A landmark international survey has concluded that families caring for people with schizophrenia are at a breaking point. The ongoing survey is being conducted by EUFAMI, a European-based association of organizations supporting families coping with severe mental illnesses.
EUFAMI has collated the responses from people in seven countries including Canada. According to EUFAMI, family caregivers are a hidden workforce with an average age of 61. Most of those surveyed are the main or sole provider of care and they see themselves as providing this help for the rest of their lives. Most are caring for a son or daughter and they worry about what will happen when they are not around to offer help.
These caregivers are providing necessary help to people with the most severe mental illnesses. Their help enables these people to enjoy a safer, more stable and better quality of life.
Despite the crucial role that caregivers play, the survey revealed deep discontent with mental health care systems. Families feel, for instance, that they are not able to “influence important decisions in treatment and care planning.”
Why doesn’t the mental health system cooperate with these caregivers when it is able to work cooperatively with families of people with other disorders?
A recent systematic review of literature examining barriers to this collaboration found multiple reasons for staff reluctance to partner with families. The study revealed, for example, that among service providers there is unwarranted blaming of families for mental illnesses. Other obstacles stem from the lack of appropriate staff training even though system managers are espousing the value of this collaboration.
Although organizations like the Canadian Psychiatric Association go out of their way to firmly avow that schizophrenia “is not caused by poor parenting” many clinicians don’t receive science-based training about psychotic disorders. As well, parent blaming is rampant in the “alternative” mental health movement that has become increasingly powerful in recent years in forming mental health policy and even in delivering mental health care.
It’s hard for mental health clinicians, who are still too often trained to view parents as the source of the problems, to learn to work cooperatively with them. Mental health administrators need to acknowledge this problem and actively address the need for education about partnering with families.
Even when some clinicians are well educated about the state of knowledge about schizophrenia, they often still lack skills in working inclusively with families. Psychiatrists have told me that this training has not been part of their education.
Despite these deficits in training, some psychiatry programs have been working to create alliances with groups of family caregivers. Psychiatrists connected to the University of British Columbia’s Department of Psychiatry, for example, have long provided indispensable help to the British Columbia Schizophrenia Society, an organization started by family caregivers. As well, UBC psychiatry residents have worked alongside families on Vancouver Coastal Mental Health Services’ Family Advisory Committee.
This past week I happily witnessed a new level of effort from this department. Dr. Fidel Vila-Rodriguez, the Director of UBC’s Schizophrenia Program, brought a psychiatry resident with him to visit a long established family support group. As Dr. Vila explained, they were there to listen and learn from these families about the difficulties they experience.
The families at this gathering had plenty of stories about the difficulties they confront on a daily basis. One of the many common problems for these families is that their family member doesn’t understand their illness. Research demonstrates that people with schizophrenia do much better when they receive comprehensive education about their illnesses:
The Cochrane analyses on psychoeducation for schizophrenia found that psychoeducational interventions significantly reduced relapse and readmission rates, enabled fewer hospital days, increased medication adherence, increased satisfaction with mental health services, and improved quality of life.
Families in Vancouver whose family members have been part of early psychosis programs see the benefit of the psycho-education that is offered. In the regular adult treatment program, however, people aren’t receiving the education they need and families aren’t in a position to fill this gap.
Efforts, like those of Dr. Vila’s, to understand the problems confronting families make a difference. However, until curriculum in programs training all mental health clinicians address their deficits, family caregivers won’t see the changes they need.
November is National Caregivers Month. We are supposed to honour the contributions that all kinds of caregivers make to the wellbeing of people who need significant help in managing daily life. It would be a good time to carefully examine and address the unique difficulties faced by families dealing with severe mental illnesses. And it’s imperative that family caregivers play a key role in this process.