The Expressed Emotion Research
The results of the “expressed emotion” (EE) research, conducted in a number of countries in the developed and developing worlds, tell us that people with schizophrenia living with relatives (by birth or marriage) who are critical or over-involved (high EE) have a much higher relapse rate than those who live with relatives who are less critical or intrusive (low EE). High EE relatives, it emerges, carry a higher sense of burden from care-giving and have less well developed coping strategies. To conduct this research, the family member’s level of EE is measured by recording an interview with a family member in which he or she discusses the person with schizophrenia. A researcher then counts the number of remarks which indicate criticism, over-involvement, warmth or positive attributions. A meta-analysis of 26 EE studies of schizophrenia conducted in 11 different countries indicated that the relapse rate over a two-year follow-up period was more than twice as great, at 66 per cent, for patients in households which included a high EE relative than in low EE families (29 per cent). Other studies have shown that relatives who are low EE exert a positive therapeutic effect on the person with the illness, their presence leading to a reduction in the patient’s level of arousal. The more critical and over-involved relatives do not appear to be abnormal by everyday standards. In fact, it is more likely that families in which people with schizophrenia do well have adapted to having a person with illness in the household by becoming unusually accepting and low-key.
Behavioral Family Management
Multiple studies have shown that family psycho-educational interventions can lead to a change in the level of criticism and (to a more limited extent) over-involvement among relatives of people with schizophrenia and to a reduction in the relapse rate. The benefits of reducing household stress on the relapse rate in schizophrenia appear to be equally as strong as the effect of antipsychotic drug treatment. A person with schizophrenia who is taking antipsychotic medication and living in a high-EE household runs a roughly 50 per cent chance of relapse in the course of a year; if the household environment can be changed to a low-EE level, the relapse rate drops to 10 per cent or less. Effective interventions offer three basic ingredients: (a) detailed information about the illness for the patient and the family; (b) helping the family develop problem-solving mechanisms; and (c) practical and emotional support.
In a British study, for example, the family was given education, usually in the family home, on the diagnosis, causes, course, and management of schizophrenia. The family was also invited to join a relatives’ group in which high-EE relatives learned from low-EE family members how they coped with the day-to-day problems of living with someone with schizophrenia without becoming critical or over-involved. The family member with schizophrenia was not invited to attend the relatives’ group.
A US-based psycho-educational approach consisted of education about schizophrenia, communication training, a structured problem-solving method, and similar strategies. Families were taught about the use of medication, side effects, warning signals of impending relapse and the risks of street drug use. The communication training examined the expression of positive and negative feelings in the home, listening skills, and how to ask others to behave differently.
Another US researcher developed a multiple family group approach that aimed to provide support and education while reducing feelings of blame and creating avenues for changing family interaction patterns.
These family psycho-educational approaches have proven to be very effective in reducing the rate of relapse in schizophrenia. The approach, however, has not disseminated at all broadly in community psychiatric practice anywhere in the world. Only seven per cent or fewer of people with schizophrenia in the US, for example, are involved in a family intervention program. There are several explanations for this. In many parts of the US, few people with schizophrenia are living with their family members. Furthermore, organized attempts to disseminate the model to mental health managers and providers have been virtually nonexistent because, unlike pharmaceuticals, no-one stands to profit from marketing the approach, and those who would benefit most, organizations of families of people with mental illness, have, at times, considered any form of family intervention to be stigmatizing and have not lobbied for dissemination of the approach.
Most of the work cited above was published in the 1980s or 1990s; little development of the model has occurred in the past fifteen to twenty years. The advent of the internet, however, offers new possibilities for disseminating the approach. US researchers recently described a web-based psycho-educational intervention for people with schizophrenia and their families. Internet forums were created for this intervention for family members and for clients. Each forum was led and moderated by a trained therapist/moderator. A library of educational resources and responses to frequently asked questions was also provided online. A study of the approach revealed a large reduction in positive symptoms among the consumers and a growth in knowledge about schizophrenia in both patients and family members.
Colorado Recovery has developed a similar forum for family members of people with mental illness that is moderated by a cohort of trained mental health professionals, family members and people who have themselves experienced mental illness. On-line delivery of family psycho-education may have a promising future.
The Confidentiality Barrier
There is a simple approach which would have a big impact on the involvement of families in treatment – talk to them. Families often complain that, when their relative is admitted to a psychiatric hospital, they can’t get basic information about him or her when they call the staff. They are told that the information is confidential and protected by a federal statute. This is very frustrating for the family and an obstacle to good patient care. Hospital staff should have the common sense and common courtesy to ask each patient, upon admission, if he or she would be willing to sign a release of information form allowing them to communicate with specific family members. This could easily be included in admission procedures but is rarely done in US hospitals and clinics. Why is this so? Some might wonder if it represents the persistence of stigma surrounding mental illness that even mental health professionals themselves harbor.
US hospital administrators and their lawyers cite the introduction, in 1996, of the federal HIPAA Privacy Rule that threatens heavy fines for service providers who release confidential health-related information. This Privacy Rule is more balanced than the hospital personnel care to admit, however, as it permits the disclosure of health information that is needed for patient care and other important purposes. The existence of an emergency situation that overrides confidentiality requirements or of a release of information form signed by the patient can satisfy the needs of the family, service providers, hospital administrators and their lawyers.
Families need to know that, even without the existence of an emergency situation or a signed permission to release information, communication is still possible. They can always give information to the staff that is necessary for them to be able to treat their patient properly – information, for example, about the relative’s behavior prior to admission that the staff may not know about because he or she was too guarded to mention it. They can tell the staff about their particular concerns or what a wonderful person their relative was prior to being afflicted by illness. As a well-known American psychiatrist, Robert Liberman, puts it in a recent textbook:
“Too many practitioners pay obeisance to a misguided conception of privacy and confidentiality. There is no violation of confidentiality when a clinician solicits information from family members. Can anyone picture an internist or surgeon failing to invite a close family member to provide confirming and converging information regarding the patient as a key element in diagnosis and choice of treatment?”
What can family members do in this situation? Firstly, they should be assertive. They have a right to know what is happening with their relative. Secondly: they should ask the staff to ask their relative to sign a release of information allowing the staff to talk to them. Failing that, they can ask their relative directly to ask the staff to give him or her the same form to sign. If it doesn’t work on Day One, they can try again a few days later. Thirdly: they must be aware that there is no law that prevents them from giving information to anyone on the hospital staff. Fourthly: they should expect to be included in post-hospital discharge planning unless the patient specifically objects to the family being included.