Self-stigma interventions for people with schizophrenia

Stigma can be defined as an “attribute that is deeply discrediting” which turns a person from “a whole and usual person to a tainted, discounted one.” (Goffman, 1963, pg. 3).

Corrigan et al. (2002) have expanded on this and suggest that there are two types of stigma: public stigma and self (internalized) stigma:

Public stigma comprises of negative stereotypes, prejudice and discrimination from the public towards the stigmatized group
Self-stigma is when a person becomes aware of these negative stereotypes, agrees with them and begins applying them to one’s self.

Self-stigma has been associated with a variety of negative outcomes. In a systematic review conducted by Livingston et al. (2010) it was found that self-stigma was associated with poorer self-esteem, hopelessness, reduced self-efficacy and disempowerment. Furthermore, it can also serve to exacerbate existing mental health problems, increase social avoidance and impair recovery (Corrigan and Watson, 2002).

It has been argued that those with a schizophrenia-spectrum diagnosis experience greater levels of self-stigma than those with other severe mental illness (SMI) diagnoses. This is primarily due to the recognition that those diagnosed with schizophrenia are viewed most negatively by the public (Wood et al., 2014), experience the greatest amount of discrimination (Dinos et al., 2004) and encounter the most rejection (Lundberg et al., 2008). This is supported by research which has found that almost half (47.1%) of participants in a large European sample with a schizophrenia-spectrum diagnoses reported experiencing self-stigma (Brohan et al., 2010).

Given its commonality and the adverse outcomes associated with self-stigma, there has recently been an increasing interest in the development of interventions to reduce self-stigma.

Research on the effectiveness of these interventions is somewhat mixed with some studies finding that the interventions had a positive effect on outcomes such as engulfment, hopelessness, quality of life, self-esteem and personal recovery (Fung et al., 2011; McCay et al., 2007) whilst others have found the interventions to have little impact at all on either primary outcomes of self-stigma or secondary outcomes (Link et al., 2002; Morrison et al., 2016). The research available which focusses on self-stigma interventions for SMI specifically is even more limited, with findings remaining skeptical of the success of these self-stigma interventions (Griffiths et al., 2014; Mittal et al., 2014; Yanos et al., 2015).

To date, no systematic reviews have been conducted to examine the efficacy of self-stigma interventions for people with a schizophrenia-spectrum diagnosis. Further to this, there has been no narrative exploration of the change mechanisms involved in a self-stigma intervention.

Given the limited literature, a systematic narrative review and meta-analysis was conducted. The narrative review aimed to:

Examine study quality and risk of bias of included trials, compare and contrast internalized stigma interventions for their key mechanisms of chance, and scrutinize study outcomes and measures used to assess outcome.

The meta-analysis aimed to:

Examine the efficacy of the internalized stigma interventions on the primary outcome of internalized stigma, and other secondary outcomes.

Self-stigma can lead to poorer self-esteem, hopelessness, reduced self-efficacy and disempowerment.

Methods

Search strategy and study selection

This review included studies:

Where at least 50% of participants met criteria either for a schizophrenia-spectrum diagnosis or threshold criteria for early intervention in psychosis studies
Which examined self-stigma as an outcome
Which examined a psychosocial intervention aimed at reducing self-stigma
In English language
With a sample of adults aged 16-65
With a randomised controlled trial (RCT), controlled trial (CT) or cohort study (CS)
Of effectiveness and efficacy

Studies were excluded if at least 50% of participants or more experienced psychosis as a secondary diagnosis or were observational. No criteria were specified in regard to severity or duration of illness.

Three electronic databases were searched: PsychINFO, EMBASE and Medline.

Data extraction included extracting data about: type of intervention, duration of intervention, demographics, consent and dropout rates and statistical analyses.

Analysis

Narrative synthesis offered a framework for structuring a systematic review which included non-RCT studies. There were four key elements to this:

Developing a theory of how the intervention works, why and for whom
Developing a preliminary synthesis of findings of included studies
Exploring relationships in the data
Assessing the robustness of the synthesis

Meta-analysis was used to integrate available effects extracted from the RCTs included in the review. A meta-analysis was conducted where at least two RCTs contributed to the examined outcome.

Results

A total of 12 studies were included in the review. Of these, 7 were RCTs and 5 were controlled trials (CT) or cohort studies (CS). Only four studies included participants exclusively with a schizophrenia-spectrum diagnosis. All studies were conducted in outpatient settings and the majority of participants were male and middle aged.

Characteristics of self-stigma interventions used

The average number of sessions offered by the RCTs was 12.71 and 11.4 by CTs and CSs
The majority of studies utilised a group format intervention (92%). Only one study offered individual therapy
The majority of studies (67%) used some form of psychoeducation and/or CBT.

Though most studies adhered to the principles of psychoeducation and/or CBT, within this there was a good amount of variation of what the self-stigma interventions consisted of. For instance, some studies drew directly on the principles of CBT whilst others delivered an adapted CBT approach entitled Narrative Enhancement Cognitive Therapy (NECT). Others combined psychoeducation, CBT and social skills training and others still developed peer-led interventions. Primarily, however, the theory underpinning these interventions was in line with the principles of psychoeducation and/or CBT.

Examination of primary and secondary outcomes

The primary outcome of self-stigma was examined by all studies included in the review. Both CTs and one CS found significant improvements in self-stigma. None of the RCTs found significant improvements in self-stigma. A meta-analysis was conducted with five RCTs that had available data; analysis did not suggest that there was a statistically significant improvement in self-stigma. There was also no statistically significant improvement in self-stigma at follow up.

It is worth noting that there was very little consistency in the secondary outcomes utilised by the studies included in the review. The most frequently used were self-esteem (50%), coping skills (42%), empowerment (42%) and functioning (42%). In order to focus on the most important secondary outcomes, outcomes which had at least three or more studies contributing to an outcome were examined in the meta-analysis.

RCTs examining depression, empowerment, hopelessness, recovery and self-esteem were entered into a meta-analysis to examine the end of therapy outcome of self-esteem. No significant findings were identified.

Self-efficacy was examined by 3 RCTs; 2 found a significant improvement in self-efficacy at the end of therapy. Two RCTs with available data were entered into a meta-analysis; self-efficacy was shown to be significantly improved by these self-stigma interventions, although this was not maintained at follow-up.

Two RCTs and one CT examined insight. The CT and one of the RCTs found a significant difference in insight post intervention. The two RCTs were entered into a meta-analysis; insight was shown to be significantly improved by these self-stigma interventions, although this was not maintained at follow-up.

Self-stigma interventions were found to significantly improve self-esteem, self-efficacy and insight for people with a schizophrenia-spectrum diagnosis.

Conclusions

A narrative synthesis revealed that the most commonly used techniques in self-stigma interventions were psychoeducation, thought-challenging, connecting with peers and social skills training.

The primary outcome of self-stigma was found to be significantly improved by two CTs and one CS but was not significant in the meta-analysis at end of therapy follow up.

This meta-analysis identified that self-efficacy and insight were all significantly improved by self-stigma interventions. Meta-analyses revealed that depression, empowerment, hopelessness, recovery and self-esteem did not seem to be impacted by self-stigma interventions.

Strengths and limitations

Whilst this study should be commended for making the first attempt to synthesize the data available from a limited evidence base focusing on self-stigma interventions for people with a schizophrenia-spectrum diagnosis, it is important to note that the study is not without its methodological flaws.

Primarily, the study is limited due to the very small number of studies included in the narrative review and meta-analysis. There were only 5 studies eligible for inclusion in the meta-analysis and these were all with small samples (N range 27-66). Further to this, those studies that were included were small in nature, which some have argued can lead to a failure to detect a modest intervention effect due to the lack of power within each of the individual studies (Borenstein et al., 2009).

The nature of the studies included is also an important consideration; through excluding non-English studies, the findings of this review are difficult to generalise outside of Western societies. Moreover, excluding studies which focus on participants with a secondary diagnosis of schizophrenia eliminates the ability to be able to compare and contrast how these interventions might work on this group of people. Despite this, the authors should be commended for including both unpublished papers and papers that are about to be published, in an attempt to avoid publication bias.

Summary

This narrative review and meta-analysis has hinted that self-stigma interventions could show promise in alleviating self-stigma in people with a schizophrenia-spectrum diagnosis.

However, at present there are an alarmingly small number of studies which have researched self-stigma interventions in severe mental illness, and a smaller number still that have explored self-stigma interventions for those with a schizophrenia-spectrum diagnosis specifically.

It seems to me that we need a much greater amount of research into these issues before we can conclude confidently whether self-stigma interventions are effective for people with a schizophrenia-spectrum disorder. Future research, as the authors point out, should aim to utilise large scale RCT methods and should include outcome measures such as self-stigma, recovery, self-esteem, empowerment, self-efficacy and coping skills.

Who should be funding and leading this missing anti-stigma research?

Links

Primary paper

Wood L, Byrne R, Varese F, Morrison AP. (2016) Psychosocial interventions for internalised stigma in people with a schizophrenia-spectrum diagnosis: A systematic narrative synthesis and meta-analysis. Schizophrenia Research 2016. http://dx.doi.org/10.1016/j.schres.2016.05.001