Approaches to Participatory Research in Children’s Mental Health

Or: How I Learned to Stop Worrying and Love Participatory Research

Mike PullmannUniversity of Washington School of Medicine

Public Behavioral Health & Justice Policy

Grand RoundsSept 20, 2010

What is participatory research?

• 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

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”

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

3 caseworkers responded correctly to all 6 situations

6 caseworkers responded correctly to 5 situations

23 caseworkers responded correctly to 4 situations

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

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)

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

Empty ritual? Empty ritual?

Or real power?Or real power?

“The Ladder of Participation” Arnstein, 1969

Applied to children’s mental health services by Turnbull, Friesen, and Ramirez (1998).

“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?

“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

“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

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

Two broad classes of participatory approaches: Ideology

Views and assumptions

Utilitarian tradition Liberatory tradition

Decision making

Open, rationalClosed, based on politics and

power

StakeholdersNon-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

“One of the biggest challenges to successful

partnership between families and evaluators—to real family engagement in evaluation—are issues of

power.”

(Slaton, 2004)

Knowledge Power Example of oppression

Example of liberation

Representative Issues, facts, objective data

Advocacy Funding 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

Knowledge Power Example of oppression

Example of liberation

Representative Issues, facts, objective data

Advocacy Funding 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

Knowledge Power Example 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

Knowledge Power Example 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.

The two traditions and power/knowledge

Views and assumptions

Utilitarian tradition Liberatory tradition

Role of research

Incremental system improvement

System restructuring

Knowledge RepresentativeRepresentative, Relational,

and Reflective

PowerData-based advocacy in open, flat systems

Advocacy, organizing, and education in closed, hierarchical systems

• 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)

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

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?