COPING WITH PSYCHOTIC ILLNESS

COPING WITH PSYCHOTIC ILLNESS

1 INTRODUCTION

The problems associated with psychotic disorder are experienced by most people as a considerable challenge. The experience of psychotic disorder appears to be one in which individuals may be continually searching for the least harmful balance between, on the one hand, seeking to maintain self-esteem and keep up valued goals and roles and, on the other hand, adjusting to the perceived demands of psychotic experiences, and the adverse social predicament of a person with chronic mental illness (Estroff, 1989). In this chapter we aim to highlight some of the important psychological processes that may be involved in coping with psychotic illness. We will conclude by discussing the implications for improved psychological therapy for people with psychosis.

2 THREE TYPES OF PSYCHOLOGICAL REACTION TO PSYCHOTIC ILLNESS

We will start our analysis of coping with psychotic illness by providing brief illustrations of some of the different types of psychological reactions to psychotic illness that may be encountered in clinical practice. We will isolate three main patterns: denial and lack of awareness of psychosis; resignation or engulfment into the social role of a chronic mental patient; and acceptance of psychotic illness.

2.1 Denial and Lack of Awareness of Psychosis

Many people with psychosis do not agree with the views of their problems held by health professionals. In the extreme some people may not recognise problems, painfully obvious to others, associated with strange experiences, bizarre beliefs or dangerous or irresponsible actions. Such individuals may become a danger to themselves and to others, and highly disorganised (e.g. they may fail to eat regularly or maintain self-care). Often

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people who lack awareness of the presence of psychotic illness may have strongly held delusional beliefs which are at odds with a biomedical perspective. Typically such people may be described as having loss of insight; however, it should be noted that loss of insight is itself a highly complex construct and contains a number of dimensions (see Greenfield et al, 1989; David, 1990; Markova and Berrios, 1992). Denial and lack of awareness of psychotic illness are features of the pattern of reaction which often causes most concern to mental health professionals. The client may refuse to cooperate with actions regarded by professionals as necessary to manage psychotic disorder (e.g. taking medication, recognition of the need for hospitalisation, attending day care).

2.2 Resignation or Engulfment into the Social Role of a Chronic Mental Patient

Resignation or engulfment into the social role of the chronic mental patient may be associated with acceptance of psychotic illness and cooperation with the advice of health professionals. However, people who adopt this reaction may often be viewed by others as having become engulfed into a sick role (or institutionalised), and submerged into the personal identity of a person with severe mental illness with its adverse effects on self-esteem. Such individuals may express the wish to remain under the care of services, and report fears about taking on any independent personal responsibilities. They may be viewed by professionals as overdependent, and may present with other clinical problems, such as depression, demoralisation or even suicidal ideas.

2.3 Acceptance of Psychotic Illness

Other people with psychosis may find a middle road, which to most professionals appears to be associated with the best outcome. This pattern of reaction may involve an ability to adopt a sick role when necessary. This may involve making adjustments to lifestyle and behaviour, taking medication, and using the services of health professionals, while otherwise seeking to maximise independence and maintain a personal identity separate from that of a person with chronic mental illness. Autobiographical and anecdotal accounts suggest that this last strategic approach to adaptation to psychotic illness is often only achieved after a long and bitter Struggle with a range of problems which may be associated with psychotic Symptoms, the social adversity associated with chronic mental illness, and the Health Service system (Wing, 1975; 1987).

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It is important to note that the patterns of reaction described above are only illustrations. In reality the pattern of reaction is often more confused. Within an individual there can often be any combination of the above. Furthermore, such patterns of reaction are rarely stable and are liable to change over time. A single individual may then present at different times over the course of their illness with any of the above patterns, often cycling between denial, acceptance and resignation.

3 PSYCHOLOGICAL PROCESSES AFFECTING ADAPTATION TO PSYCHOTIC ILLNESS

In the following we will highlight some of the important psychological processes which may lead to different patterns of reaction to the experience of psychotic illness, focusing particularly on studies which provide information about the relationship between appraisal and coping behaviour and clinical outcome. Most research on appraisal and coping with psychotic disorder involves descriptive studies and correlational designs. It is therefore often difficult to identify any clear links between specific patterns of appraisal and coping strategies, and reductions in distress or disability. Where associations between appraisals, coping strategies and outcome have been found, methodological problems often make it difficult to rule out alternative explanations for results (for example, the degree of severity of any hypothetical biological vulnerability to psychosis is always a potentially confounding variable in such studies). Despite these difficulties in interpretation, a number of interesting and sometimes counterintuitive findings have emerged.

4 LABELLING, SELF-APPRAISAL AND CLINICAL OUTCOME

The radical social labelling theories that became prominent in the 1960s have been an important influence on professional and lay attitudes towards diagnostic labelling. Such theories suggested that there may be direct causal links between patients receiving a diagnosis of chronic psychotic disorder, and subsequent engulfment into the stigmatised and deprived social role of a mental patient. The antipsychiatry movement laudably highlighted the fact that mental illness is a social construction, and that the giving and receiving of psychiatric diagnoses are not solely objective identifications of signs and symptoms. The giving and receiving of psychiatric diagnoses are social processes dominated by political issues such as social position and status. However, antipsychiatrists and social

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labelling theorists can be criticised for disregarding the possibility that illness metaphors can often be empathic and clinically beneficial ways of understanding the adverse life predicaments of people in severe psychological distress (Sedgewick, 1982; Leff, 1993).

Early studies attempting to examine the relationship between acceptance of a label of schizophrenia and clinical outcome were inconclusive and dogged by methodological inadequacies (see Estroff, 1989; Markova and Berrios, 1992 for reviews). However, more recent studies have suggested that, contrary to the predictions of social labelling theories, acceptance of a label of mental illness, or agreement with a clinicians diagnosis, is not necessarily and inevitably associated with social decline. Instead it appears that acceptance of a label of mental illness, and associated factors such as agreement with the clinicians diagnosis and awareness of symptoms, often tend to be associated with better rather than worse outcome (Lin, Spiga and Fortsch, 1979; McEvoy, Aland and Wilson, 1981; Heinrichs, Cohen and Carpenter, 1985; McEvoy et al, 1989; Warner et al, 1989).

It may be most useful to view acceptance of the label of psychotic disorder and the persons view about themselves as independent dimensions of appraisal which have differing relationships with social and clinical outcome. This apparently contradictory position may be most easily understood in the context of some illustrative case examples. For example, if a person resigns themselves to the adverse social predicament of the role of a chronic mental patient and allows their personal identity to become submerged in this role, then an association between poor social outcome and acceptance of psychotic disorder may be expected. On the other hand, if a person accepts a diagnosis of psychotic disorder, and then uses an understanding of psychotic illness to make sense of their personal predicament, and as a guide to taking actions to control their problems, then such an individual may be able to keep a strong sense of personal identity despite acceptance of illness. In such cases a relationship between acceptance of illness and positive outcome makes sense. The idea that acceptance of a label of psychotic illness and views about personal identity are independent dimensions of appraisal has been supported by empirical studies (Taylor and Perkins, 1991; Birchwood et al, 1993).

The recovery process may involve the ability to distance oneself from psychotic disorder, so as to retain a sense of control despite the presence of enduring disability (Lally, 1989; Davidson and Strauss, 1992; Birchwood et al, 1993). Explicitly encouraging people with psychosis to separate their View of self from their views about the nature of psychotic experiences may then be a critical factor in attempting to promote recovery amongst people with psychosis (e.g. Estroff, 1989; Birchwood et al, 1993). This new approach

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to the relationship between labelling, the personal identity of people with psychosis and the outcome of psychotic disorder has important implications for the practice of psychotherapy. It provides a clear theoretical basis for the use of techniques which involve explicit discussions about the nature of psychotic disorder and the meaning of diagnostic terms. Encouraging people with psychosis explicitly to label certain aspects of their predicament as psychotic illness may be clinically beneficial. The aim may be to lead the person to a reconstruction of their predicament which decreases self-blame (attributes blame to illness rather than to personal failure) and which also provides a clear rationale for the use of a variety of self-regulatory strategies to overcome, or control, their predicament.

It may be most useful to think of the processes involved in therapeutic discussions about the nature of psychotic illness as broadly similar to those involved in the practice of cognitive behaviour therapy for depression (e.g. Beck et al, 1979; Williams, 1992). Information about psychotic disorder may be best provided in a highly individualised manner, the aim being to assist the person to develop a rationale for their experiences which is associated with feelings of control and hope for the future. Within such an approach it may not always be necessary to insist that the client fully agrees with a professional view of the nature of psychotic disorder (which in the past may have been described as insight). When necessary, cognitive behaviour therapists may work within the structure of a patients delusional beliefs to promote a model of psychotic experiences which implies control, hope for the future and adaptive behaviour.

5 ATTITUDES TO THE FUTURE

Studies which have examined the association between a patients attitudes to psychotic illness and clinical outcome, have tended to find that only attitudes to the future, or outcome expectancies, have any consistent association with outcome (Soskis and Bowers, 1969; McGlashan, Levy and Carpenter, 1975; McGlashan and Carpenter, 1981; Birchwood et al, 1993). Neither wholly negative nor wholly positive expectations about the future tend to be associated with better clinical outcomes. These relationships make clinical sense as extremely negative attitudes toward the future are probably closely associated with loss of hope and thereby demoralisation, depression or amotivation, whereas extremely positive views about the future are probably closely associated with grandiose delusional ideas and the flight to health identified as a precursor of relapse. Both of these patterns are therefore inconsistent with recovery. The conclusion may be drawn that realistic, but not overly pessimistic, appraisals about the future are those most likely to promote a better clinical outcome (as has been long

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suggested by rehabilitation practitioners). Working collaboratively with the patient to identify some realistic goals which provide hope for the future is then likely to be an important aspect of any effective psychological therapy for people with psychosis.

6 ADAPTIVE AND DYSFUNCTIONAL COPING STRATEGIES

A series of studies have examined the way in which patients use a variety of cognitive and behavioural coping strategies to self-regulate psychotic experiences (e.g. Falloon and Talbot, 1981; Breier and Strauss, 1983; Boker and Brenner, 1984; Cohen and Berk, 1985; Brenner et al, 1987; Tarrier, 1987; Can, 1988; Thurm and Galle, 1988; Wiedl and Schottner, 1991). The findings of these studies have repeatedly highlighted the diverse ways in which patients naturally strive to self-regulate psychotic experience (e.g. by the use of different types of behavioural strategies such as listening to music, talking to others, self-talk, etc). However, as yet no clear relationship between the use of any particular set of behavioural coping strategies and positive outcome has been established (the best evidence is for reliable use of neuroleptic medication). It is still unclear which is most effective: the use of any particular set of behavioural coping strategies, or the changes in interpretation of symptom experience and the increased feelings of control which may accompany the use of such strategies. Training and practice in the use of coping strategies do, however, appear to have a useful role within the general armamentarium of strategies available to cognitive behaviour therapists. Guidelines for the use of such strategies are described in Chapter 11.

Teasing out what is coping, and what is to be coped with, among the reactions of people with psychosis may be more complex than is implied by any simple analysis of the behavioural coping strategies used by patients to manage psychotic experiences. For example, Boker, Brenner and Wurgler (1989) examined the coping strategies used by a sample of patients, and found that a relatively common strategy was wish-fulfilling fantasy. While this type of strategy may have benefits for self-esteem maintenance, it may increase rather than decrease the likelihood of the formation of grandiose delusions (see Neale, 1988). A further illustration of Possible non-beneficial coping strategies comes from a study by Schneider and Sins (1987) on drug preferences amongst people with psychosis. They noted that many people with psychosis appeared to take medications that Were likely to increase rather than decrease the incidence of psychotic experience One interpretation of these findings is that patients may be actively seeking the experience of psychosis. This somewhat surprising

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analysis makes sense if the patients believed that psychotic experience was laden with special significance and gave meaning to their lives. Sophisticated analyses of appraisal and coping with the subjective experiences of psychosis may have to take account of differing types of coping behaviours, some of which may be beneficial, while others may be dysfunctional. It cannot simply be assumed that all patients who hear voices or hold delusional beliefs view these as distressing symptoms to be coped with.

7 LIFESTYLE CHANGES AS COPING STRATEGIES

Strauss and his colleagues have attempted to describe the qualitative changes in lifestyle patterns associated with the psychological reaction to psychotic illness (Rakfeldt and Strauss, 1989; Strauss, 1989; Davidson and Strauss, 1992). They suggest that people with psychosis may adopt long-term lifestyle changes in their attempts to adapt strategically to the threats imposed by psychotic disorder. They have identified three lifestyle patterns, one of which may be observable as a behavioural pattern consisting of plateauing at a relatively low level of functioning, often for quite long periods, followed by a resurgence in activity. Strauss and colleagues (1989) interpreted such behavioural patterns as a deliberate strategy of wood-shedding. While woodshedding the person may be giving themselves space to learn to recover from the demands of psychotic disorder, and may be attempting to regain abilities to function. Such behavioural patterns, which may be viewed by outsiders as withdrawal, may be interpreted instead as the consequence of a lifestyle deliberately adopted by people who are seeking to titrate their use of limited abilities. Patterns of oscillations in social functioning in which people with psychosis may appear to function for some weeks relatively normally, but in other weeks may become very withdrawn, may also be associated with deliberate choices made by the individual in an effort to manage their disorder. Recently, Davidson and Strauss (1992) have emphasised the importance of the opportunity for meaningful work and social roles in helping people to regain a sense of control over their lives. They argue that engagement in meaningful activity can often provide a context within which a person can rediscover a sense of personal identity and a sense of control after the disorganisation which may be associated with psychotic states. An example given is of a person who rediscovered the ability to play drums in a band; this key activity led to the individual discovering a sense of control, which then appeared to spread to other areas of his life.

A study by Corin and Lauzon (1992) has also emphasised the importance of the lifestyles of people with psychosis from the perspective of deliberate choice by the patients. This study was prompted by the observation that

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the lifestyle patterns of people who were not rehospitalised were often characterised by a withdrawn position outside normal society. On the basis of detailed structured interviews with individuals who had adopted such lifestyles, Corin and Lauzon (1992) suggested that this social position corresponded to an attitude of detachment which was deliberately adopted by non-rehospitalised people with psychosis, rather than a lifestyle imposed by perceived exclusion or stigmatisation. Although such individuals had lifestyles characterised by low levels of social contacts, this appeared to be a deliberately adopted stance towards the world, which included positive attributions for such patterns of withdrawal. The study provides an interesting confirmation of the earlier suggestion by Wing (1975) that strategic, but not general, social withdrawal was one of the most important strategies open to a person with chronic schizophrenia.

These studies highlight the need for therapists to take careful account of the persons subjective account of their experience before attempting to suggest changes in behaviour or lifestyle patterns. They also imply the need for a style of therapeutic approach which stands in contrast to some of the more didactic behavioural approaches to therapy that have often been associated with psychiatric rehabilitation. Instead of focusing only on activity, the starting point for psychological therapy should perhaps be a careful assessment of what patients report about their subjective experiences and the problems facing them. Research studies suggest that such reports are likely to be reliable and consistent accounts, even when taken from severely handicapped individuals (MacCarthy, Benson and Brewin, 1986). Formulations of the problems of people with psychosis based on these accounts may therefore provide a useful basis for psychological interventions. Psychological therapies for people with psychosis may perhaps be more effective if they work collaboratively with patients to develop more adaptive strategies of self-regulation, rather than if they didactically impose a framework that may be at odds with the patients perspective.

8 MOVING BEYOND THE COPING WITH CHRONIC ILLNESS RATIONALE

Practitioners of psychiatric rehabilitation have typically based their practice on analogies between the predicament of people with psychosis and that of people with other types of long-term social disability (e.g. people with severe and chronic physical illness). The aim of assisting the patient to maximise functioning while recognising the limits set by disabilities is central to the idea of psychiatric rehabilitation practice Bennett, 1980), which often suggests that it may be beneficial explicitly to acknowledge

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that people with chronic psychotic illness have a life predicament similar to that associated with chronic physical illness. Acceptance of what may be chronic disability is then the starting point for the development of a number of different types of therapeutic approaches which may focus on helping the patient understand and manage their disabilities and the adverse social predicament associated with them. Often rehabilitative goals (which focus on making gains while recognising the presence of continuing disability) rather than treatment goals (which aim to remove the problems entirely) are recommended.

There has emerged a broad consensus on the need for a pragmatic and supportive approach to therapy for people with psychosis among therapists who have adopted what may be described as a coping with chronic illness rationale (Wing, 1975; 1987; Anthony, 1979; Roberts, 1984; Liberman et al, 1994). There is agreement about the need for an empathic and non-blaming alliance; the need for a pragmatic approach to managing delusional beliefs and bizarre experiences; and the need for a practical focus on overcoming specific problems and managing current practical difficulties. More recently additional techniques have been incorporated within this framework. These strategies include psychoeducation about schizophrenia and its management, the identification of prodromal signs of relapse, the targeting of drug interventions, and structured training to manage maladaptive social interaction and to overcome stigmatisation and increase social networks (Birchwood and Tarrier, 1992). Many of these existing practical strategies are incorporated within the cognitive behaviour therapeutic approach described in this book. However, in the following we will review four main problems that highlight the need to extend the scope of current mainstream psychological therapies for people with psychosis.

8.1 The Need for a Collaborative and Empathic Approach to Therapy

We believe that psychological therapies for people with psychosis need to be collaborative and empathic rather than solely didactic. As we have noted above, sometimes didactic approaches can be countertherapeutic or noxious. For example, Strauss (1989) has noted problems with what may be genuine attempts at helpful psychoeducational teaching by professionals (e.g. a therapist saying You have an illness like diabetes, you will have it all your life, youll need to take medication and there are certain things youll never be able to do). First, such didactic messages may not be accepted by people who are trying to maintain a sense of self-esteem; second, even if accepted they may be countertherapeutic, since such messages can lead

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people to attitudes of giving up or resignation and thus engulfment into the role of a chronic mental patient. Strauss (1989) noted that a more adaptive acceptance and awareness of psychotic illness may involve acceptance of a general model of psychotic illness and its life predicament, which includes hope for a better life and a resolve to work to fight for it.

We believe that fostering a beneficial acceptance of psychotic illness requires the conveying of quite complex messages, which are better delivered by a sensitive psychotherapeutic or counselling approach. Cognitive behaviour therapy aims to promote awareness and acceptance of psychotic illness. However, this approach works primarily from the patients perspective, encouraging them to do what is possible, and wherever feasible holding out realistic hope for the future. Information about illness is provided, but with care to put it in a context that does not lead to demoralisation. For example, although it may be implied that psychotic illness is likely to be a long-term threat, it may also be noted that problems associated with the illness are likely to be episodic or fluctuating, and that, with help, people could learn to manage problems and symptoms when they occurred. Conveying destigmatising and normalising messages about the experience of psychosis is an important aspect of cognitive behaviour therapy for psychosis (see also Kingdon and Turkington, 1994).

8.2 The Need to Work from the Patients Perspective, even if this is Delusional

The problems of didactic approaches to therapy become most obvious when working with people who hold delusional beliefs with strong conviction. Typically such people will strongly resist suggestions that they have an illness, and that they need to monitor symptoms and take medication. The analogy between people with psychosis and people with physical illnesses may not be appropriate in such cases. People with delusions typically think quite differently about their problems from people with chronic physical illnesses. It is not simply that they deny that they have an illness, and suggest that nothing is wrong with them (although psychological defences and denial can be an aspect of the complex processes involved). People with delusions have strongly held beliefs about the nature of their difficulties. When asked what they think the nature of their Problems may be, they are likely to reply that there is a conspiracy going on, or that they have special powers. Often these beliefs are well thought Out, and have developed over many years. Such beliefs are unlikely to be replaced simply by offering a short-term didactic presentation of psychoeducational material about schizophrenia (Smith, Birchwood and Haddrell, 1992). Indeed, forceful attempts to offer alternatives or confront people

people With severe and chronic physical illness). The aim of assisting the patient to maximise functioning while recognising the limits set by disabilities is Central to the idea of psychiatric rehabilitation practice (Bennett, 1980), Which often suggests that it may be beneficial explicitly to acknowledge

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with an illness model may lead to drop-out. We suggest that these problems may be eased if the therapist starts by listening carefully to the patients perspective on their problems. Only at a later stage, once the relationship is firmly established, may alternative interpretations be suggested, and this only in the context of a collaborative rather than a didactic relationship. Such collaborative work is at the core of cognitive behaviour therapy of delusions.

8.3 The Need for Better Understanding about the Nature of Psychotic Experiences and Beliefs

Much existing psychoeducational material about psychotic illness tends to imply that hallucinations and delusions are simply and directly symptoms of a biological disease. Unfortunately, such formulations only rarely fit the experience of patients. From the patients perspective the experiences associated with psychosis have a special quality and are often imbued with a strange feeling of personal significance; they are thus quite different from other types of illness phenomena (e.g. colds, flu, pain) and do not indicate to the person that they are physically or even mentally unwell. Instead they often indicate to patients that the world has changed and not themselves. Clearly we need to base psychological interventions on formulations that provide a better account of the formation and maintenance of the complex beliefs, thoughts and feelings which make up the subjective experiences of people with psychosis.

9 CONCLUDING REMARKS

In this chapter we have provided a brief review of research on how people cope with psychotic illness, in which we have highlighted some of the strengths and limitations of existing psychological interventions for people with psychosis. We have noted that we believe the basic assumptions of what may be viewed as a coping with chronic illness model may provide a useful basis for cognitive behavioural interventions, but only if used to promote understanding and awareness of psychotic illness in a way that promotes hope for a better future, and feelings of control over the persons life predicament. We have also suggested that cognitive behaviour therapy needs to be based firmly in the context of a supportive psychotherapeutic approach that works collaboratively with the patient, and starts from a careful analysis of the patients perspective on their problems. However, we also noted that for people who have strongly held delusional beliefs the existing coping with psychotic illness frameworks are probably

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inadequate. Many people with psychosis reject the idea that psychotic symptoms are relatively discrete and discontinuous entities that derive from the disease. We have therefore argued that therapists require more sophisticated formulations about the nature of psychotic symptoms. In the next chapter we will discuss the ways in which cognitive theories of psychotic symptoms may provide a better basis for clinical understanding of the experiences and beliefs of people with psychosis.