The condition of an individual at risk for psychosis is currently referred to within the Diagnostic and Statistical Manual of Mental Disorders, DSM -V (2013) as 'attenuated psychotic syndrome' (APS); however, other diagnostic nomenclatures are also commonly used to refer to the same risk condition, for example 'at-risk mental state' (ARMS), 'ultra high risk for psychosis' (UHR) or, in the Psychodynamic Diagnostic Manual (PDM-2, 2008) as the 'prodromal phase of schizophrenia'. These terms, widely used among clinicians and researchers, are rarely used in clinical practice (Kim et al. 2017) their potential stigmatizing effect. Reformulating the terms used to refer to illnesses can reduce the stigma associated with them and, as noted by Van Os and Guloksuz (2017), a low-stigma environment is crucial when working with ARMS people. In this direction, the aim of the study is to identify more appropriate and clinically meaningful diagnostic terms to describe the at risk mental state for psychosis, in order to use them in daily clinical practice, particularly in the context of psychoeducation with patients and their families/caregivers. Another objective is to understand the participants' preference about the most appropriate time and context to introduce the concept of risk. By means of a focus-group, which took place in the psychiatry department of the Niguarda hospital (Milan), we have given voice to the patients, a group of 10 adolescents with an experience of illness and intervention for a risk condition of psychosis, who generated new alternative diagnostic nomenclatures that, in their opinion, were more appropriate and less stigmatizing to define the condition they themselves experienced. Subsequently, by means of a short questionnaire, we collected the opinion of other ARMS patients, caregivers, and clinicians working in the field of mental health about the terms generated in the focus group (i.e., Tendency to Psychosis, Alteration of Psychosis, Hints of Subjectivity Dysregulation), as well as about the terms currently used (ARMS, UHR, APS). This brief questionnaire made it possible to investigate the level of understanding and informativeness of these terms, their possible stigmatizing meaning and their emotional valence. Finally, participants were able to express their opinion about what term they prefer most, whether and when to communicate this diagnostic term in clinical practice, and how much information should be disclosed to patients and families. In conclusion, the language used in psychiatry is important because it provides an understandable and accurate way to describe clinical and theoretical concepts; however, the use of labels in psychiatry has often been associated with stigma and reduced engagement with clinical services. Through this research it was possible to understand how essential it is to think of a diagnostic term that serves the patient as well as the communication of professionals. Therefore, the choice of diagnostic terms to be used must be guided by a twofold purpose: it must refer clearly and informatively both to the underlying scientific knowledge and to the symptomatic experience of patients without making them feel stigmatized.
La condizione di un individuo a rischio di psicosi è attualmente indicata all’interno del Manuale diagnostico e statistico dei disturbi mentali, DSM -V (2013) come "sindrome psicotica attenuata" (APS); tuttavia, per riferirsi alla stessa condizione di rischio sono comunemente utilizzate anche altre nomenclature diagnostiche, per esempio "stato mentale a rischio" (ARMS), “ultra high risk for psychosis” (UHR) oppure, all’interno del Manuale diagnostico psicodinamico (PDM-2, 2008) si parla di “fase prodromica della schizofrenia”. Questi termini, ampiamente utilizzati tra medici e ricercatori, raramente vengono utilizzati nella pratica clinica (Kim et al. 2017) per timore di un effetto stigmatizzante. Riformulando i nomi delle malattie è possibile ridurre lo stigma ad esse associato e, come osservato da Van Os e Guloksuz (2017), un ambiente a basso stigma è cruciale quando si lavora con persone ARMS. In questa direzione, l’obiettivo che si prefigge lo studio è quello individuare termini diagnostici più appropriati e clinicamente significativi per descrivere lo stato mentale a rischio di psicosi, al fine di poterli utilizzare nella pratica clinica quotidiana, in particolare nell’ambito della psicoeducazione con i pazienti e i loro familiari/caregiver. Un altro obiettivo è comprendere la preferenza dei partecipanti circa il momento e il contesto più appropiato per introdurre il concetto di rischio. Tramite un focus-group, che si è svolto nel reparto di psichiatria dell’ospedale Niguarda (Milano), è stato possibile dar voce ai pazienti, un gruppo di 10 adolescenti con un’esperienza di malattia e di intervento per una condizione di rischio di psicosi, che hanno generato nuove nomenclature diagnostiche alternative che erano, secondo il loro parere, più appropriate e meno stigmatizzanti per definire la condizione che loro stessi hanno vissuto. Successivamente, tramite un breve questionario, pazienti ARMS, caregivers e clinici che lavorano nel campo della salute mentale hanno espresso la loro opinione sia sui termini generati nel focus group (Tendenza alla psicosi, Alterazione della psicosi, Accenni di Disregolazione della soggettività) sia sui termini comunemente usati (ARMS, UHR, APS). Questo breve questionario ha permesso di indagare il livello della comprensione e di informatività dei termini suddetti, il loro possibile significato stigmatizzante e la loro valenza emotiva. Infine, i partecipati potevano esprimersi in merito: quale termine preferirebbero che i medici usassero per riferirsi alla condizione di rischio di psicosi, se e quando comunicare tale temine diagnostico e quante informazioni dovrebbero essere divulgate. Concludendo, il linguaggio usato in psichiatria è importante perché fornisce un modo comprensibile e accurato per descrivere concetti clinici e teorici; tuttavia, l’uso delle etichette in psichiatria è stato spesso associato allo stigma e al ridotto coinvolgimento con i servizi clinici. Tramite questa ricerca è stato possibile comprendere quanto sia indispensabile pensare a un termine diagnostico che sia al servizio del paziente oltre che della comunicazione dei professionisti. Pertanto la scelta dei termini diagnostici da utilizzare deve essere guidata da un duplice scopo: riflettere i fatti scientifici noti nel mondo dei professionisti, e, al contempo, riflettere l’esperienza sintomatica del paziente senza che esso si senta stigmatizzato.
Gli atteggiamenti di pazienti, caregiver e clinici riguardo a terminologie alternative per descrivere gli stati mentali a rischio di psicosi
CORDOVA, ELENA
2021/2022
Abstract
The condition of an individual at risk for psychosis is currently referred to within the Diagnostic and Statistical Manual of Mental Disorders, DSM -V (2013) as 'attenuated psychotic syndrome' (APS); however, other diagnostic nomenclatures are also commonly used to refer to the same risk condition, for example 'at-risk mental state' (ARMS), 'ultra high risk for psychosis' (UHR) or, in the Psychodynamic Diagnostic Manual (PDM-2, 2008) as the 'prodromal phase of schizophrenia'. These terms, widely used among clinicians and researchers, are rarely used in clinical practice (Kim et al. 2017) their potential stigmatizing effect. Reformulating the terms used to refer to illnesses can reduce the stigma associated with them and, as noted by Van Os and Guloksuz (2017), a low-stigma environment is crucial when working with ARMS people. In this direction, the aim of the study is to identify more appropriate and clinically meaningful diagnostic terms to describe the at risk mental state for psychosis, in order to use them in daily clinical practice, particularly in the context of psychoeducation with patients and their families/caregivers. Another objective is to understand the participants' preference about the most appropriate time and context to introduce the concept of risk. By means of a focus-group, which took place in the psychiatry department of the Niguarda hospital (Milan), we have given voice to the patients, a group of 10 adolescents with an experience of illness and intervention for a risk condition of psychosis, who generated new alternative diagnostic nomenclatures that, in their opinion, were more appropriate and less stigmatizing to define the condition they themselves experienced. Subsequently, by means of a short questionnaire, we collected the opinion of other ARMS patients, caregivers, and clinicians working in the field of mental health about the terms generated in the focus group (i.e., Tendency to Psychosis, Alteration of Psychosis, Hints of Subjectivity Dysregulation), as well as about the terms currently used (ARMS, UHR, APS). This brief questionnaire made it possible to investigate the level of understanding and informativeness of these terms, their possible stigmatizing meaning and their emotional valence. Finally, participants were able to express their opinion about what term they prefer most, whether and when to communicate this diagnostic term in clinical practice, and how much information should be disclosed to patients and families. In conclusion, the language used in psychiatry is important because it provides an understandable and accurate way to describe clinical and theoretical concepts; however, the use of labels in psychiatry has often been associated with stigma and reduced engagement with clinical services. Through this research it was possible to understand how essential it is to think of a diagnostic term that serves the patient as well as the communication of professionals. Therefore, the choice of diagnostic terms to be used must be guided by a twofold purpose: it must refer clearly and informatively both to the underlying scientific knowledge and to the symptomatic experience of patients without making them feel stigmatized.File | Dimensione | Formato | |
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https://hdl.handle.net/20.500.12608/30621