As far as mental health professionals can ascertain, schizophrenia is an equal-opportunity disease. It is recorded in all nations, at all income levels, and in virtually every culture around the globe.
The World Health Organization estimates that while 24 million people throughout the world suffer from schizophrenia, less than 50 percent of this population receives appropriate treatment. The situation for those in developing countries is worse: 90 percent of those with schizophrenia remain untreated.
Not surprisingly, throughout the world there are still many differences in treatment. In some places, treatment involves psychotherapy, medication, and a host of training and support programs. In others, it may mean a “one size fits all” drug or institutionalization. One thing is consistent, however. When it comes to treatment, those with the financial means have access to the best available treatment.
“There is no better time in the history of humanity for someone to suffer from a mental illness than now,” says Jeffrey A. Lieberman, MD, chairman, Department of Psychiatry, College of Physicians and Surgeons, Columbia University and director of the New York State Psychiatric Institute. “The quality of care is better and more extensive and our knowledge is greater than ever before and increasingly getting better.” However, Lieberman points out that while the United States has plenty of evidence as to how treatment works, treatment is not universally and uniformly available. “Our problem is not a lack of knowledge, but the delivery system,” he says. “If we organized and resourced our delivery system better, we could have a huge impact, but we need to have the social will to provide optimal care and services.”
“In the developing world, the proper medicines are very difficult to get because of the cost,” says Diane Froggatt, secretary and development officer for the Toronto-based World Fellowship for Schizophrenia and Allied Disorders. Generally, individuals living in rural areas don’t get good health care, let alone good mental health care. Finding quality treatment is made even more difficult when there is a war, famine, or other travails.
In Peru, Froggatt continues, half the population lives in poverty; those with serious mental illnesses receive little in the way of treatment or medication. “Their families look after them as best they can, but they are cared for in a very basic way and are often locked up,” she notes. “However, for those with financial resources, there are private services available.”
And those services can be excellent. “I have colleagues in Peru who are very knowledgeable, very au courant psychiatrists. These doctors periodically send their patients to the United States for second opinions,” says Lieberman. “In the private sector one can have access to state-of-the-art care if he can afford it.”
Preston Garrison, secretary-general and CEO of the Springfield, Virginia-based World Federation for Mental Health, agrees with Lieberman and Froggatt that financial resources are crucial to quality treatment. “People who are ill in low- and middle-income communities frequently do not receive diagnoses or treatments,” he says. “And historically, in rural cultures, those with schizophrenia or other major mental illnesses just do not get treated. These people are often driven out of their communities and end up homeless.”
But those with means do not always receive the best treatment. “In the United States, minority groups—even those who are affluent—receive a lesser quality of care than their white peers,” says Majose Carrasco, director of the National Alliance on Mental Illness (NAMI) Multicultural Action Center. “However, NAMI is working to change that and better reflect the country’s cultural diversity.
“A few years ago, NAMI realized that disparities existed and that the organization was not doing a great job reaching communities of color. A lot of what I do is to make NAMI more diverse culturally.”
Carrasco’s department is small—only two individuals—and she and her teammate work as consultants to various NAMI groups, such as its policy, education, and communications teams. “We will meet with community leaders from different cultures to help identify the needs they have. In turn, they help guide how we do our work,” she notes. “What works well in the general community may not do so well in minority communities.”
Carrasco is a strong advocate for community treatment, because it is the preferred model of care for some cultures. “We have seen a number of programs that have been shown to be effective in the community setting,” she says. Carrasco notes that the typical American model of care means treating people in institutional settings. “But research from UCLA shows that three-quarters of Latina women with schizophrenia live with their families,” she says. “Health care providers need to understand the strong role that families play in the Latin world. A UCLA study showed that the family’s warmth was a protective factor and could prevent relapses.”
“In our English-language brochures and fact sheets, we foster independent living, but when we translated that model into Spanish it didn’t work. The response was ‘Why would I want this person I love not to be living with her family?’”
However, to be effective, programs and services need to be targeted specifically. “I came from Ecuador to this country to attend college,” says Carrasco. “Consequently, my experience and cultural background is going to be very different from someone who came here fleeing the civil war in El Salvador.”
Does this mean that service providers are only effective if they’re from the same cultural background as their clients? Not necessarily, says Carrasco. “It’s more important that a health care provider really understands the background of a consumer and the culture he or she comes from,” she notes. “If the health care provider does have that cultural understanding, but does not speak Spanish, it will be necessary to bring in a trained mental health interpreter.”
NAMI encourages mental health professionals to learn how to become culturally competent. “Doctors often may misinterpret signs and symptoms,” notes Carrasco. “As a result, African Americans are often over-diagnosed with schizophrenia. One of the reasons may be that this particular population has a high level of distrust of mental health professionals. This country has to be able to provide health care professionals with the skills they need to be culturally compatible.”
Lieberman agrees, adding that physicians in the United States are trained in a way that “does not always provide adequate cultural sensitivity,” he says. For example, “Hispanics in this country have a greater degree of less accurate and less reliable diagnoses and usually do not get as good treatment as others.”
Finally, Carrasco adds that the United States needs more research into how to best treat Asian Americans, Native Americans, and many other communities, including gay and lesbian communities, who need providers who welcome them. “For example, providers working in the gay community need to not over-focus on sexual identity, but rather on the mental illness itself,” she notes.
Different approaches to treatment
“In the developed world, countries such as England or Australia focus on treatment that includes psychotherapy, medication, social skills training, supported employment and involvement with the family rather than longterm institutionalization,” says Anthony Lehman, MD, professor and chair of the Department of Psychiatry at the University of Maryland School of Medicine.
But that is not the case everywhere.
“In Eastern and Central Europe, long-term institutionalization is the primary mode for treating those with mental illnesses. These people do not receive the treatment that would enable them to return to the outside world, which is the desired outcome,” says Garrison. “In the United Kingdom and South America—at least those countries with the financial resources—treatment is primarily medication with psychiatric and anti-psychotic drugs in order for those with severe mental illnesses to successfully live in the community. Of course, the support of the family and community, as well as treatment with a mental health professional is important for an individual to be successful.”
“Ireland focuses on building peer support and educating primary care providers to identify mental illness. If primary care providers are better trained, mentally ill individuals will not fall through the cracks and will instead receive appropriate treatment.
Scotland, on the other hand, takes a more holistic approach, notes Garrison. “There is a trend to improve and expand the training of primary care providers to recognize the symptoms of mental illness and make referrals to mental health care professionals. There is a relationship between physical health problems and mental health problems, and when both needs are addressed, an individual’s overall outcome is much better. As an example, when mental and physical health care providers are working together, they will be able to make certain that the patient is not taking medications that are contraindicated.”
Shortages of mental health professionals
Other international challenges involve the sheer numbers of people in need of treatment and the lack of mental health caregivers.
“For instance, Ethiopia is a country of 27 million people and a country that has 10 psychiatrists,” says Froggatt. “The University of Toronto [Toronto, Ontario] has a program to train psychiatrists in Ethiopia’s capital, Addis Ababa. One of the things we have learned is that if you train physicians in the countries where they live, they are more likely to stay and work in their country of origin.” This approach is a step towards making mental health services available to those in need within a country, and helps reduce the overwhelming psychiatrist-to-consumer ratio.
In Kenya the situation is dire. According to an Associated Press article, “Mentally Ill in Africa Get Little Help” by Katharine Houreld [March 15, 2009] “In Kenya and many other African countries, poverty, lack of access and the stigma of mental disease prevent patients from getting the help they desperately need. Despite some recent progress, just 0.01 percent of Kenya’s health budget is spent on mental health, compared to around 6 percent in the United States, for example.”
Often, continues Houreld, the mentally ill are locked up in despicable, life-threatening conditions, where they may be subject to physical and sexual abuse. In addition, in several African countries, those with a mental illness are prevented from testifying in court against their abusers. Yet things are beginning to improve: In 2003, Kenya passed a Disability Act that made it illegal to hide or imprison the mentally ill.
Tanzania is in even worse shape than Ethiopia. The country has a population of approximately 40 million. The number of psychiatrists? Three in the entire country—and only a few psychiatric nurses and other mental health professionals.
On the other hand, says Froggatt, Uganda has a very good health care system. “Mental health services in Uganda are relatively well developed in the major centers and even in rural areas there are clinics that deal with mental illness,” she says.
“In South Africa the treatment of schizophrenia is sadly lacking, but there are medical practitioners who are making great efforts to increase the level of training for psychiatrists and psychiatric nurses.” However, the pattern remains the same—services are available to those who can afford them. “In South Africa there are some very good doctors who are conducting research and providing care that is as good as in the United States,” says Lieberman.
In the Mid-East, Froggatt points to the Iranian Society for Individuals with Schizophrenia, in Tehran, Iran. “This organization was established in 2001 to help and support families of people with schizophrenia by providing pamphlets and information to them,” she says. “Because there are so few social workers and other mental health care professionals in Iran, it is very important that families have a high level of education in order to best support their mentally ill relatives.”
Living and working productively
Garrison at the World Federation for Mental Health has hope for people with mental illness. “In some situations people are very well treated and do live effectively and productively in their communities.”
Robert Drake, MD, PhD, a professor of psychiatry, community and family medicine with Dartmouth College, Hanover, New Hampshire, has spent more than 20 years studying vocational rehabilitation in the United States. “Despite what many people think, about 70-75 percent of people in this population have the goal of holding down jobs, and that is true in other countries as well,” he says. “We have progressively improved the model for helping people with schizophrenia and other serious mental illnesses to get back into the work force.”
One of the problems in the past was that traditional programs tended to find enclaves for people to work in. “There might be a team of 25 cleaning workers, but the problem was that five to 10 of those did not want to do this work and did not stay on the job,” notes Drake. “As a result we now have a model that specializes on individual preferences or 20 different types of jobs for 20 different people. That might include working as a cook, at a radio station, in an art store, and so on.”
Supported employment consists of consumers working with employment specialists who join their mental health team and is three times more successful than non-supported vocational programs. “The employment specialist helps people find work and become steady employees,” says Drake. “These specialists are paid for by the mental health agency they work for with financial supplements from Medicaid, [state] departments of vocational rehabilitation, and state mental health dollars.”
Drake adds that typically people begin working a few hours a week and then raise that to about 20 to 22 hours. “There is a disincentive to work full-time as they would lose the health care benefits they receive from disability insurance,” he says. “When people are working, they earn more money and are able to get out of poverty, not to mention that there are enormous gains in their own self esteem.”
Yet it is not just those in the United States who want to be part of the work force. In the United Kingdom, says Drake, the supported employment model has been adopted into its National Health Service. “The Sainsbury Centre is a large institution that works to have people with mental illness move into the workplace,” he says. “In Australia, there is a great emphasis on public mental health, treatment, and supported employment.”
“We also know this is being done in China, as well as Canada and other European countries, and the European Union is very much in favor of supported employment.”
Froggatt points to an Indian initiative: The Aasha Employment Project (Aasha, which means hope, is a non-profit, non-governmental organization established in September, 1989). Aasha opened a retail store in 2003 that employs consumers who were once involved in other forms of occupational therapy. Aasha employees earn salaries as they take care of customers. The employment project is designed to motivate and sustain them as they journey toward rehabilitation.
Another Indian venture to see people with schizophrenia moving into the work force is the Kolkata-based Turning Point Mental Rehabilitation Centre. Employment is essential, as in India there are no pensions, no disability insurance, and no unemployment insurance.
Looking to the future
“What is missing is attention to the total health of the person because of lack of insurance or income. And often due to a lack of insurance the physical health needs, such as diabetes and metabolic problems, are not adequately addressed,” says Garrison. “What is important is early diagnosis, treatment, and intervention. I think that with advances in research and policy changes, schizophrenia can be dealt with in a very effective manner. We know what needs to be done…we just have to implement the necessary changes.”
“When people have the support they need…people who understand them and their illness, they will have better self esteem. But unfortunately there are places in the world where these men and women are tied up or are so stigmatized that they end up running away,” says Froggatt. “When people are looked after and not shunned they will do well.”
“The good news is that recovery is possible for anyone,” says Carrasco. “But that is not often a reality for minority communities, and it should be. We are so culturally diverse in the United States that the system should have learned how to deal with this diversity, but while we are working at this, we have not achieved quality treatment for everyone. And that should be our goal.”