<999 words, 5-minute read> Unlike how psychotic disorders are depicted in the media, there is not just hearing voices and paranoia. The stories patients tell are often fundamentally different. To treat this complex disorder, we need to listen to their experiences. We have to give them a voice. Our study offers novel insights from a diverse psychosis sample, the largest to-date.
| These artworks are part of the Sound and Vision project in which local artists and people with schizophrenia worked together to show what experiencing hallucinations feels like. |
What is Known about Psychotic Disorders?
- Firstly, delusions and hallucinations are common symptoms of psychotic disorders and frequently occur together, more often than on their own. We can understand delusions as fixed beliefs someone insists on even when proven wrong and hallucinations as perceiving something that does not exist.
- Delusions and hallucinations can appear in great variety. Lets look at some examples. Delusions can range from grandiose delusions (belief that you have a special status, powers, knowledge), to delusions of sin (belief you have greatly sinned) and delusions of thought insertion (belief that thoughts not belonging to you were placed in your mind). Hallucinations are categorised by how they are sensed, i.e. their modalities, including auditory, gustatory, olfactory, tactile, and visual. For a better overview, watch this short video.
- Delusions can be polythematic (multiple themes), hallucinations multimodal (multiple modalities).
- Treatment options include antipsychotic medication and talking therapies. Intervening early reduces the chance of relapse. Promising is that blood tests recently revealed biomarkers for psychosis. This means that, in the future, hallucination and delusion risk could be assessed more easily and before psychotic symptoms develop.
- Psychosis is more common than you would expect. Approximately 3% of the population experience a psychotic episode in life. Certain risk factors (e.g. cannabis consumption) might increase this chance but anyone can develop a psychotic disorder!
And What do Patients say About Living With Psychosis? Read for Yourself:
“They treated me like an object. They didn’t explain anything. They didn’t even say, ‘Look, we’re going to do this or that’. Not a single word of reassurance. ‘Look, don’t worry, nothing bad will happen’… Before that, I’d never been treated as if I couldn’t understand things.”
“When you’re very unwell, knowing that you can call your doctor and talk to him, that’s priceless, really.”
If anything, these quotes from interviewed psychosis patients show how important focussing on their needs is. And these are, unfortunately, not always met.
Especially problematic is that delusions and hallucinations are connected to harmful stereotypes. These symptoms are often seen as crazy and dangerous. This misinformed attitude makes living with psychosis additionally difficult.
Why is our Study so Important?
- We focused on the lived experiences of psychosis, an important aspect of the NHS long term plan. Unlike restrictive meta-analyses questionnaires, we captured the reality of psychosis patients from all walks of life.
- Many studies examined delusions and hallucinations separately, but neglected that these commonly co-occur; rarer delusional themes are often not included or grouped together. We looked at patterns across 5 hallucination modalities and 21 delusional themes.
- Ethnic minorities are significantly underrepresented in previous studies; we included psychosis patients of 28 ethnicities and 14 religions.
Research Question:
How do delusional themes and hallucination modalities bunch together?
Because no existing psychosis sample compares to the size and diversity of ours, we explored the data freely without hypotheses.
Our Study Design:
Our patient data stem from the Lived Experience Symptom Survey (LESS), a quality improvement project of the Early Intervention in Psychosis Service of Harrow & Hillingdon led by Dr. David Raune. This dataset was collected to analyse how the NHS can offer more efficient treatment for early psychosis patients.
(1) A team of assistant psychologists looked through the NHS records of 656 patients with hallucinations and/or delusions – meaning psychiatrist assessments, progress notes (in which healthcare staff document how a patient’s wellbeing develops), and police records.
(2) From the patient records we collected all information on hallucinations and delusions in separate forms for each patient.
(3) By going through every form, we classified which of the 21 delusional themes and 5 hallucination modalities were present in each patient.
(4) A statistical method called Principal Component Analysis was used to create a model that best explains the patterns in the patient data. We sorted the delusional themes and hallucination modalities into 10 groups of frequently co-occurring symptoms.
How can we use our Results?
Detecting patterns of co-occurring hallucinations and delusions can help to identify their cause and the affected brain region. We might be able to define psychosis subtypes.
We will directly present our findings to NHS staff. Once informed about co-occurring delusions and hallucinations, they can provide more personalised care and improve the experience of patients.
To Consider:
- Our assistant psychologists were trained with limited resources. Their classification of delusions/hallucinations is less reliable than a psychiatrist’s assessment.
- Not all delusions and hallucinations might have been reported. Clinical staff routinely neglects to ask about rarer symptoms and patients hesitate to disclose (another effect of stigma!)
- Data from patient records can be inaccurate/missing; hallucinations and delusions are easily confused (e.g. tactile hallucination and somatic delusions both describe bodily sensations).
Key Takeaways
Investigating the psychosis symptoms is key to dissolving stigma patients still face today.
Our study amplifies the voices of psychosis patients.
What’s Next?
The LESS sample is growing towards 1000 psychosis patients. A sample that large would allow to investigate rarer delusions/hallucinations. Future research could analyse if some age or ethnic groups are more likely to develop a certain combination of hallucination and delusion – there are numerous possibilities to explore the sample.
Lastly, a link will appear here when our study is published – so keep an eye on it! We want to encourage you to get involved and check out our list of further resources.
References
- American Psychological Association. (n.d.). Psychotic disorder. In APA dictionary of psychology. Retrieved April 20, 2024, from https://dictionary.apa.org/psychotic-disorder
- Contie, V. (2024, February 27). Blood test may predict psychosis risks. National Institutes of Health. https://www.nih.gov/news-events/nih-research-matters/blood-test-may-predict-psychosis-risks
- Guvenek-Cokol, P. E. (2022, October 25). Psychosis: Will catching early warning signs help? Harvard Health Publishing. https://www.health.harvard.edu/blog/psychosis-will-catching-early-warning-signs-help-202210252838
- Villena-Jimena, A., Morales-Asencio, J. M., Quemada, C., & Hurtado, M. M. (2023). “It’s That They Treated Me Like an Object”: A Qualitative Study on the Participation of People Diagnosed with Psychotic Disorders in Their Health Care. International journal of environmental research and public health, 20(5), 4614. https://doi.org/10.3390/ijerph20054614
- (2023, October 17). Why science needs lived experiences of mental health challenges. https://wellcome.org/news/why-science-needs-lived-experiences-mental-health-challenges
- Paolini, E., Moretti, P., & Compton, M. T. (2016). Delusions in first-episode psychosis: Principal component analysis of twelve types of delusions and demographic and clinical correlates of resulting domains. Psychiatry research, 243, 5–13. https://doi.org/10.1016/j.psychres.2016.06.002
- Dudley, R., Watson, F., O’Grady, L., Aynsworth, C., Dodgson, G., Common, S., Day, B. A., & Fernyhough, C. (2023). Prevalence and nature of multi-sensory and multi-modal hallucinations in people with first episode psychosis. Psychiatry research, 319, 114988. https://doi.org/10.1016/j.psychres.2022.114988
- Central and North West London NHS Foundation Trust. (2022, September 21). International Symposium organised by CNWL staff on Early Intervention in Psychosis. https://www.cnwl.nhs.uk/news/international-symposium-organised-cnwl-staff-early-intervention-psychosis
Credits
- Artworks by Fiona Blake and Jennifer Caroline Campbell: https://soundandvision.org.uk/exhibition
- Video from YouTube: https://youtu.be/3bg5TL7AwgU?si=1Vw6vY-bbMFUmA06