Families make up the largest group of community caregivers for people with serious and persistent mental illness. They play an essential role in the community mental health system, yet very little research has been done to fully understand the nature and importance of their contribution. A Longitudinal Evaluation of Family Initiatives in Community Mental Health in Ontario is a five-year study that aims to fill part of this gap. Now in its final year, the study examines the impact of self-help/mutual aid organizations on families of people with mental illness and on the mental health system.

The study involves three partner organizations with a combined membership of approximately 1,800 people – Family Association for Mental Health Everywhere (FAME), Schizophrenia Society of Ontario (SSO Toronto), and Mood Disorders Association of Ontario (MDAO). Principal investigators are Katherine Boydell, Hospital for Sick Children (HSC), and John Trainor, Centre for Addiction and Mental Health (CAMH). The research coordinator is Darryle Jadaa, HSC and CAMH.

What are family self-help/mutual aid organizations?

Family self-help/mutual aid organizations provide a caring environment for people who have a relative diagnosed with a mental illness. They are established and administered by and for family members, to provide mutual support, education, and advocacy. Family members are encouraged to participate at all levels of the organization through positions such as executive director, board member, support group facilitator, and/or crisis line volunteer.

Why study support groups for family members who do not have a mental illness themselves?

The health care system in Ontario is operating under severe fiscal constraints. Hospital and other institutional services for the mentally ill have been reduced, resulting in a greater demand for community-based services. But funding for community mental health services has not grown to meet the demand.

Increasingly, families are relied upon to act as caregivers to their ill relatives. Research has shown that the role of caregiver places great emotional and psychological strain on family members. This burden can be especially great for caregivers of people with severe mental illness.

Studies such as the Longitudinal Evaluation of Family Initiatives are important because we need to learn more about ways to reduce the burden on family members. Understanding the needs and experiences of these essential caregivers, and recognizing the valuable part they play in planning services and advocating for the family, will ensure that their role is recognized and supported adequately. The health care system has begun to contribute limited funding to support family members, and research provides the evidence to assess how effective those funding dollars can be.

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