The Co-Pics study will work with diverse people living with psychosis and other long-term physical health conditions. It will aim to understand how health and social services can improve the care of diverse groups of people living with psychosis and other illnesses (multi-morbidity).
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.
Co-Pics will be led by Oxford University and is funded by the NIHR.
Empowering the voices of individuals who are seldom heard is vital to ensure equitable care access and outcomes. We are delighted to be partnering with colleagues at the University of Oxford on this important initiative, which will give voice to our diverse communities here in Birmingham.Dr Siân Lowri Griffiths, University of Birmingham
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.
Rachel Upthegrove, Professor of Psychiatry and Youth Mental Health at the University of Birmingham said: “This is an exciting multi-disciplinary project working with participants, peer researchers and academics using really innovative and exciting methods to deeply understand experiences of psychosis.”
Dr Siân Lowri Griffiths, an Assistant Professor in the School of Psychology at the University of Birmingham will be collaborating on the project. She said: “We repeatedly see stark inequalities in both mental and physical health outcomes for minoritized and marginalised groups, which is often compounded by intersecting social disadvantages in place across the life course. Empowering the voices of individuals who are seldom heard is vital to ensure equitable care access and outcomes. We are delighted to be partnering with colleagues at the University of Oxford on this important initiative, which will give voice to our diverse communities here in Birmingham."
Researchers will ask participants to share their experiences using ‘photo-voice’ and other creative approaches, such as painting, poetry, and 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.
This is an exciting multi-disciplinary project working with participants, peer researchers and academics using really innovative and exciting methods to deeply understand experiences of psychosis.Professor Rachel Upthegrove, University of Birmingham
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, and enables researchers to take account of adversity and social contexts that might affect health and wellbeing.
Professor Kam Bhui in the Department of Psychiatry at the University of Oxford, who is leading the study, 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.”
Other partners on the project include the McPin Foundation, the University of Manchester, Royal Holloway, Greenwich University, Queen Mary University of London, the University of York, Aston University and the University of Cambridge.