Do you want to understand delusions? Listen to the people who have them

For the first time Decades of Sohee Park’s career in schizophrenia research, she rarely reflected on what life was like for her research subjects. Now a professor of psychology at Vanderbilt University, Park made his name studying working memory — the fast, notepad-like memory that helps us keep track of what we’re doing. By using simple tasks to deconstruct the workings of the schizophrenic brain, Park hoped to uncover the underlying causes of the disorder’s reality-bending symptoms — such as delusions, false beliefs that resist conflicting evidence, and hallucinations, which often take the form of imagined voices.

“We do symptom interviews all the time, where we ask regular questions about symptoms — and these are very standardized, which is what we should be doing,” she says. “We never just talk about life, or their philosophy of life, or how they feel about their condition in general.”

Psychological research into schizophrenia usually looks something like this: A person who has been diagnosed with schizophrenia, or another condition that causes a similar psychosis, takes test after test. Usually one of these is the PANSS, or “Positive and Negative Syndrome Scale.” Taking this test is generally the only time the researcher asks his subject about their actual experience of psychosis – and everything the subject says is distilled into numerical scores from 1 to 7. For the PANSS, this is a grandiose delusion (“I am the second coming of Jesus”) is the same as a persecution delusion (“Someone is trying to kill me”) is the same as a referential delusion (“Everyone is talking about me”).

For a number of years, Park has taken a different approach: she asks open questions to her test subjects. She has heard about things far beyond the boundaries of the PANSS, such as out-of-body experiences; imagined presences; and deep, day-long flow states caused by painting. Her research now focuses mainly on how people with schizophrenia experience their own bodies.

Within psychiatry, Park’s focus on personal experience is unusual. Academic psychologists have long favored quantitative and neuroscientific methods, such as symptom checklists and brain scans, over hard-to-quantify personal stories. But while they pose analytical challenges, these stories can still be studied. Last month articles appeared in widely read magazines – an op The Lancet Psychiatry and the other in World Psychiatry– have analyzed first person analyzes of delusions and psychoses. To some, this kind of research, which deals with words and ideas rather than numbers and mathematical models, seems unscientific. But Park, who was not involved in either study, is among a small group of philosophers, psychologists and neuroscientists who believe that first-person accounts provide a better understanding of what psychosis is and how it works. “In the rush to be accepted by biological and physical scientists,” she says, “what we’ve left behind is, who is experiencing this stuff? Who are the people who are actually having these experiences?”

This neglect begins at the time of diagnosis. In the Diagnostic and Statistical Manual (DSM), the so-called bible of psychiatric diagnosis, conditions are defined as scorecards: You must have X of these Y symptoms for Z months to have a particular mental illness. The original purpose of this system was to facilitate research by providing an objective basis for deciding who had a mental illness and who did not. But these checklists leave little room for the complexities of real life. “During my daily encounters with patients, there was little resonance between what I was listening to in terms of the lived experience – the complexity and the nuance and detail and the context, the life context this person was describing – and these very limiting boxes that you tick as diagnose or consider treatment,” said Rosa Ritunnano, a psychiatrist and PhD candidate in interdisciplinary mental health research at the University of Birmingham, and the lead author of the paper in The Lancet Psychiatry

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