Elsevier

Schizophrenia Research

Volume 122, Issues 1–3, September 2010, Pages 232-238
Schizophrenia Research

Self-stigma, empowerment and perceived discrimination among people with schizophrenia in 14 European countries: The GAMIAN-Europe study

https://doi.org/10.1016/j.schres.2010.02.1065Get rights and content

Abstract

There is a growing interest in examining self-stigma as a barrier to recovery from schizophrenia. To date, no studies have examined mental health service user's experiences of self-stigma throughout Europe. This study describes the level of self-stigma, stigma resistance, empowerment and perceived discrimination reported by mental health service users with a diagnosis of schizophrenia or other psychotic disorder across 14 European countries. Data were collected from 1229 people using a postal survey from members of mental health non-governmental organisations. Almost half (41.7%) reported moderate or high levels of self-stigma, 49.2% moderate or high stigma resistance, 49.7% moderate or high empowerment and 69.4% moderate or high perceived discrimination. In a reduced multivariate model 42% of the variance in self-stigma scores was predicted by levels of empowerment, perceived discrimination and social contact. These results suggest that self-stigma appears to be common and sometimes severe among people with schizophrenia or other psychotic disorders in Europe.

Introduction

Self-stigma is a process of identity transformation wherein a person loses their previously held or desired identities e.g. as a partner, friend, parent, employee etc to adopt a stigmatised view of themselves (Yanos et al., 2008). It is one of a range of personal responses to mental illness stigma. Other responses include energisation, righteous anger or no observable response (Corrigan and Watson, 2002). Self-stigma is also referred to as internalised stigma (Van Brakel et al., 2006).

In studies involving participants with a diagnosis of schizophrenia or other psychotic disorders, self-stigma has been associated with reductions in protective psychological variables including hope (Yanos et al., 2008), self-esteem (Lysaker et al., 2007, Lysaker et al., 2008, Ritsher et al., 2003, Watson et al., 2007), (Yanos et al., 2008), self-efficacy (Vauth et al., 2007, Watson et al., 2007), empowerment (Ritsher et al., 2003, Vauth et al., 2007), morale (Ritsher and Phelan, 2004) and recovery beliefs (Ritsher et al., 2003). It is associated with lower quality of life (Lysaker et al., 2007, Vauth et al., 2007) and the attribution of personal responsibility to the cause of illness (Mak and Wu, 2006), as well as an increase in avoidant coping strategies, specifically withdrawal and secrecy (Vauth et al., 2007). It has been linked with a reduced likelihood of seeking help from psychological services in a sample of college students (Vogel et al., 2006) and lower psychosocial treatment compliance in those with a diagnosis of depression (Fung et al., 2007).

Clinically, self-stigma is associated with an increase in symptom severity (Mak and Wu, 2006), positive symptoms(Lysaker et al., 2007, Yanos et al., 2008), negative symptoms (Lysaker et al., 2009, Lysaker et al., 2007) and depressive symptoms (Ritsher et al., 2003, Vauth et al., 2007, Yanos et al., 2008), as well as a reduction in insight (Lysaker et al., 2007, Mak and Wu, 2006), social functioning (Lysaker et al., 2007)and attentional functioning (Lysaker et al., 2009).

The above literature highlights the emerging focus on self-stigma as a potential barrier to recovery from schizophrenia. A growing body work reports on interventions targeted towards reducing self-stigma (Corrigan, 2002, Corrigan and Calabrese, 2005, Corrigan and Watson, 2002, MacInnes and Lewis, 2008, Mak and Wu, 2006, Ritsher and Phelan, 2004, Rusch et al., 2006b, Yanos et al., 2008). Recent work has taken a collaborative approach to investigating service users' experiences of discrimination globally (Thornicroft et al., 2009). However, to date such an approach has not been taken in considering self-stigma. There is an identified need for increased awareness of the burden of mental illness stigma across Europe e.g. (Marusic, 2004). Before considering the utility of self-stigma as a marker of burden of illness, a barrier to recovery and an area for intervention, it is vital to ascertain the degree to which self-stigma is reported across Europe. This study also considered the levels of perceived discrimination, empowerment and stigma resistance across Europe. These additional variables were selected as existing evidence suggests that these variables may be particularly useful to consider in building a picture of self-stigma (Ritsher and Phelan, 2004, Rusch et al., 2006a, Sibitz et al., 2009).

This study aims to (1) describe the level of self-stigma experienced by mental health service users with a diagnosis of schizophrenia or other psychotic disorders in Europe (2) examine the degree to which stigma resistance, perceived discrimination, empowerment and socio-demographic, illness-related and social contact variables are associated with self-stigma in this sample (3) draw implications for European mental health services.

Section snippets

Study design

The study had a cross-sectional design where participants completed a postal survey measuring levels of self-stigma, stigma resistance, empowerment and perceived discrimination at one point in time. Surveys were sent through member organisations of the Global Alliance of Mental Illness Advocacy Networks (GAMIAN-Europe). GAMIAN-Europe is a patient lead organisation which represents the interests of persons affected by mental illness (GAMIAN-Europe, 2007). Its main objectives include: advocacy,

The sample

1340 surveys were returned from 21 sites. 1229 surveys from 14 sites were included for analysis, excluding 111 surveys from 7 sites where < 30 surveys were returned by participants with a diagnosis of schizophrenia or other psychotic disorder. For the 14 included sites, the overall response rate was 72%. Response rates within country ranged from 40% in Sweden to 94% in the Ukraine (site a). There was a midpoint response rate of 75% in Poland. Participants in this sample had a self-reported

Discussion

This study primarily examined the degree to which mental health service users with the diagnosis of schizophrenia, psychosis or schizoaffective disorder report self-stigma in 14 European countries. 41.7% of the total sample reported moderate or high levels of self-stigma. The majority of participants felt that the public hold negative attitudes towards mental health service users (69.4% reported moderate to high levels of perceived discrimination) and the degree to which this belief is held was

Limitations of the study

This study was designed to provide evidence on the levels of self-stigma across Europe. As a survey of members of mental health charity organisations, one could argue that these participants are more comfortable with the identity of mental health service user than individuals who are not involved in such activities. It may also indicate that they are adopting a stigma coping strategy based on educating others or on advocacy rather than one based on secrecy or avoidance. Adopting a coping style

Conclusions

These findings show that self-stigma appears to be common and sometimes severe among people with schizophrenia and other psychotic disorders in Europe. The tailoring of interventions to support the elements of self-stigma which are most problematic for the group, be it alienation, stereotype endorsement, social withdrawal or discrimination experience merits further consideration.

The strong association between self-stigma and empowerment and social contact generates the future hypothesis that

Role of funding source

GAMIAN-Europe was supported by unrestricted educational grants from Eli Lilly and Lundbeck. EB and GT are members of the NIHR Biomedical Research Centre at the South London and Maudsley NHS Foundation Trust/Institute of Psychiatry (King's College London), and receive support for an Applied Research Programme from the National Institute for Health Research, UK. All three funding agencies had no further role in the study design; in the collection, analysis and interpretation of data; in the

Contributors

EB, RE, NS and GT contributed to the design of this study and writing of the protocol. EB and RE co-ordinated the recruitment of participants. EB undertook the statistical analysis and prepared a first draft of the manuscript. All authors contributed to and have approved the final manuscript.

Conflict of interest

All authors declare they have no conflicts of interest relevant to the preparation of the manuscript.

Acknowledgments

The authors thank Dr Morven Leese who provided guidance on the statistical analyses and reviewed the manuscript. The authors also thank all GAMIAN-Europe members who participated in this study. This manuscript was prepared on behalf of the GAMIAN-Europe Study Group which includes the following individuals and organisations: Belgium: Flemish Mental Health Association (VVGG), Mr Paul Arteel. Bulgaria: National Centre for Health and Social Studies, Mr Mario Sarbinov. Croatia: Happy Families

References (31)

  • K.M.T. Fung et al.

    Measuring self-stigma of mental illness in China and its implications for recovery

    International Journal of Social Psychiatry

    (2007)
  • GAMIAN-Europe. http://www.gamian.eu/....
  • B.G. Link

    Understanding labeling effects in the area of mental disorders: an assessment of the effect of expectations of rejection

    American Journal of Community Psychology

    (1987)
  • B.G. Link et al.

    The effectiveness of stigma coping orientations: can negative consequences of mental illness labeling be avoided?

    Journal of Health and Social Behavior

    (1991)
  • P.H. Lysaker et al.

    Toward understanding the insight paradox: internalized stigma moderates the association between insight and social functioning, hope, and self-esteem among people with schizophrenia spectrum disorders

    Schizophrenia Bulletin

    (2007)
  • Cited by (388)

    View all citing articles on Scopus
    1

    Members listed at end of the paper.

    View full text