Stigma, Identity and Recovery

1. Stigma, Identity and Recovery

2. Philip T. Yanos, Ph.D. Associate Professor Psychology Department John Jay College of Criminal Justice City University of New York

3. Special Thanks To: • Research Partners: David Roe (University of Haifa), Paul Lysaker (Roudebush VA, Indiana-Purdue University) • Doctoral Students: Michelle West, Stephen Smith, and Ginny Chan • NIMH-funding (R34MH082161)

4. Take Home Message: Preview • Stigma impacts the lives of a significant number of people with mental illness not just by restricting opportunity, but by impacting identity • Identity and identity change play key roles in the recovery process • There is evidence that stigmatized identities can be changed by peer-led and professional means, though best practices are yet to be determined

5. Are Mental Health Consumers Aware of Stigma? • Definitive yes • Wahl (1999) surveyed 1301 mental health consumers in US- found that 90% of mental health consumers had noted stigmatizing views about mental illness in casual encounters and in media reports • Studies using the perceived devaluation-discrimination scale (Link) tend to find that 60-70% of people diagnosed with mental illness agree that “most people” hold stigmatizing views and would reject a person with mental illness as a friend, etc. (Lundberg et al., 2007; Kleim et al., 2008)

6. How Do Mental Health Consumers Become Aware of Stigma? • Link’s modified labeling perspective: generally-held stereotypical attitudes about mental illness are absorbed during childhood, take on personal relevance when a person is diagnosed, and gain increased salience • According to this perspective, it is not necessary for one to even experience stigma or discrimination directly to become aware of stigma • However, social rejection experiences may compound it

7. Social Rejection and Discrimination • Types of social rejection experiences commonly endorsed include being treated “differently” by friends or being aware that friends are uncomfortable- 70% of mental health consumers reported these types of experiences in one study (Lundberg et al., 2007) • Concept of “microaggressions” (Sue et al., 2008) may also be relevant here- everyday unconscious, subtle, and covert verbal, and nonverbal slights • More overt discrimination experiences are also reported, though less frequently- in Wahl’s survey, roughly 50% reported being turned down for a job because of mental illness; similarly Corrigan et al. (2003) found that roughly 50% of mental health consumers reported experiencing discrimination, with most common areas being work (51%), housing (32%), and law enforcement (27%)

8. Do Social Rejection Experiences Increase Stigma Awareness and Concern? • Social rejection experiences have been found to be positively correlated with degree of stigma concern in several studies (e.g., Lundberg et al., 2007; Yanos et al., 2001) • In analyses I conducted in 2001, a key negative interaction predictive of more stigma concern was “being treated like there is something wrong with you”

9. What is the Impact of Awareness of Stigma on Mental Health Consumers? • There are different possible responses • Corrigan and Watson (2002) developed a model allowing for three different responses: indifference, righteous anger, and self-stigma

11. Indifference • Can result if there is both low perceived legitimacy + low group identification or if there is high perceived legitimacy + low group identification • Option one could occur if the individual rejects is able to “deflect” stigma as not being legitimate (Thoits, 2011) • Option two could occur in situations in which a person endorses stigma as being legitimate but does not self-identify as having a mental illness (many professionals would categorize this person as having poor insight or awareness)

12. Righteous Anger • Occurs in situations in which there is strong group identification with other mental health consumers and simultaneous rejection of the legitimacy of stigmatizing views • Anger is directed at others for holding unjust stigmatizing views (“challenging” according to Thoits) • A variant of this response is one in which mental illness or experiences associated with the diagnosis are seen as potential advantages (e.g., by giving one greater access to the range of human experience and life difficulties) • This perspective has been found to be advanced by many consumer-run agencies, especially those that take on a “psychiatric survivor” perspective (Onken & Slaten, 2000)

13. Self/Internalized-Stigma • Occurs when an individual believes that there is legitimacy to stigmatizing views (people with mental illness are dangerous, incompetent, and cannot recover) and identifies as a member of the group (these views apply to me because I have a mental illness) • In some professional circles, this individual might be viewed as someone with “good insight” because they accept the mental illness label

14. Why Do Some People Accept the Legitimacy of Stigma? • In Corrigan & Watson model, a key factor is “collective representations” or beliefs about how the world works which are absorbed through social influences • A key representation believed to affect self-stigma is the “Protestant work ethic,” or the belief that success is largely the result of hard work • Idea is that the compromised life circumstances that are often experienced by people with mental illness are more likely to be seen as the result of personal failure if this value set is held • Degree of acceptance of this can be influenced by cultural background and other factors • Rusch et al. (2010) found support for this view- mental health consumers’ degree of endorsement of the Protestant ethic was significantly related to their degree of self-stigma

15. Identity • Identity: social categories people use to describe themselves and that others use to describe them • “I am a ______” (e.g., “father,” “professional,” “gangster”) • “S/he’s a _______” (e.g., “great parent,” “criminal,” “spiritual person”) • Assumption of symbolic interactionist theory is that our own identity will be influenced by the categories that others impose on us

16. Self-Stigma = Stigmatized Identity • Through a variety of processes, identity of having a mental illness takes over and supersedes other identity categories (e.g., musician, parent, spouse, veteran, spiritual-person, etc.) • Goffman- people diagnosed with mental illness develop a “spoiled” identity • Lally- “role engulfment”: acceptance of the “patient role” as primary definition of self

17. How Do People Come to Develop a Stigmatized Identity? • Lally described the process of “role engulfment” • Transitional events leading to this include hearing a diagnosis, applying for disability and resigning oneself to the permanence of the diagnosis/illness • The statements of mental health professionals may also weigh heavily here- making statements and taking actions that reduce people to diagnoses, ignore their strengths, and discount or minimize their successes, leading to “spirit breaking” (Everett, 2000; Deegan, 2000)

18. Stigmatized Identity Narrative • I perceived myself, quite accurately, unfortunately, as having a serious mental illness and therefore as having been relegated to what I called "the social garbage heap.“… I tortured myself with the persistent and repetitive thought that people I would encounter, even total strangers, did not like me and wished that mentally ill people like me did not exist. Thus, I would do things such as standing away from others at bus stops and hiding and cringing in the far corners of subway cars. Thinking of myself as garbage, I would even leave the sidewalk in what I thought as exhibiting the proper deference to those above me in social class. The latter group, of course, included all other human beings. (Kathleen Gallo, “Self-Stigmatization,” 1994)

19. How Do We Measure Degree of Self-Stigma? • Measures of internalized (or self-) stigma: • Ritsher: Internalized Stigma of Mental Illness Inventory • Corrigan: Self-Stigma of Mental Illness Scale • Lally: Engulfment Scale • McCay: Modified Engulfment Scale

20. Sample Items from ISMI • “Mentally ill people tend to be violent.” (Stereotype Endorsement) • “I am embarrassed or ashamed that I have a mental illness.” (Alienation) • “People with mental illness make important contributions to society.” (Stigma Resistance) • “Because I have a mental illness, I need others to make most decisions for me.” (Stereotype Endorsement)

21. How Commonly Do People Develop Self-Stigmatized Identities? • Using predetermined cutoff totals on the ISMI, findings consistently hover in the 20-40% range • Brohan et al. (2010) surveyed 1229 mental health consumers diagnosed with schizophrenia in 14 European countries and found that 41% had elevated internalized stigma • Among 1182 diagnosed with bipolar disorder or depression, 22% had elevated internalized stigma • Study of mixed diagnostic group of 144 in New York and Indiana found that 36% had elevated internalized stigma (West et al., 2011) • Study with outpatient veterans found that 28% had elevated internalized stigma (Ritsher &Phelan, 2004) • Thus, findings demonstrate that, while most mental health consumers do not develop stigmatized identities, a significant subgroup (roughly a third) do

22. Are Any Groups Particularly Prone to Self-Stigma? • Consistent predictors of self-stigma related to age, ethnicity, gender, etc., have not been identified • In Brohan et al.’s study, a diagnosis of schizophrenia and female gender were related to more self-stigma • Country of origin was also related to self-stigma, with Greece showing the highest ISMI scores and Slovenia having the lowest • In our research, US Veterans had higher levels of self-stigma, which we hypothesized to be related to heightened stigma concern in military culture

23. What is the Impact of Having a Self-Stigmatized Identity? • Corrigan and Watson’s model proposes that self-stigma leads to diminished self-esteem (belief in one’s own self-worth) and self-efficacy (belief in one’s ability to handle problems and accomplish goals) • My colleagues (Roe, Lysaker) and I have developed a model proposing a more profound and pervasive effect of self-stigma on the recovery process

24. How Does Internalized Stigma Impact Recovery? • We hypothesized that persons who are both aware that they have a mental disorder and internalize stigmatizing views related to this status develop diminished hope and self-esteem • We hypothesized that diminished hope and self-esteem will predict impaired recovery-related outcomes

25. Recovery • A multidimensional construct with objective and subjective components • Objective components: include social functioning (employment, social relationship), community integration (participation in community activities) • Subjective components: well-being, life satisfaction, hopefulness and self-esteem

26. Overlap Between Subjective and Objective Aspects of Recovery

27. Model for Impact of Internalized Stigma on Recovery-Related Outcomes (Yanos, Roe & Lysaker, 2010) Internalized-Stigma Awareness Hope and Self-Esteem Coping and Engagement in Treatment Vocational Outcomes Social Interaction Symptom Severity Suicide Risk

28. Summary of Model • Internalized stigma plays a major role in degree of hope and self-esteem, which influences engagement in treatment and willingness to take an active role in managing one’s illness (coping), decreases social interaction, and indirectly compromises vocational outcomes (as a result of belief that it is not possible to get better and less effort invested in dealing with work-related challenges) • Partly seeks to explain the phenomenon I and others have observed where individuals seem to have “given up” on their chances for recovery and therefore are no longer willing to seek employment, social relationships, etc., even when they are symptomatically stable and have the necessary skills/abilities to move forward

29. Study 1 • Insight has been found to be associated with both positive outcomes (better functioning) and negative outcomes (greater depression/hopeless), depending on the study • Does self-stigma moderate the impact of insight on functioning and hope, such that individuals with high insight and low self-stigma have better outcomes than individuals with high insight and high self-stigma?

30. Internalized Stigma Moderating Impact of Awareness (Lysaker, Roe & Yanos, 2007)

31. Study 1 Take Home Message • “Advantage” of insight is lost when it is combined with self-stigma • People with high insight and high self-stigma have greater symptoms, less hope, lower self-esteem, and worse social relationships than both people with high insight/low self-stigma, and people with low insight/low self-stigma

32. Study 2 • Path analysis examining support for overall model of effects of self-stigma on outcomes related to recovery

33. Test of Model for Impact of Internalized Stigma on Recovery-Related Outcomes(Yanos, Markus, Roe, & Lysaker, 2008) Internalized-Stigma Hope and Self-Esteem -.59* -.51* Avoidant Coping Psychotic Symptoms -.49* -.01 -.26* Social Avoidance Depressive Symptoms .37*

34. Study 2 Take Home Message • Most of the relationships we hypothesized were supported • Self-stigma strongly predicted lower hope/self-esteem, which in turn predicted more avoidant coping, depressed mood, and greater social avoidance • Controlling for psychotic symptoms did not affect the strength of these relationships

35. Study 3 • Examined the effect of self-stigma on vocational outcomes using longitudinal data • Data came from a vocational rehabilitation project where all participants where offered work opportunities and followed up 5 months later

36. Test of Model for Impact of Internalized Stigma on Vocational Outcomes (Yanos, Lysaker, & Roe, 2010) Baseline Internalized- Stigma (Controlling For Symptoms) -.34* 5-month Improvement in Vocational Functioning

37. Take Home Message from Study 3 • Degree of internalized stigma significantly predicted degree of vocational functioning 5 months later, even when controlling for symptoms

38. Findings from Other Researchers Around the World • Replication of association with lower self-esteem (Corrigan, Watson & Barr, 2006; Werner et al., 2008)—USA; Israel • Internalized stigma is associated with avoidant coping and lower self-efficacy (Kleim et al., 2008)—Germany • Internalized stigma is associated with poorer medication and treatment adherence (Adewuya et al., 2009; Tseng et al., 2009)—Nigeria; China • Internalized stigma is associated with impaired social functioning (Munoz et al.,2011)—Spain • High perceived stigma combined with high insight are related to increased depressive symptoms, lower self-esteem, and lower quality of life (including some aspects of social functioning) (Staring et al., 2009)—Netherlands

39. Meta-Analysis of Impact of Self-Stigma • Livingston & Boyd (2010) conducted a meta-analysis of 127 studies examining consequences of self-stigma • (Note: they included studies which used the perceived devaluation discrimination scale, which I do not think is a measure of self-stigma) • Significant effects were found for hope (-.58), self-esteem (-.55), self-efficacy (-.54), quality of life (-.47), symptom severity (.41), treatment adherence (-.38), and social support (-.28)

40. Conclusions from Research on Impact of Self-Stigma • Evidence is accumulating for our model • Findings consistently emerge even when controlling for symptoms • Most studies are cross-sectional, but some prospective findings are emerging

41. Can Identity Change? Is Change Related to Recovery? • Little research has been done on this using quantitative measures, but qualitative longitudinal research suggests that the answer to both is yes • Davidson and colleagues (Davidson & Strauss, 1992; Davidson et al., 2005) studied individuals who displayed significant improvement in global functioning over time. They found that these individuals described how constructing a new “sense of self” was an important part of the process of recovery from mental illness • A separate qualitative longitudinal study found that individuals who improved functioning over a 1 year period showed a progression from the identity of “patient” to “person” in their narratives (Roe, 2001)

42. Quantitative Longitudinal Evidence • A study of people who showed significant reductions in self-stigma over 5 months (Lysaker et al., Under Review) found that 38% of the sample showed significant (25% or greater) reductions in self-stigma • Persons who had made significant reductions in self-stigma also significantly improved in self-esteem • A sub-analysis from another recent study I have conducted indicates that improvements in self-stigma are also related to improvements in functioning

43. Interventions for Changing Identity: Peer-Led Services • Theoretical discussions of how peer-led/consumer-run services work emphasize the importance of developing alternatives to the “patient” identity (Mead et al., 2001) • Qualitative research on the impact of participation in the mental health consumer movement supports that participation in these organizations can facilitate recovery by encouraging participants, through rituals of self-disclosure and advocacy, to transform identities of “mental patient” to “consumer advocate” (McCoy & Aronoff, 1994; Onken & Slaten, 2000). • Quantitative research indicates that participation in consumer-led services is related to increased personal “empowerment” which many see as the antithesis of self-stigma

44. RCT of Impact of Peer-Led Services • Segal et al. (2010) randomlyassigned 505 mental health consumers to regular Community Mental Health services or to combined self-help/CMH services and followed them up over time • The combined SHA-CMHAsample showed significantly greater improvements in personal empowerment, self-efficacy and independent social integration • Although not directly assessing self-stigma, this study supports that the empowerment process, seen as a process of taking an active role in one’s life, is facilitated by involvement in peer-led services and is related to improvements in self-efficacy and functioning

45. Are There Professional Interventions Available to Facilitate the Change of Self-Stigma? • Yes, although the area is in its infancy and none are yet “evidence-based” • One thing that we know is that education alone is not enough • Treatment approaches developed that show promise include McCay’s healthy self-concept model, Cognitive Restructuring approaches, and Narrative Enhancement and Cognitive Therapy

46. Professional Interventions: Common Elements • A common element of the professional interventions developed to address self-stigma is the re-examination of beliefs about the self that are influenced by self-stigma • A “cognitive restructuring” approach attempts to alter these views through a systematic examination of the evidence for them (e.g., addressing beliefs that one is incompetent by considering disconfirming evidence)

47. McCay’s Healthy Self-Concept Group • Focused on young adults experiencing their first episode of a psychotic disorder • Goals: • l) to facilitate the expression of emotional reactions associated with the illness experience • 2) to develop a personally acceptable interpretation of their illness experience • 3) to develop a sense of self beyond the illness (i.e., minimizing engulfment) • 4) to facilitate a diverse range of coping strategies • 5) to encourage and recognize future possibilities • Findings from a small RCT (McCay et al., 2007) support that participants in the group showed significant reductions engulfment, hope, and quality of life measures

48. Cognitive Restructuring Approaches • Fung et al. (2011) describe an approach (conducted in China) • Consists of 12 weeks of psychoeductaion, cognitive behavioral therapy, motivational interviewing, social skills training, and goal attainment • Findings from a small RCT suggest that participants showed improvements in self-esteem decrement, readiness to change, and treatment adherence

49. Narrative Enhancement and Cognitive Therapy • Developed by myself and my colleagues (Lysaker and Roe) • 20 session manualized group intervention • Consists of 3 elements: • Psychoeducation to help replace stigmatizing views about mental illness and recovery with empirical findings • Cognitive restructuring geared toward teaching skills to challenge negative beliefs about the self • Elements of psychotherapy focused on enhancing one’s ability to integrate empowering themes into one’s life story • Narrative element is based on findings from psychotherapy research supporting that narrative change is a major part of the process of identity transformation

50. Narrative Enhancement and Cognitive Therapy: Preliminary Findings • Qualitative analysis with 18 NECT completers in Israel (Roe et al., 2010) revealed six domains of improvement which participants attributed to participating in the intervention: Experiential learning, positive change in experience of self, acquiring cognitive skills, enhanced hope, coping, and emotional change. • Identified processes contributing to positive change included the therapeutic alliance and participants’ active role