Featured Project: A Longitudinal Study of the Consumer/ Survivor Initiatives in Community Mental Health in Ontario

Back row: Geoff Nelson, Jean Irish, Meaghan Johnson, Robert Chapman, Joanna Ochocka Front row: Helmut Braun, Yolisa Nongauza, Rich Janzen, Heather Irvine

Brief Project Description

Geoffrey Nelson, Principal Investigator of this study, expects that participation in the consumer/survivor initiatives (CSI) will have a positive impact on personal empowerment, social support, community integration, work, education, and subjective quality of life. The greater the amount of participation in the CSI, the larger the positive impact is expected to be. This research will also study the experiences of CSI participants that are believed to have a positive impact – for example: the opportunity to contribute to and have a say in the consumer/survivor organization, a psychological sense of community, and peer support.

Because of the interest expressed by many CSIs, the research team and the CSIs participating in the primary study will share research approaches and findings with all interested CSIs. This will take the form of workshops on several of the different research methods being used.

Project Structure

Let me, Joanna Ochocka, Project Coordinator, introduce our project structure. Of the 59 CSIs in Ontario, three have been selected for this study: Waterloo Region Self Help (WRSH) in Kitchener, Mental Health Rights Coalition in Hamilton (MHRC), and the CSI of Niagara Region, in Welland (CSIN). This study is guided by a Steering Committee composed of two members from each of these three participating CSIs (Terry Dick & Alex Troger from WRSH, Fiona Wilson & Mark Davies from MHRC, and Judy Hoover & Shawn Lauzon from CSIN), the researchers, and the Coordinator of the Consumer/Survivor Development Initiative.

We have hired and trained six consumer/survivor researchers to help us carry out the project. The researchers work out of offices located in the local CSIs (two researchers for each of the three sites). We meet together as an entire research team about every month, rotating our meeting locations. These meetings are an opportunity for us to learn from each other, and to plan our next steps in the project.

"I'm proud to be part of this project as it became clear that this was a pioneering, ground-breaking research project. No one else has studied consumer/survivor self help groups like this before. Our research could have positive consequences if it shows that self help groups are a good use of mental health dollars." – consumer/survivor researcher

Research Participants

The consumer research assistants are in a process of interviewing a total of 150 people across the three regions. About half the people are new members of CSIs (who joined in 1999), and the other half are people not active in CSIs. With their consent, these individuals will participate in three interviews over an 18-month period (a baseline interview and then follow-up interviews at 9 and 18 months).

The interviews are conducted according to the multisite protocol, with four additional pages of unique questions related to our project only. To supplement this quantitative information (answers to this type of question are recorded as categories, e.g., yes and no), 15 active members and 15 nonmembers will be asked some open-ended questions about their personal growth (outcomes) and what factors (processes) contributed to their growth. These qualitative interviews will be done three months after the quantitative interviews.

Also, qualitative interviews will be 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 barriers and limitations to systems reform. The study will make recommendations for policies to overcome those barriers. Interviews with key members of the three CSIs participating in the research will be used to trace the growth and development of each CSI.

Preliminary Data

To date we have interviewed eight people in Waterloo Region, 23 in Hamilton and 38 in Niagara Region. Our researchers keep in touch with participants already interviewed, every two months (face-to-face or by phone), and ask questions about their participation in CSIs. Soon we will begin the qualitative interviews.

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