Original Article Understanding the trauma of first-episode psychosis

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1 bs_bs_baer First Impact Factor released i Jue 2010 ad ow listed i MEDLINE! Early Itervetio i Psychiatry 2015; 9: doi: /eip Origial Article Uderstadig the trauma of first-episode psychosis Jae E. Dukley, Gle W. Bates ad Bruce M. Fidlay Abstract Aim: This study examied the distress of first-episode psychosis (FEP) beyod the acute episode. It focused o how people uderstad the experiece of FEP ad its egative impact ad how this relates to the traumageic pheomea. supported a coceptualizatio of recovery from FEP withi a broad trauma framework. The traumatic ature of FEP was foud to be exteded beyod the acute episode ad was ot liked to symptoms of post-traumatic stress disorder (PTSD) but icluded impact o idetity, relatioships ad worldview. Faculty of Life ad Social Scieces, Swibure Uiversity of Techology, Hawthor, Victoria, Australia Correspodig author: Dr Jae E. Dukley, Oryge Youth Health, Locked Bag 10, Parkville, Vic. 3052, Australia. jae.dukley@mh.org.au Received 25 Jauary 2013; accepted 22 September 2013 Methods: This research was a logitudial qualitative study icludig iterpretative pheomeological aalysis of iterview data. Te people who had experieced FEP were iterviewed 3 6 moths followig their psychotic episode (time oe) ad agai 3 moths after their iitial iterview (time two). Cliicias ad sigificat others were iterviewed at time two. Results: Iterpretative pheomeological aalysis of the iterview data Coclusios: The diagosis of PTSD does ot appear to capture all aspects of the distress of FEP. Traumageic distress appears explaied by icorporatig a rage of egative emotios, viewig the impact of FEP as ogoig rather tha cotaied to the acute episode, ad recogizes disruptio of the idividual s views of the self, others ad the world. Key words: first-episode psychosis, iterpretative pheomeological aalysis, logitudial, trauma. INTRODUCTION First-episode psychosis (FEP) is defied as the first treated episode experieced by a idividual i their lifetime. 1 As such, FEP is a psychiatric crisis which produces psychological disruptio well beyod the active period of psychosis. 2,3 Maagemet of the potetial traumatic effects of psychiatric symptoms ad the first experiece of acute itervetio is, therefore, especially importat i treatmet outcome. 4 I some research, it has bee established that the disruptive experiece of FEP ca be severe eough to precipitate post-traumatic stress disorder (PTSD) Rates of trauma symptoms withi the first 18 moths followig FEP rage betwee 35% ad 66%. 3,8,9,11,12 However, the relatioship betwee PTSD ad psychosis appears complex ad ucertai. 13,14 Studies examiig the traumatic impact of acute treatmet ad psychotic symptoms yield icosistet results. 3,7,8,15,16 A pheomeologically pure diagosis of PTSD is rare 8 because it is difficult to idetify PTSD as a result of psychosis usig the full diagostic criteria. 3 Exploratio of methodological issues ad the role of participat characteristics has ot provided clarificatio of these issues. 3,17 Further, cocetratig o positive symptoms ad acute treatmet experieces as precipitats of PTSD igores the other disruptive effects of trauma resposes ad the rage of resposes tha ca be exhibited. 3,8 It is therefore questioable whether a focus o the diagostic criteria of PTSD is the most useful approach i uderstadig the traumatic impact associated with FEP Wiley Publishig Asia Pty Ltd 211

2 The trauma of first-episode psychosis The questio of whether the experiece of psychosis ca precipitate PTSD fits withi a broader debate about the ature of the diagostic category. 13,18 To fulfil the DSM-IV-TR (Diagostic ad Statistical Maual of Metal Disorders, Fourth Editio, Text Revisio) criteria for PTSD, 19 a idetifiable ad objective stressor eeds to be defied regardless of the potetial trauma symptoms preset. 20 DSM-IV-TR Criterio A 1 states that the perso experieced, witessed, or was cofroted with a evet or evets that ivolved actual or threateed death or serious ijury, or a threat to the physical itegrity of self or others (pp ). 19 Recetly, it has bee argued that Criterio A 1 is too arrow ad this is mirrored i the literature o the trauma of FEP. For istace, Criterio A 1 fails to ackowledge perceived or real threat to psychological itegrity i additio to perceived threat to physical itegrity, 8,13,21 eve though the importace of the subjective experiece has bee demostrated. 5,22 Yet, a prospective study o the relatioship betwee appraisals of threat from psychotic symptoms ad beliefs ad subsequet PTSD amog FEP participats foud that oly a miority experieced PTSD. The authors argued it was difficult to determie whether or ot psychotic symptoms were ideed traumatic or superseded by other more distressig aspects of the experiece. They also suggested that it might be time to assess appraisals durig the immediate aftermath of psychosis. This they idetified as 3 6 moths followig the episode ad referred to as the psychological adjustmet phase. It is after this period of time that the perso is likely to have gaied isight. 13 Focusig o PTSD criteria to explai the traumageic distress of FEP meas that the rage of resposes followig this experiece remais poorly uderstood. 3,23 Criterio A 2 i the DSM-IV-TR states that the perso s respose to the trauma must iclude itese fear, helplessess, or horror (pp ) as well as persistet avoidace of traumarelated stimuli, hyperarousal ad re-experiecig of the evet. 19 Yet, idividuals report umerous trauma resposes ad ot always these emotios 24,25 ad differet traumas produce differet emotioal resposes. 24,26 The trauma of FEP ca produce umerous psychological reactios beyod what would typically be classified as trauma symptomatology. For istace, followig psychosis, studies have idetified trauma resposes such suicidal ideatio, 3 loss, ad etrapmet, humiliatio, defeat, hopelessess ad axiety. 27 Uderstadig the full rage of egative emotios is cetral to the coceptualizatio of adjustmet ad adaptatio to FEP. 27 FEP typically occurs whe the idividual is developig a sese of self ad idetity, formig relatioships with others ad orietig themselves to the world. 2,28 Because of this, the traumatic ature of FEP ca shatter oe s beliefs about the self, others ad the world 2 ad have a profoud effect o the idividual i the short ad log term. 3 Research has show that future aspiratios ad social acceptace ca be egatively impacted 3,29,30 ad self-disitegratio has bee associated with the trauma of psychosis. 31 Further, uresolved psychotic symptoms ad distressig treatmet experieces ca still occur. However, PTSD is a diagosis that occurs after a traumatic evet ad views the traumatic experiece as discrete. 18 Therefore, over-focusig o a diagosis of PTSD is problematic because the impact of the ogoig distress is igored. The curret study was part of a broader ivestigatio aimed at developig a comprehesive uderstadig of the trauma of FEP ad subsequet recovery ad adaptatio outcomes ad processes. The aim of this study was to explore how people uderstad the experiece of FEP ad its egative impact. A i-depth pheomeological approach of iterpretative pheomeological aalysis (IPA) was adopted. IPA is directed at uderstadig the meaigful experiece of idividuals, as well as icorporatig a iterpretative compoet, which cotextualizes ad makes sese of the participat s experieces from a psychological perspective IPA focuses upo the perso i cotext ad how the idividual uderstads ad makes sese of the pheomea beig examied (FEP) with regard to their relatedess to ad egagemet with it. IPA does ot simply describe its results i terms of subjectivity, but recogizes that coclusios ca also be made about the objective reality or the pheomea beig studied. 34 IPA ackowledges that uderstadig people s experieces is doe via the researcher s egagemet with ad iterpretatio of participats accouts. 35,36 This aalysis is iformed by distict theoretical costructs ad directed towards aswerig predetermied research questios. 34 The researcher s iterpretatio is see as ecessary i formig a uderstadig of the participats experieces. 36 This approach permitted a broad uderstadig of the trauma respose ot restricted to PTSD. This study was logitudial ad FEP participats were see 3 6 moths after their acute episode (time oe) ad 3 4 moths after the first iterview (time two). Iterviews with sigificat others ad cliicias were also coducted for the purpose of triagulatio Wiley Publishig Asia Pty Ltd

3 J. E. Dukley et al. METHOD Participat characteristics Seve me ad three wome, aged betwee 22 ad 28, who had experieced FEP 3 6 moths earlier were recruited from the Alfred Psychiatric Outpatiet Services ( = 2) ad Oryge Youth Health ( = 8), Melboure, Australia. Eight sigificat others over 18 years old also participated i this research: four mothers, two log-term girlfrieds, oe father ad a previous log-term boyfried. Two participats did ot have a sigificat other who could be iterviewed. Oe family member was o-eglish speakig ad the secod idividual declied to participate due to work commitmets. Te cliicias who kew participats well were iterviewed for the purpose of triagulatio. Nie cliicias were case maagers who had a backgroud i psychology, psychiatric ursig, occupatioal therapy or social work. Oe psychiatrist was iterviewed. Table 1 shows the type of acute itervetio participats received durig their first-episode of psychosis. Most participats were see by a crisis assessmet team ad had a ipatiet admissio. Three participats were hospitalized as ivolutary cliets ad oe participat was iitially volutary but later made ivolutary durig her admissio. With regard to outpatiet treatmet, oly oe participat was o a Commuity Treatmet Order. Data o participats history of trauma ad other potetially sigificat life experieces are preseted i Table 2. Six FEP participats had experieced a trauma cosistet with Criterio A, whereas ie had experieced other highly stressful evets. Two participats did ot have a history of trauma or sigificat life experieces ad four participats had experieced multiple evets. Whe assessed usig the Mii-Iteratioal Neuropsychiatric Iterview TABLE 1. Acute treatmet experiece by FEP participats Acute treatmet Police ivolvemet durig acute treatmet 1 Hospital oly 1 Crisis assessmet team oly 3 Hospital ad crisis assessmet team 5 Nil acute treatmet ad maaged by the commuity 1 treatmet team Note. = 10, the total umber of acute treatmet experieces is 11 because oe participat experieced police ivolvemet as well as aother form of itervetio. FEP, first-episode psychosis. (M.I.N.I.), five participats said they had experieced or witessed a traumatic evet as defied by Criterio A of the DSM-IV-TR. 19 However, these Criterio A evets were ot amed by participats ad of these five participats oly oe perso fulfilled a diagosis of PTSD. Therefore, it is ukow whether the evets reported i the M.I.N.I. assessmet relate to the Criterio A evets reported i Table 2. Diagoses were cofirmed by examiatio of medical files ad the admiistratio of the M.I.N.I. The M.I.N.I. is a short structured diagostic iterview for the DSM-IV 37 ad The Iteratioal Classificatio of Diseases. 38 The M.I.N.I. has excellet iterrater reliability ad correspods well to the stadard istrumet Composite Iteratioal Diagostic Iterview for the ICD-10 ad the Structured Cliical Iterview (SCID-P) for the DSM-III-R. 39 The DSM-IV versio was used i the curret study. 40 Table 3 shows the participats psychotic diagoses overtime. All had experieced FEP i their lifetime. The M.I.N.I. revealed that four participats TABLE 2. Trauma history ad sigificat life experieces Experieces Criterio A trauma Physical assault 1 Childhood sexual abuse 1 Witessed violece 1 Death of a fried (occurred durig the study) 1 Death of a family member 2 Other sigificat life evets Bullied durig school 4 Parets separatio 2 Family members with a metal illess 2 Birth complicatios 1 TABLE 3. Psychosis diagoses of the sample Psychotic disorder Prior history Acute episode Time oe Time two Psychotic symptoms 1 First-episode psychosis Schizophreiform psychosis Schizoaffective disorder Major depressive disorder with psychotic features Drug-iduced psychosis Note. = 10, the total umber of diagoses durig the acute episode is 12 because two idividuals psychotic diagoses chaged durig their acute phase Wiley Publishig Asia Pty Ltd 213

4 The trauma of first-episode psychosis had a curret psychotic disorder at time oe. Two participats psychotic diagoses chaged durig their acute phase. The Positive ad Negative Sydrome Scale (PANSS) was admiistered to measure the severity ad quality of symptoms. PANSS ratigs are based o iformatio pertaiig to the previous week ad the measure is suitable for logitudial assessmet. 41 PANSS items iclude 18 adapted items from the Brief Psychiatric Ratig Scale 41,42 ad 12 adapted items from the Psychopathology Ratig Scale. 41,43 The cliical implicatios of the PANSS scores ad cut-off scores were determied by a previous study ivestigatig the measure. 44 These scores are preseted i Table 4. Iformatio used to rate the PANSS items came from the iterview itself, file otes ad discussios with cliical staff. The mea scores derived from the PANSS ratigs at times oe ad two decreased over time (see Table 5). At times oe ad two, the average score o the egative scale was slightly higher tha o the positive scale. Accordig to the mea total score, FEP participats were mildly uwell at times oe ad two. Procedure Ethics approval was obtaied from the research ad ethics committees at the Alfred Hospital, Melboure Health, ad Swibure Uiversity of Techology. All cliets who had experieced FEP ad were cosidered able to reflect o their experieces ad provide iformed coset were eligible for the study. They were cotacted about the study via their treatig cliicia. FEP participats ad sigificat others provided iformed coset. FEP participats were iterviewed 3 6 moths after their acute episode (time oe) to esure some resolutio of the episode, ad agai 3 4 moths after the first iterview (time two). Three to six moths after the acute episode is also cosidered early recovery 45 ad a period of adjustmet ad greater uderstadig. 13 Sigificat others ad cliicias were iterviewed at time two ad o average 7 days after FEP participats iterviews. Demographics ad iformatio about participats metal health issues were collected from files at times oe ad two. At time oe, FEP participats partook i the M.I.N.I. ad PANSS assessmets ad oe semistructured iterview. At time two, the PANSS was re-admiistered alog with a secod semistructured iterview. Iterrater reliability was obtaied o 50% of the cliical assessmets. Agreemet was over 90% ad the few istaces of disagreemet were resolved by discussio. The semi-structured iterview was desiged to be ope eded ad adaptable ad icluded prompts to ivite the iterviewee to egage i a arrative about their experieces of beig uwell. FEP participats iterview schedules were based o a earlier pilot study 46 developed i cosultatio with a cliical psychologist ad a psychiatrist at the Alfred Psychiatry Research Cetre. Iterviews with FEP participats ad sigificat others raged from 45 mi to aroud 3 h. The iterview schedule had two parts: (i) uderstadig the experiece of FEP ad treatmet; ad (ii) the ogoig impact of the psychotic episode. Participats were asked to cosider positive ad egative ad helpful ad uhelpful chages. Iterviews with sigificat others mirrored the FEP participats iterview protocols for triagulatio. TABLE 4. Rage of scores associated with symptomatic status Not uwell Borderlie uwell Mildly uwell Moderately uwell Markedly uwell Severely uwell Uder ad over TABLE 5. Scores o the PANSS Time oe Time two M SD Rage M SD Rage Total score Positive scale Negative scale Geeral psychopathology scale Positive ad Negative Sydrome Scale Wiley Publishig Asia Pty Ltd

5 J. E. Dukley et al. Sigificat others commeted o questios i relatio to their loved oes. The short semi-structured iterview developed for FEP participats cliicias gaied their perspective o their cliets experieces of FEP, treatmet ad ay chages they may have observed. IPA IPA is flexible ad is uderstood as a perspective from which to approach aalysis rather tha a distict method. The first aim is to approach the data tryig to uderstad the participat s world ad describe what it is like, with a focus o a specific experiece such as FEP. The objective is to produce a coheret, third-perso, psychologically iformed accout, which aims to get as close to the participat s view as possible. The a more overtly iterpretative aalysis is coducted, which positios the iitial descriptio i relatio to a wider cotext. Critical ad coceptual commetary o the participat s meaig makig is provided here. 34 Guided by the IPA approach, thematic aalysis was coducted usig verbatim trascripts i cojuctio with the researcher s iterpretatio of the iterviews. Each FEP participat s two iterviews were read successively to get a sese of the idividual s overall experieces. Iterviews were aalysed i groups (i.e. FEP participats, the sigificat others ad the cliicias) to give a sese of each group s perspective prior to makig comparisos across groups. This also allowed for the iitial experiece of FEP to be uderstood before obtaiig other people s perspectives. All iterviews received repeated ispectio. Iitially, ufocused otes reflectig the ivestigator s iitial thoughts ad observatios were produced. Keywords ad seteces were the highlighted ad grouped ito three broad areas: egative aspects of FEP, positive features of FEP, ad recovery processes ad outcomes. Next, keywords ad seteces withi these three broad areas were clustered ito collective theme categories. The researcher looked at commo ad uique categories for each idividual to cluster them as thematic uits ad idetify aomalies. Coectios betwee thematic uits were made to establish themes. Rereadig ad reorgaizig themes esured that the clusterig of thematic uits made sese i relatio to the origial trascripts ad all data were take ito accout. Aalysis was completed oce all that was shared by the participats was captured i the themes. Defiitios of themes were developed ad traslated ito the researcher s words through careful examiatio of participats quotes. The researcher also drew o theory ad research o the trauma of psychosis 2,3,27,29 31 to develop theme defiitios. Iterviews with family members ad cliicias were aalysed to geerate aother dataset that gave isight ito the FEP participats experieces. Reliability ad validity Codig of the iterview data ad theme defiitios sought agreemet betwee the ivestigator, secod author ad a idepedet examier. Cross-codig provided a iitial agreemet rate of approximately 80%. Disagreemets were resolved through discussio ad clarificatio of themes. A idepedet audit of the trascribed data established the itegrity of the research fidigs. The secod iterview with FEP participats acted as a cofirmatio of the perso s experieces. Iterviews with sigificat others ad cliicias allowed for triagulatio aalysis to validate themes. RESULTS The experiece of psychotic symptoms raged from beig deeply distressig to merely a aoyace. Cetral to the distress associated with the acute episode was the impact of FEP o the perso s life, well-beig, ad view of self, the world ad others. Durig hospitalizatio, co-patiets, staff ad medicatio were foud to cotribute to distress, ad distress associated with acute treatmet was sometimes emeshed with psychotic symptomatology. For istace, symptoms could cause suspiciousess ad fear of staff ad co-patiets. Although it was less cocerig for people treated i the home, iteractios with staff ad medicatio side effects could still be disturbig. However, two participats viewed their symptoms as both a source of upset ad of comfort ad improvemet, whereas oe perso reported that his symptom experieces were etirely positive. Further, some participats cosidered the beefits of treatmet. Iterestigly, the egative impact of FEP wet beyod the acute episode to iclude ogoig cosequeces. Six key themes emerged that were related to the distress of the acute episode ad the impact of the illess (see Table 6). Perceived eforced treatmet This theme was defied as beig subject to outside itrusive ad impersoal disciplie, eforced treatmet, ad moitorig. This could lead to feelig agry, fearful, uheard ad disempowered: 2013 Wiley Publishig Asia Pty Ltd 215

6 The trauma of first-episode psychosis TABLE 6. Themes relatig to the distress associated with FEP Themes Subthemes 1. Perceived eforced treatmet 2. Disitegratio 3. Stigma (a) Self-stigma (b) Stigma from others 4. Estragemet 5. Sese of loss ad deficit 6. Recogizig the illess as a ogoig problem FEP, first-episode psychosis. I m my ow perso. You ca t do this.... I was agry at the doctors for lockig me up.... I m ot agry because I have a chemical imbalace. I m agry because stragers who do t kow me have locked me up ad take my freedom... I d gotte locked up ad had my freedom take away for beig me. Disitegratio A perceived lack of cotrol over oe s self ad oe s iteractio with others due to psychotic symptoms was clearly evidet ad cetral to distress durig the acute phase of FEP. The perso s sese of self appeared fragmeted ad could be associated with ambiguity, disbelief, ucotrollability, ad feelig surreal ad discoected from oe s idetity, others ad the world. Oe participat reported, I was doig thigs that I could t cotrol.... whe you re aware of somethig you re doig but you ca t stop it, it burs you. Everythig looked differet as well. Like people looked differet. Ad I guess I was, like thigs souded differet as well. Like... I could hear a police sire... ot a police sire a ambulace ad it just souded I do t kow like ot real, I do t kow like imagie you were i a cartoo or somethig. For some people, the experiece of disitegratio cotiued after the acute episode resolved. I m feelig totally differet like I m ot myself ad that freaks me out... Like the thoughts that I m thikig ad the way that I talk to other people like sometimes it surprise me.... I have o idea what I just said ad what was you kow my face expressio... freak me out ad my thoughts start goig why you kow why, why is that. Stigma The theme stigma related to (i) self-stigma ad (ii) stigma from others. Stigma could be associated with feelig degraded ad embarrassed. Self-stigma was iterally focused ad ivolved egative selflabellig, havig a destructive attitude towards metal illess ad its treatmet, ad believig oe is uappealig to others because of oe s metal illess. I ever used to thik that I was crazy (laugh) util I actually had people comig aroud to the house everyday to make sure I was t dead (laugh)... Frighteig to be hoest, it s ot fu. I hate to thik that I ll ed oe day up i a padded cell with a straight jacket o ot kowig my ame, that s a bit scary. Stigma from others was exterally focused ad associated with beig discredited by people ad society i geeral because of oe s metal illess. Like people just do t uderstad at all ad so, ad people make judgemets o your decisios... so I just do t discuss it with people like if aythig I ll say it s depressio... like o Law ad Order the other day they said, someoe said oh this perso has psychosis ad the the woma to me that meas murder!.... Ad there s eve this club that we were goig to ad it s called psychosis. Estragemet Although evidet durig the acute illess, estragemet was predomiat i the recovery phase. It was associated with feeligs that people did ot uderstad or relate to the illess experiece ad were uable to provide support. This could be the perso s perceptio or idicative of actual behaviour. Commuicatig about the illess was difficult, the perso could feel differet due to the illess, ad treatmet ad/or symptoms could produce isolatio ad discoectio. Before I was uwell I eeded twety hads to cout all my frieds. After beig uwell I ca use two, like people fade away, people drift away, they ca t, they do t either wat to deal with it or they do t uderstad or whe you try to talk to them they do t liste. Sese of loss ad deficit This theme reflected a wide rage of losses associated with differet aspects of the participats lives ad idetity. Losses ad deficits were specific or geeral ad were associated with differet aspects of life or sese of self. The theme was preset durig the acute episode but was most evidet i the recovery phase Wiley Publishig Asia Pty Ltd

7 J. E. Dukley et al. It s chaged me heaps cause ow I m a lot more timid. Not very outgoig. Very shy sort of perso. Lost a lot of cofidece. A lot of people have said I ve chaged physically as well because I ve put o a lot of weight from the treatmet. Recogizig the illess as a ogoig problem Metal health issues ad/or secodary cosequeces were idetified as a ogoig ad edurig difficulty. The illess was viewed as a struggle which required ogoig maagemet. Progress was regarded as slow ad produced a sese of disempowermet ad hopelessess. At the momet I have o cotrol over aythig. The voices have affected me so much. The depressio s affected me so much ad I just feel so powerless to chage it. Cause everythig s happeig so slowly like beig treated... I feel so powerless like I wish I could chage it all i a istat. Triagulatio of the data Sigificat others idetified the experiece of disitegratio ad perceived eforced treatmet i relatio to the acute episode. All themes relatig to the impact of FEP were corroborated by sigificat others except disitegratio. Cliicias did ot cofirm the theme disitegratio or perceived eforced treatmet i relatio to the acute episode. Further, the themes disitegratio ad stigma from others were ot idetified whe cliicias discussed the impact of FEP. Cliicias particularly focused o the theme recogizig the illess as a ogoig problem. DISCUSSION This study demostrates that the traumageic distress of FEP goes beyod the acute episode ad the diagostic criteria of PTSD. Criterio A 1 describes trauma as a discrete evet or evets ad previous research examiig the distress of FEP has adopted this perspective by examiig PTSD as a outcome of the acute episode. 9,10,15 The curret fidigs demostrate, however, that the traumageic distress of FEP is ot cofied to a short period but operates i the loger term, as most themes related to the aftermath of this experiece. The distress associated with FEP was described as edurig ad emerged i themes such as recogizig the illess as a ogoig problem ad sese of loss ad deficit ad so FEP caot therefore be uderstood as a discrete evet. How the experiece of FEP impacts o the idividual s beliefs about, ad experieces of, the self, others, ad the world i the short ad log term appears more relevat to the traumageic distress associated with FEP rather tha the episode itself. This is cosistet with suggestios by other ivestigators that the low rate of PTSD i their study could idicate that other aspects of the experiece may have bee more itesely disruptive tha psychotic symptoms. 13 Moreover, i this study, psychotic symptoms ad acute treatmet were ot the mai focus of distress for the majority of participats ad most oly provided descriptive accouts of these experieces. Criterio A 1 also defies trauma as a idetifiable ad objective evet ad does ot recogize threat to psychological itegrity or perceived threat. Although studies examiig the trauma of FEP have argued for the eed to cosider psychosis as a distressig iteral experiece, most research has objectified the acute episode by focusig o psychotic symptoms ad treatmet experieces as possible precipitators of PTSD rather tha cosiderig the subjective experiece. 7,10,15 Oly two key themes associated with the acute episode were idetified via IPA: disitegratio ad perceived eforced treatmet. Although the cotet of the theme perceived eforced treatmet aligs with previous research demostratig the distress of coercive treatmet, 15 i this study, the source of the distress was perceived helplessess rather tha the specific aspects of the itervetio itself. Similarly, the distress associated with psychosis was ot related to symptoms per se but to the self-disturbace ad irregularities of the self caused by the psychotic symptoms. Rather tha focusig o the objective features of FEP, the themes perceived eforced treatmet ad disitegratio demostrate that the trauma of the acute episode is subjective ad iterally focused. A hallmark of this distress is a sese of loss of cotrol. Although aother study looked at appraisals of threat from psychotic symptoms, post-psychotic PTSD was still ot a major fidig. 13 Iterestigly, i the curret study, the emotioal reactios expected followig a trauma as defied by the PTSD diagostic criteria were also ot strogly evidet. Helplessess was apparet i the themes disitegratio, perceived eforced treatmet, ad viewig the illess as a ogoig problem, ad feelig frighteed was evidet i the theme perceived eforced treatmet. However, itese fear ad horror, as described i Criterio A 2, was ot described i respose to the psychotic episode. Istead, a rage of other egative emotioal reactios to FEP were idetified icludig perceived vulerability, hopelessess, disempowermet, loeliess, discoectedess, ager, 2013 Wiley Publishig Asia Pty Ltd 217

8 The trauma of first-episode psychosis ucotrollability, disbelief, ambiguity, isecurity, ulikeability ad shame. This is cosistet with other research demostratig that idividuals ca develop PTSD without itese fear, helplessess, ad horror, ad istead experiece a rage of other egative emotios such as worry, sadess, guilt, frustratio ad shame. 24,25 However, the classic PTSD symptoms of re-experiecig ad hyperarousal described i criteria B ad D were also ot described by participats i the curret study. The theme estragemet could reflect avoidace as described i Criterio C, yet umbess ad avoidace of stimuli characteristic of PTSD did ot emerge. As participats were iterviewed 3 6 moths followig their acute episode, had PTSD bee a outcome of the trauma of FEP it would have bee clearly established by the. Although post-psychotic PTSD caot be ruled out i uderstadig resposes to FEP, this research suggests that PTSD fails to capture all aspects of the distress of FEP. This may accout for the low prevalece of a pheomeologically pure diagosis of PTSD. Istead, a broader cocept of the traumageic distress of FEP warrats cosideratio, which icludes a rage of egative emotios ad views the impact of FEP as ogoig rather tha cotaied to the acute episode. A key fidig of this research was the impact of FEP o how a idividual views him or herself, others ad the world as demostrated by the themes such as stigma ad estragemet. Disruptio to the sese of self as a result of psychosis is a log-stadig topic i psychiatric literature. 31,47 50 Further, themes such as stigma ad sese of loss ad deficit as well as reactios of hopelessess ad shame have also bee idetified i previous studies. 3,27,30 However, this research exteds these ideas by placig them withi a trauma framework ad idetifyig how they fit together i order to provide a comprehesive uderstadig of the distress associated with FEP. It is argued that these experieces ad reactios are the hallmark of traumageic distress associated with FEP ad ca characterize the traumageic profile for this experiece. The broader uderstadig of traumageic distress that emerged i this study has importat implicatios for treatmet. For istace, the themes idetified by IPA suggest areas of potetial focus i the provisio of psychoeducatio to sigificat others. Sigificat others idetified early all of the themes i the FEP participats iterviews but did ot recogize that the experiece of disitegratio could cotiue after the acute episode. It is possible that it was difficult for sigificat others to idetify the theme disitegratio durig the recovery phase because it may ot have bee as explicit as it was durig the acute episode. Furthermore, the experiece of disitegratio appears to be a iteral experiece which people who have experieced FEP may fid difficult to articulate. It could be beeficial to talk to sigificat others about the edurig impact of FEP o the self. This study also poits to the sources of trauma ad the rage of egative emotioal resposes cliicias could focus o i treatmet. Cliicias resposes did ot sigificatly vary accordig to their professioal backgroud. The oly theme edorsed by cliicias was viewig the illess as a ogoig problem. Cliicias were iclied to raise issues such as diagostic dilemmas, symptom presetatios ad ogoig fuctioal impairmet. This may reflect the domiat model of treatmet, which is cliical recovery. Cliical recovery reflects a medical model of the illess ad focuses o diagosis, illess duratio, the illess stage at which treatmet bega ad the level of disability. 51 A failure to recogize the rage of emotioal resposes followig FEP ad its impact o the idividual s sese of self ad relatioships with others could have a rage of cliical implicatios such as iadequately addressig the distress ad egative impact of FEP, poor treatmet adherece, ad problematic adaptatio ad itegratio of FEP. This study poits to other elemets cliicias ca focus o to improve their treatmet. For example, takig a pheomeological, self-disorder approach 52 to treatig people with FEP could reduce the impact ad distress of disitegratio. Other factors such as the impact o a cliet s relatioships, their perceived vulerability ad fear of relapse, feeligs of hopelessess, ad lack of cotrol are likely to be importat foci i treatmet. Fidigs could also ehace curret treatmet practices such as cogitively orietated psychotherapy (COPE) for early psychosis developed at Oryge Youth Health, Melboure, Australia. COPE focuses o the cliet s appraisals of themselves ad their illess ad how their sese of self has bee distorted by the psychotic episode. 53 I coclusio, this study demostrates the importace of refocusig attetio o uderstadig the impact of FEP from a broader perspective. The themes idetified i this study icluded disitegratio, estragemet, stigma, sese of loss ad deficit, recogizig the illess as a ogoig problem, ad perceived eforced treatmet. These themes poit to the impact of FEP o the perso s idetity, relatioships ad the rage of egative emotioal resposes that ca occur. Future research could examie how aspects of this trauma profile ifluece ad relate to adjustmet ad adaptatio to FEP, icludig the Wiley Publishig Asia Pty Ltd

9 J. E. Dukley et al. possibility of costructive chage. The cliical utility of targetig some of these aspects of the trauma respose could also be ivestigated. The 10 FEP participats i this study were from a rage of backgrouds ad thus the themes are likely to be relevat to other people with FEP. However, further research with differet cohorts of people with FEP is eeded to establish a broader represetatio of the themes. A large-scale quatitative study could also assist i ascertaiig how represetative these themes are amog FEP cliets. ACKNOWLEDGEMENTS We would like to thak the Alfred Psychiatry Research Cetre, especially Professor Paul Fitzgerald ad Margaret Foulds, ad ORYGEN Youth Health Research Cetre, particularly Dr Ruth Parslow ad the SHARP research team. We are also grateful to Associate Professor Amada Richdale, Felicity Butselaar, ad the idividuals ad cliicias who participated i this research. REFERENCES 1. Natioal Early Psychosis Project Cliical Guidelies Workig Party. Australia Cliical Guidelies for Early Psychosis. Melboure: Natioal Early Psychosis Project, Uiversity of Melboure, Riedesser P. Psychosis as a traumatic evet. I: Burgi D, Meg H, eds. Childhood ad Adolescet Psychosis. Basel: Karger, 2004; Tarrier N, Kha S, Cater J, Picke A. The subjective cosequeces of sufferig a first episode psychosis: trauma ad suicide behaviour. Soc Psychiatry Psychiatr Epidemiol 2007; 42: Mueser KT, Roseberg SD. Treatig the trauma of firstepisode psychosis: a PTSD perspective. J Met Health 2003; 12: Bruet K, Birchwood M. PTSD followig recovery from firstepisode psychosis: the threat from persecutors, voices, ad beig mad. Paper preseted at: The Meetig of the Sixth Iteratioal Coferece o Early Psychosis; Oct 2008, Melboure, Australia Beattie N, Shao C, Kavaagh M, Mulhollad C. Predictors of PTSD symptoms i respose to psychosis ad psychiatric admissio. J Nerv Met Dis 2009; 197: Cetofati AT, Smith DI, Altieri T. Posttraumatic stress disorder as a reactio to the experiece of psychosis ad its sequelae. Cli Psychol 2005; 9: Jackso C, Kott C, Skeate A, Birchwood M. The trauma of first episode psychosis: the role of cogitive mediatio. Aust N Z J Psychiatry 2004; 38: McGorry PD, Chae A, McCarthy E, Va Reil R, McKezie D, Sigh BS. Posttraumatic stress disorder followig recetoset psychosis. J Nerv Met Dis 1991; 179: Shaw K, McFarlae AC, Bookless C, Air T. The aetiology of post-psychotic posttraumatic stress disorder followig a psychotic episode. J Trauma Stress 2002; 15: Bedall S, Alvarez-Jimeez M, Hulbert CA, McGorry PD, Jackso HJ. Childhood trauma icreases the risk of post-traumatic stress disorder i respose to first-episode psychosis. Aust N Z J Psychiatry 2012; 46: Meuser KT, Lu W, Roseberg SD, Wolfe R. The trauma of psychosis: posttraumatic stress disorder ad recet oset psychosis. Schizophr Res 2010; 116: Bruet K, Birchwood M, Upthegrove R, Michail M, Ross K. A prospective study of PTSD followig recovery from firstepisode psychosis: the threat from persecutors, voices, ad patiethood. Br J Cli Psychol 2012; 51: Morriso AP, Frame L, Larki W. Relatioships betwee trauma ad psychosis: a review ad itegratio. Br J Cli Psychol 2003; 42: Meyer H, Taimie T, Vuori T, Aijala A, Heleius H. Posttraumtic stress disorder symptoms related to psychosis ad acute ivolutary hospitalizatio i schizophreic ad delusioal patiets. J Nerv Met Dis 1999; 187: Shaw K, McFarlae AC, Bookless C. The pheomeology of traumatic reactios to psychotic illess. J Nerv Met Dis 1997; 185: Chisholm B, Freema D, Cooke A. Idetifyig potetial predictors of traumatic reactios to psychotic episodes. Br J Cli Psychol 2006; 45: Bedall S, McGorry P, Krstev H. The trauma of beig psychotic. I: Larki W, Morriso AP, eds. Trauma ad Psychosis: New Directios for Theory ad Therapy. Lodo: Routledge, 2006; America Psychiatric Associatio. Diagostic ad Statistical Maual of Metal Disorders (DSM-IV-TR), 4th ed, text revisio. Washigto, DC: Author, Breslau N, Chase GA, Athoy JC. The uiqueess of the DSM defiitio of post-traumatic stress disorder: implicatios for research [Editorial]. Psychol Med 2002; 32: Christopher M. A broader view of trauma: a biopsychosocialevolutioary view of the role of the traumatic stress respose i the emergece of pathology ad/or growth. Cli Psychol Rev 2004; 24: Ehlers A, Clark DM. A cogitive model of posttraumatic stress disorder. Behav Res Ther 2000; 38: Fowler D. Psychological formulatio of early episodes of psychosis: a cogitive model. I: Birchwood M, Fowler D, Jackso C, eds. Early Itervetio i Psychosis: A Guide to Cocepts, Evidece ad Itervetios. Chichester: Joh Wiley & Sos, 2000; Walter M, Bates G. Posttraumatic growth ad recovery from posttraumatic stress disorder. I: Olisah V, ed. Essetial Notes i Psychiatry. Croatia: Itech, 2012; O Doell ML, Creamer M, McFarlae AC, Silove D, Bryat RA. Should A2 be a diagostic requiremet for posttraumatic stress disorder i DSM-V? Psychiatry Res 2010; 176: Amstadter AB, Vero LL. Emotioal reactios durig ad after trauma: a compariso of trauma types. J Aggress Maltreat Trauma 2008; 16: Jackso C, Iqbal Z. Psychological adjustmet to early psychosis. I: Birchwood M, Fowler D, Jackso C, eds. Early Itervetio i Psychosis: A Guide to Cocepts, Evidece ad Itervetios. Chichester: Joh Wiley & Sos, 2000; McGorry PD, Yug A. Early itervetio i psychosis: a overdue reform. Aust N Z J Psychiatry 2003; 37: Gumley AI, MacBeth A. A trauma-based model of relapse i psychosis. I: Larki W, Morriso AT, eds. Trauma ad Psychosis: New Directios for Theory ad Therapy. Lodo: Routledge, 2006; MacDoald E, Sauer K, Howie L, Albisto D. What happes to social relatioships i early psychosis? A pheomeological study of youg people s experieces. J Met Health 2005; 14: Wiley Publishig Asia Pty Ltd 219

10 The trauma of first-episode psychosis 31. Williams-Keeler L, Millike H, Joes B. Psychosis as a precipitatig trauma for PTSD: a treatmet strategy. Am J Orthopsychiatry 1994; 64: Biggerstaff D, Thompso A. Iterpretative pheomeological aalysis (IPA): a qualitative methodology of choice i healthcare research. Qual Res Psychol 2008; 5: Perry BM, Taylor D, Shaw SK. You ve got to have a positive state of mid : a iterpretative pheomeological aalysis of hope ad first episode psychosis. J Met Health 2007; 16: Larki M, Watts S, Clifto E. Givig voice ad makig sese i iterpretative pheomeological aalysis. Qual Res Psychol 2006; 3: Smith JA, Osbor M. Iterpretative pheomeological aalysis. I: Breakwell GM, ed. Doig Social Psychology Research. Chichester: Wiley-Blackwell, 2007; Willig C. Itroducig Qualitative Research i Psychology: Advetures i Theory ad Method. Buckigham: Ope Uiversity Press, America Psychiatric Associatio. Diagostic ad Statistical Maual of Metal Disorders (DSM-IV), 4th ed. Washigto, DC: Author, World Health Orgaizatio. The Iteratioal Classificatio of Diseases (ICD-10), 10th ed. Geeva: Author, America Psychiatric Associatio. Diagostic ad Statistical Maual of Metal Disorders (DSM-III-R), 3rd ed. revisio. Washigto, DC: Author, Sheeha DV, Lecrubier Y, Harett-Sheeha K et al. The Mii- Iteratioal Neuropsychiatric Iterview (M.I.N.I.): the developmet ad validatio of a structured diagostic psychiatric iterview for the DSM-IV ad ICD-10. J Cli Psychiatry 1998; 59 (Suppl. 20): Kay SR, Fiszbei A, Opler LA. The Positive ad Negative Sydrome Scale (PANSS) for schizophreia. Schizophr Bull 1987; 13: Overall JE, Gorham DR. Brief Psychiatric Ratig scale. Psychol Rep 1962; 10: Sigh MM, Kay SRA. A comparative study of haloperidol ad chlorpromazie i terms of cliical effects ad therapeutic reversal with beztropie i schizophreia: the theoretical implicatios for potecy differeces amog euroleptics. Psychopharmacologia 1975; 43: Leucht S, Kae JM, Kisslig W, Hama J, Etschel E, Egel RR. What does the PANSS mea? Schizophr Res 2005; 79: Early Psychosis Guidelies Writig Group. The Australia Cliical Guidelies for Early Psychosis, 2d ed. Melboure: Oryge Youth Health, Dukley JE, Bates GW, Foulds M, Fitzgerald P. Uderstadig adaptatio to first-episode psychosis: the relevace of trauma ad posttraumatic growth. Australas J Disaster Trauma Stud 2007; 1 [Cited 3 Jul 2007.] Available from URL: issues/ / dukley.htm 47. Cermolacce M, Naudi J, Paras J. The miimal self i psychopathology: re-examiig the self-disorders i the schizophreia spectrum. Coscious Cog 2007; 16: Jaspers K. Geeral Psychopathology (Hoeig J, Hamilto MW, Tras.). Machester: Machester Uiversity Press, (Origial work published 1923), Laig RD. The Divided Self: A Existetial Study i Saity ad Madess. Harmodsworth: Pegui Books, Lysaker PH, Lysaker JT. Psychosis ad the disitegratio of dialogical self-structure: problems posed by schizophreia for the maiteace of dialogue. Br J Med Psychol 2001; 74: Fitzpatrick C. A ew word i serious metal illess: field begis to egage i debate with major implicatios for services. Behav Healthc Tomorrow 2002; 11: Nelso B, Sass LA. Medusa s stare: a case study of workig with self-disturbace i the early phase of schizophreia. Cli Case Stud 2009; 8: Jackso H, Edwards J, Hulbert C, McGorry P. Recovery from psychosis: psychological itervetios. I: McGorry PM, Jackso HJ, eds. The Recogitio ad Maagemet of Early Psychosis: A Prevetive Approach. Cambridge: Cambridge Uiversity Press, 1999; Wiley Publishig Asia Pty Ltd

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