Insight and Personal Narratives of Illness in Schizophrenia
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Psychiatry 65(3) Fall 2002 197 Insight and Personal Narratives of Illness in Schizophrenia PAUL H. LYSAKER,CATHERINE A. CLEMENTS,CYNTHIA D. PLASCAK-HALLBERG, STACY J. KNIPSCHEER, AND DUSTIN E. WRIGHT Insight in schizophrenia tends to be assessed as the degree to which one possesses specific knowledge. It therefore often fails to account for the fact that awareness of illness is an inextricable part of a personal narrative and may be incoherent or incomplete for many different narrative reasons. Accordingly, we have developed a means of eliciting narratives of illness: the Indiana Psychiatric Illness Interview, and a method for rating the coherence of those narratives: the Narrative Coherence Rating Scale. In this article we describe these methods and present data on their reliability and validity in a study of the illness narratives of 33 outpatients with schizophrenia or schizoaffective disorder. Results suggest our measures possess sufficient internal consistency and good to excellent interrater reliability. Addition- ally, as predicted, our measures of narrative coherence were significantly correlated with traditional measures of insight and with measures of cognitive impairment and hopelessness gathered earlier. Relative to persons with other psychiat- to as “poor insight,” are commonly seen as ric disorders, persons with schizophrenia spec- clinically significant because of their links with trum disorders are often unaware of what poorer treatment compliance (Bartko, Herc- others readily perceive as their symptoms, psy- zeg, and Zador 1988; Cuffel, Alford, Fischer, chosocial deficits and/or need for rehabilita- and Owen 1996; Smith et al. 1999), clinical tion or treatment (Amador, Strauss, Yale, and outcome (Schwartz 1998), social function (Ly- Gorman 1991; Amador 1995; David 1990). saker, Bell, Bryson, and Kaplan 1998a), and These deficits in awareness, generally referred response to vocational rehabilitation (Lysaker, Bell, Milstein, Bryson, & Goulet 1994, Ly- saker, Bryson, & Bell 2002). Additionally, Paul H. Lysaker, PhD, is a clinical psycholo- some degree of unawareness of one’s own gist at the Roudebush VA Medical Center and the mental state is also thought to be a significant Indiana University School of Medicine. Catherine barrier to the development of a working rela- A. Clements, MS, is a research assistant, Cynthia D. Plascak-Hallberg, MS, is a research assistant, and tionship with mental health professionals. Stacy J. Knipscheer, MSW is a social worker at the To date, research on the nature of poor Roudebush VA Medical Center. Dustin E. Wright, insight in schizophrenia has tended to evolve MS, is a research assistant at Indiana University— out of one of two theoretical perspectives. Purdue University, Indianapolis. First, one arm of the literature has emphasized Research for this article was funded by the Institute for Psychiatric Research, Indiana Univer- how unawareness of illness may result from sity School of Medicine, Indianapolis, Indiana, cognitive impairments. Various authors have USA. suggested that, paralleling observations about Address correspondence to Paul Lysaker, unawareness of deficits in neurological disor- PhD, Day Hospital 116H, 1481 West 10th St., ders, persons with schizophrenia may fail to Roudebush VA Medical Center, Indianapolis, IN 46202; E-mail: Lysaker.Paul_H_PHD@Indian grasp the breadth or presence of their illness apolis.va.gov because of generalized impairments in the 198 INSIGHT AND PERSONAL NARRATIVES OF ILLNESS IN SCHIZOPHRENIA ability to think in an abstract and flexible man- treatment y”) or if he or she endorses certain ner (Amador, Strauss, Yale, and Gorman concrete beliefs (e.g., “I accept that I have z,” 1991). Supporting research includes findings or “I am different from others because I suffer that poor insight concurrently and prospec- from q”). For example, the “Self-appraisal of tively predicts poorer performance on neuro- Illness Questionnaire,” a questionnaire used psychological tests of executive function to assess insight via self-report, measures in- (Lysaker & Bell 1994; 1998b; Marks, Fas- sight by asking participants to rate the extent tenau, Lysaker, and Bond 2000; Mohamed, to which they agree or disagree with state- Fleming, Penn, and Spaulding 1999; Young, ments which endorse views that they are ill Davila, and Scher 1993; Young, Zakzanis, and (Marks, Fastenau, Lysaker, and Bond 2000). Baily 1998). Conversely, impairments in exec- Similarly, the Scale to Assess Unawareness of utive function have been found to predict the Mental Disorders (SUMD; Amador et al. intransigence of deficits in insight (Lysaker 1995), a widely used interviewer rating scale and Bell 1995). for insight, calls for an interviewer to deter- From a second perspective, however, it mine what symptoms are present and then has been suggested that poor insight may re- decide whether the participants’ verbaliza- flect an elective denial of painful realities tions contain a sufficient understanding of the (Frese 1993). It has been proposed that un- phenomena and their consequences. awareness of illness may be an adaptive way The problem with these approaches is of avoiding a role that is stigmatizing (Corri- that awareness of any type of illness is not gan and Penn 1999; Wahl and Harman 1989; merely an isolated cognition, but is also an Warner, Taylor, Powers, and Hyman 1989). element of a larger personal and narrative un- Evidence supporting these views includes derstanding of one’s life (Kleinman 1988). findings that acceptance of the label “mentally Awareness or denial of illness is a story embed- ill” predicts more recalcitrant psychosocial ded in a larger life story which is, by necessity, deficits (Thompson 1988) and greater despair inextricably linked to a variety of past suc- (Schwartz 2001). Other studies have found cesses and failures as well as to future dreams that gains in insight often have a sobering and expectations (Davidson and Strauss 1995; effect on persons with schizophrenia, leading Kirmayer and Corin 1998; Lysaker and France to increases in levels of despair and/or decre- 1999; Williams and Collins 1999). ments in mood elevation (Carroll et al. 1999). But does it really make a difference if Thus, perhaps unawareness of illness may one sees insight as a singular cognition as serve a protective function in the same way opposed to an element of narrative? By con- that some positive symptoms are thought to ceptualizing insight as an isolated piece of shield ill persons from low self-esteem (Black- knowledge and not as a story bound to a life’s wood, Howard, and Bentel 2001). Lastly, a trajectory, we reason that it is possible to ne- recent study has suggested that unawareness glect the fact that an understanding of illness of symptoms may be linked to a greater prefer- may be incomplete for any combination of ence for positive reappraisal, which is a coping different reasons. As an illustration, consider strategy in which stressors are recast as posi- person A., who presents a minimalist story tive events (Lysaker, Bryson, Lancaster, Ev- of his/her illness. Perhaps (s)he says, “I have ans, & Bell in press). nerves” and cannot give any details and is not While the work of both of these per- sure of what (s)he should be doing to “calm spectives has been instructive, we would sug- his/her nerves.” Certainly A. might be said to gest that both views have tended to share a have limited insight. For one, his/her story of similar methodological and conceptual limita- illness lacks sufficient details about symptoms, tion. In particular, both arms have tended to treatment needs and the consequences of the view a person as “having” insight if he or she disorder. Alternatively, consider person B., can demonstrate acceptance of specific facts whose story of schizophrenia contains many (e.g., “I know I have symptom x,” or “need historical details of illness, but does not logi- LYSAKER ET AL. 199 cally connect those details. (S)he might also ered researcher ratings of cognitive symptoms be said to have limited insight because, with of illness using the Positive and Negative Syn- a lack of logical connections, no clear picture drome Scale (Kay, Fizszbein, and Opler 1987), of what is wrong or should be done emerges. and self-reports of despair or hopelessness. Lastly, consider person C., whose story per- We predicted that in general, lesser ratings of haps contains a sufficient number of logically coherence would be related to greater levels connected details but lacks plausibility overall. of cognitive symptoms and greater reports of For instance, maybe (s)he says that (s)he hears hopelessness. Toinsure that the NCRS scores voices because “the reincarnation process has were not merely a reflection of verbal ability gone awry.” Thus, (s)he might be said to have or gross symptomatology, we lastly correlated poor insight. However, in this instance it is those scores with the Vocabulary subtest of because his/her story strikes others as implau- the WAIS-III (Wechsler 1997), a measure of sible and is unlikely to receive consensual vali- verbal intelligence, and the Positive and Neg- dation from his/her community. Our point is ative Component scores of the PANSS. that traditional ratings of insight gathered from self-report or standardized interviews for persons A., B. and C. might give identical METHODS insight scores despite the fact that each per- son’s limited understanding of his/her illness Participants arises for very different narrative reasons. Thus, we propose that current assess- Thirty-three males with DSM-IV diag- ments of insight may be limited because they noses of schizophrenia (n = 23) or schizoaffec- fail to account for a) that lack of insight repre- tive disorder (n = 10) were recruited from an sents an incomplete or alternative understand- outpatient psychiatry clinic at a Midwestern ing of illness as contained within a story of VA Medical Center. The mean age was 47.2 that illness, and b) how a story of illness may (SD = 9.01) and mean education was 13.8 (SD = be incomplete or not understandable to others 4.29) years.