November 5, 2003
excerpted from Newsletter of the World Fellowship for Schizophrenia and Allied Disorders (WFSAD)
I talked with Dr. Joyce Burland, the founder of the Family to Family Education Program of the National Alliance for the Mentally Ill, U.S.A. I asked her about the enormous success of the program in North America. She agreed that it has developed and been sustained in an amazing way. “One of the primary reasons for its success is its basis in recognition of trauma. Families learn right away that they have sustained trauma and that there is a process of adaptation to the overwhelming events that have happened. The trauma model recognizes that what families experience, the shock at the beginning, then the chaos, anger, grief and finally acceptance, is a normal progression of adaptation. Families come to the program at different stages,” Dr. Burland continued. “As they progress through the program they realize where they stand in the process of adapting. When families realize they are following a normal pattern of behaviour that is a reaction to trauma, they become more comfortable with their own feelings and begin to understand themselves.”
The 12-week course is offered to family and friends of individuals with serious mental illness. It is taught by 3,500 trained NAMI family members and family-member consumers. Since 1993, it has reached over 80,000 people in 45 states, Canada and Mexico, and has been translated into Spanish. Scientific evaluation shows that course participants gain a greater understanding of mental illness, cope better with the strains of illness, worry less, and feel newly-empowered to navigate the health care and political systems to get better treatment and services. Class 11 is devoted to advocacy. Many families are eager to use their newfound knowledge and there are often as many as 5 or 6 trainees ready to go to work on current advocacy programs. Dr. Burland said that NAMI would soon launch a new advocacy program called “A Campaign for the Mind of America.”
Dr. Burland attributed a large part of the course’s success to the trainers. It enrolls 350 new trainers each year and each is “fierce in guarding the fidelity of the course.” This brought me to the question of the monumental task of keeping the course materials and its trainers up-to-date. “Each year I keep a file of every new event in brain research and education. A lot of help comes from the high quality presentations at our Convention each year. In November I re-work and update the whole curriculum, and then, of course, the program must give refresher courses to the trainers.” New trainers go through the NAMI Support Group Facilitator Skill Training Program, a weekend training workshop. Family and consumer support group leaders are provided with the requisite skills and knowledge of group dynamics to enable them to run group meetings, where participants are encouraged to share actively in the work of the group.
I was amazed that Dr. Burland’s enthusiasm for Family to Family was still very vital ten years into the program; that her clear vision still shone through, a fact which in itself explains part of the energy of the program itself. She was candid in saying that funding was everything in mental health programs; something you could not do without. Funding has enabled NAMI not only to develop and sustain the program but also to market it as well, so that State Mental Health Systems give service contracts to NAMI State Alliances to deliver the program.
Even before she had finished developing the Family to Family Program, Dr. Burland saw the need to educate and train staff at public mental health agencies. “Too often families are seen as part of the problem, we wanted them to be seen as part of the solution,” Dr. Burland said. The 10-week, on-site program of weekly, three-hour sessions is taught by a five-member team of family members, consumers and a mental health provider, who is either a family member or a consumer. The course brings trainees “inside the lived experience of families” and expands compassion for the daily realities of their struggle. “I never got close to what it must be like before.
This has changed me,” said one course participant. The program is also designed to prepare staff members to practice a collaborative family/provider/consumer model of care.
Dr. Burland explained that what clinicians have often missed is relating illness to the lived, human experience. “If this is not recognized then the humanity of caring is lost,” she said. Drawing on the analogy of a natural disaster she said, “When a tornado has blown through town, everyone witnesses the devastation and the human loss. There is an immediate response from everyone to the trauma and people begin to put their lives back together. But with mental illness, no one sees the tornado hitting the family. Because it is not seen, it is not recognized or attended to. In talking to providers we hope to make them see and feel the tornado.” Because of their leading role in the development of these peer programs in education and support, NAMI has established a new division at the national level called the NAMI Education, Training and Peer Support Center. This department is responsible for coordinating and expanding six national programs. Involved are over 4,000 trained NAMI volunteers, who work in the field to bring these programs at no cost to families, consumers and mental health professionals across the United States, Canada and Mexico.
In order to find out more about NAMI’s Peer-to-Peer program, I spoke to Kathryn McNulty, who has been directing the program since its inception in 2001. She explained that this is a free, nine-week consumer-taught education program about the recovery process, for consumers who seek to manage their serious mental illness successfully and maintain wellness. The curriculum uses a combination of lectures, interactive exercises, and structured discussions drawing on the group’s diverse experiences. The course also covers individual relapse prevention, and how to prepare an advance directive for psychiatric care (gives instructions for your care if at any time you are unable to give them yourself). I asked McNulty whether consumers were in any way changed by the course experience. She told me that the course helped move the person along in his/her own journey toward recovery. Though NAMI would evaluate the outcomes of the course, this information was not yet available. I was puzzled that one class was devoted to advance directives, but as McNulty put it, "Learning about these is extremely useful for people. It gives them the chance to think through the process and examine how they feel about their illness." People attending the courses were diverse in many ways, including their diagnosis, but participants seemed to have more in common than not. McNulty described it aptly: "The struggle is the same."
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