People With Schizophrenia and Caregivers Face Burdensome Barriers to Care

National Mental Health Association
Thursday, 19 June 2003

NMHA Survey Reveals Need to Reduce Stigma and Improve Access to Treatment and Services

A survey by the National Mental Health Association identifies three core barriers to improving quality of life for people with schizophrenia and their family and friends who serve 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.

According to the "Barriers to Recovery" survey, 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.

"Stigma is by far the largest barrier to improving quality of life for people with schizophrenia and their caregivers," says Michael Faenza, MSSW, NMHA President and CEO. "This stigma fuels the idea that it is ‘okay' to limit access to needed services and supports. It is not."

The survey shows:

• 58 percent of people with schizophrenia and 47 percent of caregivers believe successful treatment exists for schizophrenia, compared with only 27 percent of the general public.


• Approximately one-half of the general public believes people with depression can hold jobs (50%) and raise families (49%), while only 14 percent of the general public thinks that people with schizophrenia can do either of these.

A major gap exists between the need for and availability of treatments and services, including access to housing, appropriate insurance and effective medications. 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:

• Less than half (48 percent) of people with schizophrenia think adequate services for people with mental illness exist, and only one-third (35 percent) of caregivers feel adequate services exist for families and friends dealing with mental illness.


• Only one-half of people with schizophrenia (52 percent) and even fewer caregivers (21 percent) agree that insurance coverage for mental illness is as good as coverage for physical illness.


• Three-fourths (72 percent) of people with schizophrenia said side effects significantly impact their lives, and 75 percent said side effects cause them to switch medications.


• The majority (70 percent) of both caregivers and people with schizophrenia are satisfied with the effectiveness of current medications in treating the illness. Yet, only half of caregivers and 62 percent of people with schizophrenia are satisfied with the availability such medications.

"Mental health services are available in most areas, but people often cannot access them," said Chuck Ingoglia, MSW, NMHA Senior Vice President of Policy and Services. "For example, state-of-the-art medications are available to help reduce the symptoms of schizophrenia, but that does little good if the person cannot obtain them."

The "Barriers to Recovery" survey also shows that many caregivers (84 percent) suffer from anxiety as 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:

• 63 percent of caregivers say it is difficult to work full time. As a result, caregivers' household incomes are on average 13 percent lower than the general public, despite comparable age and education levels.


• About 70 percent say it is difficult to maintain a positive attitude and to deal with stigma.

Many important strides have been made to help break down barriers for people with schizophrenia so that they can continue on the road to recovery. However, the "Barriers to Recovery" survey highlights additional needs. For example:

• Increased public education can greatly reduce the stigma associated with schizophrenia in much the same way it reduced the stigma regarding depression. Public education can reinforce the fact that people with this illness can function just as anyone else if they receive the proper supports.


• Passage of mental health parity legislation under consideration in Congress – as well as in many states – that, if enacted, would require insurers to cover mental health conditions in the same manner they do physical conditions.


• Increased access to state-of-the-art treatments and supports can link people with schizophrenia to the core resources they need to begin to get their lives back.

"This survey proves what people with schizophrenia and caregivers already knew regarding the barriers to an improved quality of life," added Faenza. "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."

Harris Interactive Inc. conducted the survey from October 29 through December 19, 2002. Harris completed interviews with 1,087 adults age 18 and older. Of the respondents, 403 were at least somewhat aware of mental illnesses, weighted to be representative of the randomly occurring population as determined by a pre-screening. In addition, 202 participants knew someone with a mental illness other than schizophrenia, 201 knew someone with schizophrenia and 200 were unpaid caregivers for someone with schizophrenia. Also, 81 participants diagnosed with schizophrenia were recruited through the NMHA network. The survey was supported by an unrestricted educational grant from Bristol-Myers Squibb Co. and Otsuka America Pharmaceutical, Inc.

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