In 20 years of dealing with severe schizophrenia in her sister and daughter, it occurred to psychologist Joyce Burland, PhD, that she "had never been given any instruction on how to be helpful to them," so in 1991, she wrote up a highly structured course with a standardized curriculum and training guide.
In 20 years of dealing with severe schizophrenia in her sister and daughter, it occurred to psychologist Joyce Burland, PhD, that she "had never been given any instruction on how to be helpful to them," so in 1991, she wrote up a highly structured course with a standardized curriculum and training guide. That course, the Family-to-Family (FtF) Education Program, available free through National Alliance on Mental Illness (NAMI) affiliates, subsequently has helped more than 150,000 family members of adults with serious mental illness and is serving as a model for NAMI's Young Family Education Program launching next year.
"Mental illness is a very traumatic event for the person experiencing it and the family witnessing it," Burland said. "I can't tell you the trauma of watching the person change before your eyes. They could have put a dresser drawer in front of the bedroom door, they could have wrecked the house while you were gone, they could be sitting mute in the living room, but they are out of reach, and we don't know what to do about it."
As a clinical psychologist, Burland knew that other mental health professionals had enormous case loads and, in most cases, had never learned how to teach families about mental illness. A new workforce was needed, she concluded. So she began training family members affiliated with NAMI to teach each other. Now, more than 7000 volunteers, who have successfully completed the 3-day, 26-hour intensive training program, serve as teachers and teacher trainers.
The program "has legs because it is so deeply needed," said Burland, director of NAMI's Education, Training, and Peer Support Center. Within 2 years of FtF's start in Vermont, it was available in 11 states, she said, and within 4 years, it was being used in 20 states. Now it is used in 48 states, Mexico, Puerto Rico, and Ontario. Also available in Spanish, the course is being taught in Hispanic communities throughout the United States. In San Diego, Burland noted, the NAMI affiliate recently received a grant to translate the course into Arabic and Mandarin for populations in that area.
The 12-week course covers schizophrenia, major depression, subtypes of bipolar disorder, all the anxiety disorders, borderline personality disorder, and the dual disorder of drug addiction and mental illness.
"These are biological disorders, and families need to know they are," Burland said, so there is a class that covers brain basics, including research on structural and functional brain abnormalities involved in the major mental illnesses, chemical imbalances, and genetic research. Another class discusses how medications work, medication adverse effects, stages of adherence to medications, and early warning signs of relapse. To ensure the accuracy and relevance of the information disseminated, Burland updates it each year. She also expects to rewrite part of the content when DSM-V is published.
The course offers much more than information, Burland said, because it has a dual focus on education and understanding. "Our courses are as much about understanding the lived experiences of these illnesses as they are about understanding diagnoses and medications, because the illness is happening to a person," she said. "We go into what is it like to get a diagnosis, what is it like to take medications, how do you deal with medication side effects, what is it like to have your life stopped by schizophrenia, what is the process of recovery, of reclaiming your life. It is a very intimate, direct understanding of the lived experience."
Another goal of the program, according to Burland, is to help free the caregiving family members from the worry and pain they experience and to remind them that they have a life too.
How well FtF accomplishes its goals is currently being measured. Over the past decade, a research team at the University of Maryland in Baltimore and NAMI (nationally and its affiliates in Maryland) have collaborated on a series of studies to examine the benefits people receive when they complete FtF. To date, the research team has conducted 2 quantitative and 1 qualitative study.1-3
The benefit of the class is in reduced subjective burden, increased empowerment, better self-care, increased knowledge of serious mental illnesses and the mental health system, and improvement in depression, according to Lisa Dixon, MD, MPH, professor of psychiatry at the University of Maryland School of Medicine and director of the Division of Services Research in the department of psychiatry.
Defining "subjective burden" as the emotional stress and burden of mental illness in the family, Dixon said, "We measured it using 2 scales, one called 'Worry' and the other called 'Displeasure'; both domains were significantly reduced. So the way I interpret this is that family members are more able to manage the disruption and the overall negative impact on their lives caused by mental illness. It doesn't mean they care less about their family member, but they are more able to modulate [their response to] it and not have it be such a disrupter in their lives," she said. "We also used an empowerment scale that has 3 domains-a sense of empowerment in the family, a sense of empowerment in the community, and a sense of empowerment within the service system, and in all 3 of those areas the empowerment went up significantly."
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."
Dixon L, Stewart B, Burland J, et al. Pilot study of the effectiveness of the family-to-family education program.
Dixon L, Lucksted A, Stewart B, et al. Outcomes of a peer-taught 12-week family-to family program for severe mental illness.
Acta Psychiatr Scand.
Lucksted A, Stewart B. Benefits and changes for Family to Family graduates. Report to NAMI of qualitative outcome interviews with FtF graduates. Available at:
. Accessed August 28, 2007.