On Stigma and Its Consequences

1
On Stigma and Its Consequences

• Bruce G. Link
• UMDMJ
• February 16, 2006

2
Surgeon Generals Report
Stigma erodes confidence that mental
disorders are valid, treatable conditions. It
leads people to avoid socializing, employing or
working with, or renting to or living near
persons who have a mental disorder, especially a
severe disorder like schizophrenia.
Stigma deters the public from wanting to pay for
care and, thus, reduces consumers access to
resources and opportunities for treatment and
social services. A consequent inability or
failure to obtain treatment reinforces
destructive patterns of low self-esteem,
isolation and hopelessness. Stigma tragically
deprives people of their dignity and interferes
with their full participation in society. It
must be overcome.
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Stigma Talk Outline

• Historical overview
• The definition of stigma
• Evidence from a study of the general public
• Evidence concerning the consequences of stigma
  for people with mental illnesses
• Thoughts about changing stigma

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Early Studies

• Shirley Star 1950 Nationwide Study
• Nunnallys description of the stereotype of
  mental illness
• Cumming and Cumming failed effort to change
  attitudes

5
A Shift in Professional Views in 1970s and Early
1980s

• Gove, 1982
• the evidence of the 1950s would indicate that .
  . . the public was ignorant about mental illness,
  had a very negative image of persons identified
  as mentally ill, and excluded them. Since then
  there has been a massive education effort focused
  on mental illness furthermore, the generally
  transitory nature of mental illness and
  effectiveness of treatment has become fairly
  visible

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The Down Playing of Stigma in the Late 1970s and
Early 1980s

• Sociologist Walter Gove (1982) -- stigma
  appears to be transitory and does not appear to
  pose a severe problem
• Crocetti et al. (1974) Former patients enjoy
  nearly total acceptance in all but the most
  intimate relationships

7
Recent Indicators of Interest in the Stigma of
Mental Illnesses

• The Surgeon Generals Report
• National Campaign to Address Stigma
• NIH organized the first international conference
  to address the global consequences of stigma
• Great Britains Royal College of Psychiatrists --
  Changing Minds initiative
• World Health Organization

8
Number of Articles Mentioning Stigma in Title
or Abstract
9
Implicit Definitions of Stigma

• When stigma is not defined explicitly it usually
  refers to one of the following
• The attribute/characteristic/mark/label.
• The linking of the label to undesirable
  characteristics, stereotyping.
• The experience of rejection, disapproval,
  exclusion or discrimination

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Some Definitions of Stigma

• Dictionary Definition -- a mark of disgrace or
  infamy.
• Goffman (1963) -- an attribute that is deeply
  discrediting and reduces the bearer from a
  whole and usual person to a tainted, discounted
  one.
• Jones et al. (1984) -- a mark that sets a person
  apart and links the marked person to undesirable
  characteristics

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The Stigma Concept

• Stigma exists when the following interrelated
  components converge
• 1. people distinguish and label human differences
• 2. labeled persons are linked to undesirable
  characteristics -- to negative stereotypes
• 3. labeled persons are viewed as an outgroup as
  them and not us
• 4. people experience emotional reactions to
  labeled people fear, repulsion, disgust and
  labeled persons may feel shame, embarrassment,
  humiliation
• 5. labeled persons experience status loss and
  discrimination as a consequence
• 6. stigma is dependent on power

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Some Recent Evidence Regarding Public Attitudes
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The 1996 General Social Survey

• A nationally representative sample of 1444
  persons living in households
• In person interviews conducted by National
  Opinion Research Corporation (NORC)
• Response rate 76
• Collaboration between Indiana University and
  Columbia University
• 5 vignettes (4 mental disorders, 1 troubled
  person) one of the five randomly assigned to
  each respondent

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Vignette Depicting Drug Dependence
John is a Ethnicity man with an Educational
Level education. A year ago John sniffed cocaine
for the first time with friends at a party.
During the last few months he has been snorting
it in binges that last several days at a time.
He has lost weight and often experiences chills
when bingeing. John has spent his savings to buy
cocaine. When Johns friends try to talk about
changes they see, he becomes angry and storms
out. Friends and family have also noticed
missing possessions and suspect that John
has stolen them. He has tried to stop snorting
cocaine, but he cant. Each time he tries to stop
he feels very tired and depressed and is unable
to sleep. He lost his job a month ago after not
showing up for work.
15
Vignette Depicting Alcohol Dependence
John is a Ethnicity man with an Educational
Level education. During the last month John has
started to drink more than his usual amount of
alcohol. In fact, he has noticed that he needs
to drink twice as much as he used to to get the
same effect. Several times he has tried to cut
down, or stop drinking, but he cant. Each time
he tried to cut down he became very agitated,
sweaty and he couldnt sleep, so he took another
drink. His family has complained that he is
often hungover, and has become unreliable --
making plans one day and canceling them the next.
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Vignette Depicting Schizophrenia
John is a Ethnicity man with an Educational
Level education. Up until a year ago, life was
pretty okay for John. But then, things started
to change. He thought that people were
making disapproving comments and talking behind
his back. John was convinced that people were
spying on him and that they could hear what he
was thinking. John lost his drive to participate
in his usual work and family activities and
retreated to his home, eventually spending most
of his day in his room. John was hearing voices
even though no one else was around. These voices
told him what to do and what to think. He has
been living this way for six months.
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Vignette Depicting Major Depressive
John is a Ethnicity man with an Educational
Level education. For the past two weeks John has
been feeling really down. He wakes up in the
morning with a flat heavy feeling that sticks
with him all day long. He isnt enjoying things
the way he normally would. In fact nothing
gives him pleasure. Even when good
things happen, they dont seem to make John
happy. He pushes on through his days, but it is
really hard. The smallest tasks are difficult
to accomplish. He finds it hard to concentrate on
anything. He feels out of energy and out of
steam. And even though John feels tired, when
night comes he cant go to sleep. John feels
pretty worthless and very discouraged. Johns
family has noticed that he hasnt been himself
for about the last month and that he has
pulled away from them. John just doesnt feel
like talking.
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Vignette Depicting a Troubled Person
John is a Ethnicity man with an Educational
Level education. Up until a year ago, life was
pretty okay for John. While nothing much was
going wrong in Johns life he sometimes feels
worried, a little sad, or has trouble sleeping at
night. John feels that at times things bother
him more than they bother other people and that
when things go wrong, he sometimes gets nervous
or annoyed. Otherwise John is getting along
pretty well. He enjoys being with other people
and although John sometimes argues with his
family, John has been getting along pretty well
with his family.
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Do Members of the Public Recognize/Label the
Vignettes as Mental Illnesses?
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In your opinion, how likely is it that ______ is
experiencing a mental illness -- Very likely,
somewhat likely, not very likely, not at all
likely.
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Percent Indicating that Vignette Person is Very
or Somewhat Likely to be Experiencing a Mental
Illness
88
69
49
44
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Link et al. Am.J. of Public Health 1999
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Percent Labeling the Vignette as the Specific
Condition it was Written to Describe
98
97
95
85
Link et al. Am.J. of Public Health 1999
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Question About Causes of Vignette Conditions
In your opinion how likely is it that ______s
situation might be caused by (Very Likely,
Somewhat Likely, Somewhat Unlikely, Very
Unlikely) His/her own bad character A
chemical imbalance in the brain The way
(he/she) was raised Stressful circumstances in
his/her life A genetic or inherited
problem Gods will
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Percent Believing Stressful Circumstances in the
Persons Life is Very Likely or Somewhat Likely
to be a Cause
95
94
92
91
72
Link et al. Am.J. of Public Health 1999
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Public Perceptions of Causes of Major Depressive
disorder
95
73
53
48
38
15
Link et al. Am.J. of Public Health 1999
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Public Perceptions of Causes of Schizophrenia
91
85
67
45
33
17
Link et al. Am.J. of Public Health 1999
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Question About Chances for Improvement of
Vignette Conditions
In your opinion how likely is it that ______s
situation will improve on its own In your
opinion how likely is it that ______s situation
will improve with treatment
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Percent Believing Vignette Persons Condition is
Likely to Improve on its Own or with Treatment

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Percent Believing Vignette Person is Likely to be
Violent Toward Others
87
71
61
33
17
Question How likely is it ____ would do
something violent toward other people
30
Percent Desiring Social Distance from Vignette
Person
86
66
57
38
18
Willingness to have as an acquaintance, friend,
neighbor, co-worker, in-law
31
Percent of US Public Desiring Social Distance by
Perceptions of Likelihood of Violence
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The question

• Of course, everyone hears a good deal about
  physical illness and disease, but now, what about
  the ones we call mental or nervous illness . . .
  When you hear someone say that a person is
  mentally-ill, what does that mean to you?

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Percent of Respondents Spontaneously Mentioning
Violence in Response to a Question About the
Nature of Mental Illness
Nationwide in 1950 and 1996
31.0
12.7
3
2
Phelan et al. Journal of Health and Social
Behavior 2000
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Public Views Concerning Whether Mental Illness is
an Illness Like Any Other

• Nationally Representative Random Digit Dial
  Telephone Survey N 670
• Conducted 2002 -2003
• Response Rate 62

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Physical Illness Descriptions

• Brief description of a persons background, age,
  gender, education then
• Heart Disease
• ____ has and illness the doctors diagnosed as
  heart disease and on several occasions he has
  had to go to the local hospital for treatment.
  Because of the condition ___ sometimes has
  shortness of breath, cheat pains, dizziness and
  fainting spells that are signs of restricted
  blood flow to the heart. ___ has had one heart
  attack.
• Diabetes
• ___ has an illness the doctors diagnosed as
  diabetes and on several occasions has had to go
  to the local hospital for treatment. Because of
  his condition, ___ has high blood sugar levels
  that can result in complications such as frequent
  infections, heart disease or kidney failure.

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• Arthritis
• ____ has a condition the doctors diagnosed as
  arthritis and on several occasion she has had
  to go to the local hospital for treatment.
  Because of his condition, ___ has stiffness and a
  lot of pain in his hip and lower back that has
  been getting worse and worse. Sometimes it gets
  bad enough that he just cant do most of the
  things he used to do.
• Melanoma
• ____ has an illness the doctors diagnosed as
  melanoma and on several occasions he has had to
  go to the local hospital for treatment. Because
  of his condition, ___ has a large spot on his arm
  that recently changed color and looked different
  than it used to. It turns out that ____ has a
  serious form of skin cancer and will have to have
  treatment to keep it from spreading.

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Question Wording

• Thinking about what I have just told you about
  ___
• How SERIOUS would you consider his problem to be?
  
• Very Serious, Somewhat Serious, Not Very Serious,
  Not Serious At All.
• ___ is to BLAME for his condition.
• Strongly Agree, Somewhat Agree, Somewhat
  Disagree, Strongly Disagree
• ___ should be give GOVERNMENT ASSISTANCE for
  health care for his problem if he needs it.
• Strongly Agree, Somewhat Agree, Somewhat
  Disagree, Strongly Disagree
• In your opinion how likely is that ___ would do
  something VIOLENT toward other people
• Very likely, somewhat likely, somewhat unlikely,
  not likely at all.

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Mental Illnesses Compared to other Illnesses
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Evidence concerning the consequences of stigma
for people with mental illnesses
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Three Ways in Which Stigma Affects Peoples Life
Chances

• Direct discriminatory behavior by other people
• Structural discrimination
• Discrimination that operates through the
  stigmatized person

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Discriminatory Behavior by Others

• Experiments -- e.g. Page study of apartment
  availability
• Non-experimental studies -- Druss et al. study of
  cardiovascular procedures after myocardial
  infarction
• Self Reports of Consumers -- Wahl study of 1,301
  consumers through NAMI

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Self Reports of Discriminatory Experiences
Wahl, Schizophrenia Bulletin 1999
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Structural Discrimination
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Examples of Structural Discrimination for
Schizophrenia I

• Suppose that because schizophrenia is a
  stigmatized illness
• there is less funding for research than for other
  illnesses --so we know less about how to prevent
  it or treat it than we would have known if it
  werent a stigmatized illness
• less money to provide care and treatment given
  the knowledge we currently have

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Examples of Structural Discrimination for
Schizophrenia II

• Schizophrenia is not fully covered by health
  insurance
• treatment facilities are either isolated or
  confined to areas that dont have the clout to
  exclude this stigmatized group -- rates of crime,
  violence, pollution, noise and infectious disease
  are all higher in these areas

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Discrimination Operating through the Individual
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The Perceived Devaluation/Discrimination Measure

• Example items
• Most women would not marry a man who has been a
  patient in a mental hospital
• Most people think less of a person who has been
  hospitalized for mental illness
• Most employers will not hire a person who has
  been hospitalized for mental illness
• Most people believe that former mental patients
  cannot be trusted

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Washington Heights Study Mean Devaluation
Discrimination Scale Scores
None of the differences between groups are
significant
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Predictions Based On Stigma Theory
Good
Before Being Linked to Stereotypes
Pre - Labeling
Functioning Jobs, Social Networks, Self Esteem
After Being Linked to Stereotypes
Post - Labeling
Poor
Lo
Hi
Perceived Devaluation-Discrimination
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Consequences of Stigma for Persons with Mental
Illnesses

• 1) Unemployment and income loss (Link 1982
  1987 Link et al. 1991)
• 2) Constricted social support networks (Link et
  al. 1989 Perlick et al. 2001)
• 3) Quality of life (Rosenfield 1997 Markowitz
  1998)
• 4) Depressive symptoms, demoralization (Link
  1987 Link et al. 1997)
• 5) Delayed help seeking (Sirey 2001)
• 6) Self-esteem (Wright 2000, Link et al. 2001)

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What Can We Do About Stigma?
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• Many things not just one
• Need a multifaceted multi-level approach to
  address
• Direct discrimination
• Structural Discrimination
• Discrimination operating through individual

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• Suggestions that derive from ideas put forward in
• the presentation
• 1. Intervene in socialization/attitude formation
• with curricula -- contact
• 2. Humanize people with mental illness -- shift
• from a them to an us
• Teach people what to do to help a person
• with mental illness-- have approaches and
• options available to reduce discomfort and
• helplessness.

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4. Develop the capacity to respond to
stigmatizing material in the media or in every
day life. 5. Encourage consumer groups efforts
designed to enhance empowerment. 6. Develop
an evidence-based stigma-reducing plan to
educate people who develop mental illnesses
about their condition. 7. Policy to change
structural discrimination.
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Papers Available via E-mail

• BGL1_at_Columbia.edu
• Conceptualizing Stigma Annual Review of
  Sociology, 2001
• Measuring Mental Illness Stigma Schizophrenia
  Bulletin.
• On Describing and Seeking to Change the
  Experience of Stigma Rehabilitation Skills
  contains measures of stigma and stigma coping
  that we have developed