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 Centre for Addictionand Mental Health |
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What clients want from treatment: Quality of life issues top list of desired outcomesCrossCurrentsBy Hema Zbogar 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.
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. 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. 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. 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. 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. I wish that more doctors would listen to the “patient” rather than telling them. Most psychiatrists focus on symptom reduction, without an image of wellness to drive a recovery-based model of care. 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! 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. 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. 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. 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. 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. |
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Last updated: August 21, 2009 4:41 PM Published: October 30, 2009 6:59 PM ID#45551-R |