Family education is the ongoing process of educating family members about a serious mental illness in order to improve their coping skills and their ability to help a relative affected by the illness.
When someone is diagnosed with a chronic illness, such as diabetes or heart disease, efforts are typically made by his/her doctor not only to educate the individual directly affected by the illness, but to educate and involve his/her family in treatment and care. Historically, this has not been the case with severe mental illnesses such as schizophrenia , major depression, bipolar disorder , or schizoaffective disorder .
More often than not, mental health professionals did not educate families about what to expect or how to care for their loved one. In fact, for much of the twentieth century it was believed that mental illness was caused by overly strict or overly permissive parenting styles, and families were unfairly blamed for causing these disorders. Mothers were labeled "schizophrenogenic" and even well-meaning clinicians tried to keep them and other family members at a distance. Bateson's "double-bind" theory suggested that contradictory messages and communications by parents were the root cause of the problem. Because of these ideas and the stigma associated with mental illness, families felt isolated and alone, with few resources to assist them. After diagnosis , the only recourse for most families was to go to public libraries to read and learn as much as they could on their own.
Over the last 20 years, advances in genetics, neuroscience, and imaging techniques have provided new evidence that severe mental illnesses are neurobiological in origin. With this scientific knowledge has come greater awareness and understanding that these are "no-fault" brain illnesses, and that neither families nor patients should be blamed. Rather, they both should receive the necessary information and support to help them better cope with these complex disorders.
In the United States and elsewhere, the large majority of individuals with severe mental illness live with their families and depend on them for housing, financial assistance, advocacy, and support. For this reason families require knowledge and skills to actively help their relative avoid relapse, benefit from treatment, and achieve recovery. Specifically, family caregivers require information about: the illness and its symptoms, how to better communicate with their family member and professionals, pros and cons of different treatment options, medications and their therapeutic uses and their adverse side effects, signs of relapse, availability of community services and supports, how to access benefits and entitlements, and how to handle crises or bizarre and troubling behaviors. Because living with an individual with a serious mental disorder can be very stressful, family education must also focus on teaching families about the importance of taking care of themselves.
The National Alliance for the Mentally Ill (NAMI) is an umbrella organization of more than 1,100 local support and advocacy groups in 50 states. The organization comprises families and individuals affected by serious mental illness who come together for family education, mutual support, and advocacy. Through conferences, support groups , and newsletters, family members have opportunities to educate one another and exchange experiences. The organization has also made great inroads in educating mental health professionals about the importance of educating family members and involving them in plans for the patient's treatment and rehabilitation. On a more formal level, NAMI has sponsored "Family to Family" a 12-week education course that has been taught to 50,000 family members in more than 42 states. Taught by family volunteers, this is the first peer program in family education in the United States.
Family education is slowly becoming an integral part of treatment, as the recommendation for this has been incorporated into practice guidelines for professionals. Families are also making use of a new generation of books about mental illness—some written by professionals, and others written by, and for, family members. Families are also increasingly using the internet to learn more about mental disorders. The 2002 film, "A Beautiful Mind" was the story about Nobel-prize-winning mathematician John Nash, who suffered from schizophrenia. The film won an Oscar for best picture of the year. This reflects a changing attitude toward mental illness, which in the past was only discussed behind closed doors.
Family education for parents of children and adolescents
Because major mental illnesses tend to occur in adolescence or early adulthood, most family interventions focus on parents of adult children. However, any parent of a younger child with an emotional or behavioral disturbance can testify to the extraordinary challenges involved in coordinating care for their family member. For this reason, more public and private agencies are beginning to provide training, information, education, and financial assistance to family members of children and adolescents with emotional disturbances. The results of research about family education interventions for parents of children with serious emotional disturbances are just beginning to emerge. Some research suggests that family participation improves service delivery and patient outcomes for this group. In a randomized controlled trial of the training of 200 parents who did or did not receive training, while there were no significant effects on child mental health status, those family members who were trained showed significant knowledge enhancement and increased effectiveness.
Research conducted over the past decade has provided evidence that family education and support leads to improved patient outcome. For example, family psychoeducation provided by mental health professionals, has such a compelling research base that it is considered a practice based on the findings of real-life studies of family education and support.
Another type of therapy discussed in the scientific literature has been used in China and India. The "family consultation" model uses individualized, private consultations between the family and a trained consultant to assist the family on an as-needed basis.
Torrey, E. Fuller. Surviving Schizophrenia: A Manual for Families, Consumers and Providers. Fourth edition. New York: HarperCollins, 2001.
U.S. Department of Health and Human Services. Mental Health: A Report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services, 1999. Available at: <http://www.surgeongeneral.gov/library/mentalhealth/home.html> .
Dixon, Lisa, Curtis Adams, and Alicia Lucksted. "Update on Family Psychoeducation for Schizophrenia." Schizophrenia Bulletin 26, no. 1 (2000): 5-19.
Dixon, Lisa, William R. McFarlane, Harriet Lefley, Alicia Lucksted, Michael Cohen, Ian Falloon, Kim Mueser, David Miklowitz, Phyllis Solomon, and Diane Sondheimer. "Evidence-Based Practices for Services to Families of People with Psychiatric Disabilities." Psychiatric Services 52, no. 7 (July 2001): 903-910.
Weiden, Peter J., Patricia L. Scheifler, Joseph McEvoy, Allen Frances, and Ruth Ross. "Expert Consensus Treatment Guidelines for Schizophrenia: A Guide for Patients and Families." Journal of Clinical Psychiatry 60, supple 11 (1999): 1-8.
National Alliance for the Mentally Ill (NAMI). Colonial Place Three, 2107 Wilson Blvd., Suite 300 Arlington, VA 22201-3042. Telephone: (800) 950-NAMI (6264) or (703) 524-7600. Web site: <http://www.nami.org> .
National Family Caregivers Association. 10400 Connecticut Avenue, #500, Kensington, MD 20895-3944. Phone: (800) 896-3650 Fax: (301) 942-2302. Web site: <http://www.nfcacares.org/> .
National Mental Health Association (NMHA). 1021 Prince Street Alexandria, VA 22314-2971. Telephone: (800) 969-6642 or (703) 684-7722. Web site: <http://www.nmha.org> .
National Institute of Mental Health. "Schizophrenia." (cited April 7, 2002). <http://www.nimh.nih.gov/publicat/schizoph.htm> .
Irene S. Levine, Ph.D.