While the team relied on validated assessments, such as the modules from the Family Experience Interview Schedule and the Family Empowerment Scale, it also used 2 inventories specially developed to evaluate the program's effectiveness. On the new inventories, the kinds of things that showed improvement were the family members' perception of their knowledge of mental illness, their ability to interact with the treatment system, their ability to take care of themselves, and their empathy and understanding of their ill family member, Dixon said.
The study found no change in the families' objective burden of disease, the material aspects of peoples' lives, Dixon said, adding that NAMI representatives did not expect that to improve. The dropout rate in the course was about 20%, which Dixon characterized as "pretty low for a community-based program."
To more fully understand the process of change for FtF participants, the research team taped interviews with 31 program graduates, 1 to 3 months after they completed the course.
"For many, the factual information about mental illness, diagnosis, treatment, medications, and side effects was completely or partly new [and] it replaced or mixed with previously held misinformation," wrote researchers and study authors Alicia Lucksted, PhD, of the University of Maryland, and Bette Stewart, NAMI's Maryland FtF coordinator.3 For instance, one interviewee said, "I came to realize that bipolar [disorder] is treatable [and] can be managed in . . . 60% to 80% of the cases. I didn't know that before, and that was very encouraging."
In 2005, the Maryland research team received a 4-year, $2.2 million grant from NIMH to conduct a randomized study of the FtF program. Dixon and her team are working with existing programs in Baltimore City and County, Montgomery County, Frederick County, and Howard County. The configuration of counties enables the study to encompass families in urban, rural, and suburban areas and of differing ethnic backgrounds and educational and socioeconomic levels.
"This trial is taking people interested in the class and randomly assigning them on a 1-to-1 ratio to either take the first class or the next available class. We have enrolled 115 people in the study. Our target is 300," Dixon said.
"We are trying for a deeper understanding" of the program's effects "by not only talking with the family but by directly interviewing the consumer," she added. For psychiatrists and others in the mental health field, Dixon said FtF is "an incredible resource" that makes clinicians' lives a whole lot easier.
"We are so pressed in terms of resources, yet here is something that can change the way a family member experiences the illness," she said. "The program is free to family members, the information is updated and accurate, and NAMI is all over the country. I would encourage psychiatrists to contact NAMI affiliates in their county, find out if classes are offered, and make sure they have brochures about the classes in their offices.... People acquire tools and a perspective and linkages that last beyond the 12 weeks of the class."Young family education
Besides the FtF program, NAMI offers several other educational programs, including its 10-week Provider Education Program, 9-week Peer-to-Peer Recovery Education Program, and Parents and Teachers as Allies Program. The latest entrant is the Young Family Education Program.
The course, being developed by Teri Brister, PhD, LPC, of NAMI, will roll out probably in January, according to Burland, and is designed for families with younger children, aged 3 to 19 years, who have mental illness (FtF works with families who have adult children).
The course consists of six 2-hour classes designed to be delivered as a series of consecutive classes or as an intensive weekend retreat to accommodate the time constraints faced by families with children. The course will cover much of what is provided in FtF but will also discuss diagnosis of major mental illnesses affecting children and adolescents, issues related to transition as children age, and working with the school and juvenile justice systems as well as the mental health system. A section of NAMI's Web site will be dedicated to dissemination of information and resources for the program and to connecting participants in the family program.
"As with all our courses," Burland said, "we try to offer a service that is comforting and comfortable."