WISE Health Care Increasing Inclusion, Hope and Support Reversing the Stigma of Mental Illness

Statewide collaboration of organizations 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 Awareness Dry Hootch Grassroots Empowerment Project Illinois Institute of Technology Latino Health Coalition – Mental Health Action Team MHA Sheboygan MHA Wisconsin Marian University NAMI WI, Fox Valley, Greater Milwaukee, Racine Prevent Suicide WI and local coalitions Rogers InHealth University of WI campuses WI Department of Health Services WI Family Ties WI United for Mental Health Wood County Health Department ETC. 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 4

 Patrick Corrigan PhD  And other stigma researchers in the U.S. and world Academic Research and Partnership

schizophrenia depression trauma anxiety eating disorders Drug and alcohol abuse They are us. 1 in 4 47% in our lifetime

What is stigma? Where does it come from?

8 Stigma Definition and Types Stigma Definition: 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.

11  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 Tim Denise

Avoidance and apathy  self esteem So, why try? I am not good Internalized Shame/Self Stigma Public Stigma  sense of efficacy I am not able

Characteristics of People Facing Mental Health and Addiction Challenges Stubborn Strong Resilient Flexibile Compassi onate Organized Intelligent Empathic Creative Funny Short Tall Old Young Agnostic Religious

14 Racial Oppression

15 Religious Oppression

Gender Oppression

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

18 Movies Drivers of Public Stigma Stories of unethical research, drug side effects & poor quality care Advertising

19 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

21 OK, but isn’t it better lately?

Trenton State Hospital has fire. July 10 th, 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 Source: BG Link, JC Phelan, M Bresnahan, A Stueve, BA Pescosolido American Journal of Public Health 89 (9),

…That figure held steady from 1996 to Source: BG Link, JC Phelan - The Lancet, 2006 Same is true for children: Psychiatr Serv 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 32 Stigma Change Processes

33  Protest o Review stigmatizing images o “Shame on you for thinking that way” o Be aware of unintended consequences of well intended actions o The rebound effect

34  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 alcohol BUT… ◦ They are more likely to be victims of violence

Schomerus, Schwann, Holzinger, Corrigan, Grabe, Carta, & Angermeyer, 2011 DOES STIGMA DECREASE AS 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 Decade of the Brain

41  Contact “I’d like you to meet Simone, Mike, Linda, Nneka, Paul, Charles, Val, Sumi, Denise, Tim, Mark and Dori”

42  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.

Yet, there exists a curtain of ignorance about resilience and recovery.

Resilience- 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.

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 50

Who Should the TARGETS Be? Health care professionals Employers Landlords Teachers Legislators Faith 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? 53

 Once is not enough  And variety is needed CONTINUOUS Contact 54

 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 60

the Grand Plan Speak up everyone Speak 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 efficacy I 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.org 6.Bring the conversation to your community – work, civic, faith, schools

Discussion