B.U. Bridge is published by the Boston University Office of University Relations.
By Hope Green
The onset of mental illness can have a devastating impact on families. Siblings can be overcome by shame at the sudden bizarre behavior of their brother or sister. Parents, moving from shock and grief to action when the disability surfaces, find themselves dealing with the limitations of the mental health--care system. Spouses, frustrated when their loved one refuses treatment, may bail out of the marriage.
Much of this is familiar territory for LeRoy Spaniol, the lead editor of a new professional training manual addressing family issues. Three decades ago, his only brother and a married sister were diagnosed with schizophrenia.
"It was very hard on my parents," recalls Spaniol, a psychologist and associate executive director at BU's Center for Psychiatric Rehabilitation (CPR). "At that time there was very little treatment available. There was basically just medication, and if that didn't work we just kind of accepted it."
Spaniol's brother stayed at home with their parents, and his sister remained with her own family. In that respect they were lucky. For most of the past century, Spaniol says, people with mental illness were not expected to recover, and many were warehoused in institutions. Professionals to whom parents turned for help clung to outdated notions about the cause of psychological disorders, such as the theory that an emotionally distant father or an overly permissive mother was to blame.
Research has since demonstrated that mental illness is neurobiologically based and not the result of bad child rearing. At the same time, studies have shown that 40 to 70 percent of people with severe mental illnesses, including schizophrenia, bipolar disorder, and major depression, recover and go on to lead normal lives. But the old myths have stubbornly persisted, even in some modern psychology textbooks.
"Many people with mental illness tell me that their health-care providers have told them they have no future, that they should just accept their fate and live a very marginal life," says Spaniol, executive publisher of Psychiatric Rehabilitation Journal and an adjunct professor in Sargent College of Health and Rehabilitation Sciences' department of rehabilitation counseling. "And many professionals continue to see parents as part of the problem rather than as part of the solution."
Troubled by these attitudes, Spaniol has spent much of his career trying to reeducate mental healthcare practitioners so they can approach families with greater sensitivity and achieve better results with their patients. His two decades of research at the rehabilitation center, a division of Sargent College, are reflected in the new manual, The Role of the Family in Psychiatric Rehabilitation (CPR, 2000).
Spaniol is the lead editor of the 218-page manual; he wrote or cowrote 6 out of its 10 chapters. Each section of the manual addresses a different aspect of the crisis that the kin of a mentally ill person might experience. For example, Spaniol devotes an entire chapter to the subject of managing stress and burnout, and writes of the "profound feelings of anxiety, anger, guilt, and worry" that overwhelm parents when a mentally disabled child withdraws socially, has poor hygiene, exhibits bizarre or self-destructive behavior, assaults others, or refuses to cooperate with a treatment plan.
At the end of each chapter is a set of exercises that encourages practitioners to imagine themselves in the situations these families face, and devise more sympathetic and effective responses to them.
"The book is organized so that people can pick it up and use it as a training manual for their staff," Spaniol says. "But the material in it is intended to be cotaught by family members. That's a very important part of the process, because professionals can see the family members functioning competently in the role of trainers and can get to know and understand them."
Team-teaching an upcoming workshop with Spaniol is Lois Pulliam, a Bedford, Mass., resident whose experience raising a son with schizophrenia led to her involvement with the Alliance for the Mentally Ill of Massachusetts. She and Spaniol have run curriculum and training workshops in collaboration with the state Department of Mental Health.
Pulliam says the manual is one of a kind, and hopes it will spur other efforts to reeducate practitioners.
"We're still in this transition to a new model," Spaniol says, "which is based on the belief and the reality that people do recover."
LeRoy Spaniol plans to use his book The Role of the Family in Psychiatric Rehabilitation as the basis of an all-day professional workshop he will direct on November 30, the concluding event in the Center for Psychiatric Rehabilitation's annual fall workshop series. For more information, visit the center's Web site at www.bu.edu/sarpsych/workshops.