Advocates of all stripes agree; the stigma of mental illnesses is egregious in effect and must be challenged to broaden life opportunities of adults and children with psychiatric disorders for whom these prospects are deserving. Advocates have partnered with investigators to better understand stigma. As a result, careful research programs have begun to yield insights about what stigma is and how it can be diminished. Still, advocates, needing to address the problem now, have become impatient with science and have put together programs meant to erase mental illness stigma, sometimes ahead of the data. Governments supporting broad-based and large scale stigma change programs include active efforts in Australia, Canada, the UK, as well as dozens of ad hoc programs supported by the World Psychiatric Association. In addition, most of the fifty states in the US now have anti-stigma programs supported by state funds (see the Resource Center supported by the Substance Abuse and Mental Health Services Administration (SAMHSA)).
In light of these efforts and priorities comes the central question of this paper: What is the evidence for anti-stigma programs? There are recent, fairly comprehensive reviews of evidence that describe the impact of anti-stigma programs (e.g., Arboleda-Florez & Sartorius, 2008
; Corrigan, 2005
; Hinshaw, 2007
; Thornicroft, 2006
). In this light, Link and colleagues (2004)
provided an excellent review of published stigma measures. Absent from the paper, however is consideration of how to integrate these and other measures in the evaluation
of stigma change programs. It is not the quantity of empirical work on measurement but its quality that is considered herein. Unfortunately, the prior reviews suggest that the quality of measurement and design of studies assessing anti-stigma programs have been wanting. Hence, the primary reason for this paper: to consider and advance the sophistication and rigor of measures that assess the impact of anti-stigma programs.
Stigma is a complex and multi-layered phenomenon so we begin the paper with a brief but careful discussion of how research has come to know stigma and its relevance to mental illness. This summary is followed by an outline of ways to change stigma, with specific focus on public stigma. This too has become a large arena; so consistent with our earlier work, we focus on three anti-stigma strategies: protest, education, and contact (Corrigan & Penn, 1999
). We then consider questions that need to assume center stage of stigma-change research: community based participatory research, social desirability, and external validity. Given the convergence of these ideas, we summarize five domains of assessment: behavior, penetration, psychological perspectives, knowledge, and physiological/information processes. We end with recommendations for future measurement and research.
Where is Clinical Psychology in this Effort?
Clinical psychology has mostly been at the sidelines regarding stigma and stigma change programs, despite research in this area having mushroomed. Our review of the literature from 1998 to 2008 showed journal articles on stigma in general have quadrupled from 178 to 641, with about one third of these focusing on the stigma of mental illnesses (in 2008, 231/641). No more than nine of these articles were found in journals with Clinical Psychology on its masthead (which is approximately 1.4% of articles at most during this time) though we should not assume few papers in clinical psychology journals mean few clinical psychologists working in anti-stigma program research. The issue of stigma would also seem to overlap with community psychology both theoretically and methodologically; 37.8% of Division 27 members (Community Psychology) report their subfield as clinical psychology (APA, 2008). However, frequency of abstracts mentioning stigma in these journals never exceed 2% (the highest was 12 in 2008).
The absence of clinical psychology’s participation in understanding mental health stigma, and in developing and evaluating anti-stigma programs, is unfortunate for several reasons. Clinical psychologists are often leaders in understanding the symptoms and disabilities of mental illnesses. Along with these factors, stigma is now recognized as a significant predictor of course and impact of mental illnesses. Consider, from this perspective, extraordinary epidemiological findings: 50 to 75% of people with psychiatric disorders, who might benefit from mental health services, do not receive them. Equally sobering are findings that suggest from half to two thirds of people drop out of treatment prematurely (cf Corrigan, 2004b
for a review of relevant literature). Stigma has been implicated as one of several systemic factors that explain poor care seeking and service use.
Who is the Focus of this Paper?
Stigma and mental illness are unwieldy concepts. One way to make sense of these constructs is to limit our focus on a group which is especially harmed by mental illness stigma: people with serious mental illnesses. We made this choice because of its public health priority and because of the relative wealth of research and recommendations that may guide this paper (Corrigan, 2005
). What do we mean by serious? Clinical definitions of disease severity have merged with the idea of psychiatric disability to describe serious mental illnesses (Liberman, 2008
), people whose life goals in important spheres (e.g., work, independent living, relationships, wellness) are challenged by mental illnesses. Mental illnesses mean people with Axis I or Axis II disorders in the DSM-IV-TR, other than those primarily representing developmental disabilities, substance abuse disorders, or physical trauma. Prominent among these are the psychoses: schizophrenia, but also major depression and bipolar disorder with psychotic features. Consistent with the zeitgeist
, in this paper we alternately refer to people with serious mental illnesses or consumers of clinical services for these illnesses.
From here, the paper examines brief definitions of stigma, distinguishing self and public stigma, and limits the text to change approaches for public stigma. The paper then segues into its central goal; incorporating socially valid instruments that will demonstrate the impact of these programs. Specific ideas circumscribing rigorous measurement follow and are the large portion of the remainder of the paper.