wise health care increasing inclusion, hope and support reversing the stigma of mental illness

WISE Health Care

Increasing Inclusion, Hope and SupportReversing the Stigma of Mental Illness

Statewide collaboration oforganizations and individuals

Promote evidence based practices, current research and outcomes evaluation

Majority speak from experience of stigma and recovery

Offer framework, consultation and resources for stigma reduction

Academic research advisor: Patrick Corrigan PhD, IL Institute of Technology

Care Connections (Waukesha County NAMI Support Group)Center for Suicide AwarenessDry HootchGrassroots Empowerment ProjectIllinois Institute of Technology Latino Health Coalition – Mental Health Action TeamMHA SheboyganMHA WisconsinMarian UniversityNAMI WI, Fox Valley, Greater Milwaukee, RacinePrevent Suicide WI and local coalitionsRogers InHealthUniversity of WI campusesWI Department of Health Services WI Family TiesWI United for Mental HealthWood County Health DepartmentETC.

WISE Partial List of Active Partners:

Explore stigma in a shame and blame free environment

Spotlight stigma in the culture of health care

Frame stigma change Connect to your work and lives

GOALS

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Patrick Corrigan PhD And other stigma researchers in the U.S. and

world

Academic Research and Partnership

schizophrenia

depressiontrauma

anxiety

eating disordersDrug and alcohol abuse

They are us.

1 in 4

47% in our lifetime

What is stigma?

Where does it come from?

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Stigma Definition and Types

StigmaDefinition:Stereotype (ideas) > Prejudice (beliefs) > Discrimination (actions) In a relationship of power = Oppression

Types: Internalized Shame Public Structural

Language?

Examples of Stereotypes- Ideas

People with mental health challenges are incapable, fragile, dangerous, cannot recover

Mark

Mike

Linda and Nneka

Val

Dori

Examples of Prejudice- Beliefs

They are scary, shameful, less than. Mental illness history overshadows other diagnostic information.

Charles

Simone

Sumi

A. van Nieuwenhuizen, et al. Emergency department staff views and experiences on diagnostic overshadowing related to people with mental illness. Epidemiology and Psychiatric Sciences, 2012.

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Social-I don’t want them to live next door, be a co-worker, marry into my family

Structural◦ Workplaces◦ Insurance companies◦ Schools◦ Etc.

Examples of Discrimination- Actions

Paul

Pastor TimDenise

Avoidance and apathy

self esteem

So, why try?

I am not good

Internalized Shame/Self StigmaPublic Stigma

sense of efficacyI am not able

Characteristics of People Facing Mental Health and Addiction Challenges

Stubborn

Strong

Resilient

Flexibile

Compassionate

Organized

Intelligent

Empathic

Creative

Funny

Short

Tall

Old

Young

Agnostic

Religious

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Racial Oppression

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Religious Oppression

Gender Oppression

Co-Occurring Stigma (public and internalized) Heterosexism Racism Sexism Ableism Etc.

2011 YRBS data showed LGBT youth in WI had:

- 5X the rate of suicide attempts - 3X more likely to skip school due to feeling

unsafe- 50% felt like they did not belong at school

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Movies

Drivers of Public Stigma

Stories of unethical research, drug side

effects & poor quality care

Advertising

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Benevolent Stigma

People with mental illness are “lovable and incapable”

Stigma’s Impact on SOCIAL INCLUSION

Lost employment Subpar housing Worse health care Diminished education opportunities Alienation from faith community

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OK, but isn’t it better lately?

Trenton State

Hospital has fire.

July 10th, 2002

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Despite what you might think, the percentage of Americans who viewed people with mental illness as dangerous doubled from 1956 to 1996.

Source: BG Link, JC Phelan, M Bresnahan, A Stueve, BA PescosolidoAmerican Journal of Public Health 89 (9), 1328-1333

1956 19960%

20%

40%

60%

80%

100%

20%

40%

% who viewed those with mental illness as danger...

1956 1996 20060%

20%

40%

60%

80%

100%

20%

40% 40%

% who viewed those with mental illness as danger...

…That figure held steady from 1996 to 2006.

Source: BG Link, JC Phelan - The Lancet, 2006

Same is true for children: Psychiatr Serv. 2007 May;58(5):619-25

Nurses in: • inpatient psychiatric units, • emergency departments and • intensive care units in particular, were found to hold blaming/hostile attitudes towards people with mental illness.

(Anderson & Standen 2007, Patterson et al. 2007, Thornicroft 2007)

Stigma/discrimination was frequently experienced by people with mental illness when using health services, particularly mental health services.

Data supports that services often increase burden of mental health problems on patients and families.

J Harangozo, et al. Stigma and discrimination against people with schizophrenia related to medical services. International Journal of Social Psychiatry 2014, Vol. 60(4) 359–366

Health Services

When am I most likely to notice fear, condemnation, frustration, anger, etc. rising within me related to behaviors that may be indicative of mental health challenges?

Personal Reflection

• Relative status of mental health professions

• Lack of capacity – “We/I can’t help you.”

• Don’t see enough recovery

• Concepts of compliance and relapse

• Misapplication of HIPPA

• Restraints on professional self-disclosure

• Professional burnout

• Levels of reimbursement, lack of parity, silos…

• Etc.

What Are The Drivers Of Stigma Within Health Care?

Stigma and Compassion Fatigue

• Feel a lack of capacity to effect change• Gradual lessening of compassion over

time• Avoid trying to understand what clients

face

In any given situation we can be:

Stigmatizers Stigmatized De-stigmatizers

(Healthcare Workers and Stigma, Ross C. A. & Goldner E. M.

2009)

Protest

Education

Contact

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Stigma Change Processes

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Protesto Review stigmatizing imageso “Shame on you for thinking that way”o Be aware of unintended consequences of

well intended actionso The rebound effect

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Education

Counters myths with facts

Myth: People with serious mental illness can not care for themselves; need to be institutionalized.

Fact: Long term follow-up research suggests 2/3rds of people with schizophrenia learn to live with their disabilities.

RECOVERY is the rule

Myth: People with serious mental illness are dangerous.

Fact: People with untreated mental illness are slightly more dangerous especially when using drugs or alcoholBUT…◦They are more likely to be victims of violence

Schomerus, Schwann, Holzinger, Corrigan, Grabe, Carta, & Angermeyer, 2011

DOES STIGMA DECREASEAS KNOWLEDGE INCREASES?Results from a meta-analysis study:

Knowledge: Causes of Mental Illness Stigma: Acceptance

Schomerus, Schwann, Holzinger, Corrigan, Grabe, Carta, & Angermeyer, 2011

Brain Disease

META-ANALYSIS FINDINGS: CAUSE

Schomerus, Schwann, Holzinger, Corrigan, Grabe, Carta, & Angermeyer, 2011

Neighbor

META-ANALYSIS FINDINGS: ACCEPTANCE

Impact?◦Blame went down◦Belief in recovery also went down

1990-2000 Decade of the Brain

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Contact“I’d like you to meet

Simone, Mike, Linda, Nneka, Paul, Charles, Val, Sumi, Denise, Tim, Mark and Dori”

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Their Recovery Story (part1)My name is ______ and I have faced mental health and/or addiction challenges…My childhood was… My mental health challenges were difficult for me and others. They did not go away quickly…

Their Recovery Story (part2)Combining my internal resources with external resources, I found my unique path to recovery…

I have achieved a satisfying life with several accomplishments.

Many education efforts have helped us to understand the pain of mental health crises.

Yet, there exists a curtain of

ignorance about resilience and

recovery.

Resilience and RecoveryResilience- the capacity of children and adults to succeed and thrive, despite experiencing trauma, mental illness and/or addiction. Resilient people have internal and external "protective factors.” Recovery- A process of change through which people work to improve their health and wellbeing, live a self-directed life, and strive to achieve their full potential.Four dimensions of recovery:

My Health A safe and supportive Home A sense of Purpose in my life Belonging to Community

(from SAMHSA)

Contact with someone with lived experience was more effective than education in reducing attitudes of avoidance.

controlgroup

education:danger-ousness

education:responsibility

contact:danger-ousness

contact:responsibility

-4

-3

-2

-1

0

1

2

3 pre post

controlgroup

education:danger-ousness

education:responsibility

contact:danger-ousness

contact:responsibility

-4

-3

-2

-1

0

1

2

3 pre follow-up

The effects of contact on attitudes of avoidance were sustained at the one month follow-up.

Solutions in the Medical Arena

Education AND Contact

And address other drivers: structural, burnout, etc.

Claire Henderson, et al. Mental health-related stigma in health care and mental health-care settings, LancetPsychiatry2014; 1: 467–82

Targeted Local Credible Continuous Change-focused Contact

TLC4

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Who Should the TARGETS Be?

Health care professionalsEmployersLandlordsTeachersLegislatorsFaith communities

x

MILWAUKEE

Does it play in

Wausau?

What is LOCAL Contact?

Contact with peer

Example- • Nurse to nurse• Pastor to pastor• Football player to football player

What is CREDIBLE Contact?

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Once is not enough

And variety is needed

CONTINUOUS Contact

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What do you want the target group to do differently as a result of the contact?

Ask those we serve!

CHANGE-FOCUSED Contact

More acceptance of me as a full human, less judgment

Labels would be less important Open communication – trust in

confidentiality and yet less need for confidentiality

No fear in my gut about how health care professionals will treat me

A stigma-free environment in health care:

My physical concerns would be taken seriously and treated no differently

Health care professionals would be more approachable

Disclosure would not be only my decision- providers would also make careful decisions to disclose or not

Peer support and peer advocates would have a strong voice within the organization

Stigma-free (cont)

Parent and family input would be welcomed, sought and respected

Regular collaboration between primary care, psychiatrists, therapist

The staff would be more educated about mental illness and recovery- know what they are doing

Care providers would readily admit to not knowing and seek advice from someone who does

Stigma-free (cont.)

Lack knowledge about my condition and feel uncomfortable not knowing

Burnout of professionals- # of patients, stuck in one way of treatment, close minded

They need more time for reflection, peer learning and support, self-care and encounters with people living in recovery

COMPASSION FATIGUE!

Reasons for Stigma?

Targeted Local Credible Continuous Change-focused Contact

TLC4

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the Grand PlanSpeak up everyoneSpeak up everywhere

Honest, Open & Proud

“strategic disclosure”

Carefully

Levels of Disclosure

Social Avoidance – avoid situations

Secrecy – work to keep it a secret

Selective Disclosure – share it with select

people

Open Disclosure – no longer hide it

Broadcast Your Experience – actively share it

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Your Recovery Story

Do I encourage one to disclose- what to say, when, to whom, etc. (HOP is a WISE resource)

Do I disclose?

Ethical Implications of Strategic Disclosure in Health Care

Three principles guide ethical aspects of self-disclosure: ◦ To act for the other’s benefit;◦ To do no harm; and ◦ Interests and welfare of the person served

always predominate.

Intentional self-disclosures may be:◦ Therapeutic, supportive and alliance-building;

or ◦ Seductive, exhibitionistic, and care-seeking.

Psychiatric Times (Guthell May, 2010)

Motivated engagement

self esteem

I care for myself & others

I am good

Reversing Self and Public Stigma

Public Stigma

sense of efficacyI am able

Inclusion and Self-Directed Support

Engage Organizations Seeking to Reduce Stigma

Train/Support Storytellers

General Public Programs/Contact

Components:

1. WISE Basics Discussion

2. Support for Strategic Disclosure HOP

3. Consultation with organizations as they Design, Implement and Evaluate TLC4

4. Share learnings statewide

What YOU Can Do Today  1. Seek out people with lived experience - listen to

their story.2. Reinforce & support their resilience & recovery.3. Wear lime green to create curiosity - be

prepared to speak up.4. Consider the story you can tell about recovery 5. Share other’s stories – one resource for short

video stories is Rogersinhealth.org6. Bring the conversation to your community –

work, civic, faith, schools

Discussion