1. Approaches to Participatory Research in Children’s Mental Health Or: How I Learned to Stop Worrying and Love Participatory Research Mike Pullmann University of Washington School of Medicine Public Behavioral Health & Justice Policy Grand Rounds Sept 20, 2010

2. What is participatory research?

3. Present some examples of participatory research Describe the theoretical context of Participatory Action Research Describe a framework of knowledge and power Examine how current children’s mental health research fits into this context and framework Goals for this presentation

5. Example 1: The “Custody Problem” Anecdotal reports of custody relinquishment to obtain MH services No national or state estimates of the problem Three reasons custody relinquishment occurs: –Financial –Treatment issues –Legal liability Partnership with family organization for legislative change “Voluntary Child Placement Agreement” vs. “Voluntary Custody Agreement”

6. Caseworker knowledge Interviews completed with 127 randomly selected caseworkers who may have to use the VCPA Questions about when it is appropriate to use a VCPA 25% reported not having enough knowledge of VCPA to be able to answer any questions about it

7. 3 caseworkers responded correctly to all 6 situations 6 caseworkers responded correctly to 5 situations 23 caseworkers responded correctly to 4 situations

8. Example 2: Family participation in systems of care research The impact of the System of Care grants (Children’s Service Program or CSP) is widespread and will continue for decades Since 1993: 126 communities funded at a total cost of $1.1 billion Family involvement at all levels is a guiding principle CSP requires participatory evaluation but researchers may not be trained or experienced Family participation in evaluation evolved, it was not begin as a community based participatory process

9. Family participation in systems of care research In a qualitative study of “exemplary” researchers at system of care grantee sites: –Over half reported having no academic training on family involvement in research –Over 2/3rds reported that they learned about participatory evaluation on the job (Jivanjee & Robinson, 2007)

10. Historical and theoretical context Grassroots family advocacy groups promoted family involvement in research Federally mandated family participation at all levels of the system of care Family evaluators in systems of care Professional evaluators dedicated to Participatory Action Research

11. Empty ritual? Or real power?

12. “The Ladder of Participation” Arnstein, 1969 Applied to children’s mental health services by Turnbull, Friesen, and Ramirez (1998).

13. “Authentic” participation Serves the interests of the community Is not exploitative Participants have real influence and power from start to finish Why would participation be “inauthentic” or manipulative?

14. “Inauthentic” participation Instant participation: Just add families and stir May emerge from: –Blatant exploitation and manipulation –Researcher inexperience with participatory approaches –Differing goals, values, and cultures of traditional research and family-based research (Koroloff and Friesen, 1997) –Difficulty in “scaling up” from local projects to national projects –Communities’ lack of desire to be involved in research –A mismatch between the type of participatory approach and the type of system that is being studied

15. “Inauthentic” participation What about the system of care? –Evaluation largely planned by experts on national evaluation team –Evaluation generally focuses on developing a traditional body of knowledge –Evaluation assumes cooperation and collaboration among various parties –Evaluation assumes that decision making is data- based and rational –Most grantee communities focus on meeting federal requirements for data collection rather than utilizing data locally or developing a comprehensive local evaluation

16. Two broad classes of participatory approaches The Utilitarian Tradition –“Northern,” “Collaborative Participatory Research” –1919: Chicago Race Riots/Charles S. Johnson –1940’s: WWII, Kurt Lewin –Participation as “added value” The Liberatory Tradition –“Southern,” “Radical” –Marx, Freire, Bud Hall –1960’s and 70’s: Vietnam, social unrest, popular education –Participation as system transformation

17. Two broad classes of participatory approaches: Ideology Views and assumptions Utilitarian traditionLiberatory tradition Decision making Open, rational Closed, based on politics and power Stakeholders Non-hierarchical, roughly equal resources and power Hierarchical, inequitable distribution of resources and power Problem solving Cooperative and consensual Conflictual: powerful and powerless are opposed Role of researcher Discover facts and create knowledge to use in decision making Advise and assist the less powerful in creating their own knowledge for advocacy, network building, and reflection

18. “One of the biggest challenges to successful partnership between families and evaluators—to real family engagement in evaluation—are issues of power.” (Slaton, 2004)

19. KnowledgePowerExample of oppression Example of liberation Representative Issues, facts, objective data AdvocacyFunding traditional power structures for evaluation and research; research is often blaming Advocating through professional leadership and issue- based argument Relational People relating and sharing perspectives Organizing and mobilizing Nondecision making--Excluding families from decision making in research and evaluation practice Organizing and mobilizing to demand authentic participation in research and evaluation Reflective Awareness of a problem and reflection on its roots and context Control over consciousness Insidious blaming, shaming, stereotyping of family members as incapable and powerless Critical reflection, awareness building workshops, empowerment and action Note. This table borrows heavily from Williams, 1999 and Gaventa & Cornwall, 2001

21. KnowledgePowerExample of oppression Example of liberation Representative Issues, facts, objective data AdvocacyFunding traditional power structures for evaluation and research; research is often blaming Advocating through professional leadership and issue- based argument Example: The “Custody Problem” study The effective use of representative knowledge to create social change requires: 1. A collective pursuit of knowledge based on the needs of the community 2. A place at the decision-making table However, power is often used to exclude communities from decision making

22. KnowledgePowerExample of oppression Example of liberation Relational People relating and sharing perspectives Organizing and mobilizing Nondecision making--Excluding families from decision making in research and evaluation practice Organizing and mobilizing to demand authentic participation in research and evaluation Example: Family support and advocacy groups Relating concerns to each other creates shared meanings and understanding of experience Data alone cannot create change; social change requires the organization and mobilization of the community

23. KnowledgePowerExample of oppression Example of liberation Reflective Awareness of a problem and reflection on its roots and context Control over consciousness Insidious blaming, shaming, stereotyping of family members as incapable and powerless Critical reflection, awareness building workshops, empowerment and action Example: The “Custody Problem” study Several frames of consciousness may have prevented the custody issue from being addressed, including blame, suspicion of caregivers involved in child welfare, and the American value of independence. Advocates and researchers successfully reframed the issue as a tragedy that happened to real families, and that the child welfare system was a rigid bureaucracy stuck in old policies.

24. The two traditions and power/knowledge Views and assumptions Utilitarian traditionLiberatory tradition Role of research Incremental system improvement System restructuring KnowledgeRepresentative Representative, Relational, and Reflective Power Data-based advocacy in open, flat systems Advocacy, organizing, and education in closed, hierarchical systems

25. Family evaluators report less involvement in data review and utilization Sites vary widely on the influence and decision making of family evaluators Family evaluators often feel tokenized Family involvement in system of care research often means training families to be more like professional researchers (representative knowledge) Family participation in systems of care— conclusions from existing research Bates, 2005; Jivanjee & Robinson (2007); Koroloff, et al. (2010); Osher, van Kammen, & Zaro (2001)

26. Recommendations for the system of care 1. Train researchers and evaluators in principles of community organizing and adult education 2. Reduce the burden of the national evaluation and increase the expectation for a local applied evaluation 3. Place some of the funding authority for the evaluation into the hands of family advocacy groups

27. Questions to ask ourselves Is power shared among service providers, administrators, and consumers or families? Who developed the research questions? How useful is the knowledge that may be uncovered? –For who? How could it be used? Does the research have any organizing or mobilizing component? Do you have a plan for continual reflection on the research findings with the entire community?