[Narrator speaks. A group of individuals area seated in a office talking amongst themselves. The camera pans around the room zooming in on various individuals as the speak and nod.]
One of the ways of putting participatory action research into practice is to use a steering committee composed of stakeholders most involved and affected by the research to guide the study.
[The video changes to a man from the group seated in a chair, holding a few papers and speaking. Then transitions to the same man giving an interview to the camera in another office. The following words display onscreen: Alex Troeger, Chair, Steering Committee for the Study of Consumer/Survivor Initiatives. As Alex Troeger speaks the videos goes back the group of individuals and continues to pan the room, zeroing in on individuals as they speak to the group. Then back to Alex Troeger.]
“It's been a wonderful experience for me to be the chair of the steering committee because the group gave me the ability to be able to run the committee and that gives an indication of how how much the group believed that I could handle that responsibility and to be able to help the group focus and to make sure all the members have any insights experiences recognized. That they could be able to add their experience to the study and in that way it would make the study more credible to consumers themselves.”
[The video transitions to show a speaker speaking to a room of seated participants.]
The project also employed more than a dozen consumer/survivors as researchers.
They met regularly during the peak period of data collection.
[A man speaks and the following words display on screen: Robert Chapman, Community Researcher, Study of Consumer/Survivor Initiatives]
“As a consumer myself, I think the idea was was good and that we're more believable. I have a commonality with other consumers so recruiting them was was probably easier than if it was done by someone else.”
[A man speaks and the following words display on screen: Geoffrey Nelson, Principal Investigator and Professor of Psychology, Wilfred Laurier University]
“The purpose of the study was to examine the activities in the impacts of Consumer/Survivor Initiatives on both individuals and systems. In other words, what we wanted to find out was whether or not the initiatives were reaching their objectives in terms of improved well-being and quality of life for new members and also the goal of trying to change social systems and communities to make them more welcoming places for consumer/survivors.”
[A series of photos transition as the narrator speaks. A group shot of people dancing in a room at what appears to be St. Patrick’s Day party, a sign reading “Psychiatric Survivors of Ottawa”, a group of people of all ages outside at a barbecue, a group of people lined up across from one another on a grass lawn playing a tossing game,
Consumer/Survivor Initiatives provide a variety of activities for members.
These activities are member-driven and include:
[A blue screen with yellow text appears reading “One to one peer support”]
One to one peer support
[A woman appears on screen and begins to speak the following words display on screen: Deborrah Sherman, Executive Director, Mental Health Rights Coalition of Hamilton]
“We train people to give peer support and they talk one-on-one - what's said in the peer support room stays in the peer support room”
[A blue screen with yellow text appears reading “Self-help groups”]
[A woman appears on screen and begins to speak and the following words display on screen: Judy Hoover, Executive Director, Consumer/Survivor Initiative of Niagara]
“And it's helpful when you have a group of people because someone can say “Oh I went through that already and and I've been doing this for a year and this is what helped me”; so I think I think it's helping me helping you - it really works.”
[A blue screen with yellow text appears reading “Other individual activities include Artistic and Cultural Pursuits, Community Economic Development, Drop-in, Social and Recreational Activities.”]
Other individual activities include artistic and cultural pursuits, community economic development, drop-in, social and recreational activities.
[A man appears on screen and the following words display on screen: Geoffrey Nelson, Principal Investigator and Professor of Psychology, Wilfred Laurier University. As Geoffrey Nelson continues to speak, the video transitions to a conference room where a woman is speaking a a number of seated participants, pans the room and zeroes in on various participants. The video transitions back to Geoffrey Nelson. The size of the video lessens and the following words appear on screen in white text on a blue background: “Sharper declines in the frequency of hospitalization, Less symptom distress, Enjoyed better quality of life, More social support, Maintain employment, education and volunteer opportunities.”]
“We use the longitudinal design with a comparison group and we gathered both quantitative and qualitative data to examine the activities and impacts of Consumer/Survivor Initiatives. So, we had a group of people who were new members of consumers for Consumer/Survivor Initiatives and then we also had a group of people who were eligible to participate in and offered an invitation to participate in the initiatives but they declined. We interviewed people who are interested in participating three times: an initial interview and then 19 months later and 18 months later so we wanted to see the people who were in the initiatives, are they benefiting more than people who are not in the initiatives. What we found was that over time there were more improvements for people who participated in the initiatives than for people in this comparison group. In other words, people who are in the initiatives showed sharper declines in frequency of hospitalization for psychiatric problems. They had less symptom distress. They enjoyed a better quality of life, more social support and they were able to maintain employment, education and volunteer opportunities significantly more than those individuals in the comparison group.”
[A woman appears on screen and begins to speak and the following words display on screen: Kathryn McLean, Consumer/Survivor]
“NHRC has impacted my life profoundly. It’s contributed a great deal to creating the person I am today. I consider myself successful in the fact that I’ve got a career now. I've gone from ODSP or being a recipient of ODSP and now I’m employed full-time and and also I was in subsidized housing and now own my own home.”
[A chart appears onscreen with the following text: “Figure 1. Average Score of measure of Quality of Life - Daily Living Activities for Participants Who Were Active (n=61) and Non-active (n=57) in CSIs at Baseline, 9, and 18 Months” In the Active column, Baseline shows 4.5 and 9 months shows 4.6 and 18 months shows 4.8. In the Non-Active column, Baseline shows 4.4 and 9 months shows 4.75 and 18 months shows 4.5.]
The research found that members benefited in many different ways as a result of their participation in CSIs.
[The video transitions to two men shaking hands in a room then walking out an exterior door to the street. Then to a room with a number of walkie-talkies on a desk and a number of messenger bags hanging on wall hooks. A blue screen with yellow text appears reading “Community Planning, Education, Advocacy, Action Research”]
In CSI’s, some activities occur at the systems level.
That's because Consumer/Survivor Initiatives strive to create supportive environments and enable social change.
Community planning, education, advocacy, action research - those are the system-level activities.
But what are the impacts?
[A man appears on screen and begins to speak and the following words display on screen: Rich Janzen, Senior Researcher, Centre for Research and Education in Human Services]
“We learn that there are both changes in perceptions as well as concrete changes. With regard to changes in perceptions, we learned that service providers and policymakers and members of the general public had changed their opinion about things such as mental health issues - about what's it like to live with mental illness and about the value of CSIs. With regard to concrete changes, we learned that people saw tangible changes in how services were delivered and planned. Tangible changes in public policy and funding allocations because of the influence of CSIs.”
[A woman appears on screen and begins to speak and the following words display on screen: Lisa Gammage, Shared Executive Director, Cambridge Active Self Help & Waterloo Region Self Help]
“Well, both Cambridge active self-help and Waterloo Region self-help are involved on local planning and advisory committees both with the district health council, with local community hospitals, that type of thing to help design the services. We're also involved with advocacy on both a systems level and an individual level because we assist people members who come in and need help, arranging for their own individual needs to get met but also helping to design or consult with the members around what would be the most effective crisis service to have and what would be the most effective services to create in this community.”
[A man appears on screen and begins to speak and the following words display on screen: Ed Pomeroy, Emeritus Professor of Psychology, Brock University]
“You'd be hard-pressed to organize a planning meeting in Niagara dealing with mental health that you didn't have significant consumer/survivor representation. I mean, I don't think anybody would even think of doing it whereas 10 15 years ago I don't think anybody ever thought of including consumer/survivors.”
[A woman appears on screen and begins to speak and the following words display on screen: Lindsey George, Psychaitrist, St. Joseph’s Healthcare, Hamilton]
“So, the first area I think is in shaping the agenda for our whole service delivery system and the things that we're focusing on and I think being much more focused on what are the outcomes that people with mental health problems themselves are interested in. I think the second area that I’ve really noticed that has really sort of impacted around consumer involvement is our own sort of stigma within the mental health system.”
[A blue screen with yellow text appears reading “Consumer / Survivor Initiatives: Actions and Future Directions”]
[A man appears on screen and begins to speak and the following words display on screen: Shawn Lauzon, Executive Director, Ontario Peer Development Initiative]
“I think mostly with the dissemination of the findings throughout the province we've gone through nine locations in the province to disseminate these findings and I am hearing from Consumer/Survivor Initiatives a real interest especially with the idea of having impacts to not only the individual but also to see themselves as having a real impact in their communities.”
[Vertically scrolling white text appears against a brick wall background]
“And then the sheer fact of how long we've been around it validates the fact that self-help works because people like it. Somebody just backs up and says to you take a bunch of crazy people and let them structure their own place and let them decide what their own direction is going to be. It works. (Participant in the research)”
[A video appears showing a man lecturing a group of seated participants then transitions to various videos of a similar scenario with groups of people discussing or listening to a lecture. A video displays of a workshop group activity. A man holds a yellow piece of paper with the following text written on it: “Motivation, Self-esteem, Education, Awareness”. Then to a video of a woman posting yellow and purple post—it notes on a white board which appears to be another workshop activity.]
In this 18-month study, the researchers found significant improvements in the quality of life and well-being of individuals who participated in Consumer/Survivor Initiatives relative to comparison group participants who are not involved in Consumer/Survivor Initiatives.
CSIs were also involved in a large number of system level activities and positive impacts on systems were found. These
positive impacts on both individuals and systems are achieved at a very low cost - roughly $160,000 per year for each of the four Consumer/Survivor Initiatives involved in the study.
[A woman appears on screen and begins to speak and the following words display on screen: Joanna Ochocka, Project Coordinator and Director, Centre for Research and Education in Human Services]
“This study very much showed that the research can be a very powerful tool for Consumer/Survivor Initiatives in terms of planning, implementing and evaluating the activities and I think that in the future all individual Consumer/Survivor Initiatives could develop some capacities and learn to do their own internal evaluations.”
[The video goes back to the same workshop with the post it notes and a woman is speaking while gesturing towards the yellow, purple and also pink post-it notes. The camera zooms in on various attendees and back to the white board filled with post-it notes.
Consumer/Survivor Initiatives have proven themselves as a credible, affordable and needed partner in the mental health system.
They are an example of a positive alternative and complement to mainstream professional mental health services.
[A man appears on screen and begins to speak and the following words display on screen: David Reville, Psychiatric Survivor and Consultant]
“I think the movement is evolving. I think the movement is becoming somewhat more inclusive than it was at one time. I think that's good.”
[Soft music plays and a blue screen appears with scrolling yellow text as follows]
To precious friends who have nurtured and supported the growth of Consumer/Survivor Initiatives and helped us along the journey from madhouse to our house.
Thank you for opening the doors of your hearts and ornamenting our lives with your friendship.
You have abated our miseries, doubled our joys and divided our grief.
You have shared your riches and revealed to us your own.
You have understood where we’ve been, accepted what we’ve become and gently allowed us to grow.
And still you think of us as good eggs… although we may be slightly cracked…
This production was supported with funding by:
The Canadian institute of Health Research
The Ontario Ministry of health and Long-term Care
This production was produced by Peter Kienitz Productions
With support from:
The Centre for Research and Education in Human Services
Te Peer Development Initiative
“Act Naturally: performed by Janice Twondrow
Geoffrey Nelson, Principal Investigator and Professor of Psychology, Wilfred Laurier University
Joanna, Ochocka, Project Coordinator and Director, Centre for Research and Education in Human Services
Rich Janzen, Senior Researcher, Centre for Research and Eduction in Human Services
Shawn Lauzon, Executive Director, Ontario Peer Development Initiative
John Trainor, Co-investigator and Director, Community Support and Research Unit, Centre for Addiction and Mental Health
David Reville, Psychiatric Survivor and Consultant
Marnie Shepherd, Original Coordinator, Consumer/Survivor Development Initiative (now Ontario Peer Development Initiative)
Deborran Sherman, Executive Director, Mental Health Rights Coalition of Hamilton
Judy Hoover, Executive Director, Consumer/Survivor Initiative of Niagara
Lsa Gammage, Shared Executive Director, Cambridge Active Self Help & Waterloo Region Self Help
Lindsey George, Psychiatrist, St. Joseph’s Healthcare, Hamilton
lex Troeger, Chair, Steering Committee for the Study of Consumer/Survivor Initiatives
Robert Chapman Community Researcher, Study of Consumer/Survivor Initiatives
Kathry Mclean, Consumer/Survivor
Steering Committee Members:
London Psychiatric Hospital
Centre for Addiction and Mental Health, Toronto
My Friends Place, Alliston
People Advocating for Change Through Empowerment Inc. (PACE) Thunder Bay
People for Equal Partnership in Mental Health (PEP) North Bay
Consumer/Survivor Initiatives of Huron
Consumer/Survivor Initiatives of Niagara
Psychiatric Survivors of Ottawa
ABEL Enterprises (Haldimand-Norfolk Work Group of Simcoe)
Fresh Start Cleaning, Toronto
A-Way Express Courier, Toronto
Can - Voice, London
Sunset Country Psychiatric Survivors, Kenora
Ontario Peer Development Initiative, Toronto
Mental health Rights Coalition of Hamilton
All the Consumer/Survivors who appeared in this presentation.
Special thanks for providing video footage:
Laura Sky, Sly Works Charitable Foundation
“Working like Crazy”
Adam Symansky, National Film Board of Canada
Roberta Chapman, Executive Director, Vancouver Mental health Patients Association
“In A Nutshell”
The Centre for Research and Education in Human Services
The Ontario peer Development Initiative