Says a mother:
I have two sons. My older son has diabetes. My younger son has schizophrenia. The son with diabetes lost his sight and has many special needs. He gets emotional support everywhere he turns, and as his mother, I was always given information and advice from medical professionals. Everyone in the community goes out of their way to make his life better. By contrast, my other son has been misunderstood, shunned and disrespected by almost everyone in the community – even professionals who should know better. I’ve had to fight for every piece of information about his medical condition in order to help him. He is also terribly disabled…but his disability is not visible.
A review of the research on family involvement shows the importance of providing coordinated support services for families. Evidence indicates that family support, in conjunction with treatment
- leads to better client and family outcomes
- reduces utilization of acute services
- increases awareness among family members
- improves client and family member coping skills
- reduces caregiver burden, and
- improves family members’ abilities to support an ill relative.
The reality for many families is that they are required to become experts in their own right as they learn about the range of services, eligibility criteria, information on entitlements/benefits, housing case management and rehabilitation services. Canadian family experience, as well as family experience in New Zealand, indicates that lack of information for family members is a major hindrance in the recovery process for someone who has a mental illness (Mental Health Recovery Services, New Zealand 2000).
A quote from two researchers:
Parents who can maintain a positive family experience also have a positive view of their loved one. Families coping well with their child’s illness maintain a positive attitude, have realistic expectation of that person, and are less preoccupied with negative thoughts.
About 10 years ago, over 120 family members offered feedback on the need for family involvement. Here are the things they said they needed most, in order of importance:
- Inclusion in treatment
- access to information and assistance with bridging and linking to services
- training for mental health professionals to strengthen their skills and competencies to work with family members
- Access to counseling for the family members themselves and in a timely manner
- someone who could coordinate family services
A quote from a mental health professional:
Mental health teams need a pragmatic and respectful approach to identifying problems of living and understanding mental illness as a situation that the family as a whole has encountered – rather than some mysterious illness the client has that affects only him or her….emphasizing the real, lived-experience of the person and their significant others.
In 2012 and 2013, three coordinators were hired at VCH, one in Tertiary (residential facilities), one in Acute (for the psychiatric hospital at VGH – sometimes referred to as “Segal Building”), and one for Community Mental Health.
Staff were also asked about their opinions. Over 100 mental health staff working with adults emphasized the importance of family involvement and support as an integral part of their professional role.
And finally, a quote from a family member:
Families becoming part of the treatment team can be the best thing that could happen. We want to help our loved ones. We want to reduce the conflict and stress in both our lives and create healthier lives for all of us.