Schizophrenia: Catching them Young

Schizophrenia affects approximately 1% of the population. Although this percentage doesn't seem large, it translates to approximately 2,900,000 Americans and 320,000 Canadians. And with a move away from institutionalization in the 1970s, many mentally ill individuals, including those with schizophrenia now live in the community. And in the case of adolescents, most live at home.

Schizophrenia usually appears in males in the late teens to early 20s, and in females in the 20s to early 30s. As if experiencing the physical and emotional changes and social pressures of adolescence isn't challenging enough, imagine the stress of also suffering from schizophrenia. Similarly, for families, the adolescent period is already difficult – imagine having to deal with an adolescent with schizophrenia.

The first signs of schizophrenia may appear as radical changes in behavior, even for a teen: negative symptoms, such as withdrawal from family and friends or positive symptoms such as talking to someone who is not there, laughing for no obvious reason, or having delusions of grandeur or persecution. However, because the symptoms often resemble those of depression or bipolar disorder, schizophrenia can be difficult to diagnose. And, since adolescents are in a period of emotional and hormonal flux, parents often mistake symptoms of schizophrenia for a passing adolescent phase. While the parents continue to believe this, the illness progresses.

Recent studies have shown that neurological damage occurs with each psychotic break. As a result, treatment should begin as early as possible. If adolescents are put into aggressive treatment with the first signs of schizophrenia, the number and severity of subsequent breaks, and thus the deterioration into what used to be called a "burned out schizophrenic," can be slowed or prevented.

It's Not Psychotherapy – It's Psychoeducation

Recognizing these particular problems, two nursing professors have developed a research program to evaluate the impact of what they call "psychoeducation" on schizophrenic teenagers and their families.

Dr. Karen Schepp and Dr. Frederica O'Connor of the University of Washington believe that if teenagers and their families learn about the disorder and about symptom management, the severity of symptoms can be lessened and hospitalizations can be reduced.

Schepp has focused her nursing career on child and adolescent psychiatry, while O'Connor is interested in adolescents and adults. Both professors teach psychiatric-mental health nursing and have done research into the usefulness of self-management as a treatment strategy.

Schepp and O'Connor asked 700 mental health professionals in the Seattle, Washington area to make referrals of adolescents aged 15 to 19 (and their families) to their psychoeducation program. Although a good number of people were referred to the program, it was difficult to get patients to enroll. In some cases, the family wanted to attend but their child did not. In other cases, the family itself was split, usually with the mother wanting the child screened and the father disagreeing, saying the behavior was normal for a teenager.

Due to the typical age of onset of the condition, the program included more males than females. All the teens were very ill, and most were too ill to be in school full-time. In many instances, says O'Connor, the parents in the program were willing to participate only when they had lost hope of being able to manage things themselves. Participation in the research program was in addition to regular treatment. The adolescent had to be receiving ongoing psychiatric care and living with family members who would also participate in the research program.

Seven cohorts of participants were divided into control groups (who did not participate in the program but were given the option of attending content sessions after the project was completed in fall 2003) or research groups, each with four to six families. In total, the research groups involved approximately 40 teens and approximately 200 family members. The first cohort began sessions in early 1999, and the researchers are analyzing data from the last cohort.

The program involved two-hour sessions once a week for six weeks (each one emphasizing a different symptom management technique) plus six monthly follow-up sessions. For the first hour of a session, the entire group of teens and families received information about schizophrenia symptom management and stress management. For the second hour, the families divided into three groups (one for the teens, one for their siblings, and one for their parents) to discuss the various techniques: relaxation exercises; breathing exercises; quieting exercises; thought stopping (for negative thoughts and hallucinations); anger management; and social skills.

It is important to remember, says O'Connor, that what was being provided in the sessions was not psychotherapy, it was psychoeducation. For example, families were taught that if a teen was listening intently to command hallucinations (such as voices telling them to do something) and generally losing control of reality, the family should arrange an immediate visit to their psychiatric care provider for possible medication adjustment.

Or, to deal with negative thoughts, teens were taught cognitive restructuring and affirmation techniques, for example, to remind themselves: "I can think positive thoughts" or "I am a good person." The teens were also taught social skills such as how to deal with teasing and how to minimize saying and doing things that draw unwelcome attention.

Siblings were taught to deal with their difficult brother or sister, such as how to encourage them to take their medications; not to argue with them or mock them; and that "it's the illness speaking, not the brother or sister." The teens and family members were also taught to consider what the teen's stressors and situation escalators are and to avoid them or catch them before they get out of control. Says Schepp, "The more people who understand, the more therapeutic the home environment."

Most of the sessions were led by psychiatric nurse practitioners. Nurses – O'Connor believes – are the perfect people to lead these sessions because they are able to focus on an illness with a strong biological component in a person-focused, symptom-management manner. "This is very much nursing to me," says O'Connor.

Results and Afterward

The study has two main aims: to improve the level of functioning of the teen and to improve the level of functioning of the family. Over the 14-month period, each teen was assessed four times using the Child and Adolescent Functional Assessment Scale (CAFAS), which looks at several domains of functioning, such as home, school, the community, how he/she handles feelings and relates to others. The families were also assessed four times, according to several instruments, including scales like the Family Adaptability and Cohesion Evaluation Scales (FACES) and the Family Support Scale (FSS).

Schepp and O'Connor are now in the process of analyzing the data collected and determining results. Schepp says that preliminary results are showing a big improvement in the families of the adolescent. With increased information regarding the illness, families are experiencing less uncertainty in how to manage their child. In general, says O'Connor, the families who do best have extended family that can share the responsibility of managing the teen. Single parents and families with no external family support, are at greater risk of becoming exhausted from the ongoing stress.

Concerning the teens, Schepp says that because they are so ill, the results are more difficult to evaluate. And because the disease is still progressing, it will take a longer time to assess the impact of the psychoeducation.

For more information see: • National Institute of Mental Health (US) • National Alliance on Mental Illness (US) • Mental Health America (US) • Canadian Mental Health Association • Schizophrenia Society of Ontario • World Fellowship for Schizophrenia and Allied Disorders

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