TIME FOR ACTION ON STIGMA Untying the Gordian Knot

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TIME FOR ACTION ON STIGMA Untying the Gordian
Knot

• Neasa Martin
• Altered States Conference
• Brisbane, Australia June 2009

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Introduction

• Life-long family and personal relationship with
  mental illness
• 25 professional experience Rehabilitation
  Medicine
• Across the mental health system
• Consulting with government, NGOs, corporate
  clients
• Boundary walker

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Presentation Purpose

• Build a shared approach understanding
• Untangle Gordian knot of issues
• Review emerging research
• Share advice from International experts
• Show Canadian examples

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What is Stigma?

• A mark of shame, disgrace or disapproval
• Limits opportunities and options
• Influences identity
• Culturally defined and socially imposed
• Enduring
• Three variants
• Health-related Stigma
• Self Stigma
• Courtesy Stigma

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Why does it exist?

• Three related problems
• Lack of knowledge (ignorance)
• Negative attitudes (prejudice)
• Excluding/avoiding behaviours (discrimination)
• Repeated exposure to misinformation reinforces
  negative perceptions
• False beliefs are intensely held and enduring
• Results from fear and mistrust of differences

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What is its impact?

• Stigma is all-encompassing, with impacts on
• Self image, self-esteem and affect
• Help-seeking, treatment engagement outcomes
• Social role - multiple losses
• Social policy - government neglect
• Human rights - routinely violated
• Consumers experience stigma as disrespect and a
  barrier to social inclusion
• Stigma enables discrimination

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How is it being addressed?

• Hundreds of initiatives described in the
  literature
• A broad range of program objectives, such as
• Educating and dispelling myths
• Changing perceptions and attitudes
• Decreasing discrimination
• Varied target audiences, including
• The media
• The general public
• Legislators
• Multiple strategies, e.g.
• Plays, film and photo exhibits board games,
  puppet shows, awards etc.
• Personal testimony and speakers bureaux
• Conferences

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Most effective approaches?

• Few rigorous, peer-reviewed studied, experts
  agree that
• Reducing stigma is complex requires a complex
  approach
• Education
• Personal contact
• Protest
• Critical Success Factors include
• Consumer involvement and leadership
• Dedicated champion (s)
• Clearly articulated goals and objectives
• Consistent messaging
• Carefully targeted strategies
• Sustained, long-term approach
• Adequate funding
• Concurrent policy and legislative change

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On-line Survey of Canadians
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On-line Survey

• Exceeded expectation
• 1,325 responses (only 27 French)
• 56 Health Care Professionals
• 30 Consumers
• 26 Family
• 9 Researcher
• 8 Policy Planners
• 440 serve multiple roles
• 350 offered to support the MHCC
• Asked - elements of a effective campaign, how
  success is measured, who should be targeted, best
  advice for the Commission

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Emerging Themes

• High level of excitement anticipation
• MHCC provides voice, authority visibility
• Expectations are broad exceedingly high
• Desire for Big, Bold Action
• Consumers MUST play central role
• Activities are already underway
• Partner with the community
• Use existing leadership, expertise and reach
  Build their capacity to act -
• Experiment, innovate, evaluate and improve

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Contact is the method

• Targeting the heart as well as the head
• Shift from them us to we
• Normalize emphasize our shared humanity (1-5)
• Use both famous and regular people
• Share stories of triumph and success
• Challenge myths of violence, incompetence
• Focus on discrimination not stigma
• Change behaviours not attitudes
• Deal with systemic inequities

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Canadian Activities

• Over 100 programs identified
• Those with greatest promise
• Clear, consistent and simple message
• Sustained over time
• Personal face, authentic, normalizes mental
  illness, invokes empathy
• Challenge myths, provides factual message
  provides opportunity for discussion
• Differing opinions on what reduces stigma
• Any MI focus is seen to have a positive impact
• Programs developed in isolation
• Limited evaluation or research (skills )

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Targeting important

• Target groups

• Other priority areas

• Target everyone!
• Employers
• Policy planners and funders
• Social service personnel
• Thought leaders
• First Nations/ Aboriginal/ Inuit peoples require
  special focus developed from within the
  community

• Public 81
• Employers 80
• Police/Corrections 79
• Teachers 74
• Health prof. 72
• Caregivers/Family 66
• Media priority target
• Youth younger the better
• Addictions must be included

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Public Education Campaign

• Huge appetite for big multi-media, social
  marketing campaign
• Target the general public
• Clear, simple message
• Build understanding and compassion
• National focus, repeated, prolonged, sustained
• High quality creative, PSAs, TV, Radio, Print,
  Posters
• Success measures changes in public attitudes
• Demonstrates action by MHCC
• Misaligned with research expert opinion

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Conflicting content messages

• Bio-medical message

• Recovery message

• Sharing personal stories
• Focus on the challenges and the journey to help
• Identify what helped promote healing
• Promote peer-based support
• Educate about rights responsibilities
• Consumers are the experts
• Recovery is the goal
• Hope is the message

• Focus on biological causes
• Emphasize education - teach signs and symptoms of
  illness
• Stress the importance of treatment
• Build mental health literacy
• Include professionals as credible experts
• Conflicts with literature majority expert
  opinion - broaden

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Expert Interviews
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Expert Interviews

• Watershed event for Canada
• Capitalize be BIG, BOLD, VISIBLE
• Articulate a clear vision
• Plan for action not recommendations
• Be strategic take time to plan
• Think BIG act SMALL - build momentum
• Keep a national focus - systemic change
• Shift from stigma to discrimination
• Encourage local activity work as partners

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Target high impact groups

• WHO
• Schools start early
• Health/ mental health staff
• Policy planners/ funders
• Emergency staff
• Family / friends/ caregivers
• Corrections, legal, courts
• Social services
• Aboriginal communities
• Immigrant/ cultural groups

• HOW
• No general audience
• Lukewarm support for education as strategy
• Multi-media campaigns expensive little impact
  on QOL
• Set priorities
• Target change
• Focus message
• Peer-to-peer

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Media requires special focus

• Positive stories
• Build positive relationships
• Promote positive images normalize
• Educate the public
• Media watch
• Establish industry reporting standards
• Protest inaccurate information, stereotypic
  portrayals
• Easy to measure impact

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Evaluation research are critical

• Build research culture share knowledge
• Partner research program development
• Make research action-oriented
• No one approach - innovate, evaluate, refine
• Respect other ways of knowing
• Establish benchmarks and success indicators at
  front end standardized tools
• Measure what you plan to do repeat
• Create international linkages partner

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Recommendations

• Be the change that you want to see in the
  world.
• Mahatma Gandhi

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Articulate a clear, simple enduring vision

• Consumers/ users are the leaders
• Contact is the method
• Recovery is the goal
• Engaging the heart not just the head is the
  strategy
• Hope is the message

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Establish your goals

• Be big, bold create change
• Get some points of the score board
• Buys time to build a long range strategic plan
• Establish 2-3 year goals for flexibility
• Keep a national focus
• Change behaviour, not just attitudes
• Target and engage specific priority groups
• Address systemic inequities

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Create a shared understanding

• Create key messages on stigma discrimination
• Build a shared understanding define carefully
• Work closely with those in alignment
• Bring others along
• Build knowledge
• Sharing successes

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Plan carefully

• Develop a process for engaging consumers/ users
  in a leadership role
• Establish a working group with senior lead
• Link with MHCC Steering Committee
• Develop a multi-pronged approach to addressing
  stigma
• Identify who are the lead partners and/ or
  agencies for program delivery
• This is the marathon not the sprint

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Multi-pronged approach

• Development of contact/education strategies
• Targeted and segmented strategies
• Undertaken in partnership
• Culturally relevant, delivered locally
• Media engagement/media watch
• Ombudsman office policy watch

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Act as a catalyst for change

• Involve others build partnerships
• Use the skills of social marketing to get the
  message right
• Convene an expert Blue Sky Council
• Bring in free - creative thinking
• Move beyond singing to the converted

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Build a culture of research

• Create benchmarks and success indicators
• Build in at front end based on stated priorities
• Make success indicators action oriented
• Make benchmarks media worthy

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Measured what matters

• Make success indicators action oriented
• Survey QOL, experience of discrimination,
  recovery
• Benchmark health providers attitudes
• Understand disclosure, mobilize the 1/5
• Monitor funding, research and policy changes

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Make a commitment to act

• Create Consumer focused Scholarship Grant
  Program
• Fund activities aligned with key messages
  priorities
• Support contact strategies
• Build community capacity
• Promote multi-sector funding partnerships
• Link to in-kind resources (marketing, creative,
  research)

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The last word

• To the people of Canada, I say welcome us into
  society as full partners. We are not the be
  feared or pitied. Remember, we are our mothers
  and fathers, sisters and brothers, your friends,
  co-workers and children. Join hands with us and
  travel together with us on our road to recovery.
• Roy Muise 9 May 2005 - Halifax

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Discussion