A
Longitudinal Study of Consumer/Survivor Initiatives
in Community Mental Health in Ontario
Most of the photos on the right were taken at the premiere showing of the DVD From Madhouse to Our House, shown at Wilfrid Laurier University on March 8, 2005. It was under the Rae government that the Consumer/Survivor Development Initiative was created and funded, beginning in 1991. Former Premier Bob Rae, who is currently the Chancellor of Wilfrid Laurier University, spoke about the DVD. He is pictured in several of the photos.
Consumer/Survivor Initiatives (CSIs) are self-help organizations that are operated exclusively by and for people with serious mental illness. There are more than 60 CSIs in Ontario that are funded by the Ontario Ministry of Health and Long-term Care.
This research was a longitudinal study of 4 CSIs in Ontario. This project was one of several research projects funded under a Community Mental Health Evaluation Initiative (CMHEI) by the Ontario Ministry of Health and Long-term Care through the Ontario Mental Health Foundation (OMHF). The research was funded by OMHF from 1998-2003 and by the Canadian Institutes of Health Research (CIHR) from 2002-2004. I was the Principal Investigator; John Trainor and Paula Goering of the Centre for Addiction and Mental Health were the Co-Investigators; Joanna Ochocka was the Project Manager; Rich Janzen was Senior Researcher (and the project was managed by the Centre for Research and Education in Human Services); and the Ontario Peer Development Initiative (OPDI), which is the umbrella organization for the CSIs and the 4 CSIs were the community partners.
The purpose of this study of 4 CSIs was to understand the impacts that CSIs have on individual members and the community. Two groups of consumer/survivors participated in the research: (1) new members of CSIs and (2) non-members of CSIs. With their consent, these individuals participated in baseline, 9, 18 and 36 month interviews. It was expected that participation in the CSIs would have positive impacts on consumer/survivors' personal empowerment, utilization of mental health care, social support and friendship, community integration, access to valued resources (work, education, finances, housing), subjective distress, life satisfaction, and coping. There were four different measures of CSI participation: (1) some participation or no participation, (2) the number of minutes of participation, and (3) the number of contacts with a CSI, and (4) a measure of psychological connection to the CSI. More in-depth interviews were used to ask a smaller sample of members and non-members about their personal growth and factors that contribute to their growth. These were also done at baseline, 9, 18, and 36 month time intervals. The 4 CSIs implemented a tracking system, which provided information on the amount and nature of systems-level activities (e.g., education, advocacy). Also, in-depth interviews were conducted with key CSI members, mental health professionals, planners, and policy-makers to inquire about the impact that the CSIs have had on the community and to trace the growth and development of each CSI. This was the first controlled, longitudinal evaluation of CSIs with a comparison group conducted in Canada. Compared to other institutional and community-based mental health services operated by professionals, CSIs are very inexpensive. As part of our study, we collected data on the costs of all health and social services used by CSI participants and non-participants. These cost data, along with the outcome data, provided an estimate of the cost-effectiveness of CSIs. The data from this project were communicated to mental health policy-makers and planners.
Reports and Summaries
Further information on the study
CMHEI Newsletter, Winter, 2004
Making a Difference - CMHEI Final Report 2004
DVD - From Madhouse to Our House
Consumer/Survivor Initiatives: Impact, Outcomes and Effectiveness 2005
KW Record article on CSIs 2007
Publications
Constantino, V. , & Nelson , G. (1995). Changing relationships between self-help groups and mental health professionals: Shifting ideology and power. Canadian Journal of Community Mental Health , 14 (2), 55-70.
Goering, P., Durbin, J., Sheldon, C. T., Ochocka, J., Nelson, G., & Krupa, T. (2006). Who uses consumer-run self-help organizations? American Journal of Orthopsychiatry, 76, 367-373.
Janzen, R., Nelson , G., Hausfather, N., & Ochocka, J. (2007). Capturing system level activities and impacts of mental health consumer-run organizations. American Journal of Community Psychology, 39, 287-299.
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.
Nelson , G., & Grant, J. (in press). Consumer involvement in mental health services and research. In E. Vingilis & S. State (Eds.), Applied research and evaluation in community mental health services: A current update and overview . Montréal and Kingston : McGill-Queen's University Press.
Nelson , G., Janzen, R., Ochocka, J., & Trainor, J. (in press). Participatory action research and evaluation with mental health self-help groups and organizations: A theoretical framework. In L. Brown & S. Wituk (Eds.), Mental health self-help: Consumer and family driven initiatives . New York : Springer.
Nelson, G., Janzen, R., Trainor, J., & Ochocka, J. (2008). Putting values into practice: Public policy and the future of mental health consumer-run organizations. American Journal of Community Psychology, 42, 192-201.
Nelson, G., & Lomotey, J. (2006). Quantity and quality of participation and outcomes of participation in mental health consumer/survivor initiatives. Journal of Mental Health, 15, 1-12.
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.
Nelson , G., Ochocka, J., Janzen, R., Trainor, J., & Lauzon, S. (2004). A comprehensive evaluation approach for mental health consumer-run organizations: Values, conceptualization, design, and action. Canadian Journal of Program Evaluation, 19(3), 29-53.
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 of participation on new members. Journal of Community Psychology, 34, 261-272.
Nelson , G., Ochocka, J., Janzen, R., Trainor, J., Goering, P., & Lomotey, J. (2007). A longitudinal study of mental health consumer/survivor initiatives: Part V – Outcomes at three-year follow-up. Journal of Community Psychology, 35, 655-665.
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.
Ochocka, J., Nelson , G., & Janzen, R. (2005). Moving forward: Negotiating self and external circumstances in recovery. Psychiatric Rehabilitation Journal, 28, 315-322.
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 of participation on new members. Journal of Community Psychology, 34, 273-283.
