Perspectives on Individual, Family and Societal Stigma and the Impact on Special Populations

1. Perspectives on Individual, Family and Societal Stigma and the Impact on Special Populations • Scott Glaser, Executive Director, NAMI Colorado • Ken Norton, Executive Director, NAMI New Hampshire • Joshua Sprunger, Executive Director, NAMI Indiana • Samuel Hargrove, Senior Vice Chair, NAMI Veterans and Military Council, Arlington, VA

2. Types of Stigma - Person Or “What is self-stigma and what is it’s effect?”

3. Self-stigma “Thinking of myself as garbage, I would even leave the sidewalk in what I thought of as exhibiting the proper deference to those above me in social class. The latter group, of course, included all other human beings.”

4. Self-Stigma Self-Stigma implies that people with mental illness are not only aware of public stereotypes, but also agree with them and apply them to themselves, resulting in low self-esteem. Implicit self-stigma can be the product of a negative implicit attitude toward mental illness and low implicit self esteem. Corrigan’s studies show that implicit and explicit self-stigma remained significant predictors of quality of life, but diagnoses were nonsignificant

5. The “Why Try” effect • The “Why Try” effect includes three components: • Self-Stigma that results from stereotypes • Mediators such as self-esteem and self-efficacy • Life goal achievement, or lack thereof

6. The “Why Try” effect • Self-efficacy is a cognitive construct that represents a person’s confidence in successfully acting on specific situations • Self –devaluation is more fully described by what are called the “three As” of self-stigma • Awareness • Agreement • Application

7. The Result of Self-Stigma Stigma is the most frequently cited reason that people don’t seek treatment!

8. The Effect of Self-Stigma Individuals constrict their social networks and opportunities in anticipation of rejection due to stigma, which leads to isolation, unemployment and lowered income.

9. The Effect of Self-Stigma- an example • In a study at the University of Michigan 14.3% of students were identified as having moderate to severe depression (higher than the range of the population at large). • 53% of the students who reported symptoms were worried that revealing their illness would be risky • Almost 62% said asking for help would mean their coping skills were inadequate. • Findings indicated that the students who are depressed feel highly stigmatized by their fellow students and faculty members. • 36% of men and 20% of women believed that depressed students could endanger patients. • Based on what we’ve learned about self-stigma, how many of these students would seek help?

10. The “good news” – What can we do? • Peer groups with relationships among members without any sense of hierarchy are proven to positively effect self-esteem and self-efficacy. • While there may be benefits of selective disclosure such as an increase in supportive peers, it is still a secret that could represent a source of shame. • Study of self-stigma clearly indicates that the self-stigma process varies between individuals and points to Group Identification (GI), perceived legitimacy (PL), and stereotype agreement as important points of intervention

11. The “good news” – What can we do? • Internalization of stigma and loss of self-esteem are not inevitable. • Some people react to stigma by becoming energized and empowered while others remain relatively indifferent and unaffected • If people identify with an in-group and at the same time hold it in high regard, group identification is likely to be associated with high self-esteem.

12. The “good news” – What can we do? • We can make a difference early in life by addressing issues of adolescents. • Young children have poor knowledge of mental illness and their associated stereotypes • They seem to already possess stigmatizing attitudes as evidenced by tendencies to avoid people with mental illness.

13. The “good news” – What can we do? • Three approaches to combat stigma: Protest, education, and contact • Protest – a reactive strategy that aims to suppress stigmatizing attitudes about mental illness – is generally ineffective at reducing stigma • Education – a proactive strategy that involves challenging the myths of mental illness with factual information in order to enhance mental health literacy – has been found to be fairly effective • Contact – dispelling negative beliefs about mental illness through direct in vivo interactions with mental health consumers – is the most promising approach and can augment effects of education.

14. The “good news” – What can we do? Current study identified that about one in eight high school students experience self-stigma. It was determined that a classroom-based presentation which incorporates contact with a mental health services recipient can produce significant reductions in self-stigma.

15. Citations and Sources * Patrick W. Corrigan PsyD “Implicit Self-Stigma in people with mental illness” in The Journal of Nervous and Mental Disease Volume 198, Number 2, February 2010. www.jonmd.com * Patrick W. Corrigan PsyD et al “Self-stigma and the ‘why try’ effect: impact on life goals and evidence-based practices” in World Psychiatry 2009; 8:75-81. * Patrick W. Corrigan PsyD et al “Self-stigma in People With Mental Illness” in Schizophrenia Bulletin vol 33 no. 6 pp. 1312-1318, 2007. * Leah Harman et al. “Self-Stigma of Mental Illness in High School Youth” in Canadian Journal of School Psychology 28 (1) 28-41 2013 www.cjs.sagepub.com * Editor “Depression Stigma Higher in Medical Students” September 21, 2010 www.psychcentral.com

16. Overview • Disclosure • Family Stigma • Suicide and stigma • Media • Societal Stigma

17. NAMI What’s in a name?

18. Mental illness+ Addiction Homelessness Incarceration = stigma, stigma and more stigma

19. Family Stigma the prejudice and discrimination experienced by individuals through associations with their relatives. Larson and Corrigan 2008

20. Schizophrenegenic Mother

21. Expressed Emotion “High EE Families” • Hostility • Emotional over involvement • Critical comments • Increased relapse?

22. Stigma by Association • Do you find the staff of the psychiatric services to be supportive in carrying the burden of being a relative of a person with severe mental illness? • Do you feel inferior to the staff of the psychiatric services in conversations? • Has the person's mental illness affected the possibilities of your having company of your own? • Do you feel supported by anyone in carrying the burden of having a relative with mental illness? • Has the person's mental illness impaired the relationship between you and that person?

23. Stigma by Association II • Are there times when you wish that the person with mental illness had never been born, or that you and the person had never met? • Has the person's mental illness led to any mental health problems of your own? • Is the burden of the situation of being a relative so heavy that you have thought of suicide? • Are there times when you think that the ill person would be better off dead?

24. Findings • Eighty-three per cent of the relatives experienced a burden in one or more of the assessed psychological factors of stigma by association • Eighteen per cent of the relatives had at times thought that the patient would be better off dead • 10% had experienced suicidal thoughts. • No real differences in gender Ostman; Brittish Journal of Psychiatry 2002

25. Canadian Medical Association Survey 2008 • 42% would no longer socialize with a friend diagnosed with mental illness; • 55% wouldn’t marry someone who suffered from mental illness; • 25% were afraid of being around someone who suffers from mental illness; and • 50% would not tell friends or coworkers that a family member was suffering from mental illness.

26. Self Stigma • Family members tend to internalize the devaluing views of others • One study showed up to 50% of families feel self blame (about their loved one’s illness) • Self Stigma is associated with low self esteem, secrecy, social withdrawal in anticipation of rejection, psychological distress and subjective burden Perlick et al December 2011 Psychiatryonline

27. Objective Burden • Financial hardship (financial dependence) • Curtailment of social activities • Disrupted household functions • Altered relationships with friends and relatives • Time focused on caregiving impacts on relationships in immediate family • Crisis management • Occupation changes for major caregivers • Frustrating, confusing and humiliating interactions with service providers Lefley American Psychologist March 1989

28. Family Stigma To tell or not?

29. “Why do you keep talking about mental illness. Why don’t you just keep quiet and pray?” NAMI NH’s founder Peggy Straw’s mother in law about Peggy’s outspokenness about mental illness

30. Social Stigma To ask or not?

32. Stigma and Suicide +Positive stigma prevents people from acting on suicidal impulses. - Negative stigma prevents people from seeking help, or it can isolate family members and fellow Soldiers following a suicide death. • Stigma as it relates to suicide is complex. 32

33. How does the word suicide impact?

34. “When our son died by suicide, there were no casserole dishes dropped off at our home” A survivor of suicide loss

35. Media

36. Media analyses of film and print have identified three (stereotypes) • People with mental illness are homicidal maniacs who need to be feared; • They have childlike perceptions of the world that should be marveled; or • They are responsible for their illness because they have weak character Corrigan and Watson 2002

37. AP Style Guide and Mental Illness March ‘13 • Do not describe a person as mentally ill unless pertinent and properly sourced • Do not assume mental illness is a factor in a violent crime • Avoid unsubstantiated statements about someone’s mental condition • Do not attribute behavior to mental illness

38. Impacts of Societal Stigma • Stigmatizing views about mental illness are not limited to uninformed members of the general public • Professionals from most mental health disciplines subscribe to stereotypes about mental illness • Research has shown that stigma has a deleterious impact on obtaining good jobs (and leasing safe housing) • The public endorses segregation in institutions as the best service for people with serious psychiatric disorders Corrigan and Watson 2002

39. Research

40. Budget Cut$ 2009-2012 • $4.6 billion reductions in state mental health program funding • a severe shortage of services, including housing, community-based treatment and access to psychiatric medications. • 4,471 State Hospital beds (approximately 9% of capacity) • ? (unknown but significant) closure of local and private hospital psychiatric beds • People in mental health crisis in Emergency Depts. T. Lutterman NASMHPD

41. D. Pann Mother Jones 4/29/13

42. Incarceration • Between 1998 and 2006, the number of mentally ill people incarcerated in federal, state, and local prisons and jails more than quadrupled to 1,264,300 • Since 2006, mental-illness rates in some county jails have increased by another 50 percent.

43. Life Expectancy and MI • Americans with major mental illness die 14 to 32 years earlier than the general population • Average life expectancy for people with major mental illness ranged from 49 to 60 years of age • population is rarely identified as an underserved or at-risk group in surveys of the social determinants of health • Deaths by cancer, heart disease etc • High rates of addiction, obesity, diabetes

45. Families and Youth in Communities of Color

46. A Way of Talking

47. Stories from Refugee Communities

48. Research: Cultural versus Structural? Trauma? Racism and the paradox of self-stigma?

49. Stigma Associated with Military & Veteran Status • Stigma is stigma, is stigma, is stigma! • No matter your status in life, stigma is stigma. • Military & Veterans experience trauma as others do; trauma is trauma is trauma…! • My perception is my REALITY! • No matter whether you are a combat or peacetime veteran or military member and their families.

50. My Journey as an African-American Military Veteran • Barriers within the military & veteran culture • Barriers within the African-American culture