Integrating Diverse Cultures into the Conduct of Research Jean Campbell, PhD Program in Consumer Stu

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Integrating Diverse Culturesinto theConduct of
ResearchJean Campbell, PhDProgram in Consumer
Studies Training

• National Conference in Mental Health Statistics
• June 1, 2000
• Mayflower Hotel, Washington DC

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Background

• In the past 20 years self-help groups have become
  an important way of helping people cope with
  various life crisis.
• Need for human interaction
• Quick availability in crisis, at all hours,
  for potentially long
• periods of time
• Focus does not make basic changes in outlook or
  personality
• Sustain the ability of members to cope with
  difficult
• situations

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Principle of Self-Help

• Help is best received when the recipient has
  direct control over the help and there is
  reciprocity between those who give help and those
  that receive it.

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Background

• The benefits of mutual aid are experienced by
  millions of people who turn to others with
  similar problems to attempt to deal with their
  isolation, powerlessness, and alienation.
• Former U.S. Surgeon General C. Everett Koop

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Background

• Approximately 7.5 million Americans participate
  in as many as one-half million self-help groups
  (Lieberman Snowden, 1994)

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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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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 in perceptions 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 services emerged in the 1980s
  as an alternative to traditional mental health
  services.
• De-institutionalization returned consumers to the
  community without an adequate or appropriate
  service system to meet their needs.
• Community mental health system developed with
  little or no input from people who receive
  services.
• Revolving door pattern of care was a sign of
  system distress.
• Divergent views between professional and consumer
  perceptions compromise ability of
  professionals to meet consumer needs.
• Traditional mental health services are both
  diseased-based, and may utilize coercion in
  providing services.

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Goals of Consumer-run Programs
Provide a safe, supportive community
environment Provide an atmosphere of
acceptance Promote self-worth, dignity, and
respect Increase knowledge by learning from one
another
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Challenges

• To survive in an era of managed care,
  consumer-operated services need to examine the
  cost, effectiveness, quality, utilization and
  appropriateness of the services they provide.

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Challenges

• Consumer-operated services must develop
  infrastructure to collect and process data
  without destroying the fundamental strengths of
  such services.
• 40 indicated data collection would discourage
  service use
• 43 indicated data collection would burden program

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Opportunity

• Drawing upon the knowledge of consumers
  providers, the mental health system can take
  advantage of the development of consumer programs
  to rethink the current array of services
  available to people with serious mental illness,
  to be more effective and humane, and support the
  goals of recovery, empowerment, and a quality of
  life.

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Integrating Cultures in the Conduct of Research

• The failure to include consumers and other
  culturally diverse groups within services
  research may have
• compromised research findings
• and 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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• The Consumer-Operated Service Program (COSP)
  Multi-Site Research Initiative began in September
  of 1998 to discover to what extent COSPs as an
  adjunct to traditional mental health services are
  effective in improving the outcomes of people
  with serious mental illness.
• During the four year study, more than 2,500
  consumers will take part in the research at study
  sites across the nation that include drop-in
  centers, education and advocacy training efforts,
  and peer or mutual support groups.

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• While the primary goal of the initiative is to
  determine how participation in both COSPS and
  traditional mental health service programs affect
  costs of services and outcomes for recipients, a
  secondary goal is to
• create strong and productive partnerships among
  consumers, service providers and services
  researchers
• that demonstrate to the field that these groups
  are capable of complementing each others
  strengths
• and that their joint efforts will yield the most
  effective service delivery models possible.

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Emerging Changes

• This presentation will discuss the organizational
  structures, communication systems, and group and
  personal interactions that have emerged in the
  effort to integrate diverse cultures in the
  conduct of research.

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Culturally Competent Research

• Issues posed by the Substance Abuse and Mental
  Health Services Administration to conduct
  research in a culturally competent manner, have
  been addressed by the COSP project with
  surprising results.

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COSP Research Strives for Multiculturalism

• Established Diversity Task Force
• Research protocols reviewed for sensitivity and
  appropriateness
• Presentations on Cultural Competency
• Focus on interviewer training
• Technical Assistance for Diversity

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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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• For example, researchers have tended to look at
  the way interventions affect the service delivery
  system, while consumers will ask What does it do
  for my life?

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Impact of Participation

• Until the introduction of participatory models in
  the conduct of research, mental health research
  has focused on symptom reduction, recidivism, and
  treatment compliance, rather than exploring the
  key consumer outcomes of recovery and
  empowerment.

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• On the other hand, consumers have resisted
  looking at the influence of diagnosis and symptom
  severity on these outcomes, supporting social
  rather than biological or disease models of
  investigation.

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Tension in Choosing Measures

• Consequently, when integrating these diverse
  cultures, the choice of measures is often
  contested.

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• The COSP multi-site research initiative has
  found ways for divergent views to be shared and
  reconciled that have enabled participants to make
  conceptual leaps
• in how they think about the production of mental
  health measurements
• and how they can use outcome information to
  understand and improve services.

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Bridging Differences

• Most important, bridging differences between
  people on a personal level has been supported
  through group activities that promote respect,
  understanding, and appreciation of the
  difficulties that collaboration presents.

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Communication Is Vital

• A constant flow of information back and forth
  between the people working together on this
  project has been accomplished through a variety
  of hard copy and computer-aided communication
  modes to facilitate discussion, problem solve
  collaboratively, and provide "real time"
  technical assistance.

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• COSP telecommunication services include
• (1) a web site
• (2) internet mailing lists
• (3) newsletter
• (4) teleconferencing and,
• (5) technical assistance manuals.
• In addition, a glossary of research terms for
  non-researchers has been published, and training
  in both research and the history of consumerism
  provided.

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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

• The COSP Multi-Site Research Initiative 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, the COSP Multi-Site Research
  Initiative will test the proposition that the
  integration of cultures in the conduct of
  research ought to and can enhance scientific
  knowledge that is useful and meaningful for all
  participant groups.