ConsumerSurvivor Research: A Decade of Learning Jean Campbell, Ph'D' Missouri Institute of Mental He

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Consumer/Survivor ResearchA Decade of
LearningJean Campbell, Ph.D.Missouri Institute
of Mental Health

• Independent Choices
• A National Symposium on Consumer-Direction and
  Self Determination for the Elderly and Persons
  with Disabilities
• June 11, 2001 Washington, DC

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Research ought to and can enhance consumer
choice, power, and knowledge
From Consumer/Survivor Mental Health
Research Policy Work Group (1993)
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Integrating Diverse Cultures into the Conduct of
Research

• The failure to include consumers and other
  culturally diverse groups within services
  research may
• compromise research findings
• hinder the ability of service providers and
  policy-makers to understand consumer needs.

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Nothing About Me, Without Me

• Adopting the slogan Nothing about me, without
  me, mental health consumers and people of color
  have moved rapidly to be involved in the design
  and implementation of mental health services
  research and evaluation.

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• The growth and acceptance of such partnerships
  show the potential for progress when different
  cultures work together in relationships of
  mutuality and respect.
• However, the inclusion of diverse groups within
  the conduct of research has presented interesting
  challenges that expert-driven models of
  research have proven inadequate to address.

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• In particular, the empowerment of mental health
  consumers in the administration, design,
  implementation, and analysis activities has
  necessitated an on-going dialogue between
  consumers, consumer researchers, and non-consumer
  researchers to reach common ground regarding
  issues of
• authority,
• expertise,
• and language.

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What Divides Us

• It is important to remember that mental health
  programs, including those that are
  consumer-operated, function within a political
  system in which data are often exercised in
  struggles for influence.

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• There is no common language or experiences that
  would naturally bring different constituencies
  together.

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• Values and goals that arise from culturally
  dissimilar experiences, tend to separate people
  and polarize discussion.

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Bridging Differences

• Bridging differences between people on a personal
  level needs to be supported through group
  activities that promote respect, understanding,
  and appreciation of the difficulties that
  collaboration presents.

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Towards a Consumer/Survivor Research Agenda

• The Well-Being Project
• Mental Health Clients Speak for Themselves
• (1986-1989)

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• In 1979 Prager and Tanaka reported to the Ohio
  Department of Mental Health on the results of
  involving mental health consumers in evaluation.
  They concluded Representing the consumers
  perspective on the meaning of mental illness and
  the correlates of getting better, the process
  of client involvement in evaluation design and
  implementation is not only realistic and
  feasible it is, we feel, a professional
  necessity whose time is overdue.

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A Landmark Study

• Funded by the California Department of Mental
  Health Office of Prevention
• First consumer research project Conducted by the
  California Network of Mental Health Clients
• Jean Campbell, Principal Investigator
• Ron Schraiber, Co-Investigator

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Research Question

• What promotes or deters the well-being of adults
  with severe and persistent mental illness in
  California?

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Study Design Developed, Administered and
Analyzed by Mental Health Consumers

• State-wide Survey
• Qualitative and Quantitative Methods
• focus groups to develop items
• open-ended questions included
• in-depth interviews
• multiple choice, likert scaled items

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• Triangulation
• clients (N331)
• family members (N53)
• mental health professionals (N150)
• Convenient sample
• Consumer surveyors
• face-to-face interviews
• self-administered interviews (mail)
• group interviews

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Discovering the Consumer Perspective

• Asking New Questions
• negative outcomes identified
• self-management skills revealed
• importance of personhood established
• effects of prejudice and discrimination
  quantified
• incongruity of values, perspective, and
  identified needs between consumers, family
  members, and mental health professionals found

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Findings

• 40 of mental health clients surveyed felt that
  all or most of the time people treated them
  differently when they found out they have
  received mental health services.
• like they are violent (16)
• like a child (21)
• like they dont know what is in their own best
  interest (31)
• like they are in capable of caring for children
  (20)
• like they are incapable of holding a job (33)

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Findings

• More than half of the clients surveyed indicated
  that they always or most of the time
  recognize signs or symptoms of psychiatric
  problems and that they can take care of these
  problems before they become severe.

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Findings

• 48 indicated that they have avoided treatment
  due to fear of involuntary commitment.
• 30 reported that they had little or no
  control over the kind of mental health services
  they receive.

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Peer Support Outcomes Protocol

• Development of an Evaluation Protocol for
  Community-Based Peer Support Programs
• (1996-2001)

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Consumer-operated peer support programs emerged
in the 1980s as an alternative to traditional
mental health services. To survive in an era of
evidence-based funding, peer support programs
need to measure cost, effectiveness,
quality, utilization and appropriateness of
the services they provide.
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Purpose of the POPP

• The Peer Support Outcomes Protocol Project
  developed, field-tested, and will soon distribute
  an evaluation protocol that measures outcomes and
  satisfaction of community-based peer support
  programs that are operated by mental health
  consumers/survivors.

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Consumer-Developed Project

• Protocol developed and tested by the Program in
  Consumer Studies and Training at the Missouri
  Institute of Mental Health in St. Louis.
• Funded by the National Research and Training
  Center on Psychiatric Disability at the
  University of Illinois-Chicago

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Outcome DomainsSpecific outcome domains
organized into individual modules

• Demographics Services Hospitalizations
• Employment Housing/Community Life
• Social Support Quality of Life
• Well-Being (Recovery, Empowerment Personhood)
• Crime/Violence Program Satisfaction

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Use of the POPP

• Assist the consumer self-help field to assess
  program outcomes
• Present service outcomes to public funding
  authorities and manage-care organizations
• Help consumers improve the organization and
  delivery of peer support programs

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Phase One (1996-1997)

• National Survey of Data Needs of Peer Support
  Programs (N30)
• Sorting and ranking of survey items from review
  of consumer literature and instruments
• Instrument development
• IRB approval

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Phase Two (1997-1998)

• Protocol Field-testing
• Instrument review and refinement
• organization
• clarity of item wording
• respondent burden
• ease of administration
• consumer sensitivity

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Phase Three (1998-2000)

• Development of Interviewer Training Manual
• Development of Q-by-Q
• Psychometric Testing (test N150 retest48)
• reliability
• validity

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Phase Four (2000-2001)

• Tool Kit Development
• Knowledge Exchange
• Plans for APS (application program services)

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Consumer-Operated Service Program

• Multi-Site Research Initiative
• (1998-2002)

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Self-Help Research

• Numerous research studies show that participation
  in self-help groups can help people improve the
  quality of their lives significantly.
• Studies show that support groups can reduce the
  need for medical care and hospitalization.

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Consumer Self-Help Research

• Found a decline in both symptoms and concomitant
  psychiatric treatment as a result of
  participation in consumer-operated services
  (Galanter, 1988).
• Positive changes in perception of self, social
  functioning, decision-making, and symptomatology
  linked to participation in consumer-operated
  services (Carpinello et al., 1992).

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Consumer-Operated Service Program Multi-site
Research
The Consumer-Operated Service Program (COSP)
Multi-site Research Initiative is a
federally-funded national effort to discover to
what extent consumer-operated programs as an
adjunct to traditional mental health services are
effective in improving the outcomes of adults
with serious mental illness.
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Features of COSP

• At 20 million, COSP is one of the most
  significantly funded cooperative agreement in the
  current CMHS budget
• Seven study sites located throughout the U.S.
  and a Coordinating Center at the Program for
  Consumer Studies and Training (MIMH)
• Over 1850 participants recruited to date
• Four years of research supported

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Participating Study Sites

• Connecticut
• Florida
• Illinois

• Maine
• Missouri
• Pennsylvania
• Tennessee

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What is a COSP?

• A consumer-operated service is
  administratively controlled and operated by
  consumers and emphasizes self-help as its
  operational approach

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Types of Consumer-Operated Services

• Drop-in Centers
• Educational Advocacy Training Programs
• Peer or Mutual Support Services

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Target Population

• Study participants are defined as persons age
  18 and over who currently or at any time over the
  past year have had a diagnosable mental,
  behavioral, or emotional disorder of sufficient
  duration to meet diagnostic criteria specified
  within the DSM-IV that has resulted in functional
  impairment which substantially interferes with or
  limits one or more major
• life activities.

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COSP Big Six Study Outcomes

• Employment
• Empowerment
• Housing
• Service Satisfaction
• Social Inclusion
• Costs

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Research Design

• Rigorous Methodology

Multi-site Design Random Assignment
Experimental
Intervention Consumer-Operated Program
Traditional Mental Health
Services Control Traditional Mental Health
Services Only
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Research Design

• Logic Model
• Common Protocol
• Data Collection
• Baseline, 4, 8, 12 months
• Fidelity/Implementation Assessments
• Site Visits
• Common Ingredients

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Key Operational Values

• Consumer Involvement
• Consumer Education
• Extensive Technical Assistance
• Electronic and Interactive Communications
• Collaboration
• Cultural Competency

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Consumer Partnership

• SC Consumer Representatives
• Consumer Advisory Panel
• Site Consumer Advisory Boards
• Consumer Researchers
• Research Training
• Research Glossary
• Workshops
• Technical Assistance

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Building Consumer Trust

• Full access to project information
• Supportive communication infrastructure
• Consensus decision-making
• Telling our stories
• Use of the language we, our and us

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A Learning Community
Learning is the core objective and this should
guide all decision-making. Mike English, CMHS
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Visit our website
One of the hallmarks of the COSP is the effort
made to use technology to facilitate work and
disseminate information. http//www.cstprogram.or
g
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What Is Necessary

• In order to accommodate the diverse cultures that
  are now part of the research environment, it is
  necessary to pause and encourage critical
  discourse, and to incubate new relationships and
  ideas as participatory processes are established.

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Looking Within

• Consumer/survivor research has offered the
  opportunity to consumers and professionals to
  look within, and to re-search in a literal
  sense the terrain of a priori assumptions about
  how research should be conducted and by whom.

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The Need for Rigor

• Scientific rigor in methods and practices must be
  maintained since the weight of disbelief in
  public policy will surely demand that researchers
  push harder for clarity in research designs and
  data quality.

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Conclusion

• Ultimately, consumer participation in research
  will test the proposition that the integration of
  diverse cultures into the conduct of research
  ought to and can enhance scientific knowledge
  that is useful and meaningful for all participant
  groups.