the COP intervention, we observed that, although the manual did not intend to convince the participant to reveal their diagnosis, only 7 (22.6%) participants had already revealed their diagnosis in the initial evaluation, but at the end of the research 21 participants (approximately 68%) chose to do so. As such, our study differs from a previous COP intervention pilot study (Rüsch et al., 2014); at baseline, 39 participants (78%), with different diagnoses, had already decided to reveal their mental illness to friends and family. Our results, in addition to achieving our first primary goal of facilitating the decision of whether to disclose diagnosis, also confirmed the hypothesis of Rusch’s study, that perhaps a sample with lower rates of baseline disclosure among participants had a more effective outcome. This first finding suggests that the initial reaction to conceal the diagnosis, as a measure of protection against stigma, is no longer a necessary defense for many participants after the Brazilian COP intervention.

Deciding to reveal one’s own diagnosis after the COP intervention may have been the consequence of feeling more prepared for the decision to deal with prejudice and no longer needing to hide. The focus on a single diagnosis may also have contributed to the result of increasing the choice of revealing their diagnosis, since group discussions have always revolved around the specificities of their disorder, intensifying work and being dependent upon the small number of encounters (Corrigan & Lundin, 2014; Knight, Wykes, & Hayward, 2006; Lucksted et al., 2011; Yanos, Roe, & Lysaker, 2011).

According to Sibitz, Amering, Gössler, Unger and Katschnig (2007), the very fact of being with people with the same diagnosis favors building knowledge about their potentials, strengths and abilities. Participants may feel more comfortable talking about the difficulty in dealing with symptoms, such as hallucinations and delusions, to colleagues who have been through it. For Yalom (1995), the possibility of exchanging experiences of similar symptoms promotes a therapeutic effect insofar as they do not feel the only ones going through this symptomatology.

If, on the one hand, they fear the risk of being labeled and discriminated against, on the other hand, research suggests that people who reveal their diagnoses generally report benefits, such as reduced secrecy-associated stress, increased authenticity, increased demand for help and social support (Pachankis, 2007).

Next, with regard to self-stigma, we found a tendency toward self-stigma decrease in our COP. Some studies indicate that self-stigma is a complex construction and therefore needs to be approached from multiple perspectives (Corrigan & Watson, 2002; Corrigan, Watson, & Barr, 2006).

Rüsch et al.’s (2014) pilot study conducted in Zurich found no reduction in self-stigma, unlike Corrigan et al.’s (2015) study conducted in California, in which a significant reduction in self-stigma was reported between pre- and post-test, and was still evident at follow-up. Since the latter was developed specifically for adolescents, this may have contributed to a better outcome. The same is true in the case of our intervention, which was also applied to a specific group. Rusch’s study, on the other hand, dealt with several diagnoses in their sample.

Our third finding showed an increase in the perception of stigma as a stressor. Since most participants decided to reveal their diagnosis after the COP intervention, we would expect stress on stigma to have decreased, so they would have felt more at ease to reveal their diagnosis. However, the opposite happened – the stigma paradox (Corrigan & Watson, 2002). Making the decision to disclose their diagnosis may have just been the consequence of an increased awareness of how much stigma can be a stressor. Being aware of stigma as a powerful stressor in their lives may have been precisely what led the participants to this immediate effect to decide to reveal their diagnosis. Also passing through the three intervention sessions and reflecting on the pros and cons of disclosure may have contributed to the feeling of empowerment so necessary to cope with the stigma and make possible an increase in the disclosure decisions.

This result raises questions that may need to be further analyzed, not only by focusing on a single diagnosis, but also from a cultural perspective. Stigma is experienced differently in various cultures (Angermeyer, Buyantugs, Kenzine, & Matschinger, 2004). Perhaps, a patient with schizophrenia feels less stressed in revealing their diagnosis in countries with intensive and ongoing work to combat stigma with mental illness than in countries that do not yet have a strong and comprehensive anti-stigma campaign, such as Brazil. According to Corrigan et al. (2018), ‘stigma is fundamentally a social construct defined by the culture from which it emerges’. Hence, to develop efficient campaigns, it is then necessary to increase the collection of data on the Brazilian population.

Strengths and limitations

In this Brazilian pilot study, in addition to focusing on a single diagnosis, we made sure, through the IQ assessment, that the sample consisted of patients with schizophrenia who did not present a cognitive decline that could sufficiently interfere in the discussions and the exercises proposed during the intervention. Also, this is the first time the COP intervention is conducted in a Latin American context.

One of the limitations of this pilot study is the relatively small sample size. Initially, the general sample consisted of 139 invited patients, of whom 46 were recruited and could participate in the intervention. However, of these 46, only 31 adhered. The retention difficulty is reflected in the high number of dropouts (n = 11; 23%), in addition to four exclusions after the intellectual level assessment at the time of entry into the study.

The problems of withdrawal referred to discontinuation of drug treatment, working hours, distance from home and, often, lack of financial conditions for transportation.

This high dropout rate even in such a brief intervention can also be explained by the negative symptoms present in schizophrenia. People with this disorder may have difficulty initiating and persisting in goal-directed activities (avolition). Social isolation and difficulty in interpersonal relationships (affective blunting) often prevent adherence to group programs or interventions. Corrigan (2004), of the COP, reported a high number of dropouts (13%), attributed to the evening sessions and the high demand for time for the meetings. These factors resulted in a smaller final sample than that initially obtained from 46 patients preventing us from achieving results with greater statistical significance. The lack of a control group was also a limitation. Future studies that use the randomized controlled trial as a design may broaden the discussion of these early findings.

Conclusion

Stigma has significant and damaging impacts on people with severe mental illness, interfering with important goals in all areas of life. Revealing their diagnosis can be one of the ways leading to a decrease in such impacts, as well as a means of coping with stigma.

Our Brazilian COP intervention proved to be an important tool to fight the stigma of schizophrenia, insofar as it enabled an increase in the perception of stress, a trend toward self-stigma reduction, and promoted disclosure.

With regard to the differences among populations, in the preparation of DSM-5, there seems to have been an effort to highlight the cultural aspects in the diagnostic criteria of schizophrenia. It is now up to researchers to contribute to larger, controlled studies that also point to the disparity in stigma experience, not only in different diagnoses, but also in different cultures.

This will enable the development of campaigns and strategies that better meet the needs and specificities of Brazilian patients, thus reducing the suffering of those who, in addition to suffering from a mental illness, still suffer from the painful consequences of being stigmatized.

Footnotes

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

ORCID iD

Viviane Piagentini Candal Setti

References

Alexander

L. A.

Link

B. G.

(2003). The impact of contact on stigmatizing attitudes toward people with mental illness. Journal of Mental Health, 12, 271–289.

American Psychiatric Association (APA). (2013). Diagnostic and Statistical Manual of Mental Disorders: DSM-5 (5th ed.). Washington, DC: Author.

Angermeyer

M. C.

(2002). From intuition- to evidence-based anti-stigma interventions. World Psychiatry, 1, 21–22.

Angermeyer

M. C.

Buyantugs

Kenzine

D. V.

Matschinger

(2004). Effects of labelling on public attitudes towards people with schizophrenia: Are there cultural differences? Acta Psychiatrica Scandinavica, 109, 420–425.

Angermeyer

M. C.

Dietrich

(2006). Public beliefs about and attitudes towards people with mental illness: A review of population studies. Acta Psychiatrica Scandinavica, 113, 163–179.

Bhugra

(2005). The global prevalence of schizophrenia. PLoS Medicine, 2, e151.

Clement

Brohan

Jeffery

Henderson

Hatch

S. L.

Thornicroft

(2012). Development and psychometric properties the Barriers to Access to Care Evaluation scale (BACE) related to people with mental ill health. BMC Psychiatry, 12, 36.

Corrigan

P. W.

(2004). Beat the stigma and discrimination! Four lessons for mental health advocates. Tinley Park, IL: Recovery Press.

Corrigan

P. W.

Larson

J. E.

Michaels

P. J.

Buchholz

B. A.

Rossi

R. D.

Fontecchio

M. J.

Rüsch

(2015). Diminishing the self-stigma of mental illness by Coming Out Proud. Psychiatry Research, 229, 148–154.

10.

Corrigan

P. W.

Lundin

(2014). Coming Out Proud to eliminate the stigma of mental illness: Manual for program facilitators and participants. Retrieved from http://www.comingoutproudprogram.org/index.php/manual-and-resources

11.

Corrigan

P. W.

Michaels

P. J.

Vega

Gause

Watson

A. C.

Rüsch

(2012). Self-stigma of Mental Illness Scale-Short Form: Reliability and validity. Psychiatry Research, 199, 65–69.

12.

Corrigan

P. W.

Morris

Larson

Rafacz

Wassel

Michaels

Rüsch

(2010). Self-stigma and coming out about one’s mental illness. Journal of Community Psychology, 38, 259–275.

13.

Corrigan

P. W.

Watson

A. C.

(2002). The paradox of self-stigma and mental illness. Clinical Psychology: Science and Practice, 9, 35–53.

14.

Corrigan

P. W.

Watson

A. C.

Barr

(2006). The self-stigma of mental illness: Implications for self-esteem and self-efficacy. Journal of Social and Clinical Psychology, 25, 875–884.

15.

Crisp

Gelder

Goddard

Meltzer

(2005). Stigmatization of people with mental illnesses: A follow-up study within the Changing Minds campaign of the Royal College of Psychiatrists. World Psychiatry, 4, 106–113.

16.

Dinos

Stevens

Serfaty

Weich

King

(2004). Stigma: The feelings and experiences of 46 people with mental illness: Qualitative study. British Journal of Psychiatry, 184, 176–181.

17.

Hengartner

M. P.

Loch

A. A.

Lawson

F. L.

Guarniero

F. B.

Wang

Y. P.

Rössler

Gattaz

W. F.

(2012). Attitudes of mental health professionals towards persons with schizophrenia: A transcultural comparison between Switzerland and Brazil. Revista de Psiquiatria Clínica, 39, 115–121.

18.

Karno

Jenkins

J. H.

De La Selva

Santana

Telles

López

Mintz

(1987). Expressed emotion and schizophrenic outcome among Mexican-American families. The Journal of Nervous and Mental Disease, 175, 143–151.

19.

Knight

Wykes

Hayward

(2006). Group treatment of perceived stigma and self-esteem in schizophrenia: A waiting list trial of efficacy. Behavioural and Cognitive Psychotherapy, 34, 305–318.

20.

Lehman

A. F.

(1988). A quality of life interview for the chronically mentally ill. Evaluation and Program Planning, 11, 51–62.

21.

Link

B. G.

Cullen

F. T.

Struening

Shrout

P. E.

Dohrenwend

B. P.

(1989). A modified labeling theory approach to mental disorders: An empirical assessment. American Sociological Review, 54, 400–423.

22.

Link

B. G.

Mirotznik

Cullen

F. T.

(1991). The effectiveness of stigma coping orientations: Can negative consequences of mental illness labeling be avoided? Journal of Health and Social Behavior, 32, 302–320.

23.

Loch

A. A.

(2013). Stereotypes and beliefs towards schizophrenia: a comparative study between mental health professionals and the general population of Brazil (published PhD thesis). Faculty of Medicine, University of São Paulo, São Paulo, Brazil.

24.

López

S. R.

Nelson Hipke

Polo

A. J.

Jenkins

J. H.

Karno

… Snydre

K. S.

(2004). Ethnicity, expressed emotion, attributions, and course of schizophrenia: Family warmth matters. Journal of Abnormal Psychology, 113, 428–439.

25.

Lucksted

Drapalski

Calmes

Forbes

DeForge

Boyd

(2011). Ending self-stigma: Pilot evaluation of a new intervention to reduce internalized stigma among people with mental illnesses. Psychiatric Rehabilitation Journal, 35, 51–54.

26.

Lundberg

Hansson

Wentz

Björkman

(2008). Stigma, discrimination, empowerment and social networks: A preliminary investigation of their influence on subjective quality of life in a Swedish sample. International Journal of Social Psychiatry, 54, 47–55.

27.

Oliveira

S. E.

Esteves

Carvalho

(2015). Clinical profiles of stigma experiences, self-esteem and social relationships among people with schizophrenia, depressive, and bipolar disorders. Psychiatry Research, 229, 167–173.

28.

Pachankis

J. E.

(2007). The psychological implications of concealing a stigma: A cognitive-affective-behavioral model. Psychological Bulletin, 133, 328–345.

29.

Rosenberg

(1965). Society and the adolescent self-image. Princeton, NJ: Princeton University Press.

30.

Rüsch

Abbruzzese

Hagedorn

Hartenhauer

Kaufmann

Curschellas

Corrigan

P. W.

(2014). 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.

31.

Rüsch

Corrigan

P. W.

Powell

Rajah

Olschewski

Wilkniss

Batia

(2009). A stress-coping model of mental illness stigma: II. Emotional stress responses, coping behavior and outcome. Schizophrenia Research, 110, 65–71.

32.

Rüsch

Corrigan

P. W.

Waldmann

Staiger

Bahemann

Oexle

Becker

(2018). Attitudes toward disclosing a mental health problem and reemployment: A longitudinal study. Journal of Nervous and Mental Disease, 206, 383–385.

33.

Sartorius

Jablensky

Shapiro

(1977). Two-year follow-up of the patients included in the WHO international pilot study of schizophrenia. Psychological Medicine, 7, 529–541.

34.

Sibitz

Amering

Gössler

Unger

Katschnig

(2007). Patients’ perspectives on what works in psychoeducational groups for schizophrenia: A qualitative study. Social Psychiatry and Psychiatric Epidemiology, 42, 909–915.

35.

Slavinsky

A. T.

Krauss

J. B.

(1982). Two approaches to the management of long-term psychiatric outpatients in the community. Nursing Research, 31, 284–289.

36.

Stuart

Arboleda-Florez

(2001). Community attitudes toward people with schizophrenia. Canadian Journal of Psychiatry, 46, 245–252.

37.

Versola-Russo

J. M.

(2006). Cultural and demographic factors of schizophrenia. International Journal of Psychsocial Rehabilitation, 10, 89–103.

38.

Wood

A. M.

Linley

P. A.

Maltby

Baliousis

Joseph

(2008). The authentic personality: A theoretical and empirical conceptualization and the development of the authenticity scale. Journal of Counseling Psychology, 55, 385–399.

39.

Wood

Birtel

Alsawy

Pyle

Morrison

(2014). Public perceptions of stigma towards people with schizophrenia, depression, and anxiety. Psychiatry Research, 220, 604–608.

40.

Wood

Byrne

Varese

Morrison

A. P.

(2016). Psychosocial interventions for internalised stigma in people with a schizophrenia-spectrum diagnosis: A systematic narrative synthesis and meta-analysis. Schizophrenia Research, 176, 291–303.

41.

World Health Organization. (2013). Mental health action plan: 2013-2020. Geneva, Switzerland: Author.

42.

Yalom

I. D.

(1995). The theory and practice of group psychotherapy (4th ed.). New York, NY: Basic Books.

43.

Yanos

P. T.

Roe

Lysaker

P. H.

(2011). 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, 576–595.