Psychotic Disorders: The Plurality of Lived Experience and How to Target Intervention Programmes

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“I feel pressure”. “I feel lost”. “I feel like the world is changing”. 

When a patient is referred to the NHS for treatment of psychosis, it becomes protocol to slap on a diagnosis: Acute psychotic disorder (F23). But what does this mean for the patient? Experiences in psychosis are personal and idiosyncratic. The truth is, we don’t know enough about psychosis or its symptoms to know how it will affect each person’s life differently and a simple diagnosis is not always a true reflection.

So, What is Psychosis?

Psychosis is a mental health disorder, commonly characterised as detachment from reality. Its symptoms include delusions, hallucinations, and other negative symptoms. But the ‘side effects’ of the disorder don’t stop at its symptoms. A recent study by Fusar-Poli and colleagues  stated that looking at the theory behind psychotic symptoms, without applying it to real experiences, simply does not make sense. Instead, looking first at the actual experiences of patients, before involving psychological theory, provides a much better insight into what is happening beyond the biology of the disorder. 

The study by Fusar-Poli looked at each stage of psychosis, from before developing symptoms up to institutionalisation. Just to name a few, patients reported feeling a sense of loss, confusion, and withdrawal from society. Given the variation in these psychological and social outcomes, we decided to focus our study on the next step in understanding psychosis to attempt to link these individual experiences to specific symptoms; slowly bridging the gap between lived experience and theory and thereby reducing the amount of time spent in recovery.

Stages of Psychosis

Finding Relationships 

The NHS has been collecting data on these cases for years but we still have a limited understanding of how the different types of consequences patients face could relate. Our study investigated how psychological (e.g., happiness, disgust, anxiety) or social (e.g., isolation, family relationships, legal problems) consequences were related to specific delusional themes experienced during psychosis. Delusional themes are the content of a delusion – “Someone is following me”, “my partner is cheating on me”, “I can read minds”. Delusions have commonly been associated with problems such as anxiety, lack of self-esteem and many other psychosocial consequences. We pose the question: are there specific psychosocial consequences associated with specific delusions? And a quick glance at the results suggest – yes!

We used patient records from an early intervention in psychosis service in the NHS, including documents such as police reports, therapy session notes, and text/phone conversation transcripts to get a deeper understanding of the delusions and consequences that patients experienced over a 2-year timeline.

Visualising Hierarchies to Find Patterns

The results were then analysed to see whether sub-groups, or “clusters” existed in the data that linked delusions to specific consequences. These results are represented in the figure as a special type of data visualisation called a tree-map, which represents hierarchical data using nested rectangles, with each rectangle’s size representing a proportional value of the data it represents.

The tree-maps show that there are 12 sub-groups for psychological and social consequences. Most groups had either a delusion or consequence in common. For example, one group had consequences associated to only somatic delusions (delusional beliefs about the body) such as, increased disgust and increased isolation. Another cluster had all of the delusions associated with increased anxiety such as, delusion of guilt, sin, and jealousy.

Persecutory delusions were the most common of all delusional themes (71.6%). These are commonly associated with beliefs around being mistreated, harmed, threatened, or conspired against. The most common consequences of persecutory delusions are increased anxiety (17.50%), worry (8.11%), anger (10.10%), conflict with family members (10.10%), and isolation (8.25%).

The clusters in the tree-maps may indicate that there are “delusion profiles” associating one or more consequences to a delusion or vice versa. This could support clinicians with Case-Based Reasoning Systems to improve psychological intervention.

Have a play and interact with the tree-maps yourself to see if you can find any patterns of your own!

But what does this tell us?

Syd Barrett, Van Gogh, Zelda Fitzgerald, are only a few of the well-known people to experience psychotic symptoms. Some say that their delusions and hallucinations help them channel their creativity. Nevertheless, most of the time it is not these positive outcomes, but very negative ones that have the most lasting effect on patients. 

We not only gain a deeper theoretical understanding of how life consequences are intertwined with psychosis but also arm clinicians with an unparalleled framework to re-structure their sessions. Armed with these results, clinicians can now ask more precise questions and zero in on consequences that might not even have surfaced yet.

The sub-groups we’ve uncovered provide a framework for clinicians to support isolated patients. Clinicians can leverage this data to normalise patients’ experiences, which is crucial post-pandemic due to the sharp rise in people reporting psychotic symptoms. In April 2021, there were over 9,000 referrals to NHS services – a 29% rise compared to pre-pandemic.

The Next Steps

The problem with such a novel addition to the field, is exactly that – it is so new. That means that there is no prior hypothesis to confirm or literature to back it up. Also, while we looked at a large sample of 400 patients, the plurality of experiences resulted in many small sub-groups. We cannot be sure that these outcomes will be present in every patient with psychosis. What we can say is that it is a “foot in the door” for further research.

The relationships found in these subgroups could be indicative of a deeper understanding of diagnoses, and expand traditional therapeutic targets that services prioritise. While we cannot predict a consequence from a delusion, we can certainly say that there are trends, and the more we know about these trends the more targeted our psychological interventions can be. After all, understanding what it is like to live with psychosis and receive psychiatric treatments is the foundation for implementing effective care practices for individuals with psychosis.

References

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