Volunteers needed for schizophrenia study

For aging families who have an adult son or daughter with schizophrenia, the unpredictable disease heightens fears about the future.

A new study hopes to change that fact by better understanding the needs of these families. Researchers will collect detailed information from 300 Wisconsin families whose parents are providing daily care for a son or daughter with schizophrenia.

Supported by a five-year, $1 million grant from the National Institute of Mental Health (NIMH), the next big step for the study is finding participants throughout the state. To be eligible, the mother in the family must be between ages 55 to 85, and have a son or daughter with schizophrenia who lives at home or visits daily.

Researchers Jan Greenberg and Marsha Seltzer, both professors in the School of Social Work and the Waisman Center, say this is a great opportunity to learn about the long-term toll schizophrenia takes on families. It might also call attention to the need to improve services and help families plan for the future.

About 20 to 30 percent of all people with schizophrenia live at home with parents, Greenberg says. In Wisconsin alone, that amounts to an estimated 10,000 families. Despite strength in numbers, their needs are poorly understood.

“This study aims to give voice to people who have not been prominently heard,” he says. “People will have an opportunity to shape the future of mental health policy and delivery.”

Schizophrenia, which strikes an estimated 1 percent of Americans, is the most chronic and disabling of mental disorders and results in thought disturbances, hearing voices and hallucinations. New research suggests a combination of biological and environmental stresses cause the disease, which most often occurs in young adulthood.

The national movement to move persons with mental illness out of institutions put responsibility for care on the shoulders of families. Yet today, these families are in a constant battle for adequate resources. Health insurance is hard to obtain and financial support is at poverty level.

Seltzer says another important goal will be finding out how persons with schizophrenia fare when they lose family support, when their parents die or become ill. This will be a huge issue as parents of the Baby Boom generation move into their later years of life.

A pilot study by the researchers found that the unpredictability of schizophrenia can rob parents of their ability to plan for the future. Many parents also feel cut off from the decisions mental health professionals are making for their adult son or daughter.

But there are pluses as well, such as strong, caring relationships that develop between parents and siblings. “Unlike most studies that look at mental illness only as a burden, this research focuses on the positives within families,” she says.

Mothers in the study will be interviewed and asked to complete a questionnaire, while fathers complete a questionnaire only. Persons with schizophrenia will be given the opportunity to participate. Over the five years of the study, participants will be interviewed on three occasions.

Just talking has its benefits. Greenberg says the social stigma of mental illness produces feelings of isolation that people coping with other health problems may not experience.

“It’s a shock when we interview someone 70 or 80 years old and they say, no one ever asked them what’s it’s been like for them,” Greenberg says. “They are happy to share their experiences, often for the first time.”

To learn more about this study, contact project manager Renee Makuch at the UW–Madison Waisman Center at (608) 262-4717; or by email at makuch@waisman.wisc.edu. The study is confidential and participants will be paid for their efforts.