An article published in the Summer 2009 issue of CrossCurrents:By Hema Zbogar
The Schizophrenia Society of Canada has recently released the results of North America’s largest-ever poll of people living with schizophrenia. The Quality of Life Survey asked 1,086 mental health consumers and family members what quality of life means to them and what they perceive as barriers to its attainment. The survey found that people with schizophrenia have similar hopes and frustrations as the general population.
The survey findings challenge other quality of life research on people with mental illness that has focused heavily on clinical issues and managing negative life events rather than on the concept of recovery. The respondents’ views indicate that service providers, policy planners and funders need to move beyond a narrow focus on treating symptoms of mental illness to also supporting clients’ hopes and goals in the areas of employment, housing, economic security and freedom from discrimination and violence. Respondents also wanted more community-based services, family education and social and recreational opportunities.
CrossCurrents conducted its own informal survey of people with schizophrenia and their families to find out what they want from treatment and treatment providers, and what they want from life. We posed three questions:This is what some of our respondents, from across North America, had to say.
- Is there an aspect of your life related to having schizophrenia that treatment doesn’t address but that you wish it would?
- What does a good outcome for schizophrenia treatment look like to you? In other words, what is the most important outcome for you?
- Do you feel that the mental health professionals you have dealt with have different expectations and goals than you?
Byron, Toronto, Ontario
For me a good outcome means a return to relationships. The symptoms of schizophrenia often make it difficult or impossible to maintain and enjoy these necessary relationships. We, like everyone else, need the laughter, sharing, trust, companionship, and the perspective and objectivity that come from friendships and family. Sometimes as a sufferer of this disease it can be difficult to assess the veracity of our own perspective, to figure out whether or not what we feel and perceive is grounded in reality or is in part or wholly changed, shifted, modified by our disease. Surrounding ourselves with positive people gives us a sounding board. Without them it can be incredibly lonely. Thirty years ago it might have made sense to have lower expectations of people with schizophrenia because medication had such strong side-effects and many people were left undiagnosed and untreated. I’ve had several doctors who had clearly given up on me achieving the things I am now doing. One of them actually told my mother that she should “lower her expectations” of me. This was early in my recovery. If my mother or I had listened to the doctor I may not have believed in myself enough to make the efforts I have.
Mental health practitioners also need to realize that these outcomes occur in their own time and that progress may be slow and difficult to perceive, but that it is nevertheless happening. I’ve recently finished a redirection through education program with straight A’s. I socialize on a regular basis and organize social events; I’m learning how to live on my own; I have a girlfriend; I have creative and career ambitions; I make and keep all of my appointments. I’m getting closer to full recovery.
We shouldn’t be punished by unnecessarily low expectations because of assumptions that are based on old truths and old knowledge. Realistically and practically, hope for your patients to reach the stars, because they may need your belief and conviction to get there.
Tamara, Winnipeg, Manitoba
I am 26 years old and have been living with schizo-affective disorder for 11 years. The ideal outcome for treatment allows for good quality of life and achievement of goals and dreams. Being diagnosed with schizophrenia doesn’t mean we can’t achieve our goals and dreams. It just means that they require necessary adaptations and available opportunities.
Often people living with schizophrenia receive treatment in just one area of their lives and not others. The ideal treatment for schizophrenia includes necessary outlets such as having a psychiatrist for discussing medications and a counsellor to address issues inside and outside the realm of mental illness because mental illness affects all areas of life.
There should be more opportunities for obtaining education and career goals through adaptations and mentoring. I am a university student and have endured many obstacles over the past five years, but my family and workers believe in me and encourage me to pursue my goals, so that I may one day achieve my goal of becoming an occupational or recreational therapist.
Angela, Orlando, Florida
I was diagnosed with schizophrenia about four years ago when I was 25. A good treatment outcome is to be motivated to pursue life to the best of your ability. I wish more treatment would address how to cope with the real world. More education about the illness is helpful. We need awareness and ways to cope and challenge ourselves while living with this illness. Without constant motivation and sometimes even guidance there is little to look forward to. My advice to clinicians: Never expect too little or too much from your clients.
Natasha, Belleville, New York
I’ve had paranoid schizophrenia since 1991. A good outcome involves reduced hallucinations, delusions and paranoia to the point where we can function on the job or at home on a day-to-day basis. My ideal treatment for schizophrenia is a psychiatrist who will listen to us, educate us and our families and recommend supports and community resources. It is important that psychiatrists remind us that we can lead a happy, productive life. There is always hope of recovery, even if our symptoms don’t go away.
Jake, Boston, Massachusetts
No hallucinations and the ability to function without having paranoid thoughts is the ideal outcome. I would like better medication that can treat anxiety along with psychotic symptoms. I want fewer side-effects, especially weight gain and muscle stiffness. I’d also like to see more non-drug related treatments.
Anna, Seattle, Washington
I wish that more doctors would listen to the “patient” rather than telling them.
Raymond, Toronto, Ontario
Most psychiatrists focus on symptom reduction, without an image of wellness to drive a recovery-based model of care.
George, Annapolis, Maryland
Most of us with mental illness wish for a better life than just collecting disability. I want to work for a living and not be a disability recipient, even though I could live on the payments I get. Some of us gave up on work because of drug side-effects. I want more from life. I want more power. I want the power to be alive!
John, Regina, Saskatchewan
We need more coaching towards developing coping skills for school and work. On several occasions I attempted returning to school, only to drop out after I became depressed. I did try evening courses and when taking only one subject I often earned an A. Most of my learning since the psychiatrist advised that I should have “no more school” has involved self-teaching. Now, with supports in my life, I am successfully self-employed.
David, Winnipeg, Manitoba
I am 33 years old and have had schizophrenia for nine years. The best outcome is full participation in society, whatever the role. My goal was to find employment with an income that reflected my academic credentials and skills. I underwent psychological-social rehabilitation and now have a high-income job that matches my education and skills. My counsellor had the same view of empowering me to learn life skills (independent living, leisure, etc.) and to obtain and keep a job.
Dan, Midland, Ontario
One ideal treatment that doesn’t exist is medication that controls negative symptoms. I’ve had paranoid schizophrenia for 22 years (I’m 38), and my positive symptoms are under control with medication, but I’ve yet to find a drug that treats negative symptoms like blunted affect. I still struggle in my relationships and often would rather spend time alone. I also can’t concentrate the way I used to and was unable to progress in my education as well as I might have hoped. Negative symptoms should be as much of a priority as the positive ones.
Maureen, Toronto, Ontario
This morning I worked on an extensive survey for family members of residents of the supported home where my daughter, who has schizophrenia, lives. This itself speaks volumes. Staff welcome me and communicate with me about my daughter and the goals of the house for her. On the other side of the street, figuratively and literally, where my daughter receives treatment, I know nothing about her treatment and goals. I have never spoken with her doctor, though I have asked time and again, but I finally gave up.
Mike, White Rock, British Columbia
My daughter is 22 and has had schizophrenia for six years. The ideal treatment would provide constant support to both the person with the illness and the people who support them. Currently, support is sporadic at best for both. This illness is devastating, and without good support and education a successful outcome is difficult.
To download the Schizophrenia Society of Canada report, “Quality of Life: As Defined by People Living with Schizophrenia and Their Families,” visit
www.schizophrenia.ca/QualityLife.htm
