© Centre for Research and Education in Human Services

© Centre for Research and Education in Human Services

communitymental healthEVALUATION INITIATIVE

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Centre for Research and Education in Human Services www.crehs.on.ca

Longitudinal Study of Consumer/Survivor

Initiatives in Ontario: Community Forum

Kitchener, April 16, 2004

Geoffrey Nelson, Robert Chapman, Alex Troger, Kristen Roderick and Joanna

Ochocka


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Community Forum Agenda

• Presentation of Research Study

• Discussion

• Presentation from WRSH and CASH

• Community Resources



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Overview of Study Presentation

•Background to:

•Consumer/Survivor Initiatives

•Research Study

• Research Methodology

• Study Findings

• Dissemination and Action Strategies



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CSIs as a Unique Part of the Mental Health System

•CSIs are self-help/mutual aid organizations that have been developed exclusively by and for people with serious mental illness

•First funded in 1991 by the Ontario Ministry of Health and Long-Term Care, there are now more than 50 CSIs in Ontario with a budget of over $5 million

•CSIs are more than programs and activities. They are characterized by sense of community, member and organizational empowerment, mutual learning, personal growth and focus on social change and social justice.



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Background to Research Study• First, independent evaluation of CSIs in Canada

• Study funded by Ontario Ministry of Health and Long-Term Care (through the Ontario Mental Health Foundation) and the Canadian Institutes of Health Research, 1998-2004

• Research partners: Ontario Peer Development Initiative (OPDI), Centre for Research and Education in Human Services, Wilfrid Laurier University, Centre for Addiction and Mental Health

• Part of Ontario Community Mental Health Evaluation Initiatives

• Proposal development (1997); site selection (1998); first steering committee meeting (1998) researcher team (1999)



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Study Purpose

To examine the activities and impacts of CSI on

• new members (individual-level) and

• the communities within which the CSIs exist (systems-level)



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Study Structure

Steering Committee•4 CSIs Reps•Study Partners

Research Team•WLU and CREHS•C/s Researchers


Research Team

Steering Committe

e

Hamilton: Mental Health

Rights Coalition

Kitchener:Waterloo

Region Self Help

Welland:Consumer/Survivor

Initiative of Niagara

Cambridge Active

Self Help


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Research Methodology: Participatory Action Research

“Participatory action research 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)

• “Research with,” not “research on” people• Data for advocacy • Training and mentoring• Opportunity of meaningful involvement• Valuing experiential knowledgeCentre for Research and Education in Human Services www.crehs.on.ca


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Study Steering Committee

•Composition (stakeholder representation)

•Purpose (to guide 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)



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Study Research Team

•Composition (professional and consumer/survivor)

•Purpose (training, tracking, communicating, reflecting, learning, trouble shooting, supporting)

•Process (how often, locations, typical meeting, personal experience)

•Challenges (people’s health, distance, turnover)Centre for Research and Education in Human Services www.crehs.on.ca


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Research Methodology


Individual Quantitative

Individual Qualitative

Systems Quantitative

Systems Qualitative


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Findings: Individual Quantitative

Characteristics of active CSI members

•39 years of age•Completed 13 years of education•Average monthly income = $1400 Canadian•80% white•29% single, separated, divorced, or widowed•Mood disorder (64%), schizophrenia (33%)•75% had primary therapist or case worker•49% involved with another community mental

health agencyCentre for Research and Education in Human Services www.crehs.on.ca


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Findings: Individual Quantitative

Compared with clients in 4 ACT teams in eastern Ontario, active CSI members

•Have higher rates of high school completion, current employment, involvement in vocational or educational programs, and are more likely to have a diagnoses of mood or anxiety disorders (less likely to have diagnosis of schizophrenia)

•But they also have higher rates of symptom distress, physical health problems, housing instability, and emergency room utilization

•And they don’t differ on a number of other measures of psychological well-being and quality of life



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Findings: Individual-level Activities

How do people participate in CSIs?

• Internal activities (e.g., membership meetings, committees, social-recreational) – 32%

• One-to-one peer support - 25%• Drop-in – 20%• Self-help groups – 13%• External activities (e.g., participation in community

planning, education and advocacy) – 10%



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Findings: Individual-level Activities

How much do people participate in CSIs?

Over the first 16 months of their involvement in CSIs

• the average number of events attended was 65 (range was 2 to 380)

• the average number of hours of participation was 114 hours (range was 4 to 902)

• participants averaged 4.07 CSI events and 7.16 hours of CSI participation per month, or about 1 event and 2 hours per week of CSI participationCentre for Research and Education in Human Services www.crehs.on.ca


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Findings: Individual-level Impacts

• Significant decrease in Symptom Distress over the 18-month period for CSI members compared with those in the comparison group

• Significant decrease in days of hospitalization over the 18-month period for CSI members compared with those in the comparison group


Average Days of Hospitalization for Participants Who Were Active (n = 61)

and Non- active (n = 57) in CSIs at Baseline, 9, and 18 Months

Active Non-active

0

12

34

56

78

910

Baseline 9-months

18-months


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Individual-level Impacts

• Significant increase in social support over the 18-month period for CSI members compared with those in the comparison group

• Significant increase in Quality of Life – Daily Activities over the 18-month period for CSI members compared with those in the comparison group

• Significant decrease on a composite measure of employment and education over the 18-month period for those in the comparison group, while CSI members showed no change on this measure over time



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Systems Qualitative


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There are three main outcomes from the qualitative interviews

• Improved mental health for CSI members compared with those in the comparison group

• More CSI members report having social support compared with those in the comparison group

• CSI members more likely to have a job, income, or be involved in education



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Improved mental health

•At baseline, both CSI and comparison group participants talked about symptoms such as being stressed out most of the time, feeling very depressed, staying in bed for weeks, having no energy, not being able to sleep or eat and worrying about the future

•At 9 and 18 months, more CSI participants than comparison group participants reported improvements in their mental health



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Social Support

• At 9 and 18-month interviews, more CSI members report having social support both through the CSI and from other settings and relationships

“I felt isolated, I didn’t have any contact with perrs who were going through the same situation. . . It does make quite a difference for an individual to contact his peers and go through what they have gone through and give each other support.” (CSI member)



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Employment, Income, Education, and Training

• At the 9 and 18-month interviews, more of the CSI participants than comparison group participants reported being employed, having an income, or being involved in education and training

“ I did well in my first semester courses, so that gave me something to stand on. I felt like I'd accomplished something. So, I felt like I had what it takes to get through the rest of it, which made me feel stronger.” (CSI member)



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Individual-level ImpactsWhat Is It About CSIs that Helps?

• Social arena – a positive, welcoming place to go• Opportunity to meet and talk with peers• Opportunity to participate and contribute

“You feel at home here [at CSI]. . . It is somewhere to go.”

“When I talk to people, I see that I am not the only one that it helps because I get down in the dumps

sometimes. . . It helps to talk. It really does.”

“Now I am in a position to help other people because I have a friend of mine who was diagnosed with

severe depression and I have taken her to support groups and stuff and she has found that very

helpful.”Centre for Research and Education in Human Services www.crehs.on.ca


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Individual-level ImpactsSummary

The quantitative and qualitative findings converge around three themes related to the positive impacts of CSIs on individual members

• Less symptom distress, fewer days of hospitalization, and improved mental health over time

• Increased social support and quality of life related to daily activities over time

• Enhanced employment/education over time



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Systems Qualitative


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Systems-level Activities

•Many system level activities (665 events across 3 sites; > 1 event for each working day; 887 staff; 949 members)

•Activities within sites changed over time (CSIs emphasized different types of activities over time)

•Sites differed in their approach (different emphases across sites in terms of range of activities, and how they involved staff and members)

•Community planning (63%), action research (15%), public education (14%), and political advocacy (8%)



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Systems-level Activities


Site

Site 3Site 2Site 1

# o

f E

ven

ts

300

200

100

0

Activity Category

Public Education

Political Advocacy

Community Planning

Action Research


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Systems-level Impacts

Two main types of impacts:

• Changes in perceptions (speculative)• Concrete changes (tangible)

Public Education

• Public gained knowledge about mental health issues

• Service-providers more aware about how to support consumer/survivors

• Greater profile for CSIs• Changes in service-provider practice



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Systems-level Impacts Political Advocacy

•“Voice” of consumer/survivors better heard

•Changes in public policy, legislation and funding

•Secured 50% of all dedicated housing units•Reinstatement of bus pass subsidies•Reversed, even increased, municipal

government support for residential care facilities

•Successfully advocated to keep local psychiatric hospital units from closing



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Systems-level Impacts Community Planning

• Acknowledgement of CSIs as needed partner within mental health system

• Influencing committees’ positions and perceptions of c/s• Increased profile of CSI • Changes in practice, policy, and funding within the

community

“We went out to Toronto and checked out the programs there and we came back with the ‘Out of the Cold’ option as something which could be started very quickly… So actually, what we did was to bring ‘Out of the Cold’ up to the community.” (CSI focus group

member) Centre for Research and Education in Human Services www.crehs.on.ca


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Systems-level Impacts Action Research

• Boosting the credibility of CSIs• Increasing awareness of consumer-driven policy

recommendations• Concrete changes in community practice

“[The local CSI] was involved in that research program of the [local organization] back in 1995 or something… [The local CSI] was developing a model of how best to serve consumer/ survivors and it did create quite a shift in a number of people’s thinking. It was not the only piece of information that helped the shift, but it was a piece of information that helped significantly shift how services were going to be provided to people.” (CSI focus group member)



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Systems-level Impacts Summary

•CSIs contribute to transformative change – changing the system and the “rules of the game”

•CSIs approach system-level activities in a “textured way”

•Minimal resources to make significant impacts

•CSIs adopted “insider” role to influence systems (unlike more militant, anti-psychiatry postures of past consumer advocacy in Ontario)



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Conclusions

• This study is one of the first to document both individual-level and systems-level activities in mental health consumer organizations)

• The results of the research to date demonstrate positive impacts of CSIs on both individual members and social systems

•Moreover, these impacts are achieved with very minimal amounts of funding (the CSIs that we studied have an average annual budget of $CAN 160,000)

•Alternatives are needed (limits of psychiatry, hospitals and challenges of medication adjustments)



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Dissemination and Action Strategies

• Interim reports and fact sheet summaries circulated to four participating organizations, other mental health organizations across Canada, Mental Health Task Forces and Ministry of Health and Long-Term Care

• Summaries used by CSIs and OPDI for education and advocacy

• Project website and video

• Regular updates and actions within Community Mental Health Evaluation Initiative, including to senior policy-makers in Ontario Ministry of Health and Long-Term Care Centre for Research and Education in Human Services www.crehs.on.ca

Thanks for your attention

© Centre for Research and Education in Human Services


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CSIs: Complementary Alternatives

“And then the sheer fact of how long we’ve been around, it validates that fact that it [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!” (CSI focus group member)


Questions for Discussion

1. Do these findings resonate with you?– Any surprises?– Anything missing?

2. What do these findings mean to for:– CSIs in our community– The CSI movement in Ontario– Mental health policy in Ontario

Documents

© Centre for Research and Education in Human Services