Personal stigma in schizophrenia spectrum disorders: a systematic review of prevalence rates, correlates, impact and interventions

Abstract

A systematic electronic PubMed, Medline and Web of Science database search was conducted regarding the prevalence, correlates, and effects of personal stigma (i.e., perceived and experienced stigmatization and self-stigma) in patients with schizophrenia spectrum disorders. Of 54 studies (n=5,871), published from 1994 to 2011, 23 (42.6%) reported on prevalence rates, and 44 (81.5%) reported on correlates and/or consequences of perceived or experienced stigmatization or self-stigma. Only two specific personal stigma intervention studies were found. On average, 64.5% (range: 45.0–80.0%) of patients perceived stigma, 55.9% (range: 22.5–96.0%) actually experienced stigma, and 49.2% (range: 27.9–77.0%) reported alienation (shame) as the most common aspect of self-stigma. While socio-demographic variables were only marginally associated with stigma, psychosocial variables, especially lower quality of life, showed overall significant correlations, and illness-related factors showed heterogeneous associations, except for social anxiety that was unequivocally associated with personal stigma. The prevalence and impact of personal stigma on individual outcomes among schizophrenia spectrum disorder patients are well characterized, yet measures and methods differ significantly. By contrast, research regarding the evolution of personal stigma through the illness course and, particularly, specific intervention studies, which should be conducted utilizing standardized methods and outcomes, are sorely lacking.

Psychiatric stigma research has been, up until recently, primarily focused on public concepts of mental illness and the negative reactions toward mentally ill persons displayed by individuals or societal groups 1–3. Several disease and patient characteristics have been identified as factors influencing stigmatization 4,5, and anti-stigma initiatives have been established to decrease stigmatizing attitudes and discriminating actions in individuals and society as a whole 6,7. In the past decade, however, a better understanding of the stigma process has shifted the attention from public stigma to the subjective experience of stigmatized people. Research has identified inter-individual variables that might increase or decrease the impact of stigma on the individual 8, as well as intra-individual variables that modify the impact of stigma on health-related outcomes. This new focus of interest was accompanied by a growing body of research regarding therapeutic interventions that address those intra- and inter-individual characteristics in mentally ill people aiming to reduce the prevalence and negative effects of stigma 9–12.

In recent years, the proposed inclusion of the attenuated psychosis syndrome in the DSM-5 has raised concerns about the potential stigmatization of patients being labelled “at-risk” 13–16, particularly considering the high number of false positives (only approximately 30% of patients showing putative initial prodromal symptoms eventually develop psychosis within the following 2.5 years) 17–19. This also raises the question of whether different stages of schizophrenia spectrum disorders – i.e., the clinical high risk syndrome, first episode and chronic illness – may be differently impacted by stigma and self-stigma.

In order to evaluate stigma research, a precise definition of “stigma” is relevant. In the majority of studies, Goffman's classical proposal that stigma is an “attribute that is deeply discrediting” and that reduces the person who bears it “from a whole and usual person to a tainted, discounted one” 20 serves as the basic definition that authors expand on. Link and Phelan 21, however, criticize the striking variability of stigma definitions used by members of different disciplines and redefine stigma as the co-occurrence of “labelling, stereotyping, separation, status loss, and discrimination”.

A further important terminological distinction is that between public stigma (i.e., “the general population endorses prejudice and manifests discrimination toward people with mental illness” 22) and personal stigma (consisting of perceived stigma, experienced stigma and self-stigma). The perception or anticipation of stigma refers to people's beliefs about attitudes of the general population towards their condition and towards themselves as members of a potentially stigmatized group 23. Experienced stigma refers to discrimination or restrictions actually met by the affected persons. Lastly, the internalization and adoption of stereotypic or stigmatizing views, i.e., of public stigma, by the stigmatized individual is referred to as self-stigma or internalized stigma 12. Self-stigma has also been defined as a type of identity transformation that might lead to the loss of previously held (positive) beliefs about the self, which in turn yields negative consequences for the person such as diminished self-esteem and self-efficacy 24. In this systematic review, we focused exclusively on publications containing data on any of the above-mentioned three definitions of personal stigma.

Despite the importance of personal stigma, to our knowledge, no systematic review has been published on this topic to date. Therefore, we sought to systematically review the prevalence, correlates and consequences of personal stigma in people suffering from schizophrenia spectrum disorders. Furthermore, we aimed to evaluate whether quantitative or qualitative differences in personal stigma exist depending on the illness phase, hypothesizing that personal stigma would increase with increasing illness duration and experience. We further aimed to assess whether interventions have been tested specifically targeting personal stigma in patients with schizophrenia spectrum disorders. Finally, we sought to evaluate the strengths and deficiencies of the current evidence base in order to identify gaps that need to be addressed by further research.

METHODS

A systematic literature review was conducted to identify studies reporting on the prevalence, correlates and effects of personal stigma in patients with schizophrenia spectrum disorders. We conducted an electronic PubMed, Medline, and Web of Science search for published, peer reviewed articles using the following keywords: “schizophrenia”/“psychosis”/“prodrome”/“ultra high risk”/“clinical high risk” AND “stigma”/“self-stigma”, without time or language restrictions. Additionally, the reference lists of identified articles and of two reviews on stigma scales 25,26 and two narrative reviews on personal stigma 16,27 were screened to identify additional articles. To be included in this review, articles had to meet all of the following inclusion criteria: a) reporting on personal, not public stigma; b) a majority of the sample (≥70%) diagnosed with schizophrenia or a schizophrenia spectrum disorder, or results for this diagnostic subgroup being reported separately; c) quantitative or semi-quantitative data available on prevalence, correlates or impact of personal stigma or regarding an intervention addressing personal stigma.

With regard to prevalence data, means and percentages were weighted for the number of cases included in a particular study, whenever possible. To calculate weighted percentages of personal stigma dimensions, only proportions of rating scale scores were used. If a scale measured more than two levels (“yes” vs. “no”), reported proportions of scores greater than the scale's midpoint were used. Mean scores of scales were not summarized and are not reported here, as there were too few studies using the same scales or subscales.

To categorize results regarding prevalence of anticipated/perceived and experienced stigma, we used the conceptual framework implemented in the Inventory of Stigma Experiences of Psychiatric Patients 28, containing the following four domains: a) interpersonal interaction, b) public image of mentally ill people, c) access to social roles, and d) structural discrimination. In order to indicate which proportion of patients had anticipated/perceived or experienced stigma at all (in at least one of the categories), one overall domain was created using the domain with the highest reported prevalence of stigma per study and sample.

To categorize results regarding self-stigma, we used the subscales alienation, stereotype endorsement (stereotype agreement), self-esteem decrement and stigma resistance of the Internalized Stigma of Mental Illness Scale (ISMI, 25) and the Self-stigma of Mental Illness Scale (SSMIS, 22). The subscale stigma resistance indicates the individual's ability to defy internalization of stigma and is negatively correlated with all other domains of self-stigma. Since the domains of self-stigma are interrelated and interact hierarchically, no overall category was created.

RESULTS

The search for “schizophrenia” AND “stigma” yielded 377 hits, “psychosis” AND “stigma” 136, “prodrome” AND “stigma” 4, “ultra high risk” AND “stigma” 0, “clinical high risk” AND “stigma” 2, “schizophrenia” AND “self-stigma” 16, and “psychosis” AND “self-stigma” 6 hits, adding up to an overall number of 541 hits. After deleting duplicates, 457 articles were retained, all being in English.

Based on title and abstract, 365 articles were excluded due to lack of relevance. Most of these excluded articles focused on public attitudes and stereotypes toward people with schizophrenia spectrum disorders (public stigma), or the burden on family members and relatives of psychiatric patients, or reported on the need for and the benefit of public anti-stigma initiatives concerning mental illness or schizophrenia. Some discussed the need for “relabeling” schizophrenia in order to decrease stigma 29. Three articles were added after checking additional reference lists. After thoroughly examining 95 studies, 54 articles, published between 1994 and 2011, met our inclusion criteria (Figure 1).

Figure 1.

Review process

Prevalence of personal stigma

Twenty-three (42.6%) of the 54 included publications reported on the prevalence of anticipated stigma (n=12), experienced stigma (n=17), or self-stigma (n=6). Among these, 15 studies reported primarily on correlates of personal stigma, while assessing prevalence was only secondary. Sample sizes ranged from 31 to 1,229 participants (total n=5,871, mean: n=267), mean age ranged from 24.5 (SD=6.3) to 54.3 (SD=16.6) years, and the percentage of male participants ranged between 38 and 71%. Participants were mostly outpatients and without specific focus on or restriction to individual illness stages or severity of disease. While surveys and interviews were implemented in as many as 40 countries, the majority of subjects (71.7%) were assessed in Europe and the USA.

Rates of anticipated/perceived stigma ranged from 33.7% in insurance-related structural discrimination 28 to 80% in interpersonal interactions 30, with a weighted percentage of 64.5% of all patients anticipating/perceiving stigma regarding at least one of the given categories (Table 1).

Table 1.

Prevalence of anticipated/perceived stigmatization

	Study	N	Prevalence (%)
Overall	Angermeyer et al 28	101	69.0
	Berge & Ranney 30	31	80.0
	Cechnicki et al 31	202	58.0
	Dickerson et al 32	74	70.0
	Ertugrul & Ulug 33	60	45.0
	Karidi et al 34	150	66.7
	Kleim et al 35	127	64.0
	Lai et al 36	72	51.0
	Lee et al 37	320	69.7
	McCann et al 38	81	74.0
	Tarrier et al 39	35	53.1
	Thornicroft et al 40	732	64.0
		1985	64.5
Interpersonal interaction
Rejection	Angermeyer et al 28	101	64.4
	Cechnicki et al 31	202	58.0
	Kleim et al 35	127	64.0
	Lai et al 36	72	51.0
Avoidance	Angermeyer et al 28	101	66.3
	Karidi et al 34	150	67.7
Others	Berge & Ranney 30	31	80.0
	McCann et al 38	81	74.0
		865	63.9
Public image of mentally ill people
Media coverage	Angermeyer et al 28	101	66.0
Representation in feature films	Angermeyer et al 28	101	66.0
General	Cechnicki et al 31	202	41.0
	Dickerson et al 32	74	70.0
		478	56.3
Access to social roles
Occupation	Angermeyer et al 28	101	69.0
	Berge & Ranney 30	31	51.6
	Cechnicki et al 31	202	55.0
	McCann et al 38	81	51.4
	Thornicroft et al 40	732	64.0
Partnership	Angermeyer et al 28	101	44.6
	Berge & Ranney 30	31	74.2
	Cechnicki et al 31	202	40.0
	Thornicroft et al 40	732	55.0
Friendship	Berge & Ranney 30	31	53.3
		2244	56.8
Structural discrimination
Insurance	Angermeyer et al 28	101	33.7
Rehabilitation	Angermeyer et al 28	101	42.6
General	Cechnicki et al 31	202	49.0
		404	43.6

For total percentage, mean values were weighted for the number of cases included in a particular study

Concerning experienced stigma, rates ranged from 6% regarding structural stigma 31 to 87% of patients having experienced rejection in interpersonal relations 31, with a weighted proportion of 55.9% of all patients having encountered stigma in at least one of the reported contexts (Table 2).

Table 2.

Prevalence of experienced stigmatization

	Study	N	Prevalence (%)
Overall	Angermeyer et al 28	101	60.0
	Baldwin & Marcus 41	86	29.0
	Botha et al 42	100	65.0
	Brohan et al 43	904	69.4
	Cechnicki et al 31	202	87.0
	Chee et al 44	306	39.0
	Dickerson et al 32	74	55.0
	Ertugrul & Ulug 33	60	45.0
	Jenkins & Carpenter-Song 45	90	96.0
	Karidi et al 34	150	32.5
	Lai et al 36	72	73.0
	Lee et al 37	320	68.0
	Loganathan & Murthy 46	200	22.5
	Sibitz et al 47	157	37.6
	Switaj 48	153	69.0
	Thornicroft et al 40	732	47.0
	Werner et al 49	86	27.4
		3793	55.9
Interpersonal interaction
Rejection	Angermeyer et al 28	101	60.0
	Cechnicki et al 31	202	87.0
	Jenkins & Carpenter-Song 45	90	18.6
	Lee et al 50	320	48.0
Avoidance	Angermeyer et al 28	101	51.5
	Karidi et al 34	150	32.5
	Switaj 48	153	41.2
Offense	Botha et al 42	100	58.0
	Dickerson et al 32	74	55.0
	Loganathan & Murthy 46	200	22.5
	Switaj 48	153	69.0
Others	Botha et al 42	100	39.0
	Cechnicki et al 31	202	50.0
	Jenkins & Carpenter-Song 45	90	47.7
	Karidi et al 34	150	10.0
	Lee et al 37	320	68.0
	Switaj 48	153	59.0
		2659	49.9
Public image of mentally ill people
Media coverage	Angermeyer et al 28	101	38.0
	Dickerson et al 32	74	43.0
	Lai et al 36	72	46.0
	Switaj 48	153	45.0
Representation in feature films	Angermeyer et al 28	101	40.6
Others	Cechnicki et al 31	202	38.0
	Jenkins & Carpenter-Song 45	90	24.4
	Switaj 48	153	63.0
		946	42.8
Access to social roles
Occupation	Angermeyer et al 28	101	19.0
	Baldwin & Marcus 41	86	29.0
	Cechnicki et al 31	202	31.0
	Jenkins & Carpenter-Song 45	90	36.0
	Lai et al 36	72	73.0
	Lee et al 37	320	46.8
	Thornicroft et al 40	732	29.0
Partnership	Angermeyer et al 28	101	21.6
	Cechnicki et al 31	202	42.0
	Jenkins & Carpenter-Song 45	90	32.6
	Thornicroft et al 40	732	27.0
Others	Thornicroft et al 40	732	47.0
	Thornicroft et al 40	732	43.0
		4192	36.9
Structural discrimination
Insurance	Angermeyer et al 28	101	15.8
	Lai et al 36	72	40.0
Rehabilitation	Angermeyer et al 28	101	13.9
	Lee et al 50	320	44.0
Others	Cechnicki et al 31	202	6.0
		796	26.6

For total percentage, mean values were weighted for the number of cases included in a particular study

A weighted percentage of 52.6% of patients reported stigma resistance, 49.2% alienation (shame), 35.2% self-esteem decrement and 26.8% stereotype endorsement/agreement (Table 3).

Table 3.

Prevalence of self-stigma/internalized stigma

	Study	N	Prevalence (%)
General self-stigma	Brohan et al 43	904	41.7
Alienation shame	Botha et al 42	100	77.0
	Lai et al 36	72	47.0
	Sibitz et al 47	157	43.9
	Werner et al 49	86	27.9
		415	49.2
Stereotype endorsement/agreement	Botha et al 42	100	42.0
	Sibitz et al 47	157	15.2
	Werner et al 49	86	30.0
		343	26.8
Self-decrement, self-esteem decrement	Jenkins & Carpenter-Song 51	90	20.9
	Lai et al 36	72	53.0
		162	35.2
Stigma resistance	Botha et al 42	100	84.0
	Brohan et al 43	904	49.2
	Sibitz et al 47	157	63.3
	Werner et al 49	86	32.5
		1247	52.6

For total percentage, mean values were weighted for the number of cases included in a particular study

Correlates and effects of personal stigma

Forty-four studies (81.5%) reported on correlates and/or effects of personal stigma. Among these, 24 examined associations with perceived or experienced stigma and 23 with self-stigma. Included articles were characterized by the heterogeneity of sample characteristics and methods. Sample size ranged from 35 to 1,229 participants (total n=8,132, mean n=185), mean age ranged from 24.5 (SD=6.3) to 64.7 (SD=8.7) years, and the percentage of male participants ranged between 39.7% and 100%. In 32 studies, male participants represented the majority. Most of the studies used a questionnaire design with one measurement date. Participants were recruited from all types of health care facilities, from rural and urban environments, and were in all stages and severity of disease. The majority of studies were carried out in Europe, North America, Australia and Asia, whereas no data reported on South-American or African populations.

In general, variables concerning the psychosocial functioning and general well-being of participants, such as quality of life, empowerment, self-esteem and self-efficacy, were inversely related to personal stigma in the majority of studies. Results showed that, of all the above-mentioned variables, quality of life was most thoroughly examined and was found to be inversely related to perceived/experienced stigma as well as to self-stigma in all studies addressing this relationship. Positive symptoms, depression (only perceived or experienced stigma) and general psychopathology were addressed in several studies and found to be associated with personal stigma in the majority of cases, whereas studies targeting attitudes, beliefs and personality of patients were rare, but produced mostly significant correlations 52,53.

Literacy (i.e., the ability to read and write) was related to perceived/experienced stigma in the only study measuring this relationship 52. Other socio-demographic variables were not associated with perceived/experienced stigma or self-stigma. This also applied to the treatment setting and to most of disease characteristics, including the duration of illness (perceived or experienced stigma only), lifetime number of hospitalizations, negative symptoms (perceived or experienced stigma only) and insight.

Finally, data were equivocal regarding the association of a number of variables with personal stigma. While age was not correlated with perceived/experienced stigma, results were contradictory concerning self-stigma. Karidi et al 34 found higher age to be negatively correlated with self-stigma, whereas other studies reported that higher age was associated with poor stigma resistance 54, more discrimination experience and more stigma-related withdrawal 49. Five of eight studies reported no association between age and self-stigma. Also male sex was found to be related to self-stigma in opposing directions 34,51. Older age of illness onset/first hospitalization was negatively correlated with perceived/experienced stigma in one of two studies 48. Findings regarding self-stigma and age of onset were contradictory, with one study reporting a positive association 34, one reporting a negative association 12 and two studies reporting no association. Furthermore, duration of illness (self-stigma only), negative symptoms (self-stigma only), depression (self-stigma only), treatment compliance (perceived or experienced stigma only) and social functioning (perceived or experienced stigma only) showed ambiguous associations with aspects of personal stigma (Table 4).

Table 4.

Level of the evidence of associations of specific variables with personal stigma

	Correlates of perceived/experienced stigmatization	Correlates of self-stigma
Existing association
Risk factors (positive association)	Literacy 52	Harm avoidance 53
	Relatives' perceived stigma 52 and evaluation of patient's stigma 52	Positive symptoms 12,64,65
	Belief that illness is a disease 52, due to karma 52 or evil spirit 52	General psychopathology 34
	Number of any 52 and of non-medical causal beliefs 52	Social anxiety 66
	Schizophrenia diagnosis 28,55	Social avoidance 12
	Positive symptoms 5,32,33,35,39,48,52,56,57	Withdrawal as coping strategy 12
	General psychopathology 33,35,48,56,57	Insight in effect of medication 67
	Depression 32,35,48,57–59 or guilt 62	Discrimination experience 62
	Social anxiety 60	Emotional discomfort 64
	Disability 33
	Coping strategy: withdrawal 35,57 or secrecy 35,57
	Discrimination experience 62
Protective factors (negative association)	Social integration 32,58,61	Self-directedness 53 and persistence 53
	Quality of life 32,48,55,58,59,61,63	Social integration 64 and support 72
	Empowerment 57,58	Treatment compliance 67–70
	Self-esteem 30,47,59 and self-efficacy 35,57	Hope 65,71 and empowerment 58
	Satisfaction with finances 32	Quality of life 58,65,72,73
	Support 63	Self-esteem (12,54,47,49
	Mastery 63	Social 43,62 and vocational functioning 73
		Recovery 62,74
Lack of association	Being married 33,48,58	Being married 58
	Living alone 48,58	Living alone 58
	Education 32,33,40,48	Education 10,54,64,65,75
	Age 33,35,48,52,56,58	Lifetime number of hospitalizations 34,58,64,65
	Male gender 5,32,33,35,40,48,52,58	Diagnosis of schizophrenia 64
	Ethnicity 5	Insight 12
	Residency 52	Medication compliance 76
	Employment 33,35,40,48,52 and income 32,41,52
	No. of systems of therapy used 52
	Hospital type 40,48
	Belief that illness is due to punishment by god 52, black magic 52
	Belief that illness should be treated by a doctor/hospital 52, traditional healer 52, mantravadi/shaman 52, be cured by going to a temple/place of worship 52
	Number of treatment beliefs 52 or non-medical treatment beliefs 52
	Duration of illness 48,58
	Lifetime number of hospitalization 48,58
	Negative symptoms 5,32,33,35,48,52,56
	Insight 32,35,40,74
Mixed/unclear results	Age at onset/first hospitalization 48,58	Age 10,34,49,54,58,64,65,75
	Treatment compliance 38,59	Male gender 10,34,45,58
	Social functioning 5,32,58,62	Age at onset/first hospitalization 12,34,58,65
		Duration of illness 34,58
		Depression 12,58
		Negative symptoms 64,65

Personal stigma as predictor of outcome

15 studies (27.8%) reported regression coefficients of perceived/experienced stigma (6 studies) and self-stigma (12 studies) as predictor variables for patient outcomes. Perceived/experienced stigma was found to predict higher depression, more social anxiety, more secrecy and withdrawal as coping strategies, along with lower quality of life, lower self-efficacy, lower self-esteem, lower social functioning, less support and less mastery. Self-stigma predicted more depression, more social anxiety, lower quality of life, less self-esteem, less social functioning, less hope, less vocational functioning, less recovery, less support and less treatment compliance (both attendance and participation subscales) (Table 5).

Table 5.

Personal stigma as predictor of outcome

Perceived/ experienced stigma	Self-stigma
Depression 58	Depression 58
Social anxiety 60	Social anxiety 66
Withdrawal 35	Quality of life 72
Secrecy 35	Self-esteem 12
Quality of life 63	Social functioning 43,62
Social functioning 62	Hope 71
Self-efficacy 35	Vocational functioning 73
Self-esteem 77	Recovery 75
Support 63	Support 72
Mastery 63	Treatment compliance: attendance 67
	Treatment compliance: participation 69

Additional results

Our literature search did not yield many studies reporting on or comparing data of patients in different stages of disease (i.e., in initial prodrome, first-episode, multi-episode schizophrenia). Only two studies reported explicitly on associations with personal stigma in first-episode psychosis 39,60. As in chronic samples, patients in the first episode showed increased perceived stigma when they had social anxiety 60. This does not differ from the results concerning the relationship of self-stigma and social anxiety in a sample of elderly patients with multiple illness episodes (mean age=64.7, SD=8.7) 66. Likewise, the results of the second sample of patients with first-episode psychosis concerned prevalence rates and the relationship between positive symptoms and perceived stigma 39, and they did not differ from results regarding patients in later disease stages 5,53,48.

Concerning interventions targeting personal stigma in particular, the search only yielded two trials. The first study found no effect on perceived discrimination of a 6-week group cognitive-behavioral therapy in 21 patients with schizophrenia followed for 18 weeks, but significant improvement of self-esteem 78. No control group was included. The second study, a randomized controlled trial, examined the effect of a 10-week culturally sensitive psychoeducational group program on the perception of stigma in 48 patients with schizophrenia and found a significant decrease in the perceived discrimination score and greater coping skills in the experimental group 79.

DISCUSSION

Results from this systematic review indicate that perceived and experienced stigma as well as self-stigma are phenomena concerning a high percentage of patients with schizophrenia spectrum disorders. An average of 64.5% of patients had perceived stigma, 55.9% actually had experienced stigma and 49.2% reported alienation (shame) as the most common aspect of self-stigma.

Socio-demographic variables are only marginally associated with personal stigma, although some evidence was found for a significant association with literacy. In contrast, it is rather evident that psychosocial factors such as quality of life are inversely associated with personal stigma. The picture concerning illness-related variables is rather equivocal. On the one hand, age of onset, duration of illness and lifetime number of hospitalizations showed few significant or contradictory associations with personal stigma and need to be examined further. On the other hand, positive symptoms, depression and general psychopathology were mostly found to correlate significantly with personal stigma. However, no illness-related variable was unequivocally correlated with personal stigma, except for social anxiety, which was only assessed in two studies, one on perceived stigma 60 and one on self-stigma 66. These results are in line with another study that was excluded from our review due to the heterogeneity of its sample 80. However, the association of depression and social anxiety with personal stigma may be an artifact in the sense that depressed people tend to perceive the reactions of their social environment in a negative way. In this case, the perception of stigmatization would be a symptom of the underlying pathology rather than an independent variable.

We were not able to identify a single study addressing differences concerning the impact of personal stigma on patients in different stages of the illness. The only two studies 39,60 explicitly examining samples of first-episode patients reported results that were similar to those in chronically ill cohorts. However, these observations cannot replace quantitative group comparisons. Thus, the evolution and effects of personal stigma in early illness phases remain an important open research question, particularly given the current focus on early identification and prevention of schizophrenia spectrum disorders and the concerns regarding the public and, especially, personal stigmatization of adolescents and young adults who may be given the label of a disorder they might never develop. Such research is especially pressing, given the introduction of the attenuated psychosis syndrome in Section 3 of DSM-5 81.

The literature search identified only two studies focusing on the development or evaluation of interventions aimed at reducing personal stigma in patients with schizophrenia spectrum disorders. On the one hand, this is surprising, given the large amount of research on intra- and interpersonal variables modifying personal stigma and on its adverse effects, which could guide the development of such interventions. In fact, many studies included in this review discussed the implications of their findings for the development of therapeutic interventions 30. This is in contrast to numerous interventions aimed at reducing public stigma 6,7. On the other hand, our focus on samples with schizophrenia spectrum disorders may have excluded studies conducted in more general samples of mentally ill people. In addition, we may have missed studies that targeted stigma indirectly without explicitly mentioning it. Nevertheless, the lack of interventions targeting personal stigma is striking. Hence, although psychosocial interventions frequently include the general topic of public and personal stigma in psychoeducational and other intervention techniques, the results of this review emphasize the need for interventions more specifically targeting stigma acceptance and incorporation by patients and the increase of stigma resistance among patients. This is especially relevant since the success of anti-stigma initiatives aimed to reduce public stigma has been quite limited 82,83. By contrast, one pilot study in individuals at clinically elevated risk for psychosis suggested that general psychoeducation can help reduce self-stigma, which in that study was not a primary focus 84.

The findings of this review have to be interpreted within its limitations. These include the small sample sizes in a number of the included studies, the use of diverse designs and rating scales, and the selection of often highly heterogeneous outcome and predictor variables. Moreover, comparison groups were generally not available, precluding an assessment of the specificity or quantitative differences of the findings in patients with schizophrenia spectrum disorders compared to other mental disorders.

In summary, perceived and experienced stigma, as well as self-stigma, are frequent in patients with schizophrenia spectrum disorders. Ten years after Link and Phelan called for the development of “multifaceted multilevel interventions” to produce “real change” 21 in stigma-related processes, the requested descriptive research on underlying factors and characteristics to inform the development of such interventions has been done. The practical implementation of these interventions, however, is the next important step, seeking to optimize outcomes through better social integration and functioning. It is hoped that the next decade will see major strides in this direction.