An integrated approach

An integrated approach is only possible if we are able to accept that there is no single theory explaining the origin of schizophrenia. In the past, theorists of this disorder tended to align themselves with distinct camps, each of which claimed to possess the only truth about the condition. This polarisation has not entirely disappeared, but it is increasingly difficult to sustain as evidence accumulates in favour of the heterogeneity of the clinical syndromes we call schizophrenia. Every clinician knows the wide variation in the patterns of symptoms that each patient presents. The classical subtypes represented an attempt to impose a classification on this clinical diversity, but it failed: it proved impossible to use that system reliably (World Health Organization, 1973).

A therapeutic approach to schizophrenia that confined itself to biology alone or to environmental factors alone cannot encompass the complexity of the illness and will fail to give the patient the maximum possible benefit. The approach we have developed in our research unit rests on a conception of schizophrenia as a disease of the brain, which makes the sufferer excessively sensitive to his or her social environment. We recognise that the term “schizophrenia” covers a variety of conditions, in some of which biological factors predominate, while in others it is environmental influences that exert the dominant effect. This is why each patient must be assessed individually, according to the relative predominance of biological or environmental contributions to his or her illness.

Drug treatment

Drug treatment is the pillar on which our psychosocial treatment is built: we almost always use antipsychotic medication in the acute phase of the illness. The only exceptions are patients who have never received this kind of medication before and who are admitted for an assessment of their psychiatric state; if their symptoms remit about a week later, treatment is not started.

The decision as to whether the patient needs maintenance neuroleptic treatment is taken on the basis of a number of factors. It is known that in the West 25 % of patients presenting with a first schizophrenic breakdown will recover completely from the episode and remain well for at least two years (Sartorius et al., 1986), but it is not easy to distinguish these patients from those who are likely to relapse if they do not take medication. We do know, however, that living with relatives whose level of expressed emotion (EE) is high (see the box in the original article) constitutes a risk factor for all schizophrenic patients, including those in a first episode (Leff & Vaughn, 1985). Consequently, if the patient lives with relatives, we arrange for them to be given the Camberwell Family Interview (CFI) (Vaughn & Leff, 1976 a) and we rate their level of expressed emotion.

In our view, neuroleptics offer the patient a certain degree of protection against environmental stress (Leff et al., 1983).

The two main types of stress that have been measured in scientific studies are the expressed emotion of relatives and life events, which are respectively long-lasting and brief. Patients living in families with low expressed emotion receive valuable emotional support from their relatives, but they remain vulnerable to the impact of life events unless they continue their neuroleptic treatment. Medication gives partial protection to the patient living in a high expressed emotion home: it lowers the relapse rate, on a nine-month basis, from 90 to 50 % (Vaughn & Leff, 1976 b), but patients living in high expressed emotion homes who continue to take their medication remain vulnerable to life events. To give them better protection against relapse, it is necessary to alter the emotional atmosphere of the home. Before that, however, I would like to stress the importance of providing information about the nature of schizophrenia and about its drug treatment.

Any patient taking medication wants to know how long he or she will have to take it and why it is necessary. In the past, professionals were very reluctant to tell patients that they were suffering from an illness called schizophrenia. This was partly because the diagnosis was believed to carry a very poor prognosis; yet many studies have shown that this is not accurate, so that it can no longer be invoked as a reason for concealment.

I too felt this reluctance to give patients the diagnosis, but I have changed my attitude. It is very difficult to justify to the patient the need to take medication indefinitely without explaining the nature of schizophrenia and the protection against stress that medication provides. In the past, we gave all the necessary information to relatives and left them an information booklet, letting them decide whether or not to share its contents with the patient. I no longer believe in that possibility of choice, however. My change of attitude has been reinforced by the legislation which, in England, allows patients free access to their medical records. Since patients will inevitably learn their diagnosis, I consider that it then falls to the team to educate them about the nature of their illness. We have therefore written booklets for the general public setting out the classification of the commonest psychiatric illnesses, and the nurses regularly run education sessions to which all patients are invited. These have proved good for patients, and the nurses consider that compliance with treatment on the ward has improved since they were introduced. The education of relatives runs parallel to that of patients and is part of the work with the family.

Working with families

Selecting the families

We use the CFI to determine the level of expressed emotion of relatives when they share the patient’s home. All adult relatives are interviewed: these are usually the parents or the spouse and, less frequently, the siblings and the grown-up children of the patient. Help is offered to all those who live with the patient and whose level of expressed emotion is high. This does not mean that we think relatives with a low level of expressed emotion have no need of help, but, since our resources are limited, we have to target the families in greatest difficulty. It is not indispensable to be able to measure the expressed emotion of relatives. The clinical pointers that identify the families most in need are the following:

Educating families

We begin working with families by offering them an education programme of two sessions at home. Relatives are generally pleased with this, because professionals have made the effort to come to them and bring them something they value: information. The sessions begin while the patient is still in hospital receiving treatment; he or she is therefore not included in the family sessions at that stage. On the other hand, as described above, the patient receives a different form of education on the ward.

Relatives are taught about the causes, symptoms, course, treatment and management of schizophrenia. The information is read out from a booklet written in simple language, which is left with them so that they can read it at leisure. We begin by saying that there is no evidence to support the view that relatives cause schizophrenia; this helps to allay the anxiety about being held responsible by professionals for the patient’s illness. Some relatives have already experienced this and are, as a result, on their guard at the outset. We tell them that schizophrenia is a disease of the brain that makes the patient very sensitive to stress, and we emphasise the ways in which that stress can be reduced. We explain to them the nature of negative symptoms and their prolonged course over time, in contrast to positive symptoms. We stress the value of drug treatment and the need to continue it, even when the patient appears to be well. We tell relatives that one patient in four recovers completely and remains well for several years after a schizophrenic breakdown.

We allow relatives all the time they need to ask questions, recognising that the information we give them is not easy to absorb. Assessment of knowledge before and after the education sessions has shown that they learn the name of the illness and become more optimistic (Berkowitz et al., 1984; 1990). There are few other changes. In fact, education continues in a less formal way throughout our contact with the families. They tend to ask the same questions over and over again, until they are ready to accept the answers we offer them.

Improving communication

After the education programme, we include the patient in the home sessions, which take place every two weeks for an hour during the first months. They are then spaced out to once a month and may continue for two years. We prefer to work as co-therapists, for several reasons. If one of the therapists is drawn into an emotional whirlpool within the family, the other can observe the situation and re-establish control. The two therapists can form alliances with different family members and thus ensure that there is no imbalance of power. They can also model good communication and the resolution of differences through calm conversation.

Not all families show disturbed communication, but in some of them the members interrupt one another, two people may talk at the same time and one person may dominate the conversation to the exclusion of the others, particularly the patient. We lay down apparently elementary rules: only one person speaks at a time, everyone must have the same opportunity to speak and communication must be addressed directly to the person concerned — for example, members cannot talk about a person who is present as though he or she were not there. This happens frequently with the patient, who is spoken of as “he” or “she”. It is extremely easy for therapists to slip into this habit and thereby reinforce the patient’s feeling of being disqualified as a person.

These rules are not simple to establish and therapists have to remind families of them tactfully but persistently. It may take months for them to be regularly observed, but they are of considerable value if they lower high levels of emotion, if they give each member similar importance and if they help members to listen to one another. This is an art that is generally lost in families with a high level of expressed emotion and that has to be relearned with the therapists’ help. Once family members begin to listen to one another, they are more receptive to the therapists’ comments.

Teaching problem-solving

Every family with a schizophrenic member regularly encounters problems.

Consequently, when the therapists ask high expressed emotion families which problems they would like help with, they find themselves swamped by a multiplicity of difficult topics. The first step is to help the family focus on one problem at a time. It is asked to choose the problem it wants to tackle first. This may in itself give rise to disagreements that the therapists have to help the family resolve.

Once the problem has been chosen, the therapists ask each family member for his or her view of it. Particular attention is given to the patient’s experience of the problem, since the family is likely to have ignored that perspective in the past.

This also gives the therapists the opportunity to place the patient in the position of expert on the problem since, after all, no one else in the family can testify to what it is like to have schizophrenia. The problem is then broken down into small steps and family members are asked to suggest different possible ways of tackling one thing at a time. They are guided by the therapists towards choosing a low expressed emotion solution: for example, buying the patient an alarm clock rather than dragging him or her out of bed. They then have to agree on when and how they will try that solution before the next interview with the therapists. The attempt is treated as an experiment, so that if it fails the family will not feel responsible for the failure. The therapists stress that they will ask for a report of what happened when they next come. If the family has not tried the agreed solution, or has tried it without success, the therapists go over in detail what took place, in order to help it then design another, less ambitious experiment.

Tackling expressed emotion

Critical comments

Most critical comments are directed at the negative symptoms of schizophrenia, relatives considering that the patient is deliberately lazy or selfish. This is why we take care to explain, in the education programme, that negative symptoms are an integral part of the illness. We also deal with them in problem-solving, since many of the everyday problems are generated by the patient’s apathy and inertia. We also reframe the critical comments made during the sessions, thereby highlighting the positive aspect of the relatives’ attitudes. Most of the time, if they are critical it is because they care about the patient’s well-being and want him or her to get better.

In homes where relatives are highly critical, there is usually a conflict between the patient and his or her relatives, or between the parents when both live with the patient. Therapists have to take firm control of a conflictual situation and prevent quarrels from escalating. They must therefore block every beginning of a quarrel and persuade family members to discuss their differences calmly. In this process, the therapists must convey to the antagonistic members that each of them is being supported and that his or her point of view is valued. Managing these situations is made easier by the presence of two therapists.

Emotional over-involvement

Emotional over-involvement is generally much older than critical comments; it sometimes originates in childhood, in response to developmental delay or other significant abnormalities. It usually takes one or two years of work for the patient to achieve some separation from an over-involved relative. It is important to recognise that these relationships are symmetrical: the patient mirrors the relative’s anxiety and the relative mirrors the patient’s dependence. Working with both of them means exploring their anxieties and persuading them to try short trial separations. It may be useful to seek to get the parent to agree, as a first step, to leave the patient alone at home for half an hour, in order to test whether some of his or her worries are realistic. At the same time, it is necessary to build the patient’s confidence in being left alone and in beginning to do things for himself or herself.

One of the therapist’s main tasks is to realign the relationships within the family. Besides separating the over-involved relative (almost always one of the parents) from the patient, it is important to strengthen the marital relationship between the parents (if both are present) and to mobilise any healthy sibling in the family to encourage the patient to establish relationships with peers. At this stage, the therapists will hold separate sessions with different parts of the family. They can thus see both parents without the children and concentrate better on their relationship. It may be necessary to give the parents permission to delegate some of their responsibilities towards the children and to go out together to enjoy a well-earned rest. By seeing the patient and the siblings separately from the parents, they implicitly reinforce the intergenerational boundaries.

Although the ultimate aim is for the patient to gain more and more independence, this does not necessarily mean leaving home. In fact, according to our studies, very few patients have set up their own home, separate from that of their parents.

Reducing contact

In the initial studies on expressed emotion and the course of schizophrenia, we found that patients who had little contact with high expressed emotion relatives had a lower relapse rate than patients who had a great deal of it (Brown et al., 1972; Vaughn & Leff, 1976 b). Reducing social contact has always been one of the aims of our interventions with high expressed emotion families: we warn relatives and patients that the latter need time for themselves, particularly when the atmosphere becomes tense. We suggest to patients who have not yet mentioned it that they can avoid painful confrontations by anticipating them and going out for a walk or withdrawing to their room. We likewise advise relatives not to follow the patient if he or she adopts this strategy.

In the long term, if the patient has no occupation, we help him or her to arrange admission to a day centre or a day hospital. This of course serves the primary aim of improving the patient’s working capacity and social skills, but it also fulfils the function of separating patients and their relatives for part of the day. If relatives are unemployed or retired, we encourage them to find leisure activities that take them out of the house. If the patient is willing to leave the parental home for independent or sheltered accommodation, contact decreases considerably but, as we said above, this is often difficult to achieve.

Enlarging social networks

If the patient and the relatives have no social networks outside the home, they are inevitably forced to spend most of their time face to face and find no relief at home from the emotional tension. At the beginning of the illness, families have social networks of normal size, but as the illness progresses these shrink. The reason lies partly in the shame and distress at the patient’s behaviour and at having a mentally ill person in the family: relatives often stop seeing their friends and family and no longer invite them home. We encourage relatives to start going out again and to redevelop their social life. This may meet with resistance when relatives do not feel ready to expose their problems to other people, for fear that these may lack empathy, or worse. This problem can usually be overcome by inviting family members to a relatives’ group. We run a relatives’ group in parallel with the family sessions; it meets once a fortnight, lasts an hour and a half and has no fixed end. Twelve families can be assigned to the same group because, usually, only half of them come to the meeting. Once relatives have been persuaded to attend, they discover that other people are facing similar problems, or worse. This eases their feelings of guilt, shame and isolation.

Group members often develop social relationships with one another and, in this way, the group can act as a stepping stone for the return to society.

We also advise the patient to develop social contacts outside the home, but this may be difficult if he or she restricted his or her social life before falling ill, which resulted in the acquisition of limited social skills. If that is the case, the therapists consider a referral to a professional competent to provide training in such skills. A healthy brother or sister can sometimes help by introducing the patient into a group, although not all siblings are willing to play that role. The collaboration of voluntary groups can also be obtained: social clubs, parishes or self-help services.

Adjusting expectations

Relatives often expect the patient to be cured on returning home from hospital, particularly if it is the first admission. We explain to them that, while positive symptoms are controlled by medication in the great majority of patients, negative symptoms take one to two years to improve. We advise them not to demand too much of the patient during this period of convalescence, to be satisfied with small advances and to reward the patient by acknowledging them. Middle-class parents often find it difficult to modify their aspirations for the patient. They hope that he will resume his university studies or that he will go on progressing in his career. We tell them that these goals are appropriate in the long term, but that the immediate objectives must be far more limited: helping the patient to get up in the morning, for example. Unfortunately, few patients with schizophrenia will be able to meet their earlier expectations. Parents therefore need the opportunity to “mourn” their lost wishes and aspirations. They can be helped in this in sessions with the therapists that do not include the patient. Similarly, the relatives’ group is an appropriate setting for working through this mourning, in so far as most of its members have faced similar losses.

Conclusion

People who suffer from schizophrenia have a wide and varied range of needs: they need maximum control of their symptoms with minimum discomfort, a roof over their heads, financial support, the emotional support of their family and friends, and a satisfying occupation that increases their self-esteem and personal development. The sad reality, however, is that psychiatric services are not organised to meet all these needs, and that patients and their relatives are not in a strong position to demand satisfaction from the services or to find their way through the procedures required to mobilise help. In our view, it is essential that the therapist take on the role of organising and administering the services intended for schizophrenic patients. To fulfil this role adequately, the therapist has to adopt an eclectic view of schizophrenia and of the many difficulties it entails. Only then will a truly integrated service be able to be created.