Clinical Psychology and Psychotherapy Clin. Psychol. Psychother. 22, 193–207 (2015) Published online 27 November 2013 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/cpp.1878

The Experience of Cognitive Impairment in People with Psychosis† Helen Wood,1* Caroline Cupitt2 and Tony Lavender1 1 2

Canterbury Christ Church University, Applied Psychology, Tunbridge Wells, UK Bexley Assertive Outreach Team, Oxleas NHS Foundation Trust, Erith, UK

Cognitive impairment has been widely studied in people with psychosis. However, research is lacking into the subjective experience of cognitive impairment, its impact and ways in which individuals cope. This study aimed to provide an account of the experience of cognitive impairment in people with a diagnosis of schizophrenia, including what difficulties people experience, how these difficulties are understood, how people respond to these difficulties and how they perceive others’ views of these difficulties. A semi-structured interview was carried out with eight participants with a diagnosis of schizophrenia focusing on participants’ experiences of difficulties with cognitive functioning. Interpretative phenomenological analysis was used to analyse interview transcripts. Experience of cognitive impairment was understood in terms of six master themes: impaired controlled thinking, physical sensations and impaired movement, explanations for the impairment and comparisons to the past, managing the impairment, how others see the impairment and anticipating the future. This study is the first rigorous qualitative study of the subjective experience of cognitive impairment in people with psychosis, and it provides greater context for empirical findings. The results have significant implications for clinical psychology, including education about cognitive difficulties and the importance of cognitive functioning to formulation. New areas for research include coping strategies in relation to functioning and future perspectives, ascertaining staff understanding of cognitive impairment, and reflective conversation style as an intervention for metacognitive difficulties. Copyright © 2013 John Wiley & Sons, Ltd. Key Practitioner Message: • Difficulties with cognitive functioning should be considered in clinical practitioners’ formulations of clients’ difficulties in the context of psychosis. • Services should consider providing service user and carer education about cognitive impairment in psychosis. • Staff may need further training in order to support people with psychosis who have difficulties with cognitive functioning. Keywords: Psychosis, Schizophrenia, Cognitive Functioning, Cognitive Impairment, Interpretative Phenomenological Analysis, Qualitative

INTRODUCTION Psychosis and Cognitive Impairment Psychosis involves perceptual experiences, including hearing or sensing things that others do not, and holding unusual beliefs or unwarranted beliefs about others (Perry, Talor, & Shaw, 2007; Thornhill, Clare, & May, 2004). The experience

*Correspondence to: Helen Wood, Adult Mood and Anxiety Disorder Services, Western Psychiatric Institute and Clinic, University of Pittsburgh Medical Center, USA. E-mail: [email protected] † This research was carried out as part of a doctorate in clinical psychology at Canterbury Christ Church University, UK.

Copyright © 2013 John Wiley & Sons, Ltd.

of psychosis occurs within a number of diagnostic categories, including schizophrenia (American Psychiatric Association, APA, 2013), which forms the focus of this study. Diagnostic criteria for schizophrenia include ‘positive symptoms’ (hallucinations, delusions, disorganized or catatonic behaviour) and ‘negative symptoms’ (low mood and motivation) (APA, 2013). Cognitive deficits have not been included in new diagnostic criteria (APA, 2013; Bora, Yücel, & Pantelis, 2010). Nevertheless, difficulties with cognitive functioning are noted in many individuals with a diagnosis of schizophrenia, with performance estimated at one to two standard deviations below population norms (Keefe & Harvey, 2012). Significantly, cognitive impairment is one of the best predictors of everyday functioning (Bowie & Harvey, 2006).

194 The precise nature of cognitive impairment varies in depiction across studies (Keefe & Harvey, 2012). The Measurement and Treatment Research to Improve Cognition in Schizophrenia project recently agreed on a working set of areas of functioning most affected, reviewed briefly here: working memory, attention/vigilance, verbal learning and memory, visual learning and memory, reasoning and problem solving, speed of processing and social cognition (Green, Nuechterlein et al., 2004; Keefe & Harvey, 2012; Nuechterlein et al., 2004). Research on working memory—a system of short-term information storage and manipulation (Forbes, Carrick, McIntosh, & Lawries, 2009)—is complicated by working memory’s range of definitions. Meta-analyses include measures of all hypothesized working memory domains, such as Baddeley and Hitch’s (1974) verbal, visuospatial and central executive domains. Lee and Park (2005) found significant impairments on all working memory tasks in people with a diagnosis of schizophrenia, with no significant differences between domains. Forbes et al. (2009) also report deficits compared with healthy controls across these working memory domains. Attention—towards environmental stimuli—may be under executive control or automatic in the absence of external stimuli. Attentional impairments are commonly found in Trail Making Task performance compared with healthy controls (Heinrichs & Zakzanis, 1998; MesholamGately et al., 2009), and the Continuous Performance Task provides evidence for sustained attention difficulties (Heinrichs & Zakzanis, 1998; Mesholam-Gately et al., 2009). As regards verbal learning and memory, MeshalomGately et al. (2009) found significant effects for delayed verbal memory and list learning, supporting the hypothesis of impaired explicit memory. Studies using verbal fluency tasks, which required word generation within semantic clusters, have provided some evidence for impaired semantic abilities (Dickinson, Ramsey, & Gold, 2007; Holthausen et al., 2007; Meshalom-Gately et al., 2009). However, studies using semantic memory tasks have shown only small effect sizes in people with a diagnosis of schizophrenia (Doughty & Done, 2009). Tasks measuring visual learning and memory difficulties are less consistent in their results (Heinrichs & Zakzanis, 1998). Nevertheless, people with a diagnosis of schizophrenia have been found to perform worse than controls on visual recall tasks (Toulopoulou et al., 2003; Tracy et al., 2001). Reasoning and problem solving are understood to be managed by the executive system (Keefe & Harvey, 2012), which directs voluntary, controlled behaviour towards internally driven aims (Norman & Shallice, 1986). General evidence of a deficit in executive processes has been found using the Wisconsin Card Sort Test (Polgar et al., 2010). Joshua, Gogos, and Rossell (2009) found evidence for impairment of response inhibition, a subcomponent of Copyright © 2013 John Wiley & Sons, Ltd.

H. Wood et al. executive functioning, using the Hayling Sentence Completion Task (Burgess & Shallice, 1997). Tasks measuring processing speed—time to process information—such as digit-symbol coding, have also provided evidence for impairments in people with psychosis compared with healthy controls (Dickinson et al., 2007; Mesholam-Gately et al., 2009). Finally, difficulties with social cognition include poor Theory of Mind (ToM) and metacognition. ToM is understood as the ability to hold in mind what another person is saying and understand what their thoughts might be (Premack & Woodruff, 1978). Bora, Yücel, and Pantelis (2009) and Sprong et al. (2007) found large effect sizes for ToM performance in schizophrenia on a ‘false belief task,’ as well as using other paradigms. Metacognition can be described as the reflexive ability to think about one’s own thoughts, affecting a person’s ability to use memory, for example, or select other strategies where necessary (Wykes & Reeder, 2005). Many people with a diagnosis of schizophrenia experience impairment in this area (Moritz & Woodward, 2007; Quiles, Prouteau, & Verdoux, 2013).

Cognitive Impairment: Impact on Functioning Cognitive impairment has a significant association with impaired quality of life (Yamauchi et al., 2008). Much research focuses on the impact of cognitive impairment on social and work functioning. However, the connection between cognitive impairment and social and work functioning is not universal: combined measures of neurocognitive functioning have been shown not to predict interpersonal functioning (Holthausen et al., 2007) nor to explain greater variance than symptomatology on combined measures of quality of life and days worked (Perlick et al., 2008). Aspects of social cognitive functioning (ToM and metacognition) are suggested to be mediators in the relationship between neurocognition and social functioning (Couture, Granholm, & Fish, 2011; Lysaker et al., 2010). However, the definition of social functioning and its measurement varies across these studies (Cohen, Forbes, Mann, & Blanchard, 2006; Yager & Ehmann, 2006), making findings hard to summarize or compare. As regards work, poorer executive functioning has been linked to unemployment (McGurk & Meltzer, 2000) and worse functioning at work (Holthausen et al., 2007), including personal presentation, work quality and cooperativeness (Bell & Bryson, 2001). Cognitive functioning has also been found to better predict work capacity (Christensen, 2007) and employment status (Kaneda, Jayathilak, & Meltzer, 2009) than other psychotic symptoms, with verbal working memory being a particularly strong predictor (Kaneda et al., 2009; Vauth et al., 2005). However, this relationship is not necessarily causative, since negative symptoms and education may also play a role (McGurk & Clin. Psychol. Psychother. 22, 193–207 (2015)

Subjective Experience of Cognitive Impairment Meltzer, 2000). As with social functioning, there is also no standard agreement of what ‘work functioning’ consists of across studies.

Cognitive Impairment: Treatment Current treatment for cognitive impairment includes medication, without conclusive outcomes (Mishara & Goldberg, 2004). Cognitive remediation therapy (CRT)—rehabilitating cognitive functioning through tasks exercising cognitive functioning areas—has had some success (McGurk et al., 2007; Wykes et al., 2011). However, little is known about service-users’ own coping strategies, possibly limiting the development of interventions.

Limits to Understanding Cognitive Impairment Knowledge of cognitive impairment in the context of schizophrenia, its impact on functioning and appropriate treatment or support remain limited. Although there is a growing body of evidence derived from empirical studies, important information may have been missed (Strauss, 1989). Confounding factors, such as medication, may influence results of neurocognitive assessments (Lee & Park, 2005; Stip, 2006). Moreover, measurement of cognitive functioning is limited methodologically by assumptions about tests’ comparability (Bentall, 2003), repeatability (Kremen et al., 2000), specificity (Forbes et al., 2009; Lee & Park, 2005) and ecological validity (Gioia & Brekke, 2009). Studies measuring separate areas of functioning also assume that it is possible to know what each task measures and that they measure discrete areas of functioning (Forbes et al., 2009; Lee & Park, 2005; Mesholam-Gately et al., 2009). In contrast, studies on cognitive impairment in other contexts have adopted qualitative methodologies to enhance understanding of individuals’ subjective experiences, including ways of coping. Qualitative studies on traumatic brain injury have yielded information on changing friendships (Lefebvre, Cloutier, & Josee Levert, 2008; Roscigno & van Liew, 2008), self-identity (Levack, Kayes, & Fadyl, 2010b; Muenchberger, Kendall, & Neal, 2008), selfpreservation (Shorland & Douglas, 2010) and recovery (Levack, Kayes, & Fadyl, 2010a), including returning to work (Soeker, 2011). Similar studies on the experience of dementia enhance understanding of anxiety and coping (Qazi, Spector, & Orrell, 2010), managing changes to one’s sense of self (Pearce, Clare, & Pistrang, 2002) and the impact of dementia on intimacy and sexuality (Davies et al., 2010). Qualitative approaches have also elucidated the impact of cognitive change for people who have had chemotherapy for cancer (Boykoff, Moieni, & Subramanian, 2009; Munir et al., 2011) and for people who have multiple sclerosis (Myers, 2012; Shevil & Finlayson, 2006). Additionally, coping strategies have been uncovered by interviewing Copyright © 2013 John Wiley & Sons, Ltd.

195 students with learning disabilities (Barga, 1996; Givon & Court, 2010; Karande, Mahajan, & Kulkarni, 2009). Finally, exploring the consequences of cognitive change for people with epilepsy reveals the impact of cognitive changes on self-esteem and views of the future (Gauffin, Flensner, & Landtblom, 2011). The breadth of such qualitative studies, and the limitations of extant quantitative literature, raise questions regarding the gaps in our understanding of cognitive impairment in psychosis, particularly individuals’ lived experiences, the impact of cognitive impairment and ways in which individuals cope. Research into cognitive functioning in psychosis began with patients’ experiences (Bleuler, 1911/1950; 1924/ 1976; Kraeplin, 1910), but early qualitative studies (Freedman & Chapman, 1973; McGhie & Chapman, 1961; McGhie, Chapman, & Lawson, 1964) lack methodological rigour (Elliott, Fischer, & Rennie, 1999). These studies have not been revisited, despite calls to look at subjective coping methods to enhance treatment protocols (Gioia & Brekke, 2009). Two recent studies have interviewed professionals, who note that people with psychosis ‘really have a hard time with basic daily function, such as organizing their apartment … cooking … managing finances,’ and who suggest that difficulty with cognitive functioning is the ‘major reason people couldn’t return to work’ (Bromley, 2005, p. 956; Bromley, 2007). However, no research exists into the experience of people with psychosis of cognitive impairment, possibly limiting interventions and recovery. This gap persists, despite qualitative methodologies being used to investigate other experiences related to psychosis: stigmatization, delusions, hearing voices, group therapy and social relationships (Knight, Wykes, & Hayward, 2003; Knudson & Coyle, 2002; MacDonald, Sauer, Howie, & Albiston, 2005; Newton, Larkin, Melhuish, & Wykes, 2007; Rhodes & Jakes, 2000).

OBJECTIVES This study aims to enrich understanding of cognitive difficulties in psychosis, through gathering information about subjective experiences. The study aims to answer the following questions: (1) what difficulties with cognitive functioning do people with psychosis (the participants) experience? (2) How are these difficulties perceived and understood by participants? (3) How do participants respond to these difficulties? (4) How do participants perceive others’ views of these difficulties?

METHOD Ethical Review Ethical approval was obtained from a National Health Service (NHS) Research and Ethics Committee. Clin. Psychol. Psychother. 22, 193–207 (2015)

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196 Table 2.

Participants Eleven participants were purposively recruited from mental health teams in a suburban NHS Trust to meet the aim of having eight final participants (Table 1) (Smith, Flowers, & Larkin, 2009). Two of these initial 11 participants (one man and one woman) did not meet the assessment inclusion criterion, and another woman lost ongoing capacity to consent. Names have been altered and identifying information withheld to preserve anonymity. Inclusion criteria were the following: diagnosis of schizophrenia (World Health Organization, 2005), aged 18–65 years, assessed presence of cognitive impairment and good spoken English. Exclusion criteria were the following: evidence of possible learning disability (IQ

The Experience of Cognitive Impairment in People with Psychosis.

Cognitive impairment has been widely studied in people with psychosis. However, research is lacking into the subjective experience of cognitive impair...
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