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Creating a better future for communities through research

Longitudinal Study of Consumer Survivor Initiatives (CSI) in Ontario 1997-2004

This is the first independent evaluation of mental health consumer-run organizations in Canada.  It is funded by the Ontario Ministry of Health and Long-Term Care through the Ontario Mental Health Foundation, and the Canadian Institutes of Health Research.

Madhouse to Our House, a DVD produced from the project, provides a brief history of mental health supports in Canada.  Click on the picture of the DVD cover to view it.

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Research Partners

The purpose of the study is to examine the activities and impacts of CSIs on new members (individual-level) and the communities within which the CSIs exist (systems-levels).

There are almost 60 CSIs in Ontario.  The researchers and partners selected four organizations to participate in the study Cambridge Active Self Help (CASH), Waterloo Region Self Help (WRSH), Mental Health Rights Coalition of Hamilton, Consumer/Survivor Initiatives of Niagara Region.  A steering committee of researchers and CSI representatives guides the project.  A research team including professional and Consumer/Survivor researchers implements this evaluation.

To learn more about this project, follow this link.

Steering Committee Members

Alex Troeger, Steering Committee Chair, Board of Member of WRSH

Lisa Gammage, Executive Director, Self Help Alliance CASH/WRSH

Judy Hoover, Executive Director, Consumer/Survivor Initiative of Niagara

Rich Janzen, Senior Researcher, Centre for Research and Education in Human Services

Shawn Lauzon, Executive Director, Ontario Peer Development Initiative

Geoff Nelson, Professor, Wilfrid Laurier University

Joanna Ochocka, Director, Centre for Research and Education in Human Services

Deborrah Sherman, Executive Director, Mental Health Rights Coalition of Hamilton

John Trainor, Director, Community Support and Research Unit, Centre for Addiction and Mental Health


Research Team

Robert Chapman, Research Assistant - Hamilton
Rich Janzen, Senior Researcher
Geoff Nelson, Principal Investigator
Joanna Ochocka, Project Manager
Kristen Roderick, Research Assistant - Kitchener/Waterloo, Cambridge
Leah Sagloski, Research Assistant - Niagara

The study is part of Ontario Community Mental Health Evaluation Initiative see www.ontario.cmha.ca/cmhei

Making a Difference: Ontario's Community Mental Health Evaluation Initiative Report.

Project Updates and Report

Consumer/Survivor Initiatives: Impact, Outcomes, and Effectiveness

Longitudinal Study of Consumer/Survivor Initiatives in Community Mental Health in Ontario: Individual-level and System-level Activities and Impacts - Summary Bulletin 2004

Longitudinal Study of Consumer/Survivor Initiatives in Ontario: Fact Sheets - March 2004

Consumer Survivor Initiative Summary Bulletin - February 2002

Consumer Survivor Initiative Progress Report - Summer 2001

Community Forums

Community Forum Feedback Session - Kitchener, April 16, 2004/Hamilton, May 18, 2004


Provincial Workshops Summaries

Ottawa Provincial Workshop Summary
London Provincial Workshop Summary
Kenora Provincial Workshop Summary
Thunder Bay Provincial Workshop Summary
North Bay Provincial Workshop Summary

Conference Presentations

Fifth International Advances in Qualitative Methods Conference - Edmonton January - February 2004

Published Articles

To obtain copies of these articles e-mail general@communitybasedresearch.ca
Nelson, G., Janzen, R., Trainor, J. & Ochocka, J. (in press). Putting values into practice: Public policy and the future of mental health consumer-run organizations. American Journal of Community Psychology. Special issue on consumer self help.

Nelson, G., Ochocka, J., Janzen, R., Trainor, J.Goering, P., &Lomotey, J.(2007). A Longitudinal Study of Mental Health Consumer/Survivor Initiatives: Outcome at Three Year Follow Up.Journal of Community Psychology, 35(5),655-665.

Janzen, R., Nelson, G., Hausfather, N. & Ochocka, J. (2007). Capturing system level activities and impacts of consumer-run organizations: Methods that inform future action. American Journal of Community Psychology. Special issue on systems change evaluation, 39, 287-299.

Nelson, G., Ochocka, J., Janzen, R., & Trainor, J. (2006). A longitudinal study of mental health consumer/survivor initiatives: Part I - Literature review and overview of the study. Journal of Community Psychology, 34, 247-260.

Nelson, G., Ochocka, J., Janzen, R., & Trainor, J. (2006). A longitudinal study of mental health consumer/survivor initiatives: Part II - A quantitative study of impacts on new members. Journal of Community Psychology, 34, 261-272.

Ochocka, J., Nelson, G., Janzen, R., & Trainor, J. (2006). A longitudinal study of mental health consumer/survivor initiatives: Part III - A qualitative study of impacts on new members. Journal of Community Psychology, 34, 273-283.

Janzen, R., Nelson, G., Trainor, J., & Ochocka, J. (2006). A longitudinal study of mental health consumer/survivor initiatives: Part IV - Benefits beyond the self? A quantitative and qualitative study of system-level activities and impacts. Journal of Community Psychology, 34, 285-303.

Goering, P., Durbin, J., Sheldon, T., Ochocka, J., Nelson, G. & Krupa, T. (2006). Who uses consumer-run self-help organizations? American Journal of Orthopsychiatry, 76(3),367-373.

Ochocka, J., Nelson, G. & Janzen, R. (2005). Moving forward: Negotiating self and external circumstances in recovery.Psychiatric Rehabilitation Journal, 28, 315-322.

Sundar, P. & Ochocka, J. (2005). Bridging the gap between dreams and realities related to employment and mental health: Implications for policy and practice. Canadian Journal of Community Mental Health, 23, 75-89.

Aubry, T. & Ochocka, J. (2005) (Eds). Special Issue on Community Mental Health. Canadian Journal of Program Evaluation, 19(3).

Choma, B. (2005). Book review: Shifting the paradigm in community mental health. Canadian Journal of Program Evaluation, 19(3).

Nelson, G., Ochocka, J., Janzen, R., Trainor, J. & Lauzon, S. (2005). A comprehensive evaluation framework for mental health consumer/survivor organizations: Values, conceptualization, design, and action. Canadian Journal of Program Evaluation. 19(3), 29-53.

Nelson, G., Ochocka, J., Lauzon, S., Towndrow, J. & Cheng, R. (2005). Disseminating the findings of a longitudinal study of mental health consumer/survivor initiatives in Ontario. The Community Psychologist. 38(2), 41-43.

Dewa, C., Durbin, J., Wasylenki, D., Ochocka, J., Eastabrook, S., Boydell, K., & Goering, P. (2002). Considering a Multisite Study? How to Take the leap and Have a Soft Landing. Journal of Community Psychology, 30(2), 173-187.

For more information on community mental health issues based on our previous research please consult the following published articles/books:

Shifting the Paradigm in Community Mental Health.
Nelson, G., Lord, J., & Ochocka, J. (2001).
Toronto: University of Toronto Press

Ochocka, J., Janzen, R. & Nelson, G. (2002). Sharing power and Knowledge: Professional and Mental Health Consumer/Survivor Researchers Working Together in a Participatory Action Research Project. Psychiatric Rehabilitation Journal, 25(4), 379-387.

Reeve, P., Cornell, S., D'Costa, B., Janzen, R. & Ochocka, J. (2002). From Our Perspective: Consumer Researchers Speak About Their Experience in a Community Mental Health Research Project. Psychiatric Rehabilitation Journal, 25(4), 403-408.

Nelson, G., Ochocka, J., Griffin, K., & Lord, J. (1998). Nothing about me, Without Me: Participatory Action Research with Self-Help/Mutual Aid Organizations for Psychiatric Consumer/Survivors. American Journal of Community Psychology, 26, 881-912.

Project Website Links

Ontario Peer Development Initiative
Consumer Survivor Initiative of Niagara Region

Community Mental Health Evaluation Initiative (CMHEI)

Geoff Nelson website

Want more information? Contact Joanna Ochocka (joanna@communitybasedresearch.ca) or Geoff Nelson