1. community mental health EVALUATION INITIATIVE CMHEI Centre for Research and Education in Human Services www.crehs.on.ca Longitudinal Study of Consumer/Survivor Initiatives in Community Mental Health in Ontario Impact of Participation in Consumer/Survivor Initiatives Joanna Ochocka Rich Janzen Becky Choma

2. community mental health EVALUATION INITIATIVE CMHEI Overview of Presentation Background to Study Individual Qualitative Methodology Analysis Strategy Main Findings Implications Centre for Research and Education in Human Services www.crehs.on.ca

3. community mental health EVALUATION INITIATIVE CMHEI Background to CSIs CSIs are self help/mutual aid organizations that have been developed exclusively by and for people with serious mental illness CSI activities include: self-help groups, peer mentoring, support, and friendship, participation in community planning, education and advocacy CSI ethos - sense of community, solidarity, empowerment, mutual learning, social justice and social change Centre for Research and Education in Human Services www.crehs.on.ca

4. community mental health EVALUATION INITIATIVE CMHEI Study Purpose To examine the activities and impacts of CSI on new members (individual level) and the communities within which they exist (systems level) Centre for Research and Education in Human Services www.crehs.on.ca

5. community mental health EVALUATION INITIATIVE CMHEI Research Methodology Centre for Research and Education in Human Services www.crehs.on.ca

6. community mental health EVALUATION INITIATIVE CMHEI Methods: Individual Qualitative Baseline, 9, 18, 36 month follow-up interviews 30 qualitative interviews (14 new members and 16 non- members) Open-ended, in-depth interviews - asked about changes in past 9 months, factors facilitating and inhibiting changes, typical day in the life CSI research assistants conducted interviews PAR approach and four selected communities Centre for Research and Education in Human Services www.crehs.on.ca

7. community mental health EVALUATION INITIATIVE CMHEI Analysis Strategy Interviews transcribed and coded Interviews analyzed using content analysis and the qualitative software program, NUD*IST and NVivo Data coded by three researchers Centre for Research and Education in Human Services www.crehs.on.ca

8. community mental health EVALUATION INITIATIVE CMHEI Study Findings Impact of CSI participation on: Mental Health Status Relationships Sense of Independence Community Participation Centre for Research and Education in Human Services www.crehs.on.ca

9. community mental health EVALUATION INITIATIVE CMHEI Impact of Participation on Mental Health Active CSI participants reported more stable mental health and fewer health problems than non-active mental health consistent over 18 months mental health problems drastically decreased At baseline both groups talked about individual symptoms, at 9 and 18-month (active) about situational struggle Factors contributing to mental health status: coping with experience of trauma (e.g. childhood abuse; death) struggling with proper medication lacking sufficient informal/formal support Centre for Research and Education in Human Services www.crehs.on.ca

10. community mental health EVALUATION INITIATIVE CMHEI Impact of Participation on Relationships Active CSI participants formed and maintained better relationships than non-active 50% active - improved relationships each time Relationship difficulties dropped from 40% to 8% Non-active participants rely more on a small number of family and friends, active involve also formal support outside mental health circle Challenges include: social isolation, lack of understanding, stigma, history of unhealthy relationships Centre for Research and Education in Human Services www.crehs.on.ca

11. community mental health EVALUATION INITIATIVE CMHEI Impact of Participation on Sense of Independence Composite variable including reported empowerment, employment, sufficient income and housing, and adequate education and training CSI involvement linked with better independence Active CSI participants more than non-active live on their own, are employed, more active in seeking information about illness/therapy Housing an ongoing issue for both groups Active CSI greater control over health treatment Centre for Research and Education in Human Services www.crehs.on.ca

12. community mental health EVALUATION INITIATIVE CMHEI Impact of Participation on Community Participation No differences between level of community participation Similar level of community participation over three interviews Both groups participate in variety of community settings Pattern of involvement constantly changing Centre for Research and Education in Human Services www.crehs.on.ca

13. community mental health EVALUATION INITIATIVE CMHEI Implications CSIs support participants in many areas of their lives CSI participation strengthen networks, coping skills and access to valued resources CSIs accept people for who they are and offer hope CSIs influence people’s perception to collectively focus on change of external/systems conditions Centre for Research and Education in Human Services www.crehs.on.ca

14. community mental health EVALUATION INITIATIVE CMHEI “I felt isolated, I didn't have any contact with peers who were going through the same situation.” “CSI helped me to become more assertive among people and less embarrassed. I don’t feel alone, there are people who are behind me. [CSI] helped me become more assertive in dealing with discrimination against people with mental health problems. It used to make me really angry[…] there was no a reason to be treated the way I was sometimes.” “You feel at home here [at the CSI]...It is somewhere to go.” Centre for Research and Education in Human Services www.crehs.on.ca

15. community mental health EVALUATION INITIATIVE CMHEI Centre for Research and Education in Human Services www.crehs.on.ca Future Contact Dr. Joanna Ochocka, Project Coordinator Rich Janzen, Senior Researcher Centre for Research & Education in Human Services 73 King Street West, Suite 202 Kitchener, ON, Canada N2G 1A7 Phone: (519) 741-1318 Fax: (519) 741-8262 E-mail: joanna@crehs.on.ca Website: www.crehs.on.ca Dr. Geoffrey Nelson, Principal Investigator Wilfrid Laurier University, Department of Psychology Waterloo, ON, Canada, N2L 3C5 Phone: 519-884-0710, ext. 3314, Fax: 519-746-7605 Email: gnelson@wlu.ca