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Elements of Participation: Using Concept Mapping
to understand Participatory Research
Panel on Mental Health Recovery,
Self-Determination & Adverse Childhood Experiences
143rd Annual APHA Meeting
November 19, 2014, PhD
Nathan S. Kline Institute for
Psychiatric Research
Presenter Disclosures
Mary Jane Alexander
No relationships to disclose
Team & FundingMary Jane Alexander, Deborah Layman,
Judy Sugarman, Christina Pratt, Kris Jones
& the community of
researchers, advocates, service users in the
Center to Study Recovery in Social Contexts
Supported by NIMH 078188 (Alexander P.I.)
Center to Study Recovery in Social Contexts
NYS Office of Mental Health
PUBLIC MENTAL HEALTH & CAPABILITIES: A DEVELOPMENT PROJECT
Recovery as Freedom: The Capabilities Framework
People are the real wealth of nations…
Development
Should…
…Enlarge Human Freedoms
…Expand People’s Choices to Lead Full & Creative Lives
…Include people as Beneficiaries & Agents of its progress and change
…Build on the participation of each person
Capabilities are substantive freedoms…
“…beings and doings that people have reason to value”
Two aspects of substantive freedomsOpportunity
freedom to achieve valued functionings – being safe, healthy, functionally literate, able to participate in civic life; able to participate in family and social life; having options for working, for housing
Process ability to take action in certain spheres of life - self-determination, participation, practical reason
:What really matters to the community?
Participation as Method
Community Based Participatory Research
• a collaborative approach
• combines inquiry, action & reflection
• expands opportunities for people given MH diagnoses to live Decent, Dignified & Distinctive lives
Recovery: Personal & Social Meanings
• Rediscovering meaning and purpose after a series of catastrophic events which mental illness is. Deegan, psychologist & activist
A personal journey of actively self-managing a psychiatric disorder while reclaiming, gaining & maintaining a positive sense of self, roles & life beyond the mental health system, in spite of the challenge of psychiatric disability.....Recovery is supported by a foundation based on hope, belief, personal power, respect, connections & self-determination.
Onken, Dumont et al, Mental Health Recovery
• The process in which people are able to live, work, learn and participate fully in their communities New Freedom Commission
A Lens on Human Development: Behavioral Health Conditions
Sources Health - Colton & Manderscheid (2006)Literacy - Sentell and Shumway (2003) Income - Vick Jones Mitra (2011)
Life Expectancy25-32 years less than general population.
Marginal Literacy RatesHalf as likely as the general
population to be at least marginally literate
[50% v 75%]
Income Below Poverty Line3x more likely among Households where a
member has a MH Disability
Behavioral Health Conditions
denial of a full lifespan
denial of choice of tradition
denial of education
denial of unfettered
communication
denial of participation in the market
denial of civil rights
denial of human rights denial of participation in
a democratic society
Unfreedoms
denial of agency
Reflection on theCenter’s Participatory Method
What Makes Us a Participatory Center?
• Develop a shared, structured conceptualization – a Concept Map of the Center’s CBPR approach
• CBPR Discussions by self identified role: Researcher, Advocate, Mixed
1. GROUP PROCESS to: – Brainstorm “What makes us a participatory center?”– Sort statements based on perceived similarity– Rate importance of each statement
2. STATISTICAL ANALYSIS to develop:• 2-D map of the statements similarity (Multidimensional scaling)• 3-D map that incorporated Importance & Cohesion • Clusters of the mapped statements (Cluster analysis)
3. GROUP PROCESS to interpret the Map
Concept Mapping
Concept Mapping Participants
• N=37
% Female 62%
Caucasian 85%
Consumer/survivor/ex patient 35%
Center Role
Research Team member 58%
Center Leadership 34%
Administration 27%
Researcher 33%
Advocate 46%
Overall MapWhat makes the Center Participatory?
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Cluster LegendLayer Value1 1.35 to 1.912 1.91 to 2.473 2.47 to 3.024 3.02 to 3.585 3.58 to 4.14
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Point LegendLayer Value
5 4.05 to 4.724 3.37 to 4.053 2.70 to 3.372 2.02 to 2.701 1.35 to 2.02
Relationships & Community
Resources & Infrastructure
Working Through Meaningful Conflict
Research Approach & Capacity
Changing how knowledge is created
Key Characteristics of Participation as Method
Most Central • Grounding Research in Lived Experience
Most Important • Strengthening Community through Inclusion of Multiple Stakeholders • Learning through Diverse and Conflicting Perspectives• Changing How Knowledge is Created
A Bridging Idea• Working through Meaningful Conflict
Break Down the Map: Most Important & Central Ideas are in Research Approach & Capacity Theme
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Cluster LegendLayer Value1 1.35 to 1.91
2 1.91 to 2.47
3 2.47 to 3.024 3.02 to 3.585 3.58 to 4.14
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Point LegendLayer Value
5 4.05 to 4.724 3.37 to 4.053 2.70 to 3.372 2.02 to 2.701 1.35 to 2.02
2. RELATIONSHIPS & COMMUNITY
3. RESOURCES & INFRASTRUCTURE
4. WORKING THROUGH MEANINGFUL CONFLICT
1. RESEARCH APPROACH & CAPACITY
5. CHANGING HOW KNOWLEDGE IS CREATED
Learning through diverse & conflicting perspectives : Map’s MOST IMPORTANT IDEA (tie)
Grounded Research in Lived Experience –Map’s MOST CENTRAL IDEA
Deliberate Reflection
Tied for Most Important: Strengthening Community through Inclusion of Multiple Stakeholders
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Cluster LegendLayer Value1 1.35 to 1.91
2 1.91 to 2.47
3 2.47 to 3.024 3.02 to 3.585 3.58 to 4.14
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Point LegendLayer Value
5 4.05 to 4.724 3.37 to 4.053 2.70 to 3.372 2.02 to 2.701 1.35 to 2.02
2. RELATIONSHIPS & COMMUNITY
3. RESOURCES & INFRASTRUCTURE
4. WORKING THROUGH CONFLICT1. RESEARCH APPROACH & CAPACITY
5. CHANGING HOW KNOWLEDGE IS CREATED
Becoming Aware of Missing Voices
Break Down Barriers to Participation
Map’s Most Important Idea (tie): Strengthen Community by Including Multiple Stakeholders
3rd Key Idea:Changing How Knowledge is Created
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Cluster LegendLayer Value1 1.35 to 1.912 1.91 to 2.473 2.47 to 3.024 3.02 to 3.585 3.58 to 4.14
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Point LegendLayer Value
5 4.05 to 4.724 3.37 to 4.053 2.70 to 3.372 2.02 to 2.701 1.35 to 2.02
Relationships & Community
Resources & Infrastructure
Working Through Meaningful Conflict
Research Approach & Capacity
Changing how knowledge is created
Resources & Infrastructure: Least important & cohesive overall. Ranked high by Center Administrative Core
5. s
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Cluster LegendLayer Value1 1.35 to 1.91
2 1.91 to 2.47
3 2.47 to 3.024 3.02 to 3.585 3.58 to 4.14
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Point LegendLayer Value
5 4.05 to 4.724 3.37 to 4.053 2.70 to 3.372 2.02 to 2.701 1.35 to 2.02
2. RELATIONSHIPS & COMMUNITY
3. RESOURCES & INFRASTRUCTURE
4. WORKING THROUGH CONFLICT
1. RESEARCH APPROACH & CAPACITY
5. CHANGING HOW KNOWLEDGE IS CREATED
Building Infrastructure to Support Diversity
Committed unanticipated resources for process
Further Reflections on Participation
• Community defined by a characteristic/interest rather than Geography
What is the price for CBPR/activist infused research to happen? - Conflicts based on Identity/Role:– Action + Research – when and how?– Re examine power and decision making– Success & Role Expectations - How do we define
our success together as partners?
Thank You!
For more information on Center to Study Recovery in Social Contexts
http://recovery.rfmh.org
Mary Jane Alexander, PhDNathan Kline [email protected]
