Bringing experience and research together to understand psychosis

Recently a group of researchers, clinicians and people with lived experience worked on a project to depict psychosis in a way that better represented the range of experience. The result was a research paper in the journal World Psychiatry and in this blog the authors talk about this novel approach and the value it brings. It includes direct quotes from some of the authors about the project.

Psychotic disorders are among the leading global causes of health-related disability. In England, it is estimated that 10,700 people aged 16-64 will start treatment for psychosis during the year 2022. Psychotic experiences are a core feature of various mental disorders, such as schizophrenia, but they can also be a component in many other mental and physical health conditions such as bipolar disorder, severe depression or brain tumours.  

Still, psychosis remains one of the most misunderstood mental health disorders and, due to this misunderstanding, is often associated with stigma and misconceptions.

Understanding the range of symptoms of people with psychotic disorders

People with psychosis often experience one or both of two core symptoms: hallucinations where they perceive something that other people don’t, and delusions where they hold certain judgements with total conviction despite evidence to the contrary. Hallucinations can affect all the senses and take various forms including auditory which can be referred to as voice hearing or hearing voices and visual where an individual can see things that are part of their alternative subjective reality.

Typically, psychotic disorders progress through a series of phases, from a time before symptoms are observed through to a potential later phase where symptoms have been present for some time.  

However, after onset, the course that psychotic disorders take can vary extensively between individuals: some can experience a full recovery, while others might continue to experience symptoms throughout most of their lives.

Understanding and explaining this range of experience is vital to researchers, clinicians, people with lived experience and their carers and families.

“I have found that definitions and material on psychosis are either too simplified and general (dumbed down and abstract) so do not have that personal connection. Or they are too research based/academic and slightly unworldly. This first-person account allows for a blend and will be of interest and benefit to both clinicians and patients alike. In terms of understanding psychosis - having this narrative certainly has solidified my understanding and gives me, as a person who has experienced psychosis, the confidence in the diagnosis and the comfort that others have shared similar experiences in a language that I can now use with certainty when telling my story.” Nicholas, co-author

Clinical phases of psychotic disorders

Co-writing as a novel approach to exploring the lived experiences of psychosis

Psychotic experiences can be very hard to comprehend and communicate, often leading to feelings of isolation. Over the past decades, a rekindled interest in the first-person perspective of mental disorders has led to many new studies and approaches with a focus on the lived experiences of psychosis, among many other mental disorders.

The aim of our project was to uncover common experiences across different stories of individuals living with psychosis in their own voices and words. As a group of academics and people with lived experience we reviewed first-person accounts of psychosis and co-wrote the findings into a paper. Co-writing represents a novel approach where academics, clinicians, and individuals with lived experiences work collaboratively to produce a piece of research.

“Letting patients have a voice of their own and one that is - as much as possible - free of academic and clinical preconstructed vocabulary, will boost their confidence in opening up about their (our) most troubling experiences. The ones that go undetected even with the finest rating scales and interview protocols and inform the grief people go through and the structuring of their psychiatric symptoms. On the one hand, this will hopefully make clinicians understand that patients have more to say than could be let on; on the other hand, it could provide us with a new and finer vocabulary to classify the troubling experiences of patients and help them through their recovery.” Lorenzo, co-author

Involvement in the project worked on different levels. A core collaborative team searched for first-person accounts published in scientific journals, autobiographies, and compilation books and, from these sources,  a set of common themes around experience was identified. These themes were shared in a series of virtual collaborative workshops with a larger team who, through discussion, decided upon a final selection. Collaborators were invited to participate in the process of writing and editing the research paper. In addition, network maps were used to create a visual representation of other themes that sat beneath the higher level ones and the relationships between the themes.

The final manuscript was divided into two sections: the lived experiences of psychosis across its clinical stages, and the lived experience of receiving treatment across different health care settings. This is the first time such a large-scale co-writing project has been implemented in the field of psychosis.

“The study has provided a chronology and a unique map to look at schizophrenia more effectively. I am sure it will be an incentive for other organisations to develop their own methodologies to provide us with more and more useful knowledge. Understanding the condition and improving the care needed for recovery is precisely the kind of support we need. Taken together, these studies can help those seeking to find new and innovative pharmaceutical, cognitive and alternative methods for recovery.”  Péter, co-author

Stages during the process of co-writing the manuscript

Themes of experience across the different stages of psychosis

Each of the clinical phases of psychosis was characterised by a particular set of experiences and challenges.

The early stages (premorbid and prodromal phases) involved, among other, experiences of confusion and feeling distant from the world. Alongside confusion there can also be amazement and attempts to make sense of, or explain, these experiences. There were also feelings of perplexity and uneasiness in the sense of self, which at times were present since childhood or teenage years, in addition to attempts to keep these experiences hidden from others as symptoms start to get worse.

The first-episode of psychosis was reflected as an intense and often overwhelming experience, at times involving a short-lived sense of relief. During this phase, individuals describe experiences of loss of agency, fragmentation of the boundaries between self and the world becoming fragmented, dissolution of the sense of self, and social withdrawal. At this time people can form an identity and self-image that makes them feel both special and different from others.

Finally, during the later stages (relapsing and chronicity) many individuals experienced grieving a series of personal losses resulting from the disorder, as well as having to work towards accepting and coping with the constant inner chaos, the new self, the diagnosis and an often uncertain future.

“I think the general principles of self-management can mostly be applied to everyone whether they have experienced psychosis or not. It is true that self-awareness and acceptance of the new self/world are an important realisation in management. I think this acceptance could be facilitated by professionals a bit more rather than medicate and forget. Grieving for a lost identity or place in the world is still grief and a greater understanding from all professionals could certainly help. This could really help as an outcome of this work.” Nicholas, co-author

Experiential themes across clinical stages of psychosis

Importantly, in the study we do not assume that the emerging themes are representative of all people affected by psychosis. Psychotic disorders manifest in multiple and idiosyncratic forms, and each life experience is unique. As such, there are as many “lived experiences” as there are individuals with psychosis, as well as relatives, friends and caregivers who have joined them in their journeys.

“The real value of co-writing rests on the possibility of reflecting an equal partnership between clinician and patient, first experienced in the therapeutic process, then translated into academic research for the benefit of both the clinical community and the patients, along with their caretakers.” Lorenzo, co-author

We believe the publication of this co-produced paper will be a valuable addition to the body of research on people who experience psychosis. By gathering the first-hand experiences of individuals with psychosis across the different clinical stages, we hope our work will allow people to better understand how individuals with psychosis experience the world, their relationships with others and with psychotic experiences, and hopefully provide insight into how we can best support them. Our work aims to give a voice to many service users and their families worldwide and demonstrate that although psychosis is one of the most painful and upsetting existential experiences - so dizzyingly alien to our usual patterns of life - it is also so unspeakably enigmatic and human.

“I really hope more people who have experienced psychosis get to see this paper. As a contributor, making sense of my own experience, gaining insight into the world of others and contributing to our understanding of a misunderstood topic all feature highly as reasons to get involved and co-write in research.” Nicholas, co-author

Read the manuscript “The lived experiences of psychosis” published in World Psychiatry in June 2022.