Confronting and changing the stigma of mental illness

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Confronting and changing the stigma of mental
illness
Who is Crazy?

• Mental Health Planning Council
• San Francisco, California
• June 19, 2008
• Sarah Altman, MD, MPH
• Karen Hopp, MD

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• Sarah Altman, MD, MPH
• Clinical Instructor, UCSF
• Attending Inpatient Psychiatrist,
• San Francisco General Hospital
• Karen Hopp, MD
• Private practice
• Psychiatry primary care medicine
• Woodland Healthcare, Woodland, CA

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Objectives

• Describe stigma and its effects on individuals,
  families communities
• Understand selected models in anti-stigma
  research
• Summarize what is known about effective
  strategies to reduce stigma and discrimination
• Provide information about available resources

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A Letter From A Resident

• Dear Dr. Fink,
• I am a PGY-4 resident in psychiatry. I am
  also mentally ill. I am bipolar and a recovering
  alcoholic. It has been difficult and trying at
  times. Sometimes I feel as though it is too much
  and I should reevaluate my goals..

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What is STIGMA?

• Word originally referred to the mark or brand
  that was put on Greek slaves to separate them
  from free men
• A sign of disgrace or discredit which sets a
  person apart from others. Goffman, 1963

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The Experience of Stigma

• SHAME
• Blame
• Secrecy
• The black sheep of the family role
• Isolation
• Social exclusion
• Hopelessness

(Byrne, 2000)
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Common themes The Concept of Stigma

• STEREOTYPING ?
• (The neutral PERCEPTIONS of difference)
• PREJUDICE ?
• (Negative BELIEFS about this difference)
• DISCRIMINATION
• (Negative ACTIONS taken)

Adapted from work by Corrigan et al and Link
and Phelan
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People with Mental Illness are

• Dangerous ? therefore they should be feared and
  excluded
• Incompetent ? therefore they should be controlled
  and should not be allowed to make their own
  decisions
• Lack willpower ? therefore they need to be cared
  for and should not be independent

(Corrigan, 2004), (Byrne, 2000)
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The Discrimination of Stigma

• Less likely to be hired
• Less likely to have apartments rented to them
• More likely to be rejected by friends and family
• More likely to be falsely accused of a crime
• More likely to be arrested and spend more time in
  jail that someone else similarly charged

(Rusch, 2005) (Read, 2006)
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Public vs. Self Stigma

• Public stigma consists of three elements ?
  stereotypes, prejudice, and discrimination, in
  the Context of POWER, that leads to negative
  treatment of the stigmatized group

• Self stigma occurs when members of the
  stigmatized group internalize the public
  attitudes toward them, and leads to
  self-defeating beliefs and behaviors including
  avoiding treatment

(Corrigan, 2004)
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• They called me mad, and I called them mad, and
  damn them they outvoted me
• Nathaniel Lee,
• patient from England,
• 16th century

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Public vs. Self Stigma

• Public stigma consists of three elements ?
  stereotypes, prejudice, and discrimination, in
  the Context of POWER, that leads to negative
  treatment of the stigmatized group

• Self stigma occurs when members of the
  stigmatized group internalize the public
  attitudes toward them, and leads to
  self-defeating beliefs and behaviors including
  avoiding treatment

(Corrigan, 2004)
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The Double Bind

• People suffering from a mental illness have to
  deal both with the consequences of the illness
  and the STIGMA
• The number one predictor of STIGMA is having the
  LABEL of mental illness, causing people to avoid
  treatment (and the label) as well as maintain
  secrecy in order to pass

(Rusch, 2005) (Link, 1987)
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Stigma also affects

• Families courtesy stigma leading to lack of
  disclosure and support
• Mental Health Field within training programs
  and work settings, also seen in lower levels of
  funding for mental vs. physical health care
• (Corrigan, 2005)

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Why Stigma? Why Now?

• Unfortunately, research suggests public stigma is
  getting worse over the last few decades.
• A U.S. sample population in 1996 was 2.5 times
  more likely to endorse dangerousness stigma than
  a comparable population in 1950
• This finding has been replicated on 4 other
  continents.

(Read, 2006)
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A look at our own attitudes

• Would you
• Be willing to start work with a person with
  mental illness?
• Like to live next door to a person with mental
  illness?
• Make friends with a person with mental illness?
• Rent a room to a person with mental illness?
• Like your child to marry someone with a mental
  illness?
• Trust a person with mental illness to take care
  of your child?

(Social Distance Scale, Link et al. 1987)
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Definition of Social Distance

• Social distance is the relative willingness of
  one person to participate in relationships of
  varying degrees of intimacy with a person who has
  a stigmatized identity (Bowman, 1987)
• INCREASED Social Distance means LESS
  interpersonal involvement

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A Community Sample(n844) (Lauber et al, 2004)
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Research around Social Distance

• Factors that increased social distance
• Schizophrenia vs. depression diagnosis
• Belief in the biomedical model of illness
• Factors that decreased social distance
• Positive attitude to lay helping and to
  community psychiatry
• Contacts to persons with mental illness

(Lauber, 2004)
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StigmaStrategies for Change

• What does the literature tell us?
• What can we do to change it?

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The science of stigma is in its infancy.

• The recognition of the enormous personal,
  social, and still unmeasured economic toll of
  stigma, and the absence of a conceptual framework
  or an evidence base for interventions, are
  driving a movement to reinvent a science of
  stigma.

Keusch, Wilentz and Kleinman, February 2006
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Academic Psychiatry, 322, March-April 2008
Special IssueReaching Out to Families and
Overcoming Stigma
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Challenges

• Social distance ? actual behavior.
• People know what they should say, but often act
  differently.
• Measuring opinions doesnt give insight into why
  people have these opinions.

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Interventions

• Protest

Corrigan, River et al., 2001 Corrigan Gelb, B,
2006 Rusch et al., 2005
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Interventions

• Protest
• Education

Corrigan, River et al., 2001 Corrigan Gelb,
B, 2006 Rusch et al., 2005
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Interventions

• Protest
• Education
• Contact

Corrigan, River et al., 2001 Corrigan Gelb, B,
2006 Rusch et al., 2005
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Evidence for Interventions

• Intervention trials
• Real-world experience

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Limitations of the research data

• Uncontrolled trials
• Very small controlled trials
• Self-reported measures
• Surrogate markers.

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Intervention Trials

• Small n 90, 100, 150, 200, 500, 1500
• Short
• intervention hours 1 or less, 2, 4, 8
• one week-long full-time intervention

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Pre-test post-test measurements

• Knowledge about mental illness
• Attitudes Attribution scales
• Attitudes Social distance scales

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School Children Police Officers Community
College Students(as surrogates for the general
public)

• 6 Uncontrolled trials in England and USA
• Pinfold V, et al., 2003 (England) - 3 trials
• Watson A, et al., 2004 (USA)
• Warner, 2005 (Colorado)
• Spagnolo, Murphy, Librera, 2008 (New Jersey)
• 1 Nonrandom controlled trial in Germany
• Schulze B, et al., 2003
• 2 Randomized controlled trials in USA
• Corrigan, River, et al., 2001
• Corrigan, Rowan, et al., 2002

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Anti-stigma Intervention Studies

• Protest ?
• No measurable effect on attitudes

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Anti-stigma Intervention TrialsResults

• Protest ? no effect
• Education ?
• Positive effect on knowledge
• Minimal effect on attitudes, perhaps greater in
  school children
• Less effect on social distance
• Longer interventions ? more effective

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Boulder Police Officers Disappointing increase in
knowledge.
Warner, 2005 (Open the Doors)
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English PoliceSmall Improvement in attitudes
Pinfold V, et al., 2003 (Open the Doors)
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American middle schoolers Small improvement in
attitudes
Watson et al. 2004
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Anti-stigma Intervention TrialsResults

• Protest ? no effect
• Education ? modest, limited effects
• Contact ?
• Greater impact on social distance than education
  alone.
• Impact still very small.

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Contact ?

• Significant changes in some attitudes
• The depressed patient was held less responsible
  for being depressed.
• Depression can improve with treatment.
• Psychosis can improve with treatment.
• __________________________________
• But not others
• The psychotic patient was held no less
  responsible for having psychosis.

Corrigan, River, et al., 2001
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Contact

• New Jersey
• n 426 adolescents
• 1 hour informational session developed and
  facilitated by consumers of mental health
  services
• significantly less stigmatizing attributions on 7
  of 9 factors

Spagnolo, Murphy, Librera, 2008
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Protest Revisited

• Grassroots efforts directed at the media
• Reduce the presentation of negative images about
  mental illness in the media
• Increase the presentation of positive images
  about mental illness in the media

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• Short-lived ABC sitcom
• Only 5 episodes aired in 2006, though 13 were
  filmed.
• By the third episode of the show multiple
  sponsors had withdrawn there support

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Social Marketing

• Changing Minds campaign United Kingdom
• Royal College of Psychiatrists
• Elimination of Barriers initiative USA
• SAMHSA
• Open the Doors Calgary, Canada
• Like Minds, Like Mine New Zealand
• New Zealand Ministry of Health

Crisp, et al., 2004 Akroyd Wylie,
2002 Sartorius Schulze, 2005 Vaughan Hansen,
2004
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Like Minds, Like MineMass Media Component

• Contact via media portrayal
• Asked Are you prepared to judge?
• TV spots ran 1 wk on/3 wks off for 8 mos
• A Phase 2 strategy utilized more in-depth
  60-second mini-documentaries
• Download from www.likeminds.govt.nz

Vaughan Hansen, 2004
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New Zealand agreeingMental illness
adapted from Akroyd Wylie, 2002
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New Zealand disagreeingPeople with mental
illness are
adapted from Akroyd Wylie, 2002
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Social Distance Willingness to accept a person
who has had experience of mental illness as
adapted from Akroyd Wylie, 2002
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Social Distance in schizophrenia Willingness to
accept someone as
adapted from Akroyd Wylie, 2002
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Experience of persons with mental illness in New
Zealand
lot less stigma little less stigma little
more stigma lot more stigma
from Akroyd Wylie, 2003
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• "One of the biggest barriers to recovery is
  discrimination. That is why stopping
  discrimination and championing respect, rights
  and equality for people with mental illness is
  just as important as providing the best
  treatments and therapies.
• Blueprint for Mental Health Services in New
  Zealand, November 1998

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National Plan 2007 - 2013
Ministry of Health. 2007. Like Minds, Like Mine
National Plan 2007-2013 Programme to Counter
Stigma and Discrimination Associated with Mental
Illness. Wellington Ministry of Health.
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Sponsors of U.S. Anti-Stigma Efforts

• National Alliance on Mental Illness
• SAMHSA
• Address Discrimination Stigma (ADS) Center
• Elimination of Barriers Initiative (EBI)
• Active Minds on Campus
• National Mental Health Awareness Campaign
• Mental Health America
• Chicago Consortium for Stigma Research
• Open the Doors World Psychiatric Association

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National Alliance on Mental Illness

• Protest- Stigma Busters
• Education- support groups Family to Family
• Contact- In Our Own Voice

www.NAMI.org
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SAMHSA

• - highlights current anti-stigma programs
• - fact sheets, survey data, how to tips

www.adscenter.org
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Elimination of Barriers

• - Public Education Program
• - Launched in September 2003
• - Pilot projects in 8 states
• (California, Florida, Massachusetts, Texas,
• No. Carolina, Ohio, Pennsylvania, Wisconsin)

www.allmentalhealth.samhsa.gov
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Substance Abuse and Mental Health Services
Administration. Developing a Stigma Reduction
Initiative. SAMHSA Pub No. SMA-4176. Rockville,
MD Center for Mental Health Services, Substance
Abuse and Mental Health Services Administration,
2006.
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National Mental Health Awareness Campaign

• Launched in 1999
• Youth Outreach
• Mental Health Media Partnership
• Roundtable Discussions

www.nostigma.org
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Active Minds on Campus

• Founded in 2001
• Focus Mental Health needs of College Students

www.activemindsoncampus.org
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Open the Doors

• Project of the World Psychiatric Association
• Begun 1996
• Focus Reducing Stigma in Schizophrenia
• 5 continents
• 19 countries

• www.openthedoors.com/english

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Efforts in Stigma Research

• -funded by NIMH
• -principal investigator Patrick Corrigan, PsyD

www.stigmaresearch.org
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Other Anti-Stigma Resources(Prepared by
National Stigma Clearinghouse)

• Aleppos
• Center for Psychiatric Rehabilitation - Boston
  University
• National Mental Health Information Center
• Indiana Consortium for Mental Health Services
  Research
• Institute for the Study of Human Resilience -
  Courtenay Harding
• MacArthur Research Network on Mental Health and
  the Law

• NIMH - National Institute of Mental Health
• On Our Own of Maryland
• Otto Wahl Writings, Research, Resource Lists
• Pathways to Promise Ministry and Mental Illness
• People Who
• Stamp Out Stigma
• Stigma of Cinemania Media Ethics (David
  Gonzalez)
• Surgeon General's Reports. See 1999 Report on
  Mental Health, and others.

httpwww.stigmanet.org/
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Targeted Groups for Change

• Popular media journalists and executives
• Employers
• Landlords
• Criminal justice officials law enforcement
• Legislators regarding discriminatory laws
• At risk populations
• Consumers
• Providers of health care
• Mental Health Professionals

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STIGMA

• Takes an enormous personal, social, and still
  unmeasured economic toll.
• Funding differential for mental health
• Poor integration of consumer services

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STIGMA Interventions

• Protest, Education, Contact
• Protest against the media
• Face-to-face contact
• Social marketing

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STIGMA and DISCRIMINATIONEffective intervention
strategies

• Specific interventions must be targeted
• Consumer involvement a must
• Requires a sustained effort
• Over the long term multi-faceted effort
• Much has already been done.
• Resources are available.

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Thank youGood luck