People with psychosis are more likely to also have long-term physical illnesses, with a life expectancy 15-20 years lower than average . In turn, people from black and minority ethnic communities are more likely to experience psychosis but also face greater social disadvantages and poorer access to care.
The Co-PICS study, led by researchers in the Department of Psychiatry at Oxford University and funded by the National Institute for Health and Care Research (NIHR), aims to understand how health and social services can improve the care of diverse groups of people living with psychosis and other illnesses (multi-morbidity).
The £1.7 million study will initially engage 80 people with psychosis from rural and urban areas across England, as well as 40 carers and health professionals to share their stories. The experiences shared will inform a series of collaborative discussions to consider and develop ways to improve care experiences. This programme of research will take place over more than three years in multiple sites across England.
Professor Kam Bhui in the Department of Psychiatry, University of Oxford, is leading the study. He said:
“People from racialised backgrounds experience higher levels of psychosis, multiple other social disadvantages, are less likely to have access to or support from a GP and feel greater dissatisfaction with care.
“Conventional approaches to research and care in this area are not suited to tackling the more complex health conditions with multiple causes that many diverse people with psychosis experience.
“That is why I am thrilled that we can launch Co-Pics, which uses creative methods to help us to understand experiences. This will show how multiple illnesses evolve in the context of trauma, discrimination and other disadvantages.
“Our study aims to improve the care of diverse people living with psychosis and multiple long-term physical conditions by first learning about their lives and the care they have received and then co-designing with them resources based on their experiences.”
Researchers will ask participants to share their experiences using ‘photo-voice’ and other creative approaches. They will take or bring in pictures or other creative arts products (painting, poetry, self-made audio or video commentary), followed by reflective discussions and biographical storytelling interviews.
Using stories, participants will then co-design resources for use in practice, training and policy. The resources developed will then be evaluated for use and impact at case study sites across the country.
Peer researcher Doreen Joseph said:
“I learned through psychotherapy that I was not the only one who had experienced schizophrenia, and that it was a natural reaction to traumatic childhood experiences which had been catalysed by adverse events in adulthood like marriage break-up, financial difficulties, overwork and the stresses and worries of parental responsibilities. These were compounded by racial oppression however blatant or subtle. My mental and physical health suffered greatly.”
The McPin Foundation is a mental health research charity and one of the partners on the project. McPin is supporting lived experience involvement through the advisory panel and peer research team.
A peer researcher from the McPin team, who prefers to be anonymous, said: “Co-Pics is important because it seeks to understand the experiences of ethnically diverse people living with psychosis and multiple health conditions, and how to better improve care services for them.
“As we know, people affected by this are more likely to have a shorter life-expectancy and poorer access to care so giving them the platform to utilise their lived experience to improve these things for them is the important kind of work we strive to do at McPin.
“Research and care services that were not designed with these people in mind need to be better amended to actually work for them, who better to do so than those directly affected.”
The research will be underpinned by syndemic theory, which until now has been primarily used to investigate infectious diseases, including HIV – and enables researchers to take account of adversity and social contexts that might affect health and wellbeing.
Partners on the project include the McPin Foundation, University of Manchester, Royal Holloway, Greenwich University, Queen Mary University of London, University of York, Birmingham University, Aston University and University of Cambridge.
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