One of the most dramatic changes in the health care system has been the shift from institutional care to community-based care. For more than ten years, Dr. Karen Schepp and Dr. Frederica O’Connor have been researching ways to help families whose lives have been turned upside down by caring for an adolescent with schizophrenia. Their pioneering approach helps both families and the afflicted person live better lives.
How pervasive is schizophrenia in our society?
About 1% of the population suffers from this disorder, with the average time for onset being late teens to early 20’s. There is another phenomenon called childhood schizophrenia, which is different. We became interested in schizophrenia because we found these individuals were most in need and most challenging to families.
Where do you find families to participate in your program?
From ads that we place in newspapers, from families who are self-referred, from advocacy organizations, and from about 700 mental health providers that we send mailings to. Our age range is 15 to 19, and so we are dealing with people with fairly early onset. The families of these young people are typically in crisis because of the illness. But, if the young person can receive treatment early, they may have a more positive outcome.
How has the care changed for mental health disorders?
Since the 1970’s, there has been a dramatic shift away from hospitalization. Families now tend to be the primary care givers 24 hours a day, and so there is a whole new challenge in finding the most effective treatment program, managing the illness on a day-to-day basis, and monitoring the medication. There are few resources for these youths, so they are usually home most of the time. Families often have little experience in knowing how to manage the disease or how to help their child.
What are some of the ways that schizophrenia affects everyday life?
Families are confronted with symptoms such as hallucinations, delusions, suspicions, and paranoid thinking. For example, a youth experiencing paranoid thinking may screen all the phone calls or mail and respond inappropriately. Such youths can also be impulsive, irritable and withdrawn, staying in their rooms for long periods of time and not taking care of themselves. And they can have unusual sleeping patterns, so that they are up and around the house at night. Losing touch with friends can also be a factor, both for the afflicted young person and for other members of the family.
What other effects can it have on the family?
It’s especially hard on siblings, who may not want to bring friends home. There is also strain about how much supervision is given, since the individual is still an adolescent seeking emancipation from the parents. Parents can find it difficult to be away from home each day for fear of what might happen. Often, they will get help from grandparents, aunts and other extended family, passing the young person around to avoid burnout. For many families, their whole life revolves around this one person. Parents feel guilty about not having time for the other children.
Do these young people realize that they have a problem?
You know, it really varies. I think most of our kids pretty much know that they are different, that they have hallucinations and thoughts that are different from others. But part of the illness is that they don’t recognize they are ill. They may not realize their thoughts are paranoid and so think people want to harm them. Or they may not be able to differentiate between what is real and what is a symptom of their illness.
Is it difficult to get them to take their medication?
Yes, and medications are crucial to this illness. They may not want to take them because of the side effects or because they do not think they are ill. Or they may forget to take them. Paranoid thinking may lead them to think that the medications are harmful and this creates a huge problem for families.
What is the prognosis for these young people?
There is no cure for schizophrenia yet, although the latest research is showing that aggressive early treatment may prevent some of the neurological deterioration. For the most part these youth will experience relapses and need to manage this illness for the rest of their lives. One of the ways to do this is to avoid stressful environments or events, since stress can trigger psychotic episodes. The Family Centered Program uses a problem-solving approach to help families create the most therapeutic environment possible.
Are you aware of anyone else doing a program like this?
No, not with whole families and adolescents. It is extremely hard to recruit families and that may be why there are so few programs like this. When people are managing, they can think that everything is under control. We tend to get people at their most desperate moments.
How long is the treatment program?
Since it is a research program, there is a treatment group and a control group, with families randomly assigned to each. The treatment program is eight months long and consists of six weekly sessions and six monthly follow-up sessions. The control group will also have the opportunity to participate in the treatment at the end. The program is free to participants as part of a research study funded by the National Institute of Mental Health. We welcome inquiries, even without a diagnosis. We conduct a thorough screening to determine if the youth meets the criteria.