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
What is participatory research?
Goals for this presentation
• 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
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)
Federally mandated family
participation at all levels of
the system of care
Professional evaluators
dedicated to Participatory
Action Research
Family evaluators
in systems of care
Grassroots family advocacy
groups promoted family
involvement in research
“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 databased 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, 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
“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 issuebased 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
Insidious blaming,
shaming,
stereotyping of
family members as
incapable and
powerless
Critical reflection,
awareness building
workshops,
empowerment and
action
Reflective
Control over
Awareness of a consciousness
problem and
reflection on its
roots and
context
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 issuebased 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
Reflective
Control over
Awareness of a consciousness
problem and
reflection on its
roots and
context
Example of
oppression
Example of
liberation
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
Representative
Representative, Relational,
and Reflective
Power
Data-based advocacy
in open, flat systems
Advocacy, organizing, and
education in closed,
hierarchical systems
Family participation in systems of care—
conclusions from existing research
• 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)
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?