Independent Choices:

1. Consumer/Survivor Research:A 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

2. Research ought to and can enhance consumer choice, power, and knowledge* *From Consumer/Survivor Mental Health Research & Policy Work Group (1993)

3. 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.

4. 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.

5. 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.

6. 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.

7. 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.

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

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

10. 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.

11. Towards a Consumer/Survivor Research Agenda The Well-Being Project: Mental Health Clients Speak for Themselves (1986-1989)

12. 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 consumer’s 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.”

13. 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

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

15. 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

16. Triangulation: clients (N=331) family members (N=53) mental health professionals (N=150) Convenient sample Consumer surveyors face-to-face interviews self-administered interviews (mail) group interviews

17. 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

18. 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 don’t 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%)

19. 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.

20. 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.

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

22. 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.

23. 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.

24. 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

25. 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

26. 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

27. Phase One (1996-1997) • National Survey of Data Needs of Peer Support Programs (N=30) • Sorting and ranking of survey items from review of consumer literature and instruments • Instrument development • IRB approval

28. Phase Two (1997-1998) • Protocol Field-testing • Instrument review and refinement • organization • clarity of item wording • respondent burden • ease of administration • consumer sensitivity

29. Phase Three (1998-2000) • Development of Interviewer Training Manual • Development of Q-by-Q • Psychometric Testing (test N=150; retest=48) • reliability • validity

30. Phase Four (2000-2001) • Tool Kit Development • Knowledge Exchange • Plans for APS (application program services)

31. Consumer Operated Service Program (COSP) Consumer-Operated Service Program Multi-Site Research Initiative (1998-2002)

32. 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.

33. 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).

34. 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.

35. 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

36. Connecticut Florida Illinois Maine Missouri Pennsylvania Tennessee Participating Study Sites

37. What is a COSP? A consumer-operated service is administratively controlled and operated by consumers and emphasizes self-help as its operational approach

38. Types of Consumer-Operated Services • Drop-in Centers • Educational & Advocacy Training Programs • Peer or Mutual Support Services

39. 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.

40. COSP Big Six Study Outcomes • Employment • Empowerment • Housing • Service Satisfaction • Social Inclusion • Costs

41. Research Design • Rigorous Methodology • Multi-site Design • Random Assignment • Experimental Intervention: Consumer-Operated Program + Traditional Mental Health Services Control: Traditional Mental Health Services Only

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

43. Key Operational Values • Consumer Involvement • Consumer Education • Extensive Technical Assistance • Electronic and Interactive Communications • Collaboration • Cultural Competency

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

45. 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”

46. A Learning Community Learning is the core objective and this should guide all decision-making. Mike English, CMHS

47. Consumer Operated Service Program (COSP) 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.org

48. 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.

49. 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.

50. 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.