A Longitudinal Study of Consumer

1. A Longitudinal Study of Consumer/Survivor Initiatives in Community Mental Health in Ontario Research Process and Preliminary Findings  Presenters: Geoff Nelson Joanna Ochocka Rich Janzen Alex Troeger Robert Chapman

2. A Longitudinal Study of Consumer/Survivor Initiatives in Community Mental Health in Ontario First, independent evaluation of Consumer/Survivor Initiatives in Canada Study funded by OMHF and CIHR, 1998-2004 Research partners: Wilfrid Laurier University, Centre for Research and Education in Human Services, Centre for Addiction and Mental Health, Ontario Peer Development Initiative Part of Ontario Community Mental Health Evaluation Initiative Crisis intervention Case management Consumer/survivor and family initiatives

3. Background of the Project Ontario Ministry of Health established a Community Health Evaluation Initative Proposal Development - 1997 Partners: Wilfrid Laurier University, Centre for Research and Education, Centre for Addiction and Mental Health, CSDI and CSIs Submission, letter of support from 17 CSIs, funding Announcement - February 1998 Start - April 1998 Site Selection - July - August 1998 First Steering Committee Meeting - September 1998 Research Team Hired and Trained - January 1999

4. Relevance to PSR Principles Focus on wellness rather than degree of illness Active participation and control for consumers in the research Research process considering the dignity and respect of all involved Capacity building and skill development through research Focus on supports in the community Providing employment and leadership opportunities for consumers

5. Purpose of the Longitudinal Study of Consumer/Survivor Initiatives To examine the activities and impacts of CSIs on new CSI members (individual level) and their communities (systems level)

6. A Participatory Action Research (PAR) Approach PAR is a research approach that involves active participation of stakeholders, those whose lives are affected by the issue being studied, in all phases of research for the purpose of producing useful results to make positive changes (Nelson, Ochocka, Griffin & Lord, 1998) Four mechanisms: Stakeholder steering committee Consumer/survivor researchers and research team meetings (training, support, problem-solving, participation) Connection with Coordination Unit based at CAMH Ongoing communication and information sharing

7. Consumer/Survivor Initiatives: A Unique Component of the Mental Health System Self help/mutual aid organizations that have been developed exclusively by and for people with serious mental illness CSIs - part of the mental health system in Ontario CSIs are non-service strategies that include: self-help and peer support groups, opportunities for developing skills and participation in artistic and cultural activities, etc. CSIs are guided by a set of values such as member empowerment, participation, social justice, sense of community and mutual learning Funded in 1991 by Ontario Ministry of Health, there are now more than 60 CSIs in Ontario however the way they are operated is an alternative to other mental health services. however the way they are operated is an alternative to other mental health services.

8. Consumer Survivor Initiatives:Similarities and Differences Similarities Central-West area of Ontario, similar population base all provide peer support to individual members all engage in systems change activities Differences rural-urban group vs. individual support drop-in vs. community-focused activities for members

9. Project Partners

10. Process of Working Together: Steering Committee Composition (representation) Purpose (to guide the all aspects of the research process) Process (how often, locations, typical meeting, personal experience) Challenges (participation over long period of time, making decisions about measurement tools)

11. Process of Working Together: Research Team Composition Purpose (training, tracking, communicating, reflecting, learning, trouble shooting, supporting) Process (how often, locations, typical meeting, personal experience) Challenges (people’s health, distance, turnover)

12. Process of Working Together: Coordination Working with the Coordination Centre of CAMH benefits (synergy, scanning, stronger impact) challenges (negotiations around common protocols, cleaning data) Working with Our Partners benefits (synergy, grounded, ownership, utilization) challenges (distance, duration, role clarification)

13. Researchers Expect to Find Individual Level Decreased use of mental health care Improved social supports Improved personal empowerment Better community integration Better access to valued resources (education, housing, employment Improved life satisfaction

14. System Level Better understanding of how CSIs operate Increased opportunities for consumer participation Increased psychological sense of community and peer support Better understanding of positive effects on communities and mental health system (public education, political advocacy, community planning, action research)

15. Methodology

16. Methodology: Individual Quantitative

17. Preliminary Findings: Individual Quantitative

18. Methodology: Individual Qualitative

19. Preliminary Findings: Individual Qualitative

20. Preliminary Findings: Individual Qualitative

21. Methodology: Systems Quantitative

22. Methodology: Systems Qualitative

23. Dissemination Strategies: Impact of the Consumer/Survivor Initiatives Study Interim reports and fact sheets summaries circulated in four participating organizations, other mental health organizations across Canada, Task Forces and Ministry of Health Presentations in Waterloo, Hamilton, Niagara Regions Conferences: IAPSRS, Qualitative Health Research Dissemination plan including book, video, magazine and journal articles Regular updates and actions within Community Mental Health Evaluation Initiative

24. What Does It All Mean? It is possible to study and document the impacts of consumer/survivor initiatives in a rigorous fashion using a participatory action research approach Consumer/survivor initiatives are an important resource to people with serious mental illness and to the broader communities in which they are situated Many different dissemination strategies are needed to spread the word about the impacts of consumer/survivor initiatives to create community and social change that benefits people with serious mental illness