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Stigma of Mental Illness:Assessments and Interventions
Presenter: Dr. Praveen
Chairperson: Dr. Nishanth
Introduction
• The word stigma is of Greek origin.
• Originally referred to the brand or scar burned or cut into
the body, signifying that the bearer was a slave, or criminal
or otherwise set apart from the general society.
• The phenomenon whereby an individual with an attribute
which is deeply discredited by his/her society is rejected
as a result of the attribute (Goffman, 1963)
Contd…
• Stigma is the result when persons are categorized as
being deviant, or belonging to a stereotyped group,
and whereby there exists discriminatory behavior.
• Stigma has been associated as major barrier to recovery
for people with mental illnesses.
Contd…
According to Merriam Webster’s dictionary, stigma is a
set of negative and often unfair beliefs that a society or
group of people have about something.
According to Oxford dictionary, stigma is a mark of
disgrace associated with a particular circumstance, quality,
or person. As for e.g.: “the stigma of mental disorder”
Meaning• Erving Goffman defined stigma as “the process by which the
reaction of others spoils normal identity”.
• Erving Goffman defined stigma as a special kind of gap between
virtual social identity and actual social identity
• The 3 forms of stigma as categorized by Goffman
The experience of a mental illness (or the imposition of such
a diagnosis);
a physical form of deformity or an undesired differentness;
or an association with a particular race, religion, belief, etc.
(Goffman, 1990).
Components of Stigma
Link & Phelan components (2001)
Labeling
Negative stereotypes
Separation of “us” from “them”.
Status loss and discrimination
Mental Illness Stigma• Mental illness stigma encompasses three constructs: stereotypes,
prejudice, and discrimination (Corrigan, 2004).
• Stereotypes are a set of beliefs about members of a group and typically
represent society’s shared beliefs about that group
• Prejudice is a negative attitude toward a person or group (e.g. “I don’t
like/don’t want to have contact with someone with mental health
problems”) (Allport, 1979).
• Discrimination is the behavioural aspect of stigma and is presumed to
result from prejudice or stereotypes
Types of Stigma:
• Social stigma is characterized by prejudicial attitudes and
discriminating behavior directed towards individuals with mental
health problems as a result of the psychiatric label they have been
given.
• Perceived stigma or self-stigma is the internalizing by the
mental health sufferer of their perceptions of discrimination (Link,
Cullen, Struening & Shrout, 1989), and perceived stigma can
significantly affect feelings of shame and lead to poorer treatment
outcomes (Perlick, Rosenheck, Clarkin, Sirey et al., 2001).
Difference between Public Stigma & Self Stigma
Component Public stigma Self Stigma
Stereotype Negative belief about a group For example, dangerous, incompetent and weak of character.
Negative belief about selfFor example, weak of character andincompetent.
Prejudice Agreement with belief and/or negative emotional reactionFor example, anger and fear.
Agreement with belief Negative emotional reaction For example, low self-esteem and lowself-efficacy.
Discrimination Behavioral response to prejudice.For example. Avoidance of work and housing opportunities and withholding help.
Behavioral response to prejudiceFor example, a failure to pursue work and housing opportunities.
Tools to Assess Stigma
Jaipur Stigma Questionnaire
• The newly developed tool, JSQ, has the following features:
– It is in Hindi language
– It has 14 statements which touch upon various themes of
stigma
– Each questions has four options to choose from, which if
translated to English, are as follows:
(a) Neither I feel this way nor the society does
(b) I don’t feel this way but the society does
(c)Sometimes I feel this way, and
(d) I totally agree with the statement.
• It has the advantage of identifying whether the given idea is
impacting at the level of stereotypy, prejudice or possible
discrimination.
Jaipur Stigma Questionnaire
Journal of Mental Health & Human Behaviour ,2011;16 (2)
Orientation to Mental Illness Scale
• The tool developed by Prabhu (1983)
• This specific questionnaire is a modified version consisting of 67
items, which was equivalent to the original one in all respects
• The score range falls between 67 to 335 and it requires about
20 – 30 minutes to complete the scale.
• There are no cut off scores given by the author.
• The tool has been used extensively in research within the
Indian context.
• The Alpha co-efficient of the OMI in the present study is
0.93 indicating adequate reliability
• It taps various aspects of orientation to mental illness
providing scores on 13 factors, subsumed under 4
domains.
OMI Scale
Comparison of Means of Pre, Post and Follow up Assessment for Orientation towards Mental Illness on 4 main domains of OMI scale
The Self-Stigma of Seeking Help (SSOSH; Vogel, Wade, & Haake, 2006)
• Scale is utilized to measure reductions in self-esteem and self-efficacy
that result from receiving the label of a seeker of psychological help
• SSOSH is a 10-item questionnaire, and includes items such as “If I went
to a therapist, I would be less satisfied with myself.”
• Items are rated from 1 (strongly disagree) to 5 (strongly agree)
• Higher scores represent greater self-stigma of seeking psychological
help
• Evidence for the construct validity of the SSOSH includes
correlations with attitudes toward counselling (r = –.63),
intentions to seek counselling (r =–.38), and the public stigma for
seeking help (r ! .48; Vogel et al.,2006).
• Additionally, the SSOSH has been shown to distinguish between
those who seek help and those who do not (Vogel et al.,2006).
• The SSOSH has demonstrated adequate test–retest reliability
over a period of 2 months α=.72) and adequate internal
consistency (α=.89).
Self-Stigma of Mental Illness (SSOMI) Scale
• 10-item scale, developed for the present study to parallel the Self-
Stigma of Seeking Help (SSOSH) Scale
• It is used to measure the reduction in self-esteem and self-
efficacy that results from receiving the label of mental illness.
• Items were generated by replacing references to seeking
psychological help on the SSOSH with references to having a
mental illness
• Items include such statements as “If I had a mental illness, I
would be less satisfied with myself.”
• Items are rated from 1 (strongly disagree) to 5 (strongly
agree), with half of the items reverse scored such that higher
scores represent greater self-stigma associated with mental
illness.
Beliefs about Devaluation-Discrimination (BDD) Scale
• 12-item scale that measures the extent to which a person
believes the general public devalues and discriminates against
those with a mental illness (Link, 1987)
• BDD includes statements such as “Most people would not hire a
former mental patient to take care of their children, even if he or
she had been well for some time.”
• Items are rated on a 6-point Likert scale from 1 (strongly
disagree) to 6 (strongly agree).
• A higher total score indicates greater public stigma toward
mental illness.
• The internal consistency of the measure has been demonstrated
(α=.76; Link, Cullen, Struening, Shrout, & Dohrenwend, 1989).
Internalized Stigma of Mental Illness (ISMI) scale (Ritsher et.al., 2003)
)
• ISMI : 29-item questionnaire measuring self-stigma among
persons with psychiatric disorders.
• 47 translated versions available
• Indian versions available :Hindi , Bengali& Urdu
• Versions for various psychiatric disorders available
(depression, schizophrenia, substance abuse etc.)
• Most commonly reported findings of studies using the
ISMI are that Internalized stigma correlates with higher
depression, lower self esteem, and higher symptom
severity.
Other Tools
• Self-stigma of Mental Illness Scale (Corrigan et.al., 2006)
• Consumer Experiences of Stigma Questionnaire (Wahl OF, 1999)
• Rejection Experiences Scale (Kessler et. al., 2007)
• Self-reported Experiences of Rejection(Link et.al., 1997)
• Stigma Scale (King et.al., 2007)
• The Inventory of Stigmatizing Experiences (Stuart et.al., 2005)
• Self-esteem and Stigma Questionnaire(Hayward et.al., 2002)
• Stigmatization Scale (Bagley, King, 2005)
Strategies and Interventions to Fight Stigma
• There is no simple or single panacea to eliminate stigma
of mental illness
• Roots of stigmatization are quite complex and embedded
in sociocultural norms.
• Media, healthcare, educational system, law enforcement
& legislation plays an important role in sustaining stigma
Stigma Reduction Strategies
Individual Level(Intra & Inter personal)
Treatment Care & SupportCounselingSelf Help groupsCommunity based rehabilitation
Social Level Education ContactProtestAdvocacy
Structural Level(Institutional/Governmental)
Legal & Policy InterventionInstitutional Intervention Right based approach
Contd
Treatment
• The availability of effective treatment for a particular illness
contributes hugely to reduction of stigma
• This has earlier seen in case of TB & leprosy, which are now
considered curable illnesses
• However, similar curative treatment is not available for mental
illnesses
•
• The prospect of improvement in illness with medication gave a ray of
hope to mentally ill patients.
Counseling & Cognitive behavioral therapy
• These strategies have proven effectiveness in HIV/AIDS (WHO 2002) in
decreasing stigma
• There have been very few studies on counseling to reduce stigma for
mental illness
• People with mental illness, cognitive behavioral therapy has been found to
be an effective strategy in dealing with consequences of self
stigma(Corrigan and Calabrese, 2005)
• Hall & Tarrier 2003, found that CBT for schizophrenia patients with low
esteem resulted in enhancement of their self esteem & improved social
dysfunction
Care & Support
• Proper care & support is important for recovery of patients
and help them by providing a network of social support
(Phelen et al, 1998 )
• Care givers at times perpetuate the stigma of mental
illness (Nyblade et al, 2003)
• Family education plays an important role
Rehabilitation • Successful rehabilitation of a person with mental illness is likely
to reduce the stigmatization of mental illness
Self Help Groups & Support Groups• Support groups have an important contribution on personal
identity, self esteem , their coping skills & social integration (Ablon 2002)
• Self help groups are salient sources of support for persons with mental illness
• Their effectiveness was proven for stigma of TB & HIV/AIDS
Education
• Interventions are aimed in improving the awareness of mental
illness in general public
• Educational interventions can be done through presentations,
discussions, audio tapes& films
• Need to encourage an understanding of mental illness that
extends behind the medical disease model
• There is a sharp consensus to include:
– recovery oriented messages
– see the person messages
– Messages on social inclusion/human rights
– Information on high prevalence of mental disorders
(Clement et al 2010)
• Education programs might lead to diminished discrimination
even changes in stereotypes were not observed
• Social marketing techniques have produced benefits in few
countries in terms of stigma reduction (Jorm et al 2005)
Contact
• Contact refers to all interactions between the public and person
affected
• It can either direct& face to face or indirect (media)
• Contact strategies can engage entire nation in case of prominent
public figure sharing personal experience
• Several studies and reviews demonstrate that contact
interventions are associated with improved attitudes (Corrigen &
Penn 1999)
• These studies further showed change in the attitudes led to
change in behavior
• Contact has been seen as an effective and promising strategy
• A combination strategy of education and contact may be a better
strategy
• However, it is time consuming and cost in effective
Protest
• Protest interventions may contain two messages
– Addressing inaccurate representation if mental illness
– Negative beliefs about mental illness
• Protest interventions could generate short term effects on
attitude change but they have serious limitations (Corrigen &
Penn 1989)
• There is considerable evidence to show protest can change
some behavior significantly (Wahl 1995)
Advocacy
• Advocacy program work towards providing an enabling
environment, influencing the govt to change the policies and
discriminatory laws
• Numerous advocacy are active for various mental illness
• No studies to prove the effectiveness of advocacy in reduction
of mental stigma
Structural Interventions
• Institutional/organizational level aims to modify stigma through
development of new policies within the organization
• Sartorius argues that stigmatization by medical professionals is
often ignored
• Discriminatory acts on part of professional may vary from
inappropriate comments to breach patients confidentiality , from
treatment delay to refusal of treatment (Foreman et al 2003)
• Legal & policy interventions focus on enforcing the protection
of rights of people affected by stigmatizing illness
• Smith 2002 proposed a rights based approach that counter
stigma & discrimination
Need to Address Stigma in Special Population
• Double discrimination which is a coincidence of mental illness & ethnic
minority status is an are where psychiatry must collaborate with other
fields in identifying the problems& enduring solutions
• Women with schizophrenia& broken marriage are stigmatized in both
the ways (Thara et al 2003)
• Diseases like ADHD & learning disorders may be a source of stigma in
children
• Certain legislative & policy decisions are aimed with children with
disability e.g. national trust act
• Sarvasiksha Abbiyan 2002 is an effort by Govt of India specifically
focused on education in children with disabilities & special needs
Current Initiatives to Reduce Stigma
• Over the last 10 years, stigma toward mental disorders has been
acknowledged as a barrier to mental health treatment and
recovery.
• In 1999, the Surgeon General called for approaches to overcome
stigma as a priority for the new millennium.
• In April 2002, President George W. Bush launched The New
Freedom Commission on Mental Health.
• In 2003, the U.S. Department of Health and Human Services
Substance Abuse and Mental Health Service Administration
(SAMHSA)published the first semi-annual memorandum
discussing purpose, current anti-stigma programs, and research
efforts.
• Today, SAMHSA is a resource for individuals and groups
interested in combating stigma.
•
SAMHSA publishes a quarterly memorandum that reports advances in stigma research and highlights successful stigma-reduction programs
• The National Alliance on Mental Illness (NAMI,2007), the
nation's largest grassroots mental health organization, works to
eliminate the stigma associated with mental disorders.
• NAMI uses protest, personal contact, and community education.
• Stigma Busters is a protest approach used by NAMI to fight
stigma.
• Stigma Busters approaches individuals In Our Own Voice, a
manualized contact and educational program, is designed to
increase mental health knowledge and reduce stigma
• The Carter Centre Mental Health Program offers a broad
approach to combating stigma by supporting. Supporting policy
change ( Palpant, Steimntiz,Bornemann,& Hawkins, 2006).
• Policy change is facilitated through the Mental Health Task Force,
promotion of mental health, illness prevention, and support for
mental illness recovery (Palpant et al., 2006).
• The Depression is Real Campaign was launched in 2006 with
the mission of clarify misconceptions about depression.
• The Depression is Real Campaign utilizes public service
announcements radio, television, and print) to educate the
public about depression and offer hope to those with
depression.
Open the Doors program
• Global approaches to combat stigma toward mental disorders.
• In 1996, the World Psychiatric Association began an initiative –
the Open the Doors program— to combat stigma associated
with schizophrenia and increase mental health knowledge.
• Open the Doors is collaborative, multi-centered, and involves
family and patient organizations.
• Open the Doors encourages action to decrease prejudice and discrimination.
• Outreach is driven from the perspective of those experiencing stigma opposed to established mental health theory that may not have been tested in diverse cultures (Okasha, 2007).
• Open the Doors recognizes cultural, socioeconomic, and demographic differences.
• The program has been adapted for different countries and is available in nine different languages.
WPA Anti-stigma Principles
• Acceptance of difference, not normalization or denial of
difference
• Enable people to believe their own experience, rather than rely
on stereotypes
• Media should follow public opinion
• Though, stigma against psychiatry and psychiatrists are
prevalent, we should not be afraid to defend our profession
WPA – India’s Initiative
• Coordination by NIMHANS under guidance of Prof. R. Srinivasa Murthy
• Use of short films of Dr. Abdul Kalam taking an oath with students
against discrimination in English & Tamil, for educating students in high
school & universities
• Publication of articles on newspaper, distribution of pamphlets &
printing messages on milk packets by Schizophrenia Research
Foundation (SCARF)
• Formation of SHAPES ( Society for Hope, Action, Empathy and Regard
for Schizophrenia) by patients & family members
• One of the more robust evaluations refers to the German
version of the World Psychiatric Association’s Open the Doors
programme
• This is the first study to make use of a longitudinal dataset for
an area based anti-stigma programme
• On January 22, 2002, the Düsseldorf research group previewed
the feature film The White Noise.
• The film portrays a young man with mental illness and his
subjective experiences.
WPA –German Initiative
Social Distance Before and After the Film
Contd..
• Approximately 200 spectators attended the event.
• The film was followed by a podium discussion .
• A questionnaire was distributed among the audience before and
after the film
•
• Of 182 questionnaires distributed, 113 could be used for
evaluation (return rate, 62%).
• On the whole, viewers evaluated the event as positive. Most
viewers (n = 113) believed that they could empathize better
with schizophrenia sufferers as a result of the event and
reported increased understanding.
• Nevertheless, some negative stereotypes were strengthened,
and social distancing increased
• On World Mental Health Day 2006, the Department of Health
launched ‘Action on Stigma’ to tackle discrimination in the
workplace.
• Department of Work and Pension’s Pathways to Work
scheme, developed in conjunction with the National Social
Inclusion Programme.
Key Evaluations of Mental Health Stigma Reduction Programs
Indian Studies
Name of the authors
Year Findings
Thara and Srinivasan
(2000) Marriage, fear of rejection from neighbour and the need to hide the fact from others were some of the more stigmatizing aspects.
Female gender of patient and younger age of the caregiver and patient were related to higher stigma.
Srinivasan and Thara
(2001) Psychosocial stressors were most commonly cited, followed by personality defect and heredity
Kohn etal., ( 2004) The stigma, myths and misconceptions surrounding mental disorders have been identified as the major reason for a large number of patients not seeking treatment
Contd…
Name of the authors
Year Findings
Loganathan& Murthy,
(2008) A study from NIMHANS found significant differences on stigma among rural and urban patients having schizophrenia.
Urban respondents felt the need to hide their illness and avoided illness histories in job applications, whereas rural respondents experienced more ridicule, shame, and discrimination
Mishra et al., (2009). Found more stigma among persons with better insight
Future Directions • Efforts are necessary to sustain momentum created by WPA
global program
• More focus on intervention towards common & disabling mental
illness
• Further research for clearer understanding of cross cultural
nature of stigma.
• Further research will also guide the most effective or a
combination of strategies to reduce stigma.
Conclusion• Stigma about mental illness can lead people to fear disclosing
that they have mental health problems, which may prevent
treatment and recovery.
• Stigma can result in limited life opportunities.
• Stigma poses barriers for public health prevention efforts
designed to minimize onset of mental illness and the prevention
or worsening of symptoms over time.
Contd…• Stigma can result in lower prioritization for public resources
allocated to mental health services and poorer quality of care
delivered to people with mental illness.
• Despite general improvement in knowledge about mental illness,
mental disorder continues to receive a great amount of
prejudice, discrimination, and stigma from the public.
• Anti stigma interventions should continue more effectively for
improving knowledge among society & better treatment of
mentally ill.
References
• Brohan E, Slade,M , Clement S, Thornicroft G(2010) Experiences of mental illness stigma, prejudice and discrimination: a review of measures. BMC Health Services Research
• Charles, H., Manoranjitham, S.D. & Jacob, K.S. (2007) Stigma and explanatory models among people with schizophrenia and their relatives in Vellore, South India. International Journal of Social Psychiatry, 53, 325 – 332
• Corrigan, P.W. & Watson, A.C. (2002) Understanding the impact of stigma on people with mental illness. World Psychiatry, 1(1), 16 – 20
• Corrigan P.W, Morris S. B., Michaels PJ, Rafacz JD, Rüsch N (2012) Challenging the Public Stigma of Mental Illness: A Meta-Analysis of Outcome Studies, Psychiatric Services 63:963–973,
• Crisp, A., Gelder, M., Rix, S., Meltzer, H., & Rowlands, O. (2000). Stigmatisation of people with mental illnesses. British Journal of Psychiatry, 177, 4-7.
• Haghighat R. (2001) A unitary theory of stigmatisation, Pursuit of self-interest and routes to de-stigmatisation, British Journal of Psychiatry, 178, 207-215
• Kohn, R., Saxena, S., etal. (2004) The treatment gap in mental health care. Bulletin of the World Health Organization, 82, 858-866
References
• Lawrence H, Yang L H, VaughnsV P, Kotabe H, Link B G, Sawe A, Wong G, Phelan J C(2013) Culture, threat, and mental illness stigma: Identifying culture-specific threat among Chinese-American groups, Social Science & Medicine 88, 56-67
• Link B Q., Yang L H., Phelan J C., and Collins P. Y.. (2004) Measuring Mental Illness Stigma, Schizophrenia Bulletin, Vol. 30, No. 3,
• Link BG, Cullen FT, Struening E, Shrout P, Dohrenwend BP. (1989) A modified labeling theory approach in the area of mental disorders: An empirical assessment. American Sociological Review 54:100-23.
• Link, B. & Phelan, J. (2001) Conceptualizing Stigma. Annual Review of Sociology 27(3): 363–85
• Loganathan, S.&Srinivas Murthy, R. (2008) Experiences of stigma and discrimination endured by people suffering from schizophrenia. Indian Journal of Psychiatry, 50(1), 39 – 46
• Mishra, D.K., Alreja, S., Sengar, K.S., etal. (2009) Insight and its relationship with stigma in psychiatric patients. Indian Journal of Psychiatry, 18 (1), 39 – 42
References
• Ngui, E.M., Khasakhala, L., Ndetei, D., etal. (2010) Mental disorders, health inequalities and ethics: A global perspective. International Review of Psychiatry, 22(3), 235 – 244
• Perlick D.A, Rosenheck R.A., Clarkin J F, Sirey J A, Salahi J, Struening E L , Link B G(2001) Adverse Effects of Perceived Stigma on Social Adaptation of Persons Diagnosed With Bipolar Affective Disorder, Psychiatric services, Vol. 52 No. 12
• Peterson D, Barnes A., and Duncan C (2008) , Fighting Shadows, Self-stigma and Mental Illness Whawhai Atu te Whakamā Hihira
• Ping Tsao, C.I., Tummala, A., Roberts, L.W. (2008) Stigma inMental Health Care. Academic Psychiatry, 32, 70 - 72
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do Indian families believe in supernatural causes? Social Psychiatry and Psychiatric Epidemiology. 36: 134-140
• Thara R, Srinivasan T. N.(2000) How stigmatizing is schizophrenia in India? International Journal of Social Psychiatry. ;46:135–141
References
• Thio, Allex,(2001) Deviant Behavior, 6th ed., Allyn & Bacon
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Thank you
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