1. Elements of Participation: Using Concept Mapping to understand Participatory Research Panel on Mental Health Recovery, Self-Determination & Adverse Childhood Experiences 143 rd Annual APHA Meeting November 19, 2014, PhD Nathan S. Kline Institute for Psychiatric Research

2. Presenter Disclosures Mary Jane Alexander No relationships to disclose

3. Team & Funding Mary 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

4. PUBLIC MENTAL HEALTH & CAPABILITIES: A DEVELOPMENT PROJECT Recovery as Freedom: The Capabilities Framework

5. 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

6. Capabilities are substantive freedoms… “…beings and doings that people have reason to value” Two aspects of substantive freedoms Opportunity 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

7. : 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

8. 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

9. A Lens on Human Development: Behavioral Health Conditions Sources Health - Colton & Manderscheid (2006) Literacy - Sentell and Shumway (2003) Income - Vick Jones Mitra (2011) Life Expectancy 25-32 years less than general population. Marginal Literacy Rates Half as likely as the general population to be at least marginally literate [50% v 75%] Income Below Poverty Line 3x more likely among Households where a member has a MH Disability Behavioral Health Conditions

10. 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

11. Reflection on the Center’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

12. 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

13. Concept Mapping Participants N=37 % Female62% Caucasian85% Consumer/survivor/ex patient35% Center Role Research Team member58% Center Leadership34% Administration27% Researcher33% Advocate46%

14. Overall Map What makes the Center Participatory? Relationships & Community Resources & Infrastructure Working Through Meaningful Conflict Research Approach & Capacity Changing how knowledge is created

15. 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

16. Break Down the Map: Most Important & Central Ideas are in Research Approach & Capacity Theme 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

17. Tied for Most Important: Strengthening Community through Inclusion of Multiple Stakeholders 2. RELATIONSHIPS & COMMUNITY 3. RESOURCES & INFRASTRUCTURE 4. WORKING THROUGH CONFLICT 1. 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

18. 3 rd Key Idea: Changing How Knowledge is Created Relationships & Community Resources & Infrastructure Working Through Meaningful Conflict Research Approach & Capacity Changing how knowledge is created

19. Resources & Infrastructure: Least important & cohesive overall. Ranked high by Center Administrative Core 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

20. 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?

21. Thank You! For more information on Center to Study Recovery in Social Contexts http://recovery.rfmh.org Mary Jane Alexander, PhD Nathan Kline Institute mja@nki.rfmh.org