Transcript The Impact of Coping on the Community Functioning of Persons

Stigma, Identity and Recovery
Philip T. Yanos, Ph.D.
Associate Professor
Psychology Department
John Jay College of Criminal Justice
City University of New York
Special Thanks To:
• Research Partners: David Roe (University of
Haifa), Paul Lysaker (Roudebush VA, IndianaPurdue University)
• Doctoral Students: Michelle West, Stephen
Smith, and Ginny Chan
• NIMH-funding (R34MH082161)
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
Are Mental Health Consumers Aware
of Stigma?
• Definitive yes
• Wahl (1999) surveyed 1301 mental health consumers in USfound 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)
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
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%)
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”
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
Stigmatizing Condition
collective
representations
and
cognitive primes
contingencies of self worth
Negative Action by Others
Perceived Legitimacy
LOW
HIGH
Group Identification
HIGH
RIGHTEOUS
ANGER
LOW
LOW
INDIFFERENT
HIGH
Loss of Self
Esteem/
Efficacy
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)
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)
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
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
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
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, spiritualperson, etc.)
• Goffman- people diagnosed with mental
illness develop a “spoiled” identity
• Lally- “role engulfment”: acceptance of the
“patient role” as primary definition of self
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)
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)
How Do We Measure Degree of SelfStigma?
• 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
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)
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
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
What is the Impact of Having a SelfStigmatized Identity?
• Corrigan and Watson’s model proposes that
self-stigma leads to diminished self-esteem
(belief in one’s own self-worth) and selfefficacy (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
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 selfesteem
 We hypothesized that diminished hope and
self-esteem will predict impaired recoveryrelated outcomes
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
Overlap Between Subjective and
Objective Aspects of Recovery
Social Functioning
Well-Being
Community Integration
Model for Impact of Internalized
Stigma on Recovery-Related Outcomes
(
Yanos, Roe & Lysaker, 2010)
InternalizedStigma
Hope and
SelfEsteem
Coping and
Engagement
in Treatment
Vocational
Outcomes
Awareness
Social
Interaction
Suicide
Risk
Symptom
Severity
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
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 selfstigma have better outcomes than individuals
with high insight and high self-stigma?
Internalized Stigma Moderating Impact of
Awareness (Lysaker, Roe & Yanos, 2007)
Low Insight, Low
Stigma
(n = 21)
High Insight, Low
Stigma
(n = 24)
High Insight, High
Stigma
(n = 26)
Self-Esteem*
(3 < 1, 2)
32.9
32.9
25.7
Hope*
(3 < 1, 2)
14.8
16.3
11.6
Social
Relationships*
(2 > 1, 3)
18.1
23.3
18.4
Positive
Symptoms*
(2 < 1, 3)
17.7
12.9
17.2
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 selfesteem, and worse social relationships than
both people with high insight/low self-stigma,
and people with low insight/low self-stigma
Study 2
• Path analysis examining support for overall
model of effects of self-stigma on outcomes
related to recovery
Test of Model for Impact of
Internalized Stigma on RecoveryRelated Outcomes (Yanos, Markus, Roe, & Lysaker,
2008)
InternalizedStigma
-.59*
Hope and
SelfEsteem
-.51*
-.49*
-.26*
Depressive
Symptoms
Avoidant
Coping
-.01
Social
Avoidance
Psychotic
Symptoms
.37*
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
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
Test of Model for Impact of
Internalized Stigma on Vocational
Outcomes (Yanos, Lysaker, & Roe, 2010)
Baseline
InternalizedStigma
(Controlling
For Symptoms)
-.34*
5-month
Improvement in
Vocational
Functioning
Take Home Message from Study 3
• Degree of internalized stigma significantly
predicted degree of vocational functioning 5
months later, even when controlling for
symptoms
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
Meta-Analysis of Impact of Self-Stigma
• Livingston & Boyd (2010) conducted a metaanalysis 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)
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
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)
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 selfstigma 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
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 selfdisclosure 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 selfstigma
RCT of Impact of Peer-Led Services
• Segal et al. (2010) randomly assigned 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-CMHA sample showed significantly
greater improvements in personal empowerment, selfefficacy 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
Are There Professional Interventions
Available to Facilitate the Change of SelfStigma?
• 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
Professional Interventions: Common
Elements
• A common element of the professional interventions
developed to address self-stigma is the reexamination 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)
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
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 selfesteem decrement, readiness to change, and
treatment adherence
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
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
Narrative Enhancement and Cognitive
Therapy: Preliminary RCT Findings
• We conducted a small RCT of NECT with 39 mental health
consumers in New York and Indiana
• In addition to the small sample size, significant dropout from the
control group was an issue
• Nevertheless, we observed borderline significant improvement
between time 1 and time 2 in the group exposed to treatment in
contrast with the unexposed group in the stereotype endorsement
subscale of the ISMI, insight and problem-centered coping among
NECT participants
• Although participation in NECT was not related to improvements in
social functioning, improvement in both coping and self-stigma
predicted improvement in social functioning overall
• There was no evidence for significant improvement in hopefulness
and self-esteem, however
• Future research with a larger sample is needed to further examine
effects
Take-Home Message: Again
• 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