People With Schizophrenia and Caregivers Recognize, Speak Out About Barriers to Quality of LifeNational Mental Health Association New NMHA Survey Reveals Need to Reduce Stigma and Improve Access to Treatment and Services A survey released today by the National Mental Health Association (NMHA) identifies three core barriers to improving quality of life for people with schizophrenia and their family and friends who act as caregivers. Stigma ranks as the number one barrier to recovery, followed by inadequate insurance coverage and lack of access to appropriate treatments and services. At a press briefing today at the American Psychiatric Association (APA) annual meeting, NMHA released the results of the "Barriers to Recovery" survey, outlined its implications and offered a roadmap for breaking down these barriers.  The "Barriers to Recovery" survey demonstrates how misperceptions continue to form the basis of the public's knowledge of schizophrenia, contributing largely to the stigma regarding the illness. The survey reveals that the general public has little faith that people with schizophrenia can hold jobs, raise families and contribute to society. "This survey shows a dramatic disparity between the attitudes of people with schizophrenia and caregivers, compared with those of the general public," said Chuck Ingoglia, senior vice president, policy and services, NMHA. "In reality, people with schizophrenia and the people closest to them have the most accurate picture of the illness. The inaccurate public perception is the root of stigma, by far the largest barrier to improving quality of life for people with schizophrenia and their caregivers." The survey shows:
"Stigma seems to make it acceptable for people to treat me differently," explained Bill Compton, a panelist at the briefing. "I don't think I'd have to fight that same level of discrimination if I had a physical illness or even a different mental illness." Assessing Needs A major gap exists between the need for and availability of treatments and services, including access to housing and appropriate insurance. Often, people with schizophrenia who cannot access appropriate services lack the support and state-of-the-art treatments that can control their symptoms and help them get their lives back. In fact, the survey shows:
"Mental health services and treatment options are available in most areas, however many people with schizophrenia have trouble accessing them or find they do not meet their needs," said Peter Weiden, M.D., director of Schizophrenia Research Service, professor of psychiatry, SUNY Downstate Medical Center. "For example, medications are available to help reduce the symptoms of schizophrenia, but that does little good if the person cannot obtain these medications. Also, the side effects of antipsychotics are such that it can be much more difficult for the person to stick with the medication day in and day out. Therefore, its very important to work with the person with schizophrenia to choose an appropriate treatment plan." Because of this lack of access, some people with schizophrenia may have to continue with mediations that are not the best fit for them. Overall, 70 percent of both caregivers and people with schizophrenia are satisfied with the effectiveness of current medications in treating the illness, but only half of caregivers and 62 percent of people with schizophrenia are satisfied with the availability of effective medications that do not cause significant side effects. The "Barriers to Recovery" survey also shows that many caregivers (84 percent) suffer from anxiety that is a direct result of caring for a loved one with schizophrenia, and this anxiety is due to the additional emotional and financial burden of providing support. Further, the demands placed on caregivers' time have a direct impact on their quality of life. For example:
Breaking Down the Barriers Many important strides have been made to help people with schizophrenia break down barriers and continue on the road to recovery. However, the "Barriers to Recovery" survey highlights additional needs. For example, public education can greatly reduce the stigma associated with schizophrenia in much the same way it has reduced the stigma regarding depression. Public education can reinforce the fact that people with this illness can function much like anyone else if they receive the proper support. In addition, there is new mental health parity legislation under consideration in Congress that, if enacted, would require insurers to cover mental health conditions in much the same way they do physical conditions. Further, access to state-of-the-art treatment approaches can connect people with schizophrenia with the core resources they need to begin to get their lives back. For example, in Los Angeles, The Village program empowers people with schizophrenia and their caregivers to be more involved in their treatment and offers access to better support and treatments. Instead of dictating treatment, people with schizophrenia collaborate with their treatment team to create a supportive environment that promotes individual growth, hope and recovery. In addition, access to appropriate housing is a basic need for everyone, not only as shelter, but also as an environment in which to learn about relationships and everyday living. Several organizations recognize this need and help people with mental illnesses gain access to housing that meets each individual's needs. "This survey proves what people with schizophrenia and caregivers already knew regarding the barriers to an improved quality of life," added Chuck Ingoglia. "Now we need to reduce the barriers that people with schizophrenia and caregivers face every day. A good start includes public education, improved insurance legislation, and better access to appropriate services and treatments." Survey Methodology Harris Interactive Inc. conducted the "Barriers to Recovery" survey from October 29 through December 19, 2002. Harris completed interviews with a group of 1,087 adults age 18 and older, including 403 categorized as aware of mental illness in general, representing 90 percent of the total population age 18 and older in the U.S., and weighted to be representative of the randomly occurring population as determined by a pre-screening. In addition, 202 participants were identified as knowing someone with a mental illness other than schizophrenia, 201 as knowing someone with schizophrenia, and 200 as unpaid caregivers for people with schizophrenia. Another 81 participants diagnosed with schizophrenia were recruited through the NMHA network. The survey was supported by an unrestricted grant from Bristol-Myers Squibb Co. and Otsuka America Pharmaceutical, Inc. About Schizophrenia In the U.S., one in a hundred people, about 2.2 million, have schizophrenia. It knows no racial, cultural or economic boundaries. Symptoms usually appear between the ages of 13 and 25, and often appear earlier in males than females. Schizophrenia interferes with a person's ability to think clearly, manage emotions, make decisions and relate to others. Schizophrenia is a serious disorder that affects how a person thinks, feels and acts. Someone with schizophrenia may have difficulty distinguishing between what is real and what is imaginary, may be unresponsive or withdrawn, and may have difficulty expressing appropriate emotions in social situations. While there is no cure for schizophrenia, it is a treatable illness. It is known that antipsychotic medications reduce the risk of future psychotic episodes in people who have previously experienced a psychotic episode. Because relapse is much more likely when medication is discontinued or taken irregularly, it is very important that people with schizophrenia work with their treatment team develop appropriate treatment plans. About NMHA The National Mental Health Association is the country's oldest and largest nonprofit organization addressing all aspects of mental health and mental illness. NMHA works to improve the mental health of all Americans through advocacy, education, research and service.
For more information, or to contact National Mental Health Association, see their website at: www.nmha.org |
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