Engaging young people with first episode psychosis

Kathryn Greenwood, Professor of Clinical Psychology at SPFT and University of Sussex, explains more about the EYE2 study for psychosis:

The EYE project first began in Sussex in 2011. We’d seen quite high disengagement rates through research locally. We wanted to understand why young people with psychosis disengaged from Early Intervention in Psychosis services and to do something about it.

Much of the disengagement research at this stage was large quantitative studies that looked at predictors like substance use, age, and family contact.

We wanted to do something different! We wanted to understand the experience of engagement and disengagement from the perspective of young people and their families

So, in the original project we interviewed young people who weren't using services but potentially might have need, so people in schools, colleges and homeless hostels, young people in early intervention in psychosis services and their siblings and parents.

We found five core factors that affected whether people engaged or disengaged. These were what and how we communicate with young people; the way we engage with the person's whole social network, so friends and family; the way the service responds to complex issues like medication and hospitalisation; the knowledge, attitudes and behaviours of staff; and the personal experiences of the young person. These were all key in determining whether someone engaged or disengaged.

We took all this information and consulted with Early Intervention clinicians and service leads at a regional and national level to reach a consensus on the intervention approach.

We then tested the intervention by comparing disengagement in a group of people before we started the study to a group after we implemented the intervention in Sussex and Kent

And, in this initial pilot study we found that disengagement reduced from 24% down to 14%, and the reduction in disengagement was linked to the use of the EYE approach and resources

The EYE-2 study

Following our successful pilot study in 2011-2015, we got funding for the EYE-2 project from the NIHR Health Services and Delivery Research funding stream

The EYE-2 study was a much bigger study, involving teams across the North and South of England, and rural and urban services in Manchester, East Anglia, Thames Valley, London and Hampshire.

We did an initial study to adapt our resources to better meet the needs of people from ethnic and LGBTQ+ populations. So, that included things like adding information about spiritual approaches, adapting the images we used, and addressing cultural issues directly. This study has now been published in the British Journal of Clinical Psychology.

And, we did a second study in Sussex, to finalise the EYE approach, training and resources with the clinicians who were involved initially

The final EYE-2 intervention is a team based motivational engagement intervention. It’s delivered by the whole team, but it largely focuses on the role of the key worker

The intervention is a motivational engagement approach focused on the relationship between the young person and the key worker and specifically focusing on the goals of the young person, putting these at the centre of everything, especially in the context of risk when this becomes harder. This goal focussed approach is also supported by greater involvement of the wider group of family and friends, who are invited at relevant points to support the young person as they move forward with their goals. It’s also supported by a substantial psychoeducational component with myth busting booklets and a website, co-written by service users and experts in the field to support the young person’s goals and promote engagement.

The main findings of our EYE-2 project were:

We randomised 20 teams involving 1027 young people between May 2019 and July 2020. This was the largest ever real-world whole population study of outcomes for young people in UK EIP services – no-one was excluded from the study. This is important because this means that our findings are highly representative of what happens day-to-day in EIP services across the UK.

Disengagement rates of young people from services were much lower than we expected at 16%, but this was the same across both standard EIP and the EYE-2 teams, so disengagement didn’t reduce any more because of the EYE-2 approach

Routine health and recovery outcomes improved over the year in EIP services, but this was also the same across both standard EIP and the EYE-2 approach, and didn’t improve more because of the EYE-2 approach

But … we did also have a global pandemic in the middle of the trial! This undoubtedly impacted on everyone’s engagement with services, and NHS England have been working closely with EIP services since 2016 to improve services, so this may have affected results.   

What we did see was differences in unplanned and inpatient service costs of £1200 per person, and fewer days in hospital for young people who received the EYE-2 approach, which is important to young people and their families.

We also saw in a subgroup, that people who received the EYE-2 intervention, had much better social outcomes, with six weeks more time in education and training over 12 months, and more time in employment and stable housing – but we have to be a bit more cautious with this finding as this only involved 232 young people who completed an extra questionnaire.

Overall, the Early Youth Engagement (EYE-2) intervention is a low-cost approach with psychoeducational booklets and website co-produced with service users, families and clinicians that are well-liked, safe and easy to use to engage young people and families in EIP services and to train new staff.

In future, we should aim to maximise engagement in target groups at increased risk for disengagement, who don’t want or find it hard to engage initially and also those with social-occupational goals.

We could also focus more on supporting the mental health of young people living away from home for work or study as 11% of our sample developed psychosis and then migrated across the country, many returning home to their family.