Role Of Illness Models

Clinical Psychology Review 23 (2003) 171 – 196

Review article

A review of the role of illness models in severe mental illness Fiona Lobban*, Christine Barrowclough, Steve Jones University of Manchester, Manchester, UK Received 5 October 2001; received in revised form 19 September 2002; accepted 30 September 2002

Abstract The ways in which people think about illness experiences have been associated with a variety of important behaviours and emotional responses in patients, carers, and professionals. Some of these responses have been shown to be related to outcome. Explicit models such as the self-regulation model (SRM) [Leventhal, H., Nerenz, D. R., & Steele, D. F. (1984). Illness representations and coping with health threats. In A. Baum & J. Singer (Eds.), A handbook of psychology and health. Hillsdale, NJ: Erlbaum, 219 – 252.] have been shown to be useful in highlighting key beliefs across a wide range of different physical illnesses. The specific beliefs about mental illness that have been assessed have been varied and largely without a common theoretical framework. This has resulted in a literature from which it is difficult to draw firm conclusions. The central aim of this paper is to assess the applicability of the SRM to mental illness. To this end, we review studies to date that have examined the beliefs that people with a mental illness have about their experiences. In addition, we review studies that have examined the beliefs of relatives of people with a mental illness and professionals who work with this population. We assess to what extent these studies are consistent with the SRM before suggesting ways in which the model could be further developed and tested. The SRM is presented as a useful framework for more advanced investigations into the function of beliefs about mental illness and how these can be modified in order to effect outcome. Developing psychological theories common to both

* Corresponding author. Academic Division of Clinical Psychology, School of Psychiatry and Behavioural Sciences, 2nd Floor Education and Research Centre, Wythenshawe Hospital, Manchester M23 9LT, UK. Tel.: +44-161-2915319. E-mail address: [email protected] (F. Lobban). 0272-7358/03/$ – see front matter D 2003 Elsevier Science Ltd. All rights reserved. PII: S 0 2 7 2 - 7 3 5 8 ( 0 2 ) 0 0 2 3 0 - 1

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physical and mental health may eventually result in an integrated approach in which mental illness becomes less stigmatised within the treatment setting. D 2003 Elsevier Science Ltd. All rights reserved. Keywords: Schizophrenia; Mental health; Illness models; Self-regulation model

1. Introduction There is nothing either good or bad, but thinking makes it so. (Shakespeare, Hamlet, Act 2 Scene 2) The way in which people think about events is important in determining their emotional and behavioural responses. This is true for a wide range of events, including health problems. The relationships between beliefs about illness and emotional and behavioural responses have been extensively explored in both physical and mental illness, but largely from different perspectives. In trying to understand variation in physical health- and illness-related behaviours, psychologists have focused primarily on social cognition models. These models attempt to identify the key cognitions that mediate between extrinsic factors that have been associated with health behaviours, such as demographics and social factors, and individual behaviours. The models that have been most widely applied include the health belief model (Becker, 1974; Becker & Maimon, 1983; Janz & Becker, 1984), health locus of control (Seeman & Seeman, 1983; Wallston, Wallston, & DeVellis, 1978), protection motivation theory (Maddux & Rogers, 1983; van der Velde & van der Pligt, 1991), theory of reasoned action/planned behaviour (Ajzen, 1988, 1991; Ajzen & Fishbein, 1980), self-efficacy theory (Bandura, 1982, 1991; Schwarzer, 1992), the transtheoretical model of change (Prochaska & DiClemente, 1984; Prochaska, DiClemente, & Norcross, 1992), and self-regulation theory (Leventhal, Nerenz, & Steele, 1984). All of these models assume that individuals are rational beings whose health-related behaviour depends upon their understanding of relevant information. They have all been widely applied to a range of physical illnesses and overall have been able to account for a significant amount of variance in illness-related behaviours, making the key cognitions in each model an important target for intervention (Connor & Norman, 1995). In trying to understand variation in health- and illness-related behaviours in severe mental illness, there have been very few attempts to draw on any of the developments made by the physical illness models. In mental illness, the study of beliefs has generally been focussed on people’s interpretations of internal and external experiences and how these interpretations contribute to the development and maintenance of psychotic symptoms. Examples of this area include studies of: (1) beliefs about intrusive thoughts, which may predispose them to be experienced as auditory hallucinations (Morrison, 1998); (2) information processing bias such as jumping to conclusions that result in persecutory interpretations of innocuous events (Garety & Hemsley, 1994); and (3) tendency to make external and personal attributions for negative

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events (Kinderman & Bentall, 1997). There has been less exploration of other potentially important beliefs, highlighted in the physical health literature, such as the possible causes of the experience, beliefs about control or treatment, perceived consequences, and how long the experience is likely to last for (though important exceptions to this are reviewed below). Garety, Kuipers, Fowler, Freeman, and Bebbington (2001) have used the term ‘‘secondary appraisals’’ to refer to evaluations of the experience of psychosis itself (such as what caused it, and how an individual can control it, what are the consequences to the person’s life), as opposed to primary appraisals of the meaning of anomalous experiences that may drive the core symptoms (such as ‘‘people who are looking at me intend to do me harm’’). Some distinction between different types of appraisal is potentially very useful, especially when the individual is able to recognise that their primary appraisals are part of a mental illness. For example, their secondary appraisal may include beliefs such as ‘‘these thoughts about people wanting to hurt me are caused by stress’’ or ‘‘I can control these experiences by taking some medication or reducing my stress.’’ However, the distinction between primary and secondary appraisal becomes less clear when the individual does not recognise their experiences as being part of a mental illness. Their causal explanation may be that their thoughts about people wanting to harm them are due to the fact that people really are trying to harm them. The primary and secondary appraisals are not easy to distinguish in this scenario and therefore the model becomes less useful. In addition, the terms primary and secondary may be confusing as they are already used in the related literature on coping and have specific and somewhat different meanings in that context (Lazarus & Folkman, 1984). It is our suggestion that attempts to develop an understanding of the role of beliefs in mental illness would benefit from drawing on the extensive work that has been already done in understanding the role of beliefs in physical illness and, in particular, the self-regulation model (SRM) (Leventhal et al., 1984). This model is particularly useful for understanding severe mental illness for the following reasons. (1) The SRM emphasises the importance of emotional representations as well as cognitive representations. This may be particularly important in mental illness where dysregulation of emotion may be integral (Garety et al., 2001). (2) The SRM is currently the most widely used model because of its reliability and validity in exploring important patient beliefs across a range of physical illnesses, and the advances this has made in understanding self-management (Hampson, Glasgow, & Foster, 1995; Hampson, Glasgow, & Toobert, 1990), and recovery (Horne, James, Petrie, Weinman, & Vincent, 2000; Petrie, Weinman, Sharpe, & Buckley, 1996). The wide applicability of the model suggests it may also be appropriate for mental as well as physical illness. (3) Much of the work that has been done in mental illness is consistent with this model. This literature is reviewed below. (4) Preliminary studies in mental illness indicate that the SRM explains considerable variance in important outcome measures for both patients (Clifford, 1998) and relatives (Barrowclough, Lobban, Hatton, & Quinn, 2001). (5) Finally, the SRM would have the added advantage of encouraging a wider exploration of beliefs about mental illness within clinical practice and research.

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2. The SRM (Leventhal et al., 1984) The SRM is based on the premise that patients are active problem solvers whose healthrelated behaviours are attempts to close the perceived gap between their current health and a future goal state. The coping strategies they select (for example, whether or not to take medication) are guided by their interpretation and evaluation of their illness. The outcome of these behaviours is then evaluated and fed back into their model of the illness, and/or used to shape future coping responses. This dynamic aspect of the process is strongly emphasised in the model. The key beliefs identified in the SRM refer to a specific illness episode, rather than to intellectual beliefs about a possible illness occurrence. In applying the SRM to physical illness, five specific components have been identified as being key to guiding individual responses. These are the perceived identity of the illness (including a label and signs/ symptoms), the perceived consequences (physical, social, and behavioural), the likely causes of the illness, and a likely timeline or sense of how long the illness will last for. A fifth belief identified by Lau and Hartman (1983) about potential for control or cure of the illness has also been added to the model. Validation for these beliefs is evident in the work of Kleinman (1980, 1988) who identified similar key beliefs when examining explanatory models of illness across different cultures. In addition to a cognitive representation of illness, Leventhal proposed an emotional representation, which he saw as existing in parallel. The emotional representation of illness has been less well developed and consequently, the relationship between these two systems is does not seem to have been fully elaborated (Fig. 1). Although originally developed around physical illness, Leventhal, Diefenbach, and Leventhal (1992) have briefly described how the model could be usefully applied to mental illness. They use the example of hypochondriasis, and argue this originates when an individual builds a model of illness in response to perceived bodily sensations. The

Fig. 1. Outline of the self-regulation model (Leventhal et al., 1984).

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individual’s model is that they have a serious illness, but the medical investigations do not confirm this and the medical practitioner’s model is that they are experiencing anxiety. Repeated reassurance does not work in the long-term because it fails to provide the individual with an alternative coherent model that explains why they experience the bodily sensations that they do. Until this is done, re-experiencing of the bodily sensations will trigger the old model of illness and the accompanying concern. This formulation is entirely consistent with specific cognitive models of hypochondriasis (Salkovskis, 1989; Warwick & Salkovskis, 1990).

3. Assessing beliefs about illness/health Since Leventhal originally proposed the SRM, there has been considerable support for both the specific beliefs that constitute the way in which people think about physical illness, and their utility in accounting for variation in outcome in a number of areas. A questionnaire that assesses these dimensions; the Illness Perception Questionnaire (IPQ) (Weinman, Petrie, Moss-Morris, & Horne, 1996) has been used with people with a wide range of health problems. Using this and similar measures, and controlling for degree of disease severity, associations have been demonstrated between illness perceptions and emotional adjustment (e.g., Murphy, Dickens, Creed, & Berstein, 1999), overall functioning levels (e.g., Scharloo, Kaptein, Weinman, Willems, & Rooijmans, 2000), coping and managing symptoms (e.g., de Valle & Norman, 1992; Hampson, Glasgow, & Zeiss, 1994), adherence to health care regimens (e.g., Wichowski & Kubsch, 1997), and cognitive processing of illness-related information (e.g., Croyle & Ditto, 1990). The importance of relatives’/carers’ beliefs about illness and/or treatment have also been investigated and shown to be associated with patient outcome (Heijmans, de Ridder, & Bensing, 1999), and treatment adherence by the patient (Heinzelman & Baguley, 1970). Relatives’ models are also likely to influence the patients’ own models, as evidence suggests that models can be influenced by information provided by others, even strangers (e.g., Croyle, 1992). The IPQ has recently been modified to include subscales assessing emotional representation and illness coherence (a sense of having a comprehensive understanding of the illness). The dimensions of control/cure and timeline have also been subdivided to differentiate personal and treatment control, and an acute/chronic and episodic timeline (Moss-Morris et al., 2001). Although the IPQ has been extensively used in assessing illness beliefs in physical illness, it has not been used to explore beliefs about mental illness, except in one study described below, which found a version modified for relatives of people with a diagnosis of schizophrenia to be a valid and reliable tool (Barrowclough et al., 2001). Before continuing to assess the reliability of the IPQ in measuring beliefs about mental illness, more in-depth assessment of the validity of focusing on the beliefs highlighted in the SRM is required. This requires a more open-ended methodology, such as semistructured interviews, to establish whether or not the key constructs that people use about mental illness are similar to those used to understand a range of physical illnesses, i.e., those described by the

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SRM. It is important that such a methodology avoids suggesting attributes that fit the model to be tested, but may not be those of concern to the patient (Leventhal & Nerenz, 1985). A number of other measures exist, which have been devised specifically to assess beliefs about mental illness. These include the Beliefs about Voices Questionnaire (BAVQ: Chadwick & Birchwood, 1995), Personal Beliefs about Illness Questionnaire (PBIQ: Birchwood et al., 1993), Short Explanatory Model Interview (SEMI: Lloyd et al., 1998), and the Family Coping Questionnaire (Magliano et al., 1998). Some, such as the PBIQ, have been based on theories drawn from other areas of psychology, but the validity of such theories in understanding mental illness has not been previously established. Others, such as the BAVQ, were devised from in-depth interviews with voice hearers. This more open-ended approach would seem to be the most appropriate methodology at this early stage of understanding (Leventhal & Nerenz, 1985).

4. Validity of the SRM in understanding mental illness The central aim of this paper is to assess the applicability of the SRM to mental illness. Studies are reviewed that have examined the beliefs that people with a mental illness hold about their experiences. We will assess to what extent these studies are consistent with the SRM before suggesting ways in which the model could be further developed and tested. This review includes all studies in which a clear attempt has been made to explore a link between beliefs about mental illness, and emotional or behavioural outcomes. In categorising the studies, we have first divided them into those exploring beliefs about mental illness in people who have experienced such problems, their close relatives, and professionals who work directly with this population. Within each of these sections, we have further divided the studies into those assessing each of the dimensions of the SRM. Some studies were pertinent to more than one dimension, but have been described in the section considered most relevant. Beliefs held by the lay population have not been included. Studies that described beliefs without linking them to an outcome were also excluded. The focus of the paper is on mental illness in general. Because many of the studies have not specified in detail the diagnosis under investigation, we include here terms that imply mental illness, such as ex-mental patient, psychosis, someone who has been hospitalised for a mental health problem. Where researchers have been more specific, the most common diagnosis has been schizophrenia. More specificity is required in future research in this area as there is evidence to suggest that people do think differently about different specific diagnoses (Crisp, Gelder, Rix, Meltzer, & Rowlands, 2000). 4.1. People who experience a mental illness 4.1.1. Identity The identity dimension of the model assesses what the individual thinks their problem is. This dimension has been divided into the signs/symptoms that the individual experiences, and the label that they give to these.

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4.1.1.1. Signs and symptoms. Most of the research about the role of cognitive factors in mental illness, has focussed on the identity component, i.e., how individuals define their experiences. Many studies support the idea of the role of an information processing bias, including an externalising bias in people with paranoid delusions (Kinderman & Bentall, 1996), self-serving bias (Kaney & Bentall, 1989), attentional bias (Bentall & Kaney, 1989), and recall bias (Kaney, Wolfenden, Dewey, & Bentall, 1992). In addition, there is experimental evidence that people with delusional beliefs are more likely to jump to conclusions (Huq, Garety, & Hemsley, 1988), and that voice hearers have higher levels of private self-consciousness (Morrison & Haddock, 1997). These biases may explain why internal events such as thoughts may be experienced as voices, or why harmless events such as someone talking on a phone, may be experienced as a conspiracy to harm. Garety et al. (2001) and Morrison (2001) attempt an integration of these processes into coherent models. The interpretations that are made about experiences have been clearly linked to behavioural responses. Chadwick and Birchwood (1994), extending Beck’s cognitive model for emotional disorders, proposed that beliefs about voices would be more important in predicting emotional and behavioural responses, than their content per se. The beliefs that they focused on were the omnipotence of the voice (how powerful it was) and whether it was perceived as malevolent (wishing to do evil) or benevolent (wishing to do good). They found that the individual actively engaged with voices perceived as benevolent, whereas those perceived as malevolent were resisted. Beliefs about voices, rather than the content predicted response. More recent work in this area has highlighted additional beliefs that may be important including the control that the individual feels they have over the voice. These studies are discussed below. Understanding individual beliefs about identity of voices may also be important in preventing future harm. For example, Junginger (1990) found that people who experienced command hallucinations were more likely to act on these if they recognised the identity of the voice as someone familiar to them, and if they held delusions related to their voices. Acting on commands was not associated with the dangerousness of the command. Label. How the individual then summarises and labels these experiences may also have an important impact on their responses. In particular, whether or not the individual labels their experience as being disease-related. Within mental illness, how the individual labels their experiences has been closely linked to insight. Traditionally, insight has been seen as on all or nothing phenomenon and patient insight would be assessed by clinical descriptions of patient free responses (Amador, Strauss, Yale, & Gorman, 1991). People who show insight are more likely to be compliant with medication (Bartko, Herczeg, & Zador, 1988; Nageotte, Sullivan, Duan, & Camp, 1997), and have a better treatment outcome (McEvoy et al., 1989; McEvoy, Howe, & Hogarty, 1984). However, more recently, there has been recognition of the construct of insight as complex, multidimensional, and fluid over time (Amador & David, 1998). The need to understand the way in which individual appraises his or her own experiences, and the function of this appraisal, has been recognised. Moreover, the assumption that understanding psychotic symptoms within a strict medical model is beneficial to the patient has been challenged. White,

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Bebbington, Pearson, Johnson, and Ellis (2000) found a strong positive association between ‘‘insight’’ as measured by adherence to a medical model, and depression. Jackson et al. (1998) found that people who integrated their experiences more fully, accepting that they had experienced a psychotic episode, actually showed higher levels of depression, than those who adopted a more ‘‘sealing over’’ approach. They argue that this may reflect the individual becoming engulfed by the demoralization and stigma that they associate with mental illness. The link between medication adherence and insight is also more complex than initially suggested. Overall, there is a positive association between traditionally measured insight, and adherence to medication (Bartko et al., 1988). However, there are many individuals who do not accept the assertion that they have a mental illness, and yet are adherent to treatment. This suggests that the relationship between insight and adherence is influenced by other factors. A recent review of nonadherence in affective disorders highlights the importance of attitudes and beliefs about medication, and argues for more research to identify specific targets for intervention (Scott & Pope, 2002). Finally, the way in which individuals label their experiences has been associated with perceived quality of life. Mechanic, McAlpine, Rosenfield, and Davis (1994) found that people who attributed their mental illness to a physical/medical/biological problem as opposed to a psychological problems, scored higher on a perceived quality of life measure, and reported less personal stigma and greater self-esteem. However, the results of this study need to be interpreted in light of the fact that the participants were recruited via membership of an organisation that promotes a disease model of schizophrenia. These studies suggest that the way in which an individual identifies their experiences is associated with their emotional response, and important behaviours such as taking medication. However, to fully understand these responses, the pattern of beliefs across a number of dimensions is important. The signs/symptoms described or the label used is not sufficient on its own. 4.1.2. Cause This dimension of the model assesses what the individual thinks has caused their illness. This dimension has mainly been explored in relation to depressed mood. It is likely that beliefs about cause are important in many areas, especially adherence to treatment, but no studies were identified that explicitly assessed this. Postpsychotic Depressive Disorder of Schizophrenia was listed in the Diagnostic and Statistical Manual of Mental Disorders—4th ed. (DSM IV; American Psychiatric Association, 1994) as a possible diagnostic category requiring further research. Roughly one third of patients with a diagnosis of schizophrenia, also have full depressive syndromes, and over a 7year period, nearly half will experience significant depression (Sands & Harrow, 1999). A large number of factors have been suggested to account for why some individuals develop depression, including genetic factors or family history (e.g., Galdi, 1983; Galdi, Reider, Silber, & Bonato, 1981), the use of neuroleptics (e.g., Van Putten & May, 1978), personality (e.g., Liddle, Barnes, Curson, & Patel, 1993), and substance abuse (e.g., Bartels & Drake, 1989). More recently, the suggestion that post psychotic depression is associated with the

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individual’s secondary appraisal of their experiences has been made. Birchwood, Iqbal, Chadwick, and Trower (2000a, 2000b) used the PBIQ and followed up 115 patients over a 12-month period following an acute psychotic episode. They found that over a third of these people became depressed following the episode and this was not directly related to the psychotic symptoms they had experienced. Depression, however, was related to beliefs about the illness. In addition to beliefs about the consequences of the illness (see Section 4.1.3), postpsychotic depression was also associated with attribution of the cause of psychosis to factors internal to the self. This suggests that for some people depression may have been a psychological reaction to the experience of having a psychotic episode, rather than a symptom of the illness per se. 4.1.3. Consequences This dimension assesses what the individual believes will be the consequences of having the health problem on their lives. The perceived consequences of the individual’s experience have been shown to be associated with variations in coping (Kinney, 1999; Tarrier, Harwood, Yusopoff, Beckett, & Baker, 1990), depression (Birchwood et al., 1993, 2000a, 2000b), and medication adherence (Adams & Scott, 2000; Budd, Hughes, & Smith, 1996). Patients with a diagnosis of schizophrenia are able to identify strategies that they use to cope with their symptoms (Fallon & Talbot, 1981). The beliefs that they have about the likely consequences of symptoms appear to mediate this relationship. Kinney (1999) showed that patients who perceived their symptoms as more taxing and burdensome were more likely to report effortful attempts to cope. A cognitive behavioural style intervention known as Coping Strategy Enhancement (CSE) developed by Tarrier et al. (1990) includes an assessment of the individual’s appraisal of their experiences, and uses belief modification strategies to aid the development of existing and new coping skills, where necessary. This intervention has shown to be effective at reducing positive symptoms. Some authors have suggested that beliefs about the consequences of symptoms can lead to adoption of behaviours that although intended by the individual to prevent harm, in fact exacerbate the problem. Morrison (1998) proposed that the experience of psychotic symptoms regularly results in the use of safety behaviours such as distraction or avoidance. Some support for this theory comes from a study by Freeman, Garety, and Kuipers (2001) in which they found that higher levels of anxiety were associated with greater use of safety behaviours. Morrison argues that strategies to reduce the use of safety behaviours, such as challenging negative beliefs about the consequences of symptoms, can be used to help people to drop safety behaviours and test out their beliefs associated with feared consequences of the symptoms. Birchwood et al. (1993) found a significant association between the perception of negative social consequences of symptoms, including stigmatisation and social containment, and depression in people with a diagnosis of depression. More recently, Birchwood et al. (2000a, 2000b), in the study described previously, found that individuals who appraised their illness as constituting a loss of autonomy and valued role, as humiliating, and who felt entrapped by their illness, were more likely to become depressed than those who did not.

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Finally, perceived consequences have been associated with medication adherence. Budd et al. (1996), using the health belief model as a basis to investigate adherence, found that perceived severity of symptoms was associated with greater medication adherence. In addition, perceptions of susceptibility and beliefs about the benefits of the medication were also important. Adams and Scott (2000), also using the health belief model, found perceptions of severity of symptoms and perceived benefits from mediation to be important in medication adherence. 4.1.4. Timeline: acute/chronic No studies were identified that explored patients’ beliefs about how long their experiences were likely to last and the impact of these beliefs. This is surprising in light of the very variable outcome for people who experience a psychotic episode (e.g., Mason et al., 1995). One reason for a lack of research in this area may be that the timeline for any individual is very hard to predict, therefore, challenging beliefs associated with distress would be very difficult. 4.1.5. Control This dimension of the SRM assesses beliefs about how the problems can be controlled. A useful distinction has been made recently between beliefs about control by treatments, and beliefs about personal control (Moss-Morris et al., 2001). 4.1.5.1. Personal control. Appraisals of controllability of symptoms by the individual have been investigated and shown to be associated with a number of important outcomes. One of the first studies to investigate people’s beliefs about their symptoms in severe mental health was undertaken by Romme, Honig, Noorthoorn, and Escher (1992) and focussed on how voice hearers coped with their experiences. Following a TV program about hearing voices, they contacted people who telephoned in to the programme, and sent them a questionnaire about their voices. They found that over half of the sample felt that they were unable to cope with their voices. This subgroup was more likely to be in psychiatric care and was more likely to use distraction as their main strategy. Those who did feel able to cope were more likely to use strategies that reflect the belief that they could control their voices including setting limits on the voices. More recently, Hoffman, Kupper, and Kunz (2000) in a prospective study found that negative self-concepts, external loci of control, and depression correlated to a greater extent with depressive-resigned coping strategies such as self-pity, resignation and brooding, than did schizophrenic symptoms. Controlling for negative symptoms, external control beliefs still had a predictive value for the outcome. Beliefs about the ability to control psychotic experiences have also been shown to be directly associated with level of distress. Freeman and Garety (1999) identified factors implicated in the meta-cognitive model of anxiety as also present in a group of people experiencing persecutory delusions. The level of distress reported by individuals in relation to a belief was not only associated with its content, but also with beliefs about not being able to control their thinking about the feared persecution. Similarly, it has been suggested by Morrison, Wells, and Nothard (2000) that hallucinations become distressing only when appraised as uncontrollable and dangerous.

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Finally, expanding the work discussed previously by Beck-Saunder, Birchwood, and Chadwick (1997) and Chadwick and Birchwood (1994) found that in addition to beliefs about malevolence/benevolence of the voice, beliefs about ability to control the voice were significantly associated with compliance with command hallucinations. People who experienced these but who believed that they retained subjective control over their voices were less likely to comply with all types of demands. Appraisals of controllability of symptoms have been shown to be associated with type of coping strategies used (Romme et al., 1992) hopelessness (Hoffman et al., 2000), distress (Freeman & Garety, 1999), and compliance with auditory hallucinations (Beck-Sander et al., 1997). These findings are particularly important as perceived controllability has been shown to be amenable to treatment using CBT interventions (Chadwick, Sambrooke, Rasch, & Davies, 2000; Drury, Birchwood, & Cochrane, 2000). 4.1.5.2. Treatment. Beliefs about the potential for various treatments to control unwanted symptoms have been associated with treatment adherence. This is extremely important as nonadherence in mental illness is an extensive problem ranging from 11% to 80% [see review by Corrigan, Lieberman, & Engel, 1990, and a review by Fenton, Blyler, & Heinssen, 1997 suggests a median 1-month to 2-year nonadherence rate of 55% (range 24%–88%)]. Nonadherence is strongly associated with admission to hospital (Green, 1988), relapse (Linn, Klett, & Caffey, 1982), increased length of admission (Caton, Koh, Fleiss, Barrow, & Goldstein, 1985; McEvoy et al., 1984), and trouble with the police (Smith, 1989). In two studies which used a different social cognition model, the health belief model (Becker, 1974), to investigate medication adherence, perceived benefits of medication came out as a significant predictor of adherence to medication (Adams & Scott, 2000; Budd et al., 1996). Nonadherence to psychological treatment, usually assessed by drop out, is also associated with beliefs about the ability of the treatment to control the symptoms. Tarrier, Yusupoff, McCarthy, Kinney, and Wittkowski, (1998) questioned people who had dropped out of cognitive behavioural treatment: the most common reason given was that the patients did not perceive the treatment as suitable for their problems. 4.1.6. Coherence This dimension refers to a sense of having a comprehensive understanding of the illness. This does not seem to have been explicitly investigated in people with a mental illness. A related concept, however, is that described by McGlashan, Levy, and Carpenter (1975) as a continuum of recovery styles ranging from full integration of the experience into their sense of self, to sealing over in which the psychotic experience is spilt off from the sense of self and high levels of denial regarding the severity of the experience are evident. Integrators tend to be curious about their symptoms, regard them as part of their life pattern, and gain information about them. In contrast, people who seal over tend to isolate the psychotic experience and view it as alien to themselves. Contrary to predictions, there is some evidence that at least for people experiencing first episode of psychosis, integration may not be the best style. Integration has been associated with an increase in depression in

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individuals undergoing psychological intervention for early psychosis (Jackson et al., 1998). The acceptance of the role of an individual with psychosis is likely to be associated with stigma, negative stereotypes, and lack of hope about returning to premorbid levels of functioning (McGorry & McConville, 1999). 4.1.7. Other dimensions Two important areas of work do not initially seem to fit easily within any one of the SRM dimensions. Birchwood et al. (2000a, 2000b) attempted to understand the impact of perceived social rank on voice hearing. The second is beliefs about treatment, which have been shown to be a necessary addition to understand adherence responses (Horne & Weinman, 1997; Horne, 1998). These are not beliefs about whether or not the illness is amenable to treatment (which is included in the SRM), but beliefs about specific treatments such as their perceived advantages and disadvantages. Birchwood et al. (2000a, 2000b) investigated the use of ranking theory in understanding the relationship that people have with their voices, and how this may impact on outcome. This work builds on the theory that how an individual views himself or herself in relation to significant others in their lives can have a determining role in their emotional state (Gilbert, 1992). Using a range of questionnaire measures to assess social rank and power of the dominant voice and significant others in their lives, the authors found that the perceived difference in rank between the voice and voice hearer is mirrored in their perceptions of social rank differences between self and others. Greater perceived differential was associated with depression in patients. Birchwood et al. argue that interpersonal schemata are responsible for both the experience of auditory hallucinations as dominant, and the depression. The attempt to understand people’s beliefs within a social context is an important step forward in our view, and is entirely consistent with the SRM, which places a clear emphasis on the importance of the sociocultural context (Leventhal et al., 1997). However, the concepts of social rank and power may benefit from being more clearly defined. Both concepts seem to incorporate issues of identity, control, and consequences. Exploring these concepts within the SRM may actually help define more clearly the beliefs behind these concepts. The SRM focuses on beliefs about health/illness. Research into adherence with medication has highlighted the need to investigate beliefs about treatment as well. Day, Bentall, and Warner (1996) found that patients reported experiences of neuroleptic medication reflected a complex interrelationship between costs and benefits of taking medication, interactions with the prescribers, and issues of autonomy. Horne and Weinman (1999) have suggested that this may be generally true for a range of treatments and have begun to investigate beliefs about treatment as an addition to beliefs about illness in a range of physical health problems. In particular, beliefs about the necessity of medication and concerns about the potential adverse effects seem to be important and need to be addressed in any intervention focused on increasing adherence (Horne & Weinman, 1995).

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4.1.7.1. Using the SRM to investigate beliefs about mental illness. Two attempts to investigate beliefs outlined in the SRM in relation to schizophrenia have both used the IPQ. Clifford (1998) administered the IPQ to a sample of 38 psychotic patients. The subscales showed acceptable levels of internal reliability (a’s .60 – .92). There was a positive association between nonadherence to medication and a perception of fewer and less severe symptoms, a shorter duration of illness, external attribution of cause, and more severe negative consequences. The IPQ was also used with people with a diagnosis of schizophrenia by Talley (1999). She found that only the subscales measuring consequences and symptoms were internally reliable. The consequences subscale also showed some concurrent validity in correlating with other measures of the impact of the illness. These studies suggests that the SRM is a potentially useful model for understanding mental illness, but that the IPQ may require some modification before it can be reliably used with this population. Summary. All of the above research supports the assertion that models of mental illness held by individuals are an important area for investigation if we are to understand variation in outcome. There is a clear need to focus more on each individual’s appraisal of their experiences, and to develop more sophisticated ways to investigate these. To quote Rogers et al. (1998, p. 1322), ‘‘future practice and research might fruitfully examine the way in which placing value on patients’ own definitions of their problems, experience and management strategies presents an opportunity for rethinking the nature of professional/patient encounters about medication and mental health policy more generally.’’ In order to do this a framework for examining patients’ own definitions of their problems, experiences and management strategies is needed. 4.2. Beliefs held by relatives/carers Cognitive representations of mental illness held by relatives/carers are likely to be important for a number of reasons. Evidence reviewed below suggests that models can have an impact on the emotional response of the relative and on the way in which relatives respond to the person experiencing the mental illness, which in turn may impact on their progress. In addition, because beliefs are likely to be influenced by cultural and social norms (Leventhal et al., 1997), relatives’ beliefs are likely to play some role in shaping the representation held by the person experiencing the mental illness, especially give the often long duration of untreated illness (Beiser et al., 1993; Larsen, McGalshan, & Moe, 1996; Loebel et al., 1992). There is also some evidence from the physical health literature to suggest that relatives’ models can have an impact on the adaptive outcome for patients (Heijmans et al., 1999; Heinzelman & Baguley, 1970). The importance of relatives’ beliefs about mental illness in designing treatment interventions to help relative’s coping responses has been strongly emphasized in the work of Tarrier, Barrowclough, and colleagues (Barrowclough et al., 1987; Tarrier, 1991; Tarrier & Barrowclough, 1986). Their development of interventions for families with an individual with schizophrenia have been guided by evidence suggesting that providing information

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alone can have very little impact (Berkowitz, Eberlein-Fries, Kuipers, & Leff, 1984; McGill, Fallon, Boyd, & Wood-Swerio, 1983). They argue that this is because relatives already have models that will be used to actively process additional information that is provided, leading to rejection and accommodation of incongruent facts. Therefore, successful intervention requires the therapist to ‘‘. . .assess and take into account both patients and relatives perceptions of the illness prior to embarking on the task of giving information’’ (Tarrier & Barrowclough 1986, p. 462, lines 7–9). This allows the amount, type, and speed of presentation of information to be tailored to the individual. Failure to do this is likely to be one reason for high nonadherence to psychological interventions (Tarrier, 1991). Most of the work in this area has been focused on the attributions that relatives make about the symptoms and problems of the person experiencing a mental illness. Weiner’s theory of attribution (Weiner, 1985a, 1985b, 1988, 1990) suggests that our attributional appraisals play a key role in our emotional and behavioural reactions to another individual’s behaviour. Specific causal dimensions have been linked to discrete affects. In particular, Weiner has suggested that anger is linked to beliefs that the individual can control their behaviour, pity to beliefs that the individual is unable to control their behaviour, and guilt to beliefs about personal responsibility. Weiner has also suggested that causal attributions are associated with behavioural responses. In experimental situations the belief that a person is drunk is associated with attributions of personal control to the person and neglect behaviour on the part of the observer, whereas beliefs that an individual has a disability/illness is associated with perceived lack of personal control to the person and helping behaviour on the part of the observer. This theory has been developed and used to explore how relatives’ attributions about the patients’ behaviour can impact on their responses. Results of these studies are reviewed below. Some work exploring the impact of the social consequences perceived by the relative is also described in a study that explicitly used the SRM (Barrowclough et al., 2001). We were unable to identify studies in which beliefs about the identity, or a sense of coherence, were explored in relation to outcome for the patient or the relative. The main outcomes that have been assessed for relatives include distress, expressed emotion (EE), subjective level of burden, and relative’s coping strategies. EE is a measure of the emotional climate within the home environment. It is assessed using a structured interview with a relative at the time of patient hospitalisation. The taped interview can be reliably rated to classify relatives as high or low EE on the basis of criticism, hostility, or emotional over-involvement. High EE has been reliably associated with higher rates of relapse in schizophrenia (see Butzlaff & Hooley, 1998 for a meta-analytical review), as well as being associated with patient outcome in numerous other mental and physical health problems (see Wearden, Tarrier, Barrowclough, Zastowny, & Rahill, 2000 for a review of EE in health care research). Recent research and theory about the attributions of relatives of people with a mental health problem (Hooley, 1987) and relatives of patients with schizophrenia (Barrowclough, Johnston, & Tarrier, 1994; Brewin, 1994; Brewin, MacCarthy, Duda, & Vaughn, 1991; Greenley, 1986; Hooley, 1985; Lopez, Nelson, Snyder, & Mintz, 1999; Weisman, Lopez, Karno, & Jenkins, 1993) suggests that relatives’ beliefs about the nature and symptomatology of the mental illness may help to understand the high EE response in some relatives.

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4.2.1. Cause Attributions of causality for symptoms have also been shown to be associated with levels of relatives’ distress (Barrowclough, Tarrier, & Johnston, 1996; Heinrichsen & Lieberman, 1999), emotional response to the patient (Barrowclough et al., 1994, 1996), and relative’s coping (Chesla, 1989; Rose, 1983). In general, there is some preliminary evidence to suggest that relatives are more likely to attribute the cause of schizophrenia to biological factors than psychosocial factors, when compared to a general population sample (Angermeyer & Matschinger, 1996). This study was done on a German sample of people in a self-help organization, and the authors suggested that it could be due to increased exposure to a medical model via contact with psychiatric services, or an attempt to reduce feelings of guilt that may be associated with a psychosocial model. Self-blaming attributions are generally accompanied by high levels of distress (Barrowclough et al., 1996). In addition, Heinrichsen and Lieberman (1999) found that relatives who attributed symptoms to the patients’ moral failings or psychological problems from earlier life were more likely to report poor emotional adjustment. Attributions of cause that are internal to the patient are generally found in relatives who are hostile in their response, as rated on the CFI, whereas relatives who tended to attribute all behaviours to illness were rated as emotionally overinvolved (Barrowclough et al., 1996). Support for the importance of the role of carer beliefs is increased by the finding from one study that such beliefs are better predictors of outcome than EE ratings (Barrowclough et al., 1994). Chesla (1989) and Rose (1983) have shown an association between attributions of cause of mental illness and the type of coping strategies used by relatives. Relatives who saw mental illness as being caused by a chemical imbalance strongly reinforced the use of medication, whereas those who saw irrational thoughts as the cause tried to reason with the patient to think differently and avoided reinforcing any delusional ideas. 4.2.2. Consequences When asking relatives about the consequences of the mental illness, it is important to recognize the distinction between consequences for the relative and consequences for the person experiencing the mental health problem. Barrowclough et al. (2001) used a modified version of the IPQ to assess both of the dimensions. As would be expected, relatives who perceived greater consequences for themselves also scored higher on measures of distress and sense of burden. In addition, the relatives’ perception of consequences for the patient was associated with the patient’s perception of the their relationship with their relative. The more consequences of the illness that the relative perceived for the patient, the more the patient both expressed negative feelings towards the relative and perceived negative feelings from them. 4.2.3. Timeline: acute/chronic In the study referred to above, Barrowclough et al. (2001), an association was also found between the relatives perception of how long the symptoms would last for and their level of EE. Relatives who had a more chronic timeline perception of the illness were more likely to be rated as lower EE.

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4.2.4. Control In exploring the link between perceptions of control and outcome for relatives, it is important to distinguish between personal control that they believe that patient to have over the symptoms and personal control that they believe themselves to have. Relative’s beliefs about their own control have been associated with level of subjective burden (Maurin & Boyd, 1990) and beliefs about patient control have been associated with emotional response to the patient (Barrowclough et al., 1994; Lopez et al., 1999). Relatives’ distress levels can be due to many different life events independent of the patients’ symptoms. Subjective burden is a more situation specific measure of ‘‘personal appraisal of the situation and the extent to which they perceive they are carrying a burden’’ (Hoenig & Hamilton, 1966). Interestingly, there is not a strong correlation between measures of subjective burden and patient characteristics (Scazufca & Kuipers, 1996). Studies have demonstrated that the relationship is mediated by a number of factors including social support, coping strategies, economic status, other life events, and symptoms associated with social withdrawal, but also by perceptions of the problem, including a belief in having some control over the problems (see Maurin & Boyd, 1990 for a review). A central and consistent finding is that critical and hostile relatives tend to attribute more control and personal responsibility to the patients for their symptoms and associated problems (Barrowclough et al., 1994). There is also some evidence to suggest that higher levels of warmth are associated with more universal and less controllable attributions (Barrowclough et al., 1994; Lopez et al., 1999). 4.2.4.1. Using the SRM to investigate beliefs about mental illness in relatives. Barrowclough et al. (2001) explicitly used the SRM to assess the beliefs held by relatives of people with schizophrenia. The results showing associations between specific beliefs and outcomes have been summarized in the sections above. The study also concluded that a modified version of the IPQ was a reliable measure of relatives’ perceptions of schizophrenia. Summary. This research would suggest that beliefs about mental illness held by relatives are important. However, much of the evidence is based on correlational evidence and would benefit from being supported by experimental designs. In addition, there is still a lack of a clear theoretical framework to highlight which beliefs are likely to be key and what specific role these beliefs play. Most of the research into relative’s responses has been dominated by attributions of cause and controllability. More extensive research is needed to explore the impact of beliefs such as how long the relative thinks that the behaviour will last for, beliefs about the consequences of this behaviour for their own lives and the lives of their relatives, and beliefs about treatment. 4.3. Beliefs held by professionals Beliefs held by professionals about mental illness have also been investigated and links have been made with behavioural and attitudinal outcomes. These include the relationship between the client and professional, and treatments that are potentially offered to clients.

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4.3.1. Identity No studies were identified that measured the relationship between professionals’ beliefs about the label and/or symptoms of mental illness, and their responses. However, it has been hypothesized that belief in the validity of the concept of schizophrenia may be one factor associated with whether or not professionals choose to work with this population. Bellack (1986) argued that the reason why so few clinical psychologists in the USA were working with people with a diagnosis of schizophrenia was that they held certain beliefs about the disorder, including not believing in the validity of the concept. Beliefs about schizophrenia held by psychologists working in Ireland and the UK partially support this hypothesis, with 33% disagreeing with the validity of the concept (Gallagher, Gernez, & Baker, 1991). However, the hypothesized association between such beliefs and choosing to work with the population of people who receive such a diagnosis has not been demonstrated and there are examples of extensive work done in this area by people who question the validity of the concept (e.g., Bentall, 1990; Bentall, Jackson, & Pilgrim, 1988). 4.3.2. Cause Beliefs about the cause of mental illness have been associated with treatment plans. Cape, Antebi, Standen, and Glazebrook (1994) found a strong correlation between belief in a causal role for psychosocial factors and use of nonmedical treatments, such as psychotherapy, among psychiatrists. Psychiatrists who felt that psychosocial factors were important in the aetiology of schizophrenia were more likely to rate social support as important prognostically and were less likely to see the patient as needing medication for the rest of his/her life. 4.3.3. Control 4.3.3.1. Personal. Beliefs that professionals have about the amount of control that an individual has over their mental illness have been associated with the patient’s perception of the quality of the therapeutic relationship. Barrowclough et al. (2001) assessed feelings and thoughts of both staff and patients on a low secure inpatient facility for people with severe mental illness. They found that patients were very sensitive to staff feelings for them, and there was an association between less positive feelings reported by the staff and the staff attributing more control to the patients over their symptom-related behaviour. This finding is particularly important given that Weiner’s theory would predict that this attribution of controllability would result in less helping behaviour by the staff (Weiner, 1985a, 1985b, 1988). 4.3.3.2. Treatment. Beliefs about how well treatment can control symptoms have been explored but have not been directly linked to any important outcome variables. Jorm et al. (1997) found that both Australian GPs and psychiatrists believed that patients with schizophrenia or depression had a better prognosis if they were to receive professional help. In a large survey of Australian mental health professionals (Caldwell & Jorm, 2000), nurses were significantly more positive than psychiatrists about many interventions including seeing a naturopath or herbalist, taking vitamins or sedatives, courses on relaxation,

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meditation or yoga, seeing a counseller, stress management, close friends, physical activity, getting out more, hypnosis, diet, etc. They were generally more negative than psychiatrists about a visiting a GP, admission to a psychiatric ward, and ECT. Gallagher et al. (1991) found that the majority of psychologists they surveyed in Ireland and the UK believed that schizophrenia was not adequately treated with medication, and strongly disagreed with the view that schizophrenia is too severe a condition for psychologists to work with. This suggests that negative beliefs about the potential effectiveness of psychological interventions are not dominant and therefore unlikely to reduce the likelihood of psychologists working with this population. How these beliefs about the potential effectiveness of treatments impact on actual practice has not been tested. However, this is an important area for future research due to the likely impact of such beliefs on the treatments that patients are offered. Using the SRM to investigate beliefs about mental illness in professionals. To our knowledge, the SRM has not been explicitly used to assess how beliefs held by mental health professionals impact on their responses to their patients. However, some important lessons can be learned from studies using the SRM to assess beliefs held by professionals working with physical illness. This work has suggested that what may be more important than either the patients’ beliefs about their mental illness, or those of the professional, is the amount of agreement between the two models. There is considerable evidence to suggest that there is often a poor fit between patient and practitioner models and, more importantly, that this is often not addressed or even assessed. Helman (1985) studied people with chronic physical problems but for whom there was a recognised psychosomatic component. They found that there was substantial variation in agreement levels between the doctors’ and patients’ models. In general, doctors had a very poor understanding of patients’ models and this was worse for patients in lower socioeconomic and educational groups. They suggest that the accuracy of the doctor’s understanding of the patient model will predict future adherence. 4.3.3.3. Summary. Some studies cited above have suggested that beliefs about cause, control, and likely response to treatment may vary within and across professional groups, and that these beliefs may impact on the treatment that patients receive. However, studies that are able to assess the direct impact of beliefs on practice, rather than relying on self-report would greatly increase the validity of findings in this area. Such studies would benefit from a clear theoretical model to guide exploration of which beliefs may be key. Important beliefs within the SRM that have not been explored in this area include beliefs about identity, timeline, and consequences. In addition, exploration of the importance of similarity of models between client and practitioner in mental health is clearly warranted.

5. Limitations of illness models It is hypothesised that models of illness that have been found to be helpful in physical illness may be usefully applied to mental illness to further our understanding of people’s responses to illness. It is likely that modifications will be necessary and that different

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dimensions of understanding to those identified in physical illness may be critical. However, the work on illness perception in physical illness provides us with a methodology to develop and test a framework that is needed to further work in this area. One of the main criticisms of the models of illness literature has been a lack of testing of proposed causal links between beliefs and outcomes, most of the evidence being based on associations. Early attempts to directly impact on beliefs and demonstrate a clear link between change in belief and change in outcome are beginning to be reported (e.g., Yardley, Beech, & Weinman, 2001). Cognitive behaviour therapy, more commonly discussed in the clinical psychology literature, could be more extensively used to modify beliefs and demonstrate directly the causal role of beliefs in outcome. Other shortcomings in the methodology of models of illness need to be acknowledged and overcome. Firstly, although Leventhal’s original model highlights beliefs about identity, cause, consequences, timeline, and cure/control, many studies have explored single beliefs in relation to outcome. The pattern of beliefs across the dimensions are likely to have a very different impact from single beliefs in isolation; ‘‘the examination of isolated variables may prove valuable in particular situations, but will do little to advance understanding or aid in the development of a communicable body of knowledge’’ (Leventhal & Cameron, 1987, p. 134). Again, notable exceptions to this criticism can be found in studies that have attempted to explore patterns of beliefs (Buick, 1997). Secondly, most studies have used people’s selfreport of what they think or what they say they would do. There is generally very little correlation between this and what they actually do (Ajzen & Fishbein, 1980) so more valid assessments are required. Other limitations are more difficult to rectify. Firstly, models such as the SRM are dynamic models in which the variables all impact on one another. Beliefs that influence responses are themselves modified in light of the appraisal of the outcome. This can make the identification of dependent and independent variables in research very difficult, and models need to be assessed over time as they are constantly evolving. Secondly, it could be argued that investigating illness models in people with a diagnosis of a mental illness is less relevant that in those with a physical illness because the nature of the problem may interfere with their ability to reflect on their experiences and form meaningful models. However, this argument implies a distinction between physical and mental experiences that is not supported by evidence. Problems identified as physical in their diagnosis, such as diabetes, can have a significant impact on an individuals’ cognitive ability and their psychological functioning (see Frier, 2001). Psychological factors also play a large part in outcome via their impact on help seeking behaviour (see Kreitler, 1999). Similarly, patients diagnosed with a problems considered by many to be psychological, experience very real physical symptoms, as in the case of fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and atypical facial pain (see Cameron, 2001 for further discussion of this issue). Our own clinical experience with people with a mental illness suggests that they clearly do form cognitive representations about their experiences, even if these are at odds with the representations held by their key worker or psychiatrist. Finally, it is important that where illness models are used to increase our understanding of peoples’ responses to mental illness, it is recognised that they are theoretical models that are

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tools to help testing of hypotheses and to guide us to potentially important areas for intervention. Models are inevitably limited and cannot replace individual formulations, which provide a far more complex and useful guide to the individual’s understanding of their illness and the meaning it has for them.

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