Here Martino Belvederi Murri (University of Ferrara) discusses research on epistemic justice and dignity for people with psychosis. A version of this post appeared on the EPIC blog in July 2024.
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| Martino Belvederi Murri |
Individuals experiencing acute psychosis in inpatient psychiatric settings face unique challenges. Consider the case of Jake, a student who is struggling between familial conflicts and economic difficulties, as well as choices related to his life career. Auditory hallucinations may take the form of “voices” that comment on his everyday actions, and may lead Jake to think that people spy on him with malevolent intent. These symptoms can lead to angst and withdrawal from social activities, possibly culminating into severe anxiety and agitation.
The grave societal stigma that is attached to mental illness exacerbates feelings of isolation and diminishes help-seeking. The promotion of patient empowerment is a key component of recovery, and is increasingly seen as a duty of healthcare providers (Larkin and Hutton 2017). People like Jake desire respect and understanding by healthcare providers, need clear and empathetic communication, and want genuine involvement in decision-making (Stovell et al. 2016). Core themes in inpatient treatment are those of powerlessness, quality of care environment, relationship to staff, psychological and physical impact of involuntary treatment, and coercive practices.
Mood and morale
The experience of psychosis in itself and coercive treatment might constitute a “double hit” for the individual’s sense of self-worth, mood, hope, morale. Enhanced insight into one’s mental health is a desirable condition, but can paradoxically lead to adverse outcomes, a phenomenon often referred to as the “insight paradox” (Lysaker, Roe and Yanos 2007, Belvederi Murri et al. 2016).
This paradox suggests that insight can also lead to increased distress and depression: patients who gain a clear awareness of their psychosis often experience a profound sense of loss and sadness over their perceived decline in personal and social identity. It is particularly evident among people who hold self-stigmatizing beliefs.
Demoralization may also manifest in patients with chronic psychotic illnesses, but also affective disorders, as loss of hope after a lifetime of struggling with an illness (Grassi et al. 2020) and may be expressed as reduced quality of life. As patients become more cognizant of how they are perceived and treated by others due to their illness, this can exacerbate feelings of hopelessness and low self-worth. However, the effect is tempered by better relationship with the carers.
On one hand, insight can empower patients, allowing for better self-management and informed decision-making; on the other, it can heighten awareness of stigma, the possible chronicity of their condition, and the impact on their life goals, thereby contributing to depressive symptoms or even suicide (Berardelli et al. 2021). Addressing the insight paradox in treatment planning requires fostering an environment that promotes insight while simultaneously providing robust emotional support and therapeutic interventions to mitigate the distressing impact of such insights.
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| Hearing voices |
Psychosis and epistemic injustice
The concept of epistemic injustice is particularly relevant both for the consequences of psychosis (as a clinical phenomenon) and for the experience of treatment. Individuals with psychosis often find themselves at the intersection of testimonial and hermeneutic injustices, where their capacity to know and communicate their experiences is unfairly discounted due to the nature of the illness and to the internal or external stigmatization of their condition (Smyth 2021, Kidd, Spencer and Carel 2022).
Testimonial injustice may occur when an individual's account of their experiences is disregarded or deemed unreliable, not because of the content of their testimony but because of prejudicial beliefs about their capacity to know (‘identity-prejudicial’ stereotype). For individuals with psychosis, this form of injustice is all too common, as the hallmark symptoms of their condition—delusions and hallucinations—are often dismissed as mere artefacts of their illness, rather than expressions of lived reality.
Patients with psychosis are judged not to have capacity and are considered completely unreliable in all aspects of their testimony, not just in regard to the content of a particular delusion or hallucination. But psychosis does not necessarily invade all realms of mental functioning and in many instances, patients may hold reliable accounts of a large proportion of their reality and experience.
The generic, “by default”, dismissal of the whole testimony of people with psychosis not only silences their voices but also impedes their recovery by fostering feelings of isolation, alienation from the healthcare system and society at large (Lysaker and Lysaker 2010).
It could be argued that a person experiencing psychosis does also risk to commit testimonial injustice on themselves, by judging the self-experience of the world less reliable than it is, and by developing what is called self- or internalized stigma, which is particularly relevant for subsequent loss of self-esteem (Fernández et al. 2023).