For the team of researchers conducting a five-year study of consumer/survivor initiatives (CSIs) in Ontario, the research method is inseparable from the aims of their study. Designed to evaluate the impact of CSIs on their members and their communities, A Longitudinal Study of the Consumer/Survivor Initiatives in Ontario involved psychiatric consumer/survivors both as research assistants and as members of the project steering committee.

The method is known as participatory action research (PAR), and the goal is to empower people who are traditionally the subjects of research. PAR involves people in researching their own situation and developing their own solutions. In so doing, PAR can help to achieve positive social change. PAR can also lead to much more accurate research results.

The study is a collaborative effort between four CSIs in the Central West region of Ontario – Cambridge Active Self Help, Consumer/Survivor Initiative of Niagara, Hamilton Mental Health Rights Coalition, Waterloo Region Self Help – and researchers at Wilfrid Laurier University (principal investigator, Dr. Geoff Nelson), the Centre for Research and Education in Human Services (project manager, Dr. Joanna Ochocka), the Centre for Addiction and Mental Health, and the Ontario Peer Development Initiative. Consumer/survivor representatives are also members of the steering committee that guides the project.

What are consumer/survivor initiatives and how do they help?

CSIs are self-help/mutual aid organizations developed exclusively by and for people with serious mental illness. Activities include self-help and peer support, skill development, and artistic and cultural pursuits. When people participate in a CSI, their psychiatric symptoms are often reduced, according to preliminary findings from this study. Their quality of life improves, and they spend fewer days in hospital.

Participants also report more control over their mental health and more independence in terms of housing, finances, and employment. They report feeling more empowered and feeling supported by their CSI. On being a member of a CSI, one study participant commented, "My focus now isn't to hide from the world – it is to participate in the world. In the old days, it was like everybody was forcing me out."

Beyond the individual improvements to health and well-being, CSIs benefit the system. Participants educate the public and professionals about mental illness, get involved in community planning, and advocate for organizational, community and social change.

Why should consumer/survivors participate in the research?

Deeply entrenched stigma about mental illness contributes to low community integration, difficulty accessing housing, and high unemployment among consumer/survivors. PAR was designed for the study of oppressed communities, and so the researchers consider it to be well suited to the study of CSIs. Self-help/mutual aid organizations and PAR share core values – consumer empowerment, socially supportive relationships, inclusion, social justice, and a commitment to learning processes – and this commonality builds trust and creates a strong foundation for positive working relationships.

next >